Crohn's Disease & Ulcerative Colitis Support Group

Crohn's disease is a systemic inflammatory bowel disease (IBD) of unknown cause, that results in chronic inflammation of the intestinal tract. It can affect the entire gastrointestinal tract from mouth to anus, and can also cause complications outside of the gastrointestinal tract. There is no known medical or surgical cure for Crohn's disease, but there are many medical...

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deleted_user
deleted_user
Okay so to add to my update, and review for my question:

I have had a major flare for 3 weeks now. Am currently admitted to the hospital for what they first thought was pancreatitis, now my blood levels and cat scan is completely clear...
Doc said that I have failed Asacol treatment, and is suggesting that for this weekend when I go home that I only take steroid treatment and then talk to Doc at my appointment on Tuesday about medications.
The talk that I heard last time was aimed towards Imuran or Reminade (sp?).
I have googled each and honestly scare myself...
I was wondering what advice, suggestions, questions etc. I should ask Doc at my appointment.
I feel like a medicine test object. Prior to going to the ER I tried to get into see GI, who my normal GI is on vacation so I have seen on call doc several times in the past couple weeks... anyway they just called me and said they left some sample drugs at the receptionist desk to take for my chronic chest pain... needless to say I didn't feel so valuable at that point and when I started vomiting blood and having constant urgent bloody stool I had my husband drive me straight to the ER!
Three days later, still here... just waiting...
They put me on Colzal, yesterday and I had a reaction that included major headache, and major flushness across my face and chest... needless to say they also ran out of the prescription so right now I am on major fluids and prednisone...

Okay any suggestions...
Thanks!
Pooper Trooper... getting grumpy on fluid diets... just want to pretend I don't have UC and move on with life...
deleted_user
deleted_user
Update: So still having frequent stool, at this point I have gone at least 1-2 times per hour since 4 am. Doctor took me off Cozal, said it wasn't working. Started me on modified solids...gluten free, dairy free, and since i am a vegetarian...except sea food, kinda limits my options. But the hospital did have an amazing Gluten free pasta tossed with smoked salmon, steamed brocoli, spinach, onions, garlic and basil with olive oil. Was actually amazing, and so far tummy is liking it. i started taking Flagyl, and will have to read up on the issues and other peoples reactions to that one... we will see...
Anyway have one more night here at the hospital and can hopefully go home tomorrow... as long as my frequency slows down on the flagyl and the solids...
keep your fingers crossed. I think I am going to work on going all natural and modifying my diet, i am tired of feeling like a guinea pig with all the drugs and changes, etc... we will see..
jonge
jonge
hey,
i was just wondering if you had tried the david klein, "curing colitis and crohns" diet?
i use it when i have a flare up and im fine within a week or two. then i go back to a normal diet, where i go easy on meat, dairy and sweets.
i recommend you give it a go!!
Jon
deleted_user
deleted_user
I just started researching it yesterday...and am going to try as soon as I leave the hospital... Something has to work. I didn't have this disease before so I feel hopeful i can get my body back to its 'original' state... we will see... So far so good with the gluten free, vegan diet. All natural seems to be the best way to go, and if I maintain I might not need to focus so much on trigger foods... just stay on the natural path...
deleted_user
deleted_user
My situation was quite similar to yours last month....UC, major flare, Prednisone did not work, landed in hospital for 1 week, IV steroids did not work. Finally got a Remicade infusion in the hospital that the hospital paid for. About 80% better in two days from infusion. That was about 3 weeks ago. Currently feeling great on bm per day, no blood, no diareah, totally normal and had my second infusion earlier this past week. No real side effects from Remicade. Wicked appetite, but minding my diet; no coffee, pop, greasy or processed foods. Oh and the imuran....doc told me to take that with the Remicade...and I passed on that one. Told him I did not feel comfortable taking it. Not sure where you live, but if you have good drug coverage, that will help with the Remicade. Oh and get an airmiles card or equivalent. I'll be getting 8 infusions over the next year at $3000 each, only $10 out of my pocket, but getting full airmiles on whole 3k. =almost 1100 airmiles per infusion. Id have to spend over 20K on groceries to get that many airmiles. Might aswell get a trip out of this damn disease.

Take care,
Ryan
deleted_user
deleted_user
Be careful with Remicade, I stopped breathing cokpletely on infustion number 5
deleted_user
deleted_user
I've been one of the lucky ones on Remicade. I've been on it 2 years and never had a side effect. I haven't been sick from it, no sinus infections, or anything.
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