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!