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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intolerant to meds- need help!

zimamanda
zimamanda
Hi,

I'm new to this and wanting to know if anyone has gone through anything like this and can give any advice. i'm 21, and was diagnosed with pan ulcerative colitis 6 months ago, after being put into hospital with severe bleeding, diarrhea and terrible cramps. i'd been experiencing these since i was 15 and finally a doctor could figure out what was wrong! I was keen to start fighting this and getting better but i have been having big problems with the medications. I was started on asacol, was found to be severely intolerant, then dipentum, then put onto pregnisone for 5 wks(not even that managed to improve me), and recently salazopyrin, which nearly killed me off(my side effects included liver failure and parotits) i am now on entocord enemas which seem to be helping a little, but i don't know how long i can stay on them. My GI is extremely baffled with me, and thinking about a trial on salofalk, after i go for another scope in 2 weeks. and failing that, azathioprine, but my doctor is very worried about that given my response to the other treatments, he has told me it could be very dangerous. i even saw a dietician and have cut gluten and most diary out of my diet, not even that is helping.
Sorry for the long story, but need to get it out there and ask if anyone can help. the emotional strain and strain on my university studies are getting very hard to handle :(
deleted_user
deleted_user
I am also 21, but I have Crohn's Disease. I'm not sure how much these diseases differ or how helpful my response will be, but here it goes. I first started on Pantesa, which is a pill and quite frankly did nothing for me but a different person and condition may yield different results. Remicade, an IV infusion helped my symptoms but put me into anaphylectic shock on my 5th or 6th treatment. Again, different results are possible. Humiera, weekly home injections turned out to be no good as it is very similar to Remicade and my body rejected it. Now I'm on Cimzia, a monthly home injection, and basically my last option before a second surgery. Although it is helping my Crohn's symptoms, it's giving me some troubling side effects. Not the most positive response, I know, but at least can give you some ideas of Crohn's medications that may be applicable to your condition.
deleted_user
deleted_user
Oh, forgot to mention, I also tried Mercaptopurine pills, started shutting down my pancreas within three weeks.
deleted_user
deleted_user
well i have crohns. had bad experience with asacol. predisone is the pits . i have low tolerance of drugs. but i did take azathioprine with predisone for a month and it helped alot then went on remicade. doing lots better now. azathioprine with predisone was tough but as i took less predisone every week it got better. azathioprine is kinda like remicade. same side effects. doctor wanted me to take both azathioprine and remicade but both were too much. i got bad nose bleed throat closed up and severe sinus headaces but can handle one. you just have to experiment. remicade my body is slowly adjusting to it. first sore throat and headaches now hardly notice. did get rash on 3rd infusion but now just have dry patches. so i will tolerate medicine to give it a chance unless i get pain in colon then i get off it. hope this helps
Rachel59
Rachel59
Hi, I have crohns and we're doing the switch meds dance right now..

I don't know what to tell you regarding the medications, but wanted you to know I care.

Keep us posted on how you do.. We do care..I know the emotional strain is VERY hard for me, so the support of the members is good for us all. Nice to know we're not alone...even if we don't have all the answers.

Rach
DaltonUC
DaltonUC
I am sorry you are having a difficult time. I have UC and have been treated for 6 months with a variety of meds. I originally started on asacol and had a bad reaction. My GI took me off for two weeks and started prednisone. After the pred taper, I was back on asacol but did not have any problems with it, but only slight improvement. I was put back on a higher dose of prednisone (4 months) and Azathioprine. The Azathioprine gave me flu like misery, severe joint pain, and headaches for about three weeks. These side effects have faded and I am continuing my pred taper for another 4 weeks. So, I'll be just on asacol and azathioprine and see how that goes. I am doing better and do see an improvement and have not had any bleeding for more than 6 weeks. We have all had challenges with this disease and all of our journeys can be different. I've seen that some of the reactions to the meds can be difficult but temporary. I stuck with the azathioprine because it can take several months before this drug can start to be effective and it is better than long term steroid use. My GI says there is no one, single approach that will work for everyone. Know that your doctor has your best interest in mind and that healing takes time. There are many caring folks in this group. I hope you start to feel better soon.
zimamanda
zimamanda
Thank you everyone for their responses and for caring :) only been on the new meds for a week and a half and feeling a lot better, so i am hoping this will continue!
rmb
rmb
Glad you're feeling better!
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