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Crohns and me

Hi, I was diagnosed in 1995. I probably had crohns for a number of years prior but the dr thought it was gastro, I have had 3 sub acute bowel obstructions by the time i got the diagnosis on the back of a collapsed gall bladder. The doctor i was seeing insisted on a colonoscoy and gastroscopy and then gave me the ''news'' ! I have had a lot of interesting times with this disease, but the drugs have caused me no end of difficulty. I went on endocort in 2002, within 3 weeks i had cushingoid syndrome, and my adrenal glands shut down, I tried imuran, 6mp, methotrexate, flagyl, and I have varying allergic reactions from pancreatitis, however been on Humira now for 2.6 years following toxic mega colon incident. The Humira has been fraught with side effects of hives everywhere, terrible sinus and surgery on my sinuses, and now intense pain in my lower legs, burning and cold, aching and numb pain from knees to toes. The humira is now stopped and i am back on prednisolone, and endep for pathway pain and endone for the pain. I don't know what is wrong, the rheumy has checked for lupus but ANA titre is 1:320 homoginised, and she thinks this is not that bad. I am not sure what happens next, but I think i am getting some sort of diabetes reaction to the cortisone as I am incredibly thirsty and off to the toilet a lot.

I am really hoping by joining this forum someone out there has had a weird reaction to Humira like I am having, because the doctor thinks i am depressed :yrolleyes: !!!

I really wish i was not as sensitive to medication as I am, it is bad enough I am lactose, fructose and have crohns, but to find i cannot take most drugs as well is seriously annoying :(

Linda
 
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Trysha

Moderator
Staff member
Hi Linda
Welcome to the forum.
I share your pain.
I have had bad reactions to ciprofloxacin, metronidazole and Imuran.
It makes one very cautious when it comes to taking other unknown drugs.
There is a subforum on Humira and Remicade and other therapies.
Take a look around the forum and you will find loads of useful information..
My reactions are no way near as extensive as yours but I think that IBD symptoms arise from over abundance of inflammatory reaction so the dice is already stacked against us.
Sorry I can't be more helpful
Feel better soon
Hugs and best wishes
Trysha
 
Hi Linda, welcome to the forum. Sorry to hear your having so many probs with crohns and med side effects. There are many wonderful people on this forum, with great advice. And the humira subforum is great for info too. Best wishes, hope you feel better soon :)
 
I am feeling uplifted ... thank you all so much. Great to talk to people who know what it is like to have all these weird things xxxx
 
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David

Co-Founder
Location
Naples, Florida
Hi Linda and welcome :)

I know we discussed B12 deficiency in another thread, I just wanted to mention it to you again in this one :)

Sorry I missed welcoming you, I was on vacation.

It's great having you here!
 
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