Pre Op Blogger.

Hello Y'all. I had a bit of a brainwave while I was in hospital to account all my experiences on a website such like this, since I'm having the operation to have a stoma pouch put in on on the 21st September. I'm really doing a shout of for anyone who's worried about the med's they are on or if they are in a similar position with surgury looming over to add me as a friend and have a natter or read my blogs. You're not alone, and I hope that in the coming days my experiences will be down on this website to perhaps help other people worried about this horrid condition.
sucked into the supermassive

skin reactions to azathioprine

So I take remicade and azathioprine (imuran) for crohn's. When I first started taking azathioprine I had a bad reaction to it. I felt so weak, my muscles ached, and once I was out of the hospital and in daylight I started getting rashes wherever my skin was exposed to the sun. So the fun side effects eventually calmed down once I was on it for a few months and I was pretty faithful with taking it up until the beginning of July. I ran out of pills and just didn't bother refilling it-so I went close to a month without taking it. Finally got around to getting more and I started it last Tuesday. By Thursday I had the most itchy rash on the tops of both my forearms. Looks like hives, just red inflamed pores. I went to see my PCP, and he thought it was an allergic reaction to laundry detergent (I had just washed my sheets the night before, but our detergent is hypoallergenic-same brand we always use)--he told me to take benedryl which helps some, and a steroid cream, but it is still very itchy. He told me not to stop the azathioprine because he didn't think I would react this way if i was on it for so long before. I stopped it last night and made an appointment with a great dermatologist out of boston, but have to wait until Monday to see her. Has anyone else had a similar skin issue with this drug? Any suggestions?
kittytyping

Back again with a question

Hi all,

Still haven't been able to get my colonoscopy, but getting closer. I hadn't had cramps for a while, and it seemed like it was because I wasn't really eating solid food, or at least, only very small meals. Actually, I haven't been eating much in general. Then yesterday I went out for a friend's birthday and had one chicken kabob and some cantaloupe with prosciutto. Today, I have the bad cramps again.

I'm just wondering, do you all find that certain foods make you flare up? I'm thinking what I had yesterday was so different from the diet I've had for the past month that my stomach couldn't handle it or something.

Just wondering. Thanks :)
Jew

Freelancers Insurance

Hello all:

I was wondering if there is a freelancers insurance that covers Remicade. I am working on finding an alternative to the drug, but if I have to stick on it I'd rather not have to depend on a job I hate -pipe dream of course-. Any suggestions or those who have a freelancers insurance that covers it?

Thanks
Jew
  • mithrin

Hey

I always feel guilty because I post in here only when I feel like no one else would be able to get how I feel -in other words, the rare times when my Crohn's is acting up-.

Very stressed right now -I've had Crohn's for eight years so trust me when I say I know stress is bad-.

I have no urge to eat, I am literally buying food because I feel like maybe it would help -I know it is good to drink electrolytes. If you're not hungry eating empty carbohydrates won't make a difference-.



Normally, I contact my GI and he signs and I get my infusion. However, my GI is not affiliated with the GI at NYU's infusion center.So there is another GI who receives whatever note, signs, and then I get my infusion. The whole process, frankly, confuses me. But I am assured it 'works.' Well, no one bothered to tell me that their procedure changed about two weeks ago. And now, even though my GI signed OVER A WEEK AGO and faxed the forms giving his consent I have to go see the GI -not MY GI- at NYU's infusion center before I can get infused.

RANT:

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END RANT:
It boggles my mind to be honest. How come I can get on insurance -I was on COBRA before- which will approve my Remicade. I have insurance and money to pay for the insurance. EVEN A DOCTORS APPROVAL. Yet I have to suffer and wait. What the heck is wrong with our system? I get it, I should have planned for this, but I am so damn busy I'm literally calling my new insurance for questions while I am walking to another job.

Help? Suggestions? Anything Please.
Crohns

Prescribed Welchol

Just wondering if anybody else has been prescribed Welchol for their Crohn's? If so, has it helped you any? What is your dosage?

I was concerned about my daily bathroom trips and my gastro has put me on this. I take 2 pills (625mg each) in the morning. Just started this morning.
  • Current Mood
    depressed depressed
ballons fly

Colonoscopy not completed...

HI everyone, I'm looking for a bit of advice.  I've had diarrhoea & abdominal pain constantly since April, with one period of 20 days of very severe diarrhoea. I had an appointment with a gastroenterologist who referred me to have a colonoscopy to look into the possibility of Crohn's disease.

I had my colonoscopy yesterday but unfortunately the doctor was unable to finish it.  I had the maximum possible amount of sedative but the pain was just unbearable when he got to one spot and apparently I was moving around the bed a lot making it unsafe for them to continue.  I'm still in a fair bit of pain today.  Has this happened to anyone else?  The doctor says it is not uncommon, especially for people my age (24) but to be honest I feel like a bit of a failure because people have these tests all the time without any fuss and I must just be a wimp? I'm more disappointed and angry at myself because I thought I was going to be a step closer to finding out what is wrong.

Anyway, the doctor has referred me for a barium x-ray instead.  Has anyone had one of these?  Is it true that it's harder to diagnose froma  barium x-ray than a colonoscopy?
awkward situations.
  • addyit

Evidence of Teh Crazy.

(yes, you don't need to tell me. i'm crazy. hence what i've researched, written, and put here to share with you).

Foreword: If you have a normal, healthy immune system (as most people do), are not taking immunosuppresants, or constantly exposed to high levels of regular antibiotics, you won’t be interested in anything I have to say. Bounce off and enjoy your day. Even better…. Go take a shower. (And I MEAN it. Hypochondriacs, don’t waste your time. This does NOT apply to you if you don’t have CF, Crohn’s, HIV/AIDs, etc, or aren’t taking medication to counteract/counterbalance these things.

Also: HIV/AIDs patients are more likely to catch MAC from a showerhead than a CF patient. I don’t know about Crohnies. I’m an oddity, since I have both. People on immunosuppressants should take a peek, i think.)

Well, I’ve done some research with my family. I’ve contacted my GI, my respirologist (who, in turn, contacted my CF clinic associate’s microbiologist). I got emails from all three, which made me very happy since it was very unexpected.

 

Long Answer. Collapse )

 

Short Answer.Collapse )

 

Thank you, DrL, DrW, DrR… and the mountains of pages that we’ve gone through. New studies are VERY interesting.