Need Advise and to vent

Hi, I've been reading posts here for some time, but never have been up to posting. However, I feel like I need advise and to vent. I was diagnosed with Crohns 3 yrs ago but had symptoms long before that. When I was diagnosed I was put on Lialda, cipro, and flagyl and told I should to take Humira and not look at the side effects because I wouldn't like them. Well I had a reaction to cipro and couldnt walk for 2 weeks because I had tendonitis so bad I had to sleep on the floor and crawl to the bathroom. I also found I was allergic to iodine. My doc gave me prednisone and it appeared to quiet the crohns so I chose to avoid the humira. I also left this doc cause he seemed so quick to jump to humira. well through the last 3 yrs I have continued to have flares with fevers occasionally. sometimes it can be controlled by flagyl but now I am having allergic reactions to that too. Once a year I end up on a predisone taper that lasts for 3 months. This spring my fevers got bad again and started with joint pain and cracking and I found I had developed a not so wonderful perianal fistula. I also had an endoscopy because I was having upper gi problems and found ulcers. I went for my second colonoscopy this week to see how every thing is I had a bad reaction to the colonoscopy prep and started had violent vomiting all night and couldnt finish the prep. We went through with it any way and apparently there is plenty of inflammation. Then about 10 min. after I left I got really cold and started having these uncontrolled shaking and almost convulsions. That night my fever went up to 104 and I could not get it to come down much with tylenol. the next night it plumited to 95 and all along I had some mild trouble breathing. my doc finally told me to go to the ER, though after 17hrs of craziness and radiation all they could tell me was that I had colitis, which was like thanks guys for restating my medical history. Now I just dont know what to do. I'm on prednisone again. I really dont want to move to humira. I really dont feel prepared to deal with all to possible side effects. has anyone gotten a fistula to heal with out biologics? I was really starting to feel like my flare was getting better til I found the fistula. Thanks for letting me vent!

Labradonte, I understand that you are wary of drugs and your DRs have not been very easy to communicate with, but biologics are definitely the way to go with fistulizing disease. Prednisone, like you're taking it, causes really awful problems (how about necrotic hip joints, for starters, or osteoporosis, or adrenal failure?). And as you've experienced, you can become allergic to antibiotics and that's a forever thing.

Given that you seem to develop allergies to these things, I'd focus on remicade and insist that you be given steroids and antihistamines before each treatment. Talk to your DR right away.

I hope you feel better soon.

Thanks Everyone! I have an appointment this week with my Gastro doc. I think he's been pretty good about going through the pros and cons and taking the route I feel best with, I guess I just have to start asking more questions. I really dont want to be on pred anymore. My mom has severe lung problems, is on oxygen and had bad reactions including near kidney failure from the steroids. My doc suggested trying one of the drugs and getting off of it in 2 years and see if it stays in remission. I guess I am finding it hard to commit to the immuno suppressants because i have had so many problems with even the mild things. I also thought I was feeling a lot better until the fistula came along and left me feeling really defeated. My mother health is so bad and she has always relied on me for my positive attitude but now there are so many unknowns its just becoming more difficult to stay positive. My student health plan doesnt pay for these drugs so I have to figure out how to deal with the costs. Also my insurance will be gone soon so I have to deal with that and I dont know just so much going on at once. Thanks again to everyone, this forum is really a big help!

It is heartbreaking that you have to worry about getting the meds you need.  It would be beneficial if you could stop taking steroids. There are many health problems in older people that are the result of steroid use when they were younger. Regarding biologics, I fought the doctor for years over the Humira/Remicade issue, but after my 3rd resection was told there is nothing else to be done. The way my doctor addressed the possible side effects to Humira was, "why worry about something that may or may not happen in 20 years?" (Did he think I wouldn't live another 20 anyway?)  I have been on Humira for almost 2 years now, an injection every other week, and can eat more, gained a few pounds that I really needed, and generally feel better. A big plus - it helps tremendously with my arthritis.

Whichever drug you choose, you will still have to be careful what you eat. You may go into remission, but there is still a lot of scar tissue that can be irritated. Good luck!

I can't offer many suggestions but I just want to let you know I'm in the same boat. I got diagnosed from a colonscopy that I agreed to because I was having tailbone pain. While my BMs did change a bit over the last year, I have never had D.. in fact, i struggle with constipation now... so I was completely confused when they found inflammation and called it Crohn's.

I am still off drugs.. i have tried giving up gluten and going on a low grain/carb, no sugar SCD diet. I am supplements that my naturopath has given me. She has given me the advice to stay off the meds- she seems to think that if I don't have D I don't need it. I still do worry about what is happening to my insides because I can't see that... I feel okay.. but I don't' know if that is a tell-tail sign that everything is ok.

I still feel achy and have SI/hip joint pain on and off. It seems to come and go like a flare-up and is even sometimes hot to touch... i know it must be inflammation but I don't have much stomach issues.. maybe some mild pains now and then but that seems to have been mostly controlled though diet. i have struggled with GERD recently.. and am thinking of trying some meds for that. i'm still not even sure that the crohn's diagnosis is accurate.. but i don't know where to continue with any tests or dr.'s visits.. i have already had a few tests and lucky i did because they found a bladder infection and a burst cyst in my ovary that was causing pains... thinking about visiting my PCP again but I have a feeling she'll be running out of patience with me soon.

I am struggling to figure out if I can 'fix' myself this way and through my diet or if i should try the meds to help me get into remission... i think part of my decision will have to come through the acceptance that I got diagnosed with an incurable disease and that although i have never seen my future self dependent on any meds- there isn't much i can do to avoid it. some have it better and some have things a lot worse.. i might have to stop fighting what i wanted for my future self and start accepting what was given to me... so far, i haven't... and i'm still hoping beyond hope that i can fix this with the right diet.. i am pretty committed to it.. but not sure if it's even possible at this point.