Received a letter that my GI doc and Rheum Doctor are leaving.  I am not surprised.  The GI care in Central Oregon at this particular facility really sucks!  I have been a patient there for over 10 years, frankly I don't think they really care at all about their patients.  They are all there for the money.  Seems to be huge lack of empathy for the really sick in this department and it feels like they are really there just to do procedures. No wonder they are having such a hard time getting doctors to come there.  This isn't just my opinion, I have heard the same from others.  I guess its comforting that I am not the only one who feels like they just plain suck!  Why would you become a doctor and see patients and not have some compassion and follow through to their care.  They are just there to spend their allotted 3 minutes with you and never hopefully have to talk to you again.  I think they are just being pushed to see too many patients. If the doctors were actually given the appropriate amount of time and follow up to take care of you I am certain they would give it their all and you would have good care.  It didn't used to be like this.  They have lost sight of their true reason for being in this particular practice.  Shame on them for giving in to the powers at be and letting it get this bad.  This is not a good area to live in if you are sick with bowel problems. 

As I was watching the History Channel this morning I found it interesting that John Kennedy was diagnosed with Colitis.  While he lived a privileged life I wonder what it was like to deal with a bowel problem during this time period.  There were not bathrooms to conveniently stop at like the more modern times we live in.  He seemed to be very thin and was told to drink only milk.  The lack of knowledge they had yet to learn about these diseases made the suffering probably all that more than what we live with in this day and age.  I still am in wonder as to why it's taking so long to figure out a cure for this disease.  What are we concentrating on that we can't figure out how to stop this from overtaking the lives of so many.  Are there more of us diagnosed with this or is it just the information age making it brought to the forefront to make it seem this way. Is it just about money and the lack thereof that keeps this on the back burner?  It just seems odd that there are so many theories yet so little being done.  If we had a president today with this, it would be wide news and at the forefront but yet back then it wasn't talked about.  Is it just more comfortable now or is it that we just lay everything out there for everyone to know!

Research is showing that your childhood can determine a lot of things for you later in life.  Common sense would tell you the same.  I can't help but wonder what part if any of my childhood has led to my health problems.  Youngest of seven, fairly poor although for a time I didn't realize it.  A lot of family strife that I was exposed to and probably didn't even need to know about.  Unfortunately, I was in the middle and saw it all.  Lost a parent at a young age which may or may not have been a blessing.  At the time of the loss my parents life was spiraling down anyway. Lost a sibling not that long ago whose life was hard too.  So my point is I just wonder how all this stress played a role in my insides.  It festered and festered till finally my body couldn't take it anymore.  I was carrying around the calm before the storm for so many years that finally my body said enough.  Now I avoid stress at all costs, don't want to be involved in others problems and generally avoid family.   This is my mental and physical way of helping myself and my health.  Now I don't say this to put anyone down, everyone does there best at the time.  My own children will look back and say, why did I have to go through this or that.  So it's not meant to point fingers, just to realize how much can one person take before something gives.  My give was my diseases.   

Really don't feel like blogging and really just can't.  Past few days have been horrendous.  The pain is overwhelming.  Someone close to me said well others have it worse.  Okay, I guess that's true but how exactly does that help me? 

Today is one of those days where no matter what I do, I won't feel better.  Just running to the bathroom and dealing the best as I can with the constant pain.  I am barely eating so it used to be what did I eat to really set me off, but when my diet consists of very little it's hard to tell what that something is.  Literally, I had some yogurt yesterday, boiled egg, canned fruit and 4 cheese sticks.  I stay away from most foods as they usually cause me problems and I feel bad enough as it is.  Today I have had a banana and a scrambled egg.  I hate pain pills, but as my husband reminds me, I really don't have much choice in the matter.  When you are seething in pain you have to do something to help yourself out of it and even then it's just a mask to a larger bigger problem.  The four letter word in Crohn's Disease is again that dreaded word PAIN!

Remission with Crohn's Disease.  Everyone talks about remission and that is the goal as there is no cure for this disease.  Personally, I have never reached remission.  In fact, if anything after many drugs and two biological drugs I haven't even come close.  All I have left from all of these drugs are side effects, a surgery to remove an infected growth, that by the way grew back.  Lupus from one of the lovely biologic.  Psiorasis from the same biological.  Liver problems from the drugs and I could so go on and on.  Aches and pains and Crohn's that has somehow become worse.  At this point, I have no faith in the medical community to be able to take care of this disease at least for myself.   Maybe mine is so severe they don't really know what else to do?  Maybe it's very hard to treat and they prefer to treat the treatable?  I get it, I wouldn't want to be on the medical end of this, it's bad enough to be the patient.  Maybe that's why my GI doctor and lupus doctor just left the clinic and they are unable to get doctors to move to this area. 

Fatigue, exhaustion, I'm not sure what you would call it, but I am wiped out today.  I have no energy, I hurt all over.  If I wasn't dealing with these auto immune diseases I would think that I have the flu.  Since, I don't have the flu I just have to try and keep moving.  It's taking every ounce of energy to not crawl into bed and just wait it out.  I went to bed for a while and forced myself to get up and keep moving, but it's hard.  It's really hard to feel like this.  But there's always tomorrow and another day can mean I might feel better and that's the hope I hold onto.

The biggest misconception about this disease is the pain.  I can't begin to explain the excruciating or constant pain that Crohn's Patients go through. I think when you say you have Crohn's Disease people think, well you have to go to the bathroom a lot or at least more than they do.  That's the least of it people.  The real true problem with this disease is the pain.  It is constant for some like myself and at many times like myself down right more than we can take.  The fatigue caused by the constant dealing with the pain is draining.  You just become zombie like having to deal with hurting minute by minute, hour by hour and day by day.  The doctors ask about your pain yet they offer no help or solution.  In fact, GI doctors are almost unwilling to prescribe pain medications.  Yet, time and time again I read from others that the pain is the biggest complaint.  Imagine having a cramping period and then live it everyday.  Hmmmm, I bet they would prescribe pain medications for theirself or other family members.  Crohn's Disease is a chronic illness with daily chronic pain for many like myself.

Visited my daughter over the weekend.  I so enjoyed seeing her and happy to have the visit.  Came home and basically went to bed, so tired.  She basically has the energy I used to have before becoming sick.  It's nice to visit but even nicer to get home.   Home is my refuge and comfort.  When you don't feel well, being home is such a present that you sometimes take for granted.  If I run to the bathroom every hour there's no need to feel embarrassed.  If I need to lay in bed during the middle of the day, no one is judging or wondering why.  The relaxation you receive at home goes hand in hand at helping with the fatigue of crohn's disease and lupus.  Sleeping in my own bed and being comfortable is a huge help to the lupus and aches and pains that go along with it.   I used to love to go and hated to come home now it is just the opposite.  Home is my present that I give to myself.

I think I'm experiencing anxiety over trips, meaning making plans to leave overnight seem impossible for me to do as I most always don't feel well.  To give up the comfort of being home and having my own bed and dealing with the pain and bowels at home just seems to nice and convenient.  Some people just don't understand or want to understand this and maybe they are right.  I should just push myself and deal with it wherever I am.  Sometimes being social and pretending when you don't feel well is exhausting too.  So the two together are just so much to deal with.  I used to go everywhere, the one to make all the fun plans and invite everyone.  You would think people would understand more than they do, but unfortunately it's just to complex of a situation for others to fully take in.  So I feel guilt and I know I'm missing out but I just keep thinking things will change and I will feel better and be back to my old self.  This isn't really going to happen is it? 

Dr Oz Bowel discussion

Very hard night, couldn't fall asleep, heating pad and pain pill just didn't do the trick.  Woke up to horrendous pain.  So again my day begins.  Many trips to the restroom.  Dr Oz talked yesterday about normal bowles, showed pictures and had audience members bring in pictures of their own stools.  I found it very refreshing.  Normal bowels have a certain sound, look and feel.  Mine were exactly what he described as Crohn's disease.  If you weren't able to watch yesterdays episode, maybe someday you could catch a rerun as it was very interesting and answers all the questions that are vodoo to talk about.  I understand why I feel the way I do as my bowels contain all the nutrients from the little food I do eat and my body isn't retaining them.

My sister called me last night and could tell I was miserable.  Bless her heart for asking.  Most people including relatives just don't want to ask, know or hear about it.  Because it's the same thing over and over they get tired of hearing about it.  They think you should be better by now.  Can't some medication cure you, could you eat differently and seriously I think they think, are you really trying to get better.  It hurts when you know people are thinking like this.  The only way they are truly going to ever understand would be to have to go through this or something similar until then they will go on living their lives and not really caring.  I have one relative who means well but keeps telling me I need to get a bag and then my crohn's will miraculously go away.  Another one who suggests a certain diet and yet another who says I should try some medication.  Well I have tried almost everything, I have over 50,000 in debt from treatments, procedures, tests and medications I am no better off and actually worse for the wear because of it.  I really think I do just have to live with this.  Try to make the best of it and live each day and take what I am given. 

The pain kept me from falling asleep and kept me from sleeping long. Up at 4 a.m. in pain.  I'm supposed to go grocery shopping today, should be a simple task I know, but for me it just isn't.  I can't go and walk around and shop while I'm having bowel problems, thus I spend a lot of time stuck at  home.  If you know me, you remember me as someone who would go, go and go.  My life has so changed.  You just cannot muster the courage nor the strength to go and deal with this disease in public.  I think that's why it's so hard to work outside the home.  Forget missing work, running to the toilet etc.. Just the act of getting up and getting ready can be impossible. You can get up at a certain time and the whole time can be spent in the bathroom.  So, here I am once again bright and early dealing with this dam disease.

One of these days I'm going to post, all is well I feel great, unfortunately not today.  Pain all night long, tossed and turned and finally awake about 3 a.m.  Bowels that make me cry and feel like I may pass out all the while praying to god to get me through.  The pain is excruciating but I have to tolerate it and get through it.  I finally gave in and took a pain pill, always later than I should but I can't stand feeling hopped up on pain pills constantly.  So I must wait for it to kick in, it will help keep it at a dull roar until the pill wears off and I decide whether I can suffer through it again and so I begin each day, the same but some day it will be different.

So I received the $1200 bill for lab work from my Family Doctor.  When I called they said it just looked like I had a lot of lab work done and did I want to pay.  I said there had to be a mistake as my doctor is really good about telling me about large costs and letting me make a decision and he hadn't mentioned that the blood work that day would be over $1000.  So she said she would send me a detail printout.  I received it yesterday and it appears that I was double, triple and quadruple charged for the same tests making the bill so high.  I called and she said it was a good thing I checked my bills and questioned it.  How many things should we be questioning from our so called professionals.  Just because they say you need something done, do you really?  I could run to the doctors everyday at some point I have to take control and decide what is really needed and what isn't based upon intuition and experience with this disease.

Three hours of sleep last night and so the day begins with running to the restroom.  Yesterday was a  horribly hard day with my disease and today isn't looking much peppier.  The same pain in my lower right abdomen and not a little of pain, it hurts to sit, stand up and walk.  I got a bill in the mail yesterday for $1200 in lab work on one day.  Seriously, I called and they couldn't say much but are going to send me a print out.  Which doctor ordered $1200 in lab work and didn't mention it would cost that much.  First off I wouldn't have had it done and secondly, I would have checked with my coverage first or lack there of.  Then another one for $250 saying the doctor was a participating provider but not the lab.  Really? UGH!

Up again quite early as the pain wakes me up and of course the trips to the restroom begin.  But all in all it could be much worse.  I think when you are chronically ill your normal is quite different from everyone else and you resign yourself to the fact that you probably will never be the same, pleasing or not.  As many of you know my dog has been very ill, not only has it been exhausting but also very upsetting.  I am thankful that Crohn's hit me later in life as I don't know what I would have done had my children been young.  As it was they were teenagers, middle and high school.  Having to go through this at the time was hard and a huge life experience for them.  It's a big reminder that no matter what age you are, try to make the most of what you have and the most of each day.  Try to wake up pleasant and with a smile on your face and even if you aren't feeling so pleasant, fake it.  I have done that more than I care to remember.

I have been up since midnight, it is about 3:30 a.m., the pain is overwhelming. I can barely stand it.  Yes I have taken a full pain pill, but when this type of pain kicks in, nothing much helps with it.  I can't lay still or lay day it's just too much.  So here I am trying to take my mind off of it and not doing a very great job of it.  Hopefully as some point this morning I will find some relief.  Lower right abdominal, where it always hurts, the exact same spot every time.  Classic Crohn's disease at its finest.

Central Oregon GI Care Isn't Very Good

So I called this morning and cancelled my upcoming appointment that the last doctor (new doctor) made for me to see my old doctor, who I thought did me little to no good as far as helping me.  I am at my whits end with the GI care here in Central Oregon.  There is a large elderly population here and the bulk of who they see I believe is screening colonoscopies.  My original doctor now just works mostly doing these at the hospital.   So they never called me back concerning whether I received assistance for the $10K a month medicine they wanted me to go on which causes Lupus and I read possibly siezures.  I honestly don't even know at this point that I would take it.  They never called me to answer why he wanted a colonoscopy once again and hadn't discussed with me at my appointment.  When I called to cancel my appointment they didn't even ask why.  The reason they didn't ask is because they don't care.  This large clinic in Central Oregon is lacking enough doctors in this particular department to give good quality care.  I am disgusted, sad, disappointed and mad that they don't take care more seriously.  I feel I get better care at my local family doctors office.  Stop taking patients if you can't adequately treat the ones you have.  Furthermore, I am a particularly hard case, I realize that, but you would think I would bring on the need for them to figure it out and want to conquer the hard case instead of the daily screenings. 

My day started with 6 bowel movements in less than 2 hours.  I could let that make the mark on my day but try hard to choose not to.  So I kept moving, kept talking, kept working and now I'm exhausted.  But today it didn't win, I just kept going to the restroom and trying to ignore it.  Now, I can't do that many days, but the days that I can, I do and always will as long as I can.  For this small simple way of getting through it today I am very grateful.  I just kept moving and going till I couldn't move anymore.  So now I am off to bed, sleep or no sleep I am going to rest as tomorrow is another day in Crohn's paradise.

And so it goes, my gut hurts so bad today, I can't even fathom eating.  Doesn't mean I'm not hungry but I tried to eat a boiled egg and couldn't finish it, hurts too much.  Doesn't make sense I realize, but it is how it goes.  I never understood why I always so pictures of skinny (deathly) skinny people with Crohn's disease.  It seemed the norm.  Now Crohn's patients appear chubby and very bloated.  It's all the new medications that keep your immune system suppressed or of course steroids can do the same for you too.  When your not on medications for whatever reason, the weight just slips off.   Not to mention the steady bowels.  So if you see super skinny people who don't look healthy, don't be so quick to judge them.  It may be out of their control.  Just like being overweight it can suck to be way underweight too, not to mention malnourished.

When I was diagnosed with Crohn's I didn't even know what it was.  I had never heard of the Disease and left the doctors office, used the pay phone (funny) pay phone and called my husband and told him.  I was crying, didn't even have a clue as to how bad it really was and was to become.  Now, my groomers father had Crohns, my sales clerk at the stores Mother has Crohn's, my daughters friends Niece has Crohns, my daughters Friend has Crohns, my Neighbor across the street Son has Crohn's and so the list goes.  So yesterday is the same as today, probably worse as my lupus turned my face red and my joints feel like I have the flu.  My point is this, I feel this crummy think about the little Niece, the young Friend of my Daughters, the elderly Mother of the sales clerk and so the list goes, they all feel crummy too.  If I can randomly come up with a handful without thinking then I know that everyone else can too and we need to figure out a cure for this disease, eradicate it in it's steps.  Stop the generations coming forward from having to go through the pain and suffering.  So tell people you know that you know someone with Crohn's the more we talk about it, the more likely we are to cure it.

My Crohn's, Lupus and Psoriasis is flaring something terrible.  I am going to talk about Crohn's and how I get through bowel movements that on a scale of 1-10 are a 20.  I cry, pray to god to help me through it, shake, pound my fists and the most effective is use my lamoz breathing to take the focus on the excruciating pain and back to concentrating on my breaths to help me.  It is a very tough existence to have to live through this.  Many times my hubby of 25 plus years will come in and give me a pain pill, yes while I am on the toilet.  Just because he hates to see me suffering and hopes the pill will kick in and help me through it.  This is an exhausting existence and I am not the one and only person with Crohn's Disease going through this.  God help us all.

I spoke with my mother on Facebook video chat today.  I haven't seen her in 3 YEARS!  I was so overcome with emotion, my face turned red from crying.  I had no idea that my computer had this ability.  It took my 17 year old nieces request for me to even realize I could do this and my sons help to install this technology for me.  What a nice, nice gift.  For a while I forgot about my sickness and all the ills of my life and visited with my family. 

Woke up this morning after finally falling asleep at 1:00 a.m.  Of course pain woke me up and it just went downhill quickly.  The pain was excruciating and so were my bowel movements.  But a couple of pain pills later and I was actually able to leave the house and go somewhere today.  With the way my day started I didn't expect that at all.  Understand that I was unable to eat till I got home and then just some yogurt and a piece of toast and I can feel the pain coming on, but really I was able to get out and do something and that is reason to celebrate!

My newest lovely symptom is nausea, particularly if I eat anything of substance.  Now, I happen to be a person who despises vomiting.  For me it is the worse possible thing to happen and here I now have to deal with it.  I had always read that it was a symptom associated with Crohn's Disease but never expected to have to deal with it along with everything else.  Well, I guess I'm special because I now have to deal with that too .  In all seriousness though, the pain and trying to sleep through it is getting harder and harder.  I am in and out of bed all day and still feeling pissed off about having to deal with all of this. 

Some people may wonder what my point is in writing this blog and complaining as it may seem.  But honestly, I have come across so many people in the same situation as I myself find my health.  A neighbor has a grown child with an open fistula draining.  They think it's no big deal because this child doesn't complain.  Let me tell you, I'm sure there's a lot of pain going on and it's being well hidden as I myself tried to do for many, many years.  People couldn't and still have a hard time believing I am as sick as I am, because I put a smile on my face and don't have the words CROHNS taped across my head.  There are many young people dealing with this disease too.  My daughter actually has a couple of friends suffering.  One very young.  One thing I can be thankful for is that it didn't hit me till my kids were teenagers.  I was able to enjoy their young years with them.  I wished I had worked less and enjoyed the time more.  Even though I think I did more than most, now looking back that money was not worth the time I gave up.  Especially healthy time.  I now know that being healthy is the most important thing in the world. 

This disease is winning, winning, winning today.  I hate when I have to give in like this.  The pain won't go away and the trips are non stop to the bathroom.  On top of all that, I feel pissy.  Usually I don't let myself get like this, but I am just pissed off.  I'm sure there are times when this is normal with this disease.  But I don't want to direct it at others and at the time being I can think of one person close to me that has made me madder than hell.  Wow, I wonder if I should say what's really on my mind. 

I literally tossed and turned 4 hours last night and that was it for rest.  The pain is becoming unbearable again.  Yikes, what to do.  I put my PJ's on at 4 in the afternoon and am just trying to function through the rest of the day.  I foolishly made plans to go visit my daughter and help her move and I should have known better.  Leaving the house just isn't an option for me at this time of my life.  UGH!  I should have known something was wrong as the lupus was flaring horribly too! 

So the last couple of days have been pretty hard.  I actually forced myself out of bed after sleeping 15 hours.  I think this disease and the toll it takes on your body, really catches up with you after a while.  My joints hurt so bad it actually is painful to stand up and sit down, let alone sleep.  I'm not sure if it's from my Crohn's flaring or my Lupus as they both seem to be very active.  So nothing much has changed, still controlling my bowels by eating very, very little.

Went to bed at about 5 pm but couldn't sleep because of the pain, finally fell asleep around midnight only to be awoken by pain again.  I slept with a heating pad and even the pain pills didn't help.  Woke up early about 6 am and just got up and started working.  Better than lying around in pain.  Although at some point I will have to give in and go to bed as it takes a toll.  I am passing bowel today and that's good because I thought I was having a blockage again, the nausea yesterday, dizziness, pain and fatigue are all signs. 

So I am having problems again. My bowels come out pencil thick, which means my colon is inflammed and the pain is horrible.  Again, it's just trying to live through the excruciating pain.  It literally hurts to stand up right.  My husband is wondering whether I need to go to the hospital and I might, I just took another pain pill.  This is not fun and I'm  not having a good day.  Just another day with this Crohn's Disease.  The signs are obvious that I'm going to need to get on a big drug to deal with this inflammation.  I'm sure if you have this disease this seems familiar, if you don't, you probably wonder how I can talk so openly about my bowels.  I have no shame anymore, just pain.

Central Oregon GI care is less than impressive

So my doctor never called me back after my office visit.  So I called Friday to see what my Liver results where since he was so gun ho on having me have a surgical biopsy.  My numbers went from mid 80's to low 50's.  HUGE drop, since 40 is the top of a healthy liver.  If I'm getting better being off these drugs that are hard on me, why would I go through a surgical biopsy.  I believe a lot of the time what the doctors do is related to money.  I know it is cynical of me, but being as sick as I have been I no longer jump when they say I need to have something done.  I study what they want to do and think about what I will go through and whether the results are worth the trouble, otherwise they would have me running for tests all the time.  I don't  understand why it is so hard to get tests results either.  Especially blood tests, they used to send me the results and now I have to call and practically beg.  So I asked about the Cimzia and she had no idea what I was talking about.  Really?  Really?  So I explained the situation to her that my Insurance called me and said 1/2 a dose would take up my year allotment of funds available for drug coverage and I had applied for financial assistance.  She said she would get back to me, yet to hear from them and frankly don't expect to. 

The past few days have been much better, I could really get used to this.  I have been taking the opportunity to get some good exercise and a lot of work done.  My livelihood is directly related to the amount of work I do, so it's a good thing to feel good.  My only concern is the ability to eat and the pounds are dripping off about 30. When it really looks bad on me, then I will deal with it, right now I will just take the trade off.  Inability to eat but feeling human again.  I do wake up during the middle of the night from hunger pains, I can't imagine being someone without food on a regular basis.  It has to be truly hard.  Or being a parent not able to feed your children.  Being hungry hurts.  I better not go too far off on my rampage as I can get that way.  The waste in the world versus the hurting.  So today is better than the day before and it's sunny, cold and I will take it, life is good, today anyway.

If you ever get the chance to do a Crohn's-Colitis walk for the cure, I would love to hear from you.  Every year I hope I can go to Portland to join one and I'm always under the weather.  I think it's important to bring awareness to this disease and also to raise money in the hopes of someday finding a cure for this.  Their web site is CCFA.org.  If you are suffering from Crohn's Disease or actually any other disease at all, the best Chat/Forum I have found is Healingwell.com.  From there you can pick the chat you want to join, there are hundreds of thousands of people on there with crohn's disease all with many ideas and opinions.  It's nice sometimes just to know you are not alone in this ugly fight. 

I must have many people praying for me as today I feel somewhat human.  Now if you are a healthy person, you might feel like you have a little bug, that is my normal.  Only a half a pain pill so far and a couple of painful trips to the throne.  It is funny how you adjust your norm after having been so chronically sick.  The weight is dripping off of me a couple of pounds a day.  God gave me the extra weight for times like this, at least that's my excuse.  Really though, had I been a twig and lost almost 30 pounds in 5 months it would be devastating so I am thankful for the weight that the last drug put on me.  By the way Humira does put weight on you.  I think if you are taking it and not gaining weight, it might not be working, just my humble opinion.  It is bright, sunny and cold here.  I'm going to take my puppy for a walk, he behaves better and my spirits do to if I get out and walk him.  Hurting or not.  I am here fighting the good fight of this devastating disease, trying to spread the word.  So if you read my blog thank-you, share crohn's disease with everyone you know and eventually someday we will figure it out.  That is the hope I hang onto.

If you are related to me or to someone with Crohn's Disease please read my blog today.  It is not meant to bring you stress but warning signs to be aware.  About 20 years ago I remember asking my GP if it was possible to have your sinus infection drain green to your bowels.  He really looked at me funny and basically didn't say much.  I remember having an episode that was clearly Crohn's Disease, put me in the ER and stitches later they said I had a bout of food poisoning or the flu.  Clearly not.  Then I moved across country and the irregular bowels which I thought were normal continued.  My OB said I needed more fiber. Which only makes it worse.  Clearly when I was substitute Teaching and running to the restroom between classes it was taking over.  Then I moved again across country a new job and I couldn't drive the kids to school without an accident.  My point being is that they don't know if Crohn's is genetic.  If you are having bowels with green mucous, pain, blood, the big D, fatigue, mucous bowels (even clear) then you need to talk to your doctor.  Explain that you have a relative with Severe Crohn's Disease.  It doesn't mean you have it, but they now have some better testing, including blood tests.  Again, my point, mine went undiagnosed as, food poisoning, the flu, lactose intolerance, stress till clearly it became severe from not being treated for twenty years.  It is fistula based (ulcers) that continue to grow and abcess if not caught and treated along with inflammation which make your bowels hard to move.  Now I'm not trying to bring the fear of god to you, but just a simple clear understanding.  Bowel disease tends to run in families, not proven but not not proven, some think it may be a bacteria, some genetics some the environment. So know your body, don't let someone tell you to eat more fiber have a colonoscopy if needed and get to the bottom of it, I wished I had sooner, it might have made my life a lot easier, meaning I may have been able to get into Remission had it been caught earlier. The worse you let it get, the harder it is to control, clearly mine is out of control.

So first off my doctor comes in the room and asks how my lactose free diet is going am I cured?  I am like what the _____?  I stare at him and then say I'm the one whose liver issues caused me to not be in your Drug Trial and I emailed you asking to see you as I am so sick.  He asked if my name was Stacy and when I said no left the room for a very long time.  Okay, so far I'm not overly impressed.  He comes back and wants to know my liver results from seeing me GP I tell them I don't know but the GP said not life threatening or enough to be overly worried about.  I told him I thought they sent him copies as I requested but he's online with the Hospital.  He said it may take him a while to get online and I said I could call and ask, he said no that's okay and again left for a long time. Okay, shall I say strike 2?  I'm grateful to be seen though so I'm being positive.  He comes back, I know he's done nothing, but insists I never had the tests done. Hmmm, my husband was with me and I remember specifically having the needle stuck in my arm but okay.  Wants to run the tests again.  Strike 3?  He's not being I hate to say (truthful)?  But lets move on.  He insists I need to have a surgical biopsy for my liver problems as I might have liver disease, I begin to cry and tell him it's just too much along with the crohn's and lupus and would it matter, the GP said it's getting better. He said he may have to insist and make me.  Make me, you haven't earned my trust yet.  I asked about LDN he had no idea what I was talking about.  I said the pain is shooting I spend most days in bed and am controlling the bowels by not eating.  He said he's putting me on Cimzia.  I said I read if you have been on Remicade and Humira and they haven't worked after being aggressively used that you can develop problems trying another strong biological, he didn't agree.  Takes me out to the nurse and said set her up on patient assistance and blood work have her return to old doctor in 6 weeks. WHAT THE HECK.  First off, I haven't agreed to take Cimzia and secondly I am seeing him not old doctor.  I go up to lab and have a note to go back to Dr's.  They said he wants a Colonoscopy, I said last time a week before you called me telling me to get it approved myself and I knew I couldn't in a week so I cancelled, I didn't want to go through it again and why do I need a colonoscopy he never mentioned it, can I talk to him and of course he is gone.  So I leave knowing they want me to go see GP to get a colonoscopy not even sure why?  Did I mention Cimzia causes LUPUS!!!!!!!!!!!!! Among a host of other things like cancer and I have a growth on the side of my head.  Did I mention strike 4 or maybe 5?  I think he's out but now what?

Awoke yesterday in so much pain I thought it couldn't get any worse.  Well guess what, it did.  The nausea and vomiting and dizziness kicked in and I was over the top!  I thought I was losing my mind and my husband said he thought so too.  Finally by the evening I decided it was time to go to the hospital and my husband suggested I go to the spare room lye down and if I didn't fall asleep then we would.  Well luckily an hour off and on all night and today I can function.  I don't feel good, but nothing compares to the day of hell I experienced yesterday.   I don't know if it was the pain, blockage of food or what, but it was bad!

PAIN UGH!

This pain is getting old.  Went to bed with excruciating pain, finally got up and took a pain pill and another at midnight just to fall asleep with a heating pad.  Woke at 7 a.m. again with excruciating pain and a pain pill and another an hour later just to bring it to a dull roar.  I cannot function with this type of debilitating pain.  This is kicking my ass everyday.  I would not wish this on anyone.  I have so much to say, but as I sit here I am unable to do so as the pain is constant and won't give up.  I know it's just my bodies way of saying hey something is terribly wrong, dammit I know something is terribly wrong, so stop already!

My pain is over the top this morning.  I am sitting here with my cup of jo waiting for my pain pill to kick in.  I have so much to say, but what I really want to get across is that I received a card at the Doctors yesterday that is for Crohn's patients to present to businesses saying that a Medical Illness makes it necessary for us to have access to a restroom urgently.  In the ten years of having this god awful disease I thought this is the most clever thing ever!  How many times have I been out and had to stand in line or been told no to bathroom access and the people in front of me have no idea of my urgency.  So with much to say, today that's my point I want to get across.  EVERYONE who has Crohn's Disease should get one.

It has been a few days since I have checked in.  Literally, I am just waiting to see the doctor.  The pain in my lower right is constant at times sharp sending me over and exhausting.  My lack of being able eat is taking a toll on my energy level and the pain is taking over my ability to sleep.  Spending a normal day with my loved ones is just too much and sends me over the edge.  My life as I knew it is no longer normal and I am longing for the days of old where my crohn's was there but not running my life.  This is and has been a hard path that I am taking and I hope for some relief in the near future.  I can't continue day in an day out feeling that my health has taken over.  They called to remind me of my doctors appointment with the new specialist on Wednesday and I said of course I will be there.  It's my last and only hope at the moment.

So my doctor (primary) was able to get my prior authorization done in a few days, usually takes a month.  They went completely electronic and even though his patient load has been low in order for them to transition, I can see the benefits.  So I called the doctors to make an appointment and 5 people later and me crying on the phone, I finally talk to my old GI's nurse and he said there are no appointments for many months and I should go to the ER or urgent care.  I hung up very disgusted.  Then I had an idea, I figured out my new doctors email and sent him a message saying I was unable to get anyone to make an appointment for me on the phone and would he please see me.  He immediately responded and said someone would be calling me and today I got that phone call and appointment for next week.  So, good news!  Nothing has changed with my health, still shooting pain, but hope that this doctor will be able to help me!

So it's obvious something is really wrong.  Last night I doubled over in excruciating pain and my boys had to lift me off the living room floor and help me into a chair.  I have a call into my insurance to find out if I really need referrals again to see specialists.  I need to get in asap as this is really hard to live with.  Wish me luck as my insurance (or so they say are not really insurance) is horrible to deal with! 

So everyday my husband tries to convince me to leave the house.  Get out and do something, even if it's just for a ride.  Go somewhere, maybe a quick errand.  He feels getting out keeps my life somewhat normal even though in the midst I am suffering.  He's right too.  Every time I go, I come back feeling a bit better.  Whether it's just a change in pace, fresh air or something else it helps.  I usually always say no I can't and sometimes do need to stay home.  But other times when I just don't feel good enough, I pull myself out and go with.  It can be hard to try and be normal when you don't feel very, but I think it's a good thing to push for. I could easily stay in bed 24/7 and just veg, but I know it's not healthy and so I do push and my husband pushes as well.  So if you aren't feeling good today and it's not contagious, you may give yourself a little nudge to do a little something.  It just might make you feel a bit better.

Well, hard night.  This morning I am seeing commercials for Stelara which was the Drug Trial I was supposed to be a part of.  Wow, once again the side effects they list are pretty dang bad.  I think it's another one of those big bad drugs that you take in the hopes of some help but always wonder what price you are going to pay.  Even so, side effects and all I think it is good that there are choices out there.  I'm sure there are many people just like myself who have tried all the options and are waiting for new drugs on the horizon in hopes of some relief.  So even though they are not advertising this drug for crohn's, with the trial going on, hopefully someday they will.

I just got out of bed to write a little something. I am in significant pain and my lupus is flaring.  I woke up much later than usual with stiff joints and pain.  It seems to have gotten worse throughout my day.  I look and feel rather sunburned on my face and neck.  Pain in my lower right and bowel movements that make me want to pound my fists on the walls just to get through it.  This may sound rather horrifying and to someone not suffering from this disease it is.  I took a pain pill and turned on my heating pad and went to bed.  However, as life goes by while you are lying in bed there are things to do, so I am up and trying to get a few of these things done.  When will this daily suffering get better, I try not to lose hope in this situation, but it's very hard.

Everyday you wake up, you choose how you want your day to go.  Now, some things are out of our hands.  But if I woke up everyday cranky, crabby and mad at the world because of my situation my day would be that much worse.  Not saying that I am not like that sometimes, yes I can very much be like that. However, when I think about it, I choose to be happy.  Maybe miserable, in pain, fatigued, on the toilet, in bed, slightly depressed but still trying to be as happy as possible to the people around me.  I think that is the misgiving of Crohn's.  We put our best face forward and if people don't try to get to know you further, they would think it's no big deal to have crohn's disease.  On the surface, no big deal, a little diahrea.  Why can't you get better.  Are you not trying?  Do you like being sick?  Get over it and move on.  Well, it's just not that easy.  We may not go around telling everyone who asks "How are you today"? Oh I am sicker than a dog and feel like crap, literally.  We smile our best and say fine.  Hardly anyone really wants to know, how are you really today?  So remember that when you are out and about.  The person at the checkout may be suffering from some disease and making the best of a bad situation.  After all, isn't that what most people do on a daily basis.  Very few people, have health, happiness and love and if you do, don't take it for granted one minute of any hour or any day. 

No longer can I do the things I used to be able to do.  I cannot grocery shop alone, running errands is just too much for me.  Yesterday was over the top way too much. I had a job to do in the morning and had to bring help along and then spent about 2 hours at the doctors, I finally left because I just couldn't do it anymore.  I came home took a bath and went to bed.  The pain and crohn's kicked my ass last night.  Dying on the toilet and 3 pain pills and a sleep aid later I didn't fall asleep till after 1:00 a.m.  Finally just let the pain go till I finally fell asleep and was awoke by my doctors nurse.  At least I feel I am moving forward in the right direction.  My liver is getting better everyday, even though the numbers are over the top compared to a healthy liver and eventually it's got to get better.  RIGHT?

Went to the doctors today.  My liver was still high but he said it wasn't life threatening high. He had my tests done again and I don't have the results.  I doubt there was much change in a week, but he wanted to see if it was getting better.  He scraped my lupus flare and I might need to go back for a biopsy.  Told me to stay on my meds that help with the pain and prescribed a stronger pain pill but one without the tylenol.  He's going to request a referral for me to see the Doctor from my crohn's trials.  Had never heard of the drug I was interested in trying for crohn's.  He felt a colostomy should really be a very, very, very last resort. 

I can't believe I live day after day with the type of health that I am going through.  I must truly have some really sucky doctors.  Who in there right mind thinks it's okay to die on the toilet daily, many, many times a day.  To lie in bed with pain that is so severe it hurts to move.  Just because it involves the bowels it's not considered bad enough to do something about.   Because the symptoms won't kill you, it's not worth trying harder to help your patients.  I would never, I MEAN EVER, EVER, EVER take a normal bowel health for granted.  Because if it goes wrong, it goes wrong badly.  I mean ever so badly.  How do I do it everyday of my life.  Why is it getting so dang worse, every single day.  I mean really, isn't there a doctor out there that cares enough to make it better.  Can't someone figure out a cure for this living hell?  If you are wondering how I am doing today, you probably already know. 

When someone in my family dies, my relatives act as if they were the greatest person on earth.  What I don't understand is, if you think so highly of that person why not put the time and effort into visiting, letting them know your thinking about them or acting as if you give shit they were alive when they were alive.  What is the bull of pretending they were important after their death.  I know I stand in judgement because I don't do funerals.  When my dear friend passed away a few years back, she knew how I felt about funerals and wouldn't have expected me there, I visited her frequently when she was ill and she knew I was her friend.  My point being, if you know someone who is sick, take a moment and ask how they are doing.  Call once in a blue moon, shoot off an email, send a card or visit with them.  Don't wait till it's too late and attend a gathering where they won't be, give them the gift of your presence before it's too late.  Everyone knows someone who is not feeling well, a little bit of friendliness can go a long way in brightening someones day!

Went to the doctors today and have labs done.  Luckily, they remember me, know why I am there and make a great effort of getting it on the first try.  Have to tell you how much I appreciate this.  Well, I did tell them.  I was pretty sick this morning, but forced myself through the door to get this done.  I will see my doc a week from yesterday.  Hopefully, I can find out my liver and hemo results.  The price of acupuncture is $60 a session and not something that is covered by my insurance.  It's pretty costly considering it's not a one time thing but could be weekly, just not sure I can afford this.  My newest symptom that has been going on for a while are migraine headaches.  I finally figured out that I'm pretty sure they are related to my Crohn's flares.  Due to the lack of digestion of B-13 and Folic Acid, it can trigger migraines.  My form of dealing with this disease has been not eating or eating very little, so I'm sure this is all involved.  The headaches put me to bed and cause nausea.  Really, like crohn's, lupus, gerd, psoriasis isn't enough. I guess not!  Bring it on.

One of the hardest weeks of my life.  I am doing research into pain management.  If I can't get help for my crohn's with my liver being sick then I am going to have to consider alternatives.  One could be surgery, removal of my ileum.  However, if that was a sure thing it would be a better solution, it doesn't always fix the problem and being my insurance won't cover elective surgeries it would have to be a life threatening situation to get it covered otherwise it would be a burden to pay for it myself.  Having a colostomy doesn't appeal either but if I could trade crohn's for it, it would be a no brainer.  I have sent off to get information about acupuncture, haven't received a response yet but I had a relative who used to use it for migraines and I have watched her having it done and would be willing to try it, if it's not too costly.    Also, I have looked into going to a pain management clinic, which would be covered by insurance.  My other option is to try and find a doctor who would prescribe LDN which may include making a few trips a ways away to accomplish that and pay out of pocket.  These are the things I am pondering after surviving a grueling week of pure hell!

This disease is sucking the life out of me.  I'm sitting here full of pain pills and a heating pad on high in order to do this.  I have made a call into my doctor and am going to go in next week and have my liver labs drawn and iron. I am desperately in need of a Hysterectomy and the only way I am going to get it is to show my iron is low.  It's on the borderline and the pain along with my crohn's is sending me over the edge.  Asked my hubby if I should go to the ER and like he said there isn't much they can do for me, so we are going to talk with the doctor about something stronger for the pain.  If my liver labs are better I'm going to see if I can go back to the Trials Doctor and talk to him about some kind of medication to get my flaring severe crohn's under control.  Until then! UGH!

It is Thursday and everday this week has been a replay of Sunday.  It's not getting any better or an easier.  This is a really hard way to live and is trying my patience. 

C-Chrohnic Pain
R-Relentless Diaharea
O-Only You Understand
H-Hell! Daily.
N-Never ending Pain
S-SHIT HAPPENS

Living Daily With Crohn's Disease

Today I thought I could leave and go to run a few errands!  WRONG! WRONG! WRONG!   Of course when I was ready to get in line at the Dollar Store I couldn't wait any longer.  Luckily, like most Crohn's Patients I know where every bathroom in the state resides.  Off to Starbucks.  My husband is patient and sits patiently in the car knowing that it may be a very, very long time before I come out.  Then off to another errand and so the same replay of the same problem.  Tried to sleep with my heating pad last night and basically tossed through the night only to wake up to pain and problems with my bowels.  God help everyone else who has to live this kind of life as today really SUCKS!

At one point I was on a very expensive drug that was a pill form and in conjuction along with it  I had to give myself injections of a drug that used to be used to induce abortions.  Problem was that the injection drug was very hard to find.  I would call all over trying to see if anyone had it available.  I would get no real reason as to why it wasn't available.  It was cheap too!  Doesn't it seem odd that the cheap drug was so cheap and hard to get.  Yet these very expensive drugs are readily available if you have the money.  Eventually, my live once again got very, very sick, not from the cheap drug but expensive drug (FIGURE THAT ONE OUT).  So I had to stop it once and for all.  But I still remember thinking, if I lived up north I could get the drug in the other country, why was it so available there but not here in the good old USA.  I am studying another drug that is also cheap.  Is showing promise and when I mention it to my doctor she poopah the idea.  So I am going to continue to research it and will talk about it soon. 

I have to discuss the costs of these "Big Gun" Drugs.  I understand that it takes money to run trials and test these drugs.  But really!  I know many patients are able to take advantage of some assistance, thank goodness.  But there are still a lot left out in the cold unable to afford these expenses.  I know myself my debt from my health is astronomical.  I looked into the possibility of the next new drug today and my insurance would cover it with a 40% copay and up to $2500 a year.  The assistance covers $500 for a copay up to 17 times.  Lets talk about this.  First off the wholesale of the drug is $1400 an injection, that is cost.  I think retail is about $5K.  Now tell me why does it need to be marked up so much.  At 5K my insurance would cover a 1/2 of an injection.  So much for me being able to go onto the next drug available.  I know I am not alone, there are many, many and countless others who are in the same situation.  We have government paying as said on the news $8.00 for a cup of coffee and $16 for a muffin on our dime but we don't have health care.  Hmmm.  Maybe they could all bring their own food and we could take care of our countries health problems.  Just saying.

Look for things that bring you small Joys

So I am officially unable to participate in the Trial.  I am going to followup with my Doctor and have my liver labs redone.  If there is a change then I will continue to followup every month till they are better.  If not, I need to see a GI for testing to see why they aren't getting better.  I pretty much feel like crap. I feel bad for others in the same position that I am in.  It's a hard go when you are not feeling well.  I slept from 8 pm to 9 am and the only reason I had to get up was a trip to the Golden throne and then so it continues.  If your feeling bad too, try to look at the bright side of life.  Remember the things that make you happy everyday.  I enjoy a good cup of coffee, the 80 plus degrees in September and I LOVE wearing shorts and tanktops, I have a Soprano video to watch today and I am almost done reading a great book!  Look for the things that bring you small joys!

This morning I am really appreciating my family.  I was up all night with severe pain, not even pain pills, heating pad or sleep aid could help me get any rest.  Up and down to the restroom, my poor dog finally left the room and went and slept in the spare room.  My boys are gone and so I was on my own and it's not easy.  At one point I contemplated going to the ER as I often do.  Knowing that unless there's an obstruction there probably isn't a lot they can do for me.  I finally gave in and got up.  Personally, I think if you are in a severe flare as I am you need a caregiver at home with you.  Being on your own is just too tough.  I suppose if you are in remission or your crohn's is moderate maybe you can make do, not to make light of any crohn's symptoms.  That's why I can't understand the inability for crohn's patients to get social security benefits.  So I am up and trying to not think about how much I really hurt and maybe I will become tired enough eventually and be able to sleep through the constant pain.

My elderly mother gave me good advice.  She said I have to keep going to my appointments and hope that things will change so that they can treat my disease.  She said my family members deserve to have a healthy mother and wife.  In all reality she is right.  So I will go to my appointment next week and hope that something has changed. That in some miraculous way my numbers have somehow moved enough that I can get some treatment for this.  What does giving up on getting help prove to my loved ones, that when the going gets tough the tough give up.  I am one tough cookie sometimes and I will hold onto that!

I no longer can continue on my regular medications.  One of which I take specifically for pain management.  After two days of not taking this medication, I feel like an old person.  My joints are stiff (this could be as much from lupus as crohn's) and it hurts to move regularly.  I guess I really never realized how much I depend on this and how well it was working even considering how miserable I was feeling.  And so goes my life.  Should I go ahead and go to my appointment at the drug trial next week with my fingers crossed with the hopes and prayers that possibly my liver count has changed enough to participate.  Or should I live in reality and give it up.  Is it possible for a miracle to happen?  Do I believe in miracles?   I suppose I do, how else do you explain things that happen that really shouldn't in all reality.  Really, what can it hurt, god knows I it couldn't get any worse or could it? 

Just received a call from my Trials Drug nurse.  Bad news, am I surprised, ugh!  My liver is too sick to continue on the drug trial.  My heart sank.  I explained to her that I received a call from my GI's nurse and was told that I needed a liver biopsy and would I agree to it, well not having any further information I called back a week later and asked for a copy of my tests and was told in no uncertain terms, nothing was wrong and of course when I brought up being called for a biopsy they acted like I had made it up.  I am taking a medication that can be known to be hard on the liver and helps with my daily pain.  So I am going to ween myself off of this and hope and pray that when I go in on the 21st to have it redrawn that it will have changed enough to include me.  It has only decreased 6 points in two months and I need it to decrease 8 points in 9 days.  I know, I know but I have to try, what else have I got.  The first dose of this medication has to be taken by the 27th to keep me in this study.  Looks like I am going to lose my chance to receive help with this drug which leaves me with only two other choices, one being a last resort and the other being 20,000 dollars a month out of pocket.  Which means I may not have any other choices, a bag.  I don't know.

So about this Drug Trial I have joined.  It is a drug that has been used very regularly for Psoriasis.  My Trial doctor knows of patients on this drug for Psoriasis.  The funny thing is, the last "Big Gun" drug I was on caused Psoriasis.  It started around my neck, a lupus rash and the lupus rash across the nose and cheeks commonly called the Butterfly Rash.  It then spread into my scalp, ears and started to spread on my face.  I stopped the drug, steered clear of the sun and it's better but hasn't gone away.  So with some luck and PEOPLE I NEED LUCK it will clear up my psoriasis.  I have noticed my hair falling out again and it could be the psoriasis or the so called lupus.  But these are all small compared to the severe crohn's that I am suffering from.  So the drug company is trying to get it approved for use with Crohn's.  If it is approved, I guess the benefit is that there is another drug in the few choices available and insurance would now have to cover it as use for the big C.  It is my understanding this is the third phase and so I think it's promising.  There are some pretty severe side effects that I try not to think about.  One is a reversible syndrome ( a very scary reversible syndrome) the others are all par for the course in my eyes as I have been exposed to so much with all of these strong medications.  Kind of like when you hear on TV a commercial for a new drug and then you hear them list all the side effects which sound worse than what the drug was going to treat.  With that said, I am at a stalemate with my health, something has to be done as living with this on a daily basis has become a huge mountain to climb and so I am moving forward.

So it has been a few days since I posted.  My trip to the Drug Trial proved to be a bit much for me.  I ended very sick the next day.  Crohn's ended me on the bathroom floor and a simple trip to a local drugstore ended with me not being able to leave the toilet in the store for an extended period of time and wondering what the heck I was going to do.  Luckily, my hubby came in and got me and helped me out of the store and home.  God bless my dear husband!  My day at the Trials appointment proved to be a bunch of testing and a worthwhile visit with a new doctor.  I dropped off my frozed stool samples, nice huh?  Took four nurses to get about 8 viles of blood and a few pricks, why do they call it pricks when it actually is a little more painful than a prick.  My veins have all but disappeared.  My EKG was fine and my xray went fine too.  Still awaiting results.  The doctor I saw also suffers from an IBD problem and therefore seems a bit more in tune to how horrible this is for me.  He actually seemed to care that I am as sick as I am and said he was more than hopeful about my participation in the upcoming drug trial.  If I am given serum the first time and don't get any relief, I will then be put into the study with the drug. If I am given the drug and it helps well then I just continue into the trial. If I am given serum and improve I would continue.  So we will see what happens.  It all is dependent on my results of my tests.  If something shows up wrong I have one more chance to retake the tests.  I was also sent home with a diary to keep.  Number of stools, temperature, medications taken, pain level etc...  and my overall well being which has become to be a big problem.  I have much more to say about this drug trial and will try to continue talking about it and discussing it as I progress along.  It was refreshing to see a new doctor who thought the fact that I am controlling my illness as best as I can by not eating, laying in bed and pain pills to be a less than adequate way to be living my life!

Public restrooms are just the worse to have to deal with especially with this Disease.  Yet, they are a godsend in your time of need.  But women, why do you stare in between the cracks of the stalls.  We can see you staring at us.  Do you think it's going to help us relax and get out of there quicker?  What about a seat all covered in pee.  I get it that you don't want to sit on a public toilet, but half squatting and letting it fly where ever is terrible.  Then there's the toilet paper all over the floor.  Really, is it done on purpose.  Then to top it all off there is the one person coming in and complaining out loud how bad it smells, it's a restroom being used regularly they smell.  Then my all time pet peeve, why do the women have a line and the men don't?  If you walk out of the restroom without washing your hands and without using purell from your purse, you are passing germs along that can be life threatening to some people, including people with crohn's disease whose immune systems are usually depressed because crohn's is our immune system fighting itself. If someone comes rushing in and there's a line, if you can wait, let them go ahead of you.  You never know what a person is dealing with in their life and a small gracious lead in the line can make a crohnie's day.  Just saying.

I'm going to again today continue talking about my first "Big Gun" drug.  Evidently this drug is made from an animal protein and since many people can be allergic to animals as I am, I would begin my infusion with a Benedry IV.   This would immediately put me to sleep in the chair, my short reprieve till it ran out and the nurses would come over to switch me to the infusion.  They would also give me tylenol.  Finally, one of the nurses suggested I take tylenol before I come in as they charged $8 a pill.  CAN YOU EVEN BELIEVE THIS!  Also, to use the restroom you had to untangle the cords from the person next to you and drag your IV pole to the restroom where everyone could listen to you go to the bathroom. Now this was quite fun considering crohn's.  Often the trip to the restroom isn't short and is quite smelly.  So you open this big door for everyone to see and smell.  Nice huh?  Now, since myself and many others cannot get disability for this damm disease, lets talk about these every 4 week appointments for my infusions.  It's not easy to ask your employer to take a half a day off to go get your infusion every 4 weeks.  Employers don't like employees missing work, try adding this to days off from being sick.  So not only do crohn's patients take the chance of losing there job, paying for an expensive medication  and then you have the risks of the medication not working or causing other problems.  Then there's always co-workers who think that possibly you are being catered to because you need so much time off.  I will back up, it took an act of god to even get this drug covered.  First, my doctor tried every test in the known world and medication before finally a friend of mine who was a nurse suggested that I try this.  Then the insurance didn't want to pay, I guess I can't blame them considering the cost.  The nurse who told me I had been denied at the insurance suffered from crohn's too.  I cried, cursed and fought and finally they approved it.  But all the time I wondered if my husbands employer ever found out that I was on a maintenance drug that cost that amount would they use some excuse to get rid of him.  120K a year for one drug is a lot.  But in the end, it did little and caused more problems for me than it was worth.  Who knew.

So one of the first Infusion "Big Gun" drugs I was one really never helped.  I was on it for quite some time before finally at one infusion my faced turned red and it felt like I was having an allergic reaction.  After that I never went back.  They were expensive treatments, if I remember right about 10K every 6 weeks and we had insurance but still you end up paying quite a bit considering the cost.  When you are desperate and hurting you will try almost anything.  At the time, I had sores all over my legs.  My GI had the nerve to tell me that it was probably from shaving with a dirty shaver.  Are you seriously that stupid or are you just afraid to admit that one of these drugs could possibly have side effects.  Not to mention my sinus problems and explained in a previous post that led to surgery that ultimately the growth grew back and at this point I'm not sure what to do.  Then you have the long term affects that you never are sure about.  Cancer, etc....   It seemed that for a week after the infusions I had more energy, but again being dehydrated from this disease it's hard to say whether it was the meds helping or the saline mixed in.  These were hard infusions to go take on a regular basis.  You would sit in a large room full of extremely ill people, most fighting cancer at one point my dear friend who eventually passed away was sitting there with me.  Many would be crying and in excruciating pain either physically or mentally.  Not only would you be put in this situation and I don't mean to sound nasty, but many of these poor dear folks would be desperately ill.  I would try to sit as far away and by myself as possible for fear of catching what they were carrying with them.  These drugs weaken your immune system and you are in a weakened state.  The infusions would take about 3-4 hours and there was no entertainment, just a chair, sometimes if you were lucky you were offered a blanket and whatever you brought with.  The problem was when someone is one foot away from you and the room was full of this situation it's hard to rest, relax or even concentrate.  Now try doing this for years and paying large amounts of money to do it and not knowing the consequence of the drugs.  This is the reality of severe to moderate crohn's disease that doesn't let up.  GOD BLESS THE NURSES WHO GO AND DO THIS EVERYDAY!  At 10K a pop couldn't they afford a room larger than my living room for 30 people fighting for their lives.  Someone was getting rich at our expense and I hope they can feel good about spending money earned in this unconscionable fashion.  Just saying.

Daily Living With Crohn's Disease

I had an idea of what I wanted to talk about today, but instead I will hold off till tomorrow.  Was up most of the night in pain and the pain is over the top today.  If I thought there was something that could be done at the ER I would go.  I will try and hold tight.  So all I ask is if you are following my Blog or just reading for the first time, leave a comment, let me know what you are thinking.  If you are fighting this disease too, let me know how you are feeling.  Take care and I hope for a better day tomorrow.

Living Daily With Crohn's Disease

Today my post may be a bit shorter.  I am dealing with excruciating pain.  My suggestions on how I deal with this to try and stay as stress free as possible.  Sometimes that's not possible, I realize that, but hopefully the people around you who love and care about you will make it as easy as possible.  My GI Doctor doesn't believe in pain pills, I think it is absolutely the cruelest answer to someone who suffers with this disease.  How the HELL are you supposed to get through the pain without it.  For me, I have been in regularly to see my Family doctor and he has watched me as I cry explaining my pain and realizes that taking a 1/2 a pain pill and a heating pad are sometimes the only thing short of going to the emergency room.  In fact, more often than not this is the only thing that keeps me somewhat sane.  I am not opposed to alternative means of pain management and am not far from trying those options.  If you stand opposed to alternative pain options on a moral ground, well shame on you, if you live with pain you would get off your high horse and realize when people are desperate for relief, relief is what they should get.  So with that rant I am going to move on with my heating pad and curl up in bed and wait for this to pass or not.  Pray that tomorrow will be better.

Daily Living With Crohn's Disease

Crohn's is known to cause weight loss.  If you have had crohn's you know that this is all you hear.  I have to be honest I haven't experienced this side of it till I went off the "Big Gun" drugs.  The last "Big Gun" drug caused a weight gain of quite a bit and when you go to the forums you will hear this over and over.  I think they must be made to put weight on patients, it would make sense because if your flaring and not eating, you are not taking in the correct nutrients and therefore lose weight.  Over the course of this summer I have dropped 20 plus pounds.  Now this worked out okay for me as I was overweight to begin with and 20 pounds hardly made a difference.  Now I feel the difference.  But if you are a small person and you lose 20 pounds from being ill that can be devastating to your health.  With no hope in sight of things changing for me, I am careful to eat soft foods that are healthy.  My daily regime lately is a soft banana, yogurt(even though I am lactose intolerant), maybe some cheerios with water or a piece of plain toast and lots of liquids.  I go to sleep with my stomach grumbling from being hungry but eating and filling it up will just lead to a night of pain and trips to the John, so it's not worth it.  I think it's somewhat of a myth that crohn's patients are skinny, most that I know deal with the bloat, weight gain from meds and probably lack of exercise.  I really at this point could care less about weight, I would be happy at almost any size if I could regain my health.

Daily Living With Crohn's Disease

So I got a call from my nurse a few weeks ago after being seen and he said that my doctor wanted to do a liver biopsy.  Well, this just floored me.  I had been sick a few years earlier with a hepatis from a drug that made me very ill.  I would sit up all night not being able to sleep, feeling like I had the flu but nothing much becoming of it other than being very sick.  I called back the next day and asked how they do it, well he went on to explain that they put a needle between the rib cage and biopsy.  Well, needless to say I don't have enough faith in my doctor to let him do that.  Then a week later I called and wanted the full results of all my labs and she said everything was fine.  Now wait a minute?  A week prior they wanted to do a liver biopsy and this week it's fine.  When I pointed that out to her she didn't have much to say.  That was when I lost all hope in getting decent care in the area that I live in. The major clinic in my dept is inundated with patients and you cannot get a return or initial appointment for months.  So, is my liver sick?  I cannot tell for sure.  I have been sicker than usual this week with most of my time spent in bed.  If it continues I will go into my local family doctor who has earned my trust and respect.  With all of that said, these big gun drugs are hard on your system so nothing would surprise me.

Living Daily with Crohn's Disease How many is too many?

So what is an average day of bowel movements.  I can go up to 20 times a day.  I have been awake 2 hours and have already had 3 trips.  You wonder with as little as you eat to keep the pain at bay where all of this comes from, but somehow it's there.  Early on in this disease it was mostly in the morning when I was trying to get the kids off to school and on to work.  I remember telling the kids to hurry get out of the car I had to get to a restroom, then going home and then finally leaving for work with a change of clothes.  After having to go and buy clothes to wear once at work, I learned a valuable lesson to carry a change with me.  Then as this disease progressed I can no longer have a reprieve during the night, it's all hours and all times.  Ask any Crohnie and they will tell you every restroom within a short radius of their house.  You have to know as it can be crucial at the most critical times.  For a crohn's patient, it's not oh I need to have a bowel movement sometime soon, it's oh I need to have a bowel movement now and it will not wait!  In line at the grocery store, getting your hair cut, at the doctors etc..., so you find yourself cutting out the things you can do without.  I cannot make appointments and keep them, sure enough I will be sick and flaring when I need to leave or be there.  Hopefully people will understand the need to isolate ourselves.  We are not rude, we are not trying to dwell in our disease we are just living the life with way too many trips to the restroom.  It is after all our reality.

Living Daily With Crohn's Disease

Okay this may be a somewhat minor issue, but I am going to talk about it anyway.  After years of infusions and being stuck many times just to find a vein that may or may not collapse I am now very proactive at speaking up when I need to have an IV or blood draw.  Fist of all, most of us Crohnies are usually somewhat dehydrated because of flaring, so finding a vein can be even harder.  Many of us our probably like myself and have had so many draws or pokes that the places to choose from are becoming limited.  I put up with just anyone in the Chemo room trying me and then finally always having the head nurse come over and take charge.  I was going there for IV treatments.  She would immediately do what everyone else should have, heat up a bean bag in the microwave and let it sit to enlarge my veins.  Once I realized my hands were the best place, I would literally offer them up first.  A few times they put the IV's in my lower arms and that hurt like a bitch.  Now when I go for draws I explain that I have crohn's, I am a hard draw and they take the appropriate measures before they draw.  So my thought is just this, speak up, you should not have to be poked 5 or 6 times while they practice on you, we know our body best and need to speak up and take charge.

Living Daily With Crohn's Disease

I am sitting here waiting for a pain pill to kick in so I can function.  I made the mistake of eating some real food yesterday, two pieces cheese pizza and paid for it on the white throne.  When I mean pay for it, crohn's patients just don't have extra bowel movements or diahrea, the reality is pain so horrific you cry and hit the walls to get through it.  With that said, how can we be expected to work.  If you can get through these horrific bowel movements then going back and pretending it didn't happen doesn't work.  I am in so much pain afterwards that lying down and taking something to ease the pain is the only solution. I applied for disability 4 times and gave up and I'm sure many others have.   The anxiety alone in going to work and knowing this will happen is over the top for most people yet you are expected to do so.  I am appalled, dismayed and saddened that not only are you sick but the assholes who make the decisions based upon their educated opinion decide these factors for you.  How about they come spend a day in your shoes and then decide, see first hand if you are really sick or not, seems fair huh?  If it takes them 6 months to decide, surely they have an extra day in those 180 days that would allow them the time. Again just saying, my humble opinion.

Living Daily With Crohn's Disease

How many of us keep track of what our bowels look like.  It's true, it's an indication to us of our flaring.  When we go to the doctors they have a 1 to 5 scale and want us to describe what our bowels look like.  If we don't look, how will we know.  My first indication that something wasn't right with me was way back many years ago and I told my doctor that I thought mucous from my sinuses was coming out my bowels.  She told me to eat more fiber.   Hello!  How many healthy people have green or otherwise mucous coming out their bowels.  For me this is a sign of CDiff.  Very hard to get rid of and very miserable.  Mostly found in nursing home or hospital patients, crohn's patients are known to get this problem too.  Of course blood is very common for me and no longer is alarming to me.  The big D is regular and I even find times when constipation is a problem.  Sometime it can really run a whole gammit (if that's even a word) of symptoms.  One common thing with all of these descriptions is the accompanying pain.  Sorry for the descriptions today, but if you too need to look you are not alone.  

Daily Living With Crohn's Disease and Colonoscopies

So lets talk about what we don't want to talk about.  The dreaded Colonoscopy.  My last experience one of many was horrible.  Before I had always had to drink down the dreaded gunk and make love to the toilet.  Last time they gave me pills that you drank with liquids.  I kid you not, I had to take a bucket in our van and use on the way to my procedure.  Now they wanted me to have another one done recently and I am just so disgusted with my quality of care and the fact that they called me and told me I had to figure out how to get it approved that I cancelled it.  I was warned by a friend whose father had crohns and ended up getting punctured on one of his routine procedure, not to let them use it as a regular routine on me.  Furthermore, I explained that last time I had a procedure it was over the top with the big D, that I had to bring a bucket.  They really acted like they could care less.  Well lets see one of them or their loved ones drive 45 miles using a bucket and see how big of a deal it is.  Needless to say they said I could take the medicine till I ran clear.  Oh really, after how many procedures and now you tell me.  There is a lack of understanding of our daily lives with the people who are in charge of caring for us.  Before becoming a GI they should have to live with a flaring crohn's patient for 24 hours and really see what it's like to be in our shoes, I think the quality of care would be a lot better! Sorry, just saying. 

Living Daily With Crohn's Disease How to Tell Who Your True Friends Are

Quickly upon getting Crohn's Disease you can tell who your true friends are. Family members included.  People who constantly take from your energy run for the hills when they realize it will no longer be about them only.  Not intentionally either..  But the takers will not want to give and given their nature will slowly drop off the planet.  Even true friends, the ones you invested the most in are the first to go.  Family members that you thought truly cared about you, no longer are involved in your life.  God forbid that you complain, I'm sure they are thinking can't you handle a little bowel problems.  I mean really!  How bad can it really be.  Even when you hold back and don't complain or let them know truly what's going on, just in the sheer fact that your energy isn't there and available will change the dynamics of your relationship.  How to tell who your true friends are including family, it's the ones who say how are you doing?  You say, fine and they say, no how are you really doing?  They are saying to you, it's okay to complain, go ahead and tell me the truth, I am here for you.  The friends that call and say I haven't heard from you in a while are you okay?  And it's okay that I have learned this lesson as I spent many wasted years giving my time and energy to people who truly were not what they seemed. 

Daily Living with Crohn's Disease

So yesterday I went to my first appointment for the Drug Trial I am joining. It was basically going over the paperwork involved and my health history.  September 7, I meet with the doctor.  I will have an exam, blood work, ekg, chest xray, tb test, stool samples and then given a diary to keep track of my bowels and pain for a week then I should get an infusion if I qualify after all the tests.  Phew!  I was awake all night with pain, yesterday just spending the day at the doctors took it all out of me. It's one thing to handle the pain and everything else at home, but even harder being away and having to pretend all is well.  This is phase 3 of the trial and is going on nationwide.  The drug company is out of the UK and I will probably be the only one in this area who gets into it.  If this drug/placebo doesn't work, my other option is Cimzia or LDN.  LDN isn't a widely acceptable drug for Crohn's from what I understand but some doctors prescribe it, whether mine would or not, I'm not sure.  It takes 4 months just to get a return appointment, needless to say I am disenchanted with the quality of care available here.  Another reason I would like to be in a bigger city or outside of one. 

Daily Living with Crohn's Disease

Received a call about a week ago from a doctor in my GI's office.  He was wondering if I would be interested in joining a drug trial for Crohn's Disease.  There is basically only one big gun drug left that I haven't tried and it's similar to the last two I was on that ultimately didn't work.  Not only did the last one not work, but caused my Lupus and growth.  This drug is in Phase 3 and has been successfully used for Psoriasis.  It is human made and is given in injection.  The Trial is a Placebo, Drug and Drug at a dosage right based upon your size.  After the initial 6 weeks you can join the trial and continue in the medication you were receiving or stop at anytime.  So, I am going tomorrow to find out more information.  This drug has some side effects that make you worry, but I guess they all do, just some more than others.  I would only try it and continue if I felt significantly better.  So I will let you know how it goes.  More information to come. 

Daily Living With Crohn's Disease

Ugh!  The pain today was unbearable.  Sometimes I just think take me to the hospital.  But somehow I get through it.  If they can't come up with a cure for this dam disease then at least make the pain manageable.  You never realize how much pain can disrupt your life.  With that said, today is another day.  The weather is great, my favorite TV is playing and I am enjoying my last cup of morning coffee.  Always look on the bright side as it could be worse!

Crohn's Disease and Lupus

So it seems that one of the big gun drugs I was on may have caused Lupus.  I broke out in a horrible rash all over my neck and a red rash on my nose and cheeks.  It looked like I had been seriously burned.  Then slowly I developed Psoriasis on my scalp.  My joints are in excruciating pain, I can't sleep on them am stiff when I get up from sitting and I wake up very stiff.  I have nose ulcers which are uncomfortable to say the least.  The medication that supposedly caused this was stopped many months ago and I was hoping these symptoms would go away.  Seems that Lupus is hard to diagnose and I should have let my family doctor take a biopsy of the rash when he wanted to.  One more thing to add to the list of issues to live with.

Daily Living With Crohn's Disease

So nothing much has changed.  I had a sleepless night with a heating pad and tossing and turning when I finally did fall asleep.  I awoke to pain and another day of a boiled egg and a little yogurt.  The fatigue is overwhelming.  Nothing much to do about it, it is what it is.  I ordered a iced coffee yesterday, thinking I was getting just that coffee over ice.  I ended up getting a splendid delicous milky concoction that after one sip, I convinced myself it wouldn't be so bad if I drank it. I wonder if other crohn's patients test their self in this manner.  That is what I was paying for last night.  I am lactose intolerant the yogurt is a stretch by no imagination the milky drink huge mistake.  When will I learn to not indulge under any circumstance, life as I was once new it has changed.  I need to imbrace the few bland foods that I can eat.  Just sometimes you let your mind play tricks.

Living Daily With Crohn's Disease Crohnsnme

So it's been a few days since I have posted, I have been struggling with this disease.  Today being the very worse.  My lack of eating and constant diahrea brought be to a state of nausea and electrolite inbalance.  I was nauseated and sick all at the same time.  Last time that happened I ended up in the ER after falling trying to walk up a few stairs.  Ended up with stitches across my chin and inside my mouth.  A beautiful mark to remember it by.  Luckily, I can now see it coming and ward it off but it's not an easy task.  So again, I will cut this short and hopefully feel better enough soon to get back to my regular posting.

Living Daily with Crohns Disease By Crohnsnme

A couple of years ago I started passing up a mucous fleshy type specimen out of my mouth.  It left me with horrible breath and it would come out and fly across the room at any time.  Very humiliating. I just felt like it was in my throat and would neither come out or go down.  My GI did an endoscopy found nothing, my family doc did xrays of my chest nothing.  Finally, I went to an ENT who put a scope through my nose and found it in my Adenoid.  Right side, infected and had a growth.  I had surgery to have this removed.  Would not advise an adult to go through this as it was very, very painful.  Only to have it grow back.  I have read that there are side effects to some of these big gun drugs for Crohn's Disease and can't help but wonder if this is one of the side effects.  With my immune system being constantly supressed it shouldn't be surprising.  So I continue to live with this, I have yet to go back to my ENT to discuss this.  He was dumbfounded in the first place and told me that surgery may or may not take care of it.  Knowing I won't go through surgery again, I suppose I should eventually have it biopsied again to make sure it's still just infection I'm dealing with. 

Living Daily with Crohns Disease By Crohnsnme

GERD.  We were on vacation many years back and I ate dinner and felt like I had food stuck in my throat.  Ended up going to the ER and the wait was so long I decided to cut my vacation early and go home to the doctors.  After an Endocscopy I was told I had GERD/Acid Reflux.  I have taken something everyday since. If I forget to take my prescription I feel the burning and it will remind me to go and take it to relieve the discomfort.  I have had that feeling like something is stuck in your throat a few times and it eventually goes away for me.  I often wonder how many crohn's patients also suffer from this, hopefully they are getting help for their symptoms too.

Living Daily with Crohns Disease By Crohnsnme

Fatigue seems to be a constant and never ending issue.  I'm sure the constant diahrea/bowel issues along with all the pain takes a toll on you.  The hard time or lack of good sleep I'm sure isn't good for you either.  I'm not sure what can be done for the fatigue and the doctors seem to just pass it off without really dealing with it.  Maybe they don't know what to do either.  Either way, it sure would be nice to have it go away.  I think this can make you a little cranky without a really good reason.  My family can always tell how I feel, I am normally happy go lucky jovial, when I'm suffering I really don't have a lot to say, I'm just trying to deal with it and get through it.  I enjoy a full warm bath every night and I love to read these are the things that bring respite when everything is going to hell with my health.  Oh and I love crazy maddening reality T.V. 

Living Daily with Crohn's Disease

So, I finally broke down and went into the Doctors yesterday.  The pain during my cycle and flaring is just more than I can stand.  I'm in need of a hysterectomy.  Long story short, my uterus is enlarged and I have benign cysts with heavy bleeding.  My insurance has decided that this surgery is elective and is opting to cover it, if I have it done at a much lower rate.  50% coverage instead of a $700 deductible, needless to say, the difference is keeping me from being able to get this done.  So my doctor checked to see if I am anemic, which I probably am because of the heavy bleeding.  I have not heard back about the results yet. A month ago I was very close to being anemic and with the situation I am in, I would think I am.  I won't go into my rant about my insurance company today as I don't have the energy and my guess is you can fathom what I am thinking about their decision or lack thereof, lets hope my appeal or new blood work will change their mind.    

Living Daily with Crohns Disease By Crohnsnme

Third day of excruciating pain.  My pain is predominately on my lower right side.   Dealing with this much pain is draining both physically and mentally.  Luckily I have good support and they keep a good watch over me and try to help in any way possible.  I tried to leave the house yesterday to run an errand and could barely make it back in time.  It just hit me and when it hits you have no time to find a restroom or dilly dally, that's the problem with this disease and the lack of understanding by others.  It's just not bowel movements more than others would experience it's a nightmare of bowel movements.  My hope is that whether you are suffering with this disease or not, you will come to have a better understanding of what others go through and will therefore have more compassion if you love or know someone in this situation.  Crohn's disease or not, if others are sick remember that they are fighting and need as much help as you can possible muster to give them.  With that, I am making this short as I too am not having a good time.

Living Daily with Crohn's Disease by Crohnsnme

My post today is going to be short.  I foolishly decided to try and eat a little bit of the dinner I had made for my family, a little chicken thigh, couple bites of seasoned potatoes and a roll and it more than kicked my butt.  Immediately into the restroom with pain that was beyond control.  Luckily, I have family that helped me through this by getting me a pain pill, heating pad and checking on me to make sure I didn't need to go to the hospital.  It's just so dang hard to go through that much pain along with the accompanied bowel movements almost make it seem impossible to get through.  But somehow I do and today I am much worse for the wear.  Again, I woke up in pain and am just trying to cope.  All over a few bites of normal food.  I have been keeping with a soft food diet and thought maybe I could try it and boy was I wrong.  So I am off and will chat more with you later.  Hopefully, better for the wear.

Living Daily with Crohn's Disease by Crohnsnme

There are a few forums/chats available to people who suffer from crohn's disease.  I have a favorite that I used to frequent when I was first diagnosed with Crohn's Disease and needed answers to specific questions.  Even if you are just feeling isolated it is a place to meet with others who may be going through the same issues you are or can offer advise.  You can also find answers to so many other questions.  Even embarrassing issues.  You would be surprised at how candid strangers are with each other. Some of the advice that is given is absolutely crazy though and should be taken with a grain of salt.  But general questions about how people deal with this disease can be helpful in your daily life.  If nothing else, you will realize you absolutely are not alone.  There are so many others dealing with similar symptoms and issue from this devastating disease.  Once in a while I will go back to it, look up something or just stop in.  It can be time consuming though.  Chatter beware.

Living Daily with Crohns Disease Topic: Therapeutic Reasons to Have a Pet

About a year ago we brought a new member into our family, my first ever pet.  Because of allergies I had never been able to have an animal as a pet.  But after many trial and errors I found a breed that doesn't cause an allergic reaction.  This little sweethearts name is Bear.  He is my right hand man.  Bear knows when I'm feeling bad and crawls up in bed with me and gives me several kisses and then curls up with me and helps me get through it.  He is a reason to force myself to get up and walk him everyday even when the joint pain is horrendous, he still needs his exercise.  There is no way to wake up in the morning grumpy when someone is so dang excited to see you.  If you leave even for a minute the homecoming is tremendous joy, just a reminder frequently of how much you are loved.  My point being, if you are suffering from a illness that leaves you home and maybe even alone, a pet can make a tremendous friend. 

Living Daily with Crohns Disease Topic: Food

As I sit here I am pondering what to eat.  Correction, what I can actually eat.  One thing I have learned are the trigger foods and the foods that go down easy.  Trigger foods are the healthy good tasting things, the easy foods are heavy white starches.  Early on I realized I had an intolerance to milk.  The sugar in even the non-fat milk just kicks my butt.  Nuts are horrible, no matter how much you try to thoroughly chew them. Popcorn is an absolute not, spicy foods, crunchy foods and sugar are all foods I avoid.  I have learned to have a low fiber non sugar cereal when I crave it with water.  Sounds horrible I realize but if you are craving cereal enough you will learn to enjoy it.  No cream with coffee, even the substitutes and soy don't work.  All candy because of the sugar is avoided.  Mexican, Italian, Chinese Food etc.... are all avoided.  The consequences is heavy painful diahrea and pain that doesn't want to stop.  It may take a while to become faithful to this diet but eventually you give in.  Hard fresh vegetables and fresh fruit are avoided.  The fresh vegies don't digest so well and the acid in the fruit is hard to digest.  Basically high fiber foods just increase the symptoms, one thing you try to avoid is anything that will loosen your bowels when dealing with active crohn's.   

Living Daily With Crohns Diseae Topic: Sleeping or lack thereof

So sleeping or lack thereof is an issue with this disease.  I'm sure I am not alone.  We are all probably sitting up at night trying to get through the pain.  I have found that if I use my heating pad all night on high it gets me through the night, but not without waking up and tossing and turning.  After many sleepless nights, I now sleep with the TV on pain pills at my bedside and something to take them with.  It's too bad, because you can't get well and heal without proper sleep.  The better sleep you get the better you feel with this disease.  I recently got a prescription for a sleep aid, but am reluctant to try it, for fear I will be stuck on it the rest of my life.  Seems silly probably to some, but I no longer trust doctors to completely have your best interest at heart when it comes to your health, I have learned you have to take the bulls by the reign and lead a lot of  your care yourself.  In and out of bed everyday seems to help and is a pleasant respite considering how I feel. Having the comfort of taking a 1/2 of a pain pill and cuddling up with the heating pad is a nice relief.  That's why being home is comforting.  I have the advantage of having taken full advantage of my energy in life prior to this disease and am thankful that I did.