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.