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Crohn's Disease treatment options

Well, here is my story. In Sept. of 2004 I had my gallbladder removed. After that everything went downhill. My bowel movements were like pure bile The doctor said that was normal after gallbladder removal and things would get better. After 5 months of this and constant trips to the bathroom my doctor that removed my gallbladder referred me to a GI doc. Feb. 2005. She did a colonoscopy and said it was Crohn's disease. Said there was alot of inflammation and several ulcers at the terminal ileum. I started out on sulfasalazine and Took that for 6 months then started Pentasa. After a year on the meds I was doing much better, seemed to have things under control. Doctor told me she didn't think it was Crohn's disease after all because she thought the ulcers may have had to do with the anti-inflammitorys and antibiotics I was on for a sinus infection I was so relieved this was Feb. of 2006. I was finally off all the medications. Well, in March of 2007 the symptoms started coming back full force. I believed it was just stress and read alot about gallbladder removal, and thought this was all normal. Finally in August of 2007 being totally exhausted and wondering what this could be I went back to my GI doc. She did another colonoscopy and said it was definatly small bowell Crohn's disease I was floored. This couldn't be happening. She started me on sulfasalazine again and Entocort for three months. Then, onto pentasa again. After going off the entocort things started getting worse again. After 10 days of being off Entoctort she put me back
on it for another two months. I have been off of that for three months now but still taking the pentasa, and many vitamins Folic acid iron twiceTwice-a-day a day, vit. D,Calcium Magnesium , mutivitamin, and omeprezole. She did another calprotectin test and sent it to the mayo clinic, it came back
Back at 413 (o-50) being normal. Aug. of 2007 it was 455, then in Dec. down to 339, then in march 229. I was sure it would be closer to normal at least hoping I guess. Anyway, she wants to do another colonoscopy in two weeks and for sure start me on 6-mp or Imuran. Maybe humira or remicade. I am so terrified of going on any of these. All I read about is all the bad side effects and it scares me to death If anyone is on any of these please give me some advice. I have been reading on natural substances like barleygrass and that all sounds good but not sure if it would actually help seeing how bad this flare has gotten...Please help.... Confused
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replied January 16th, 2009
I have so many suggestions for you and 40 years of experience dealing with crohn's/colitis. Please let me know if you're interested.
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replied June 8th, 2009
I have almost 20 years of living with Ulcerative Colitis which is a little diferent than Crohns but alot of the same problems. I am on Remicade now just for 2 months I have had some side effect and I'm not sure at this pint if I will go ahead and have surgery but it is working for my UC. The symptoms are going away. I had swollen ankles there were very painful for about 5 days. Remicade isn't for everyone but in your case where surgery usually isn't an option it may be a good choice. Some people do very well on it and sware by it and others don't do so well. You will always find this with a drug. You will just have decide if it's worth the risk. Odds are you should do fine with it should you decide to go that route. I hope this helps and I hope you are feeling better. I know how painful and controling these diseases are. I'll post again after I get further into the Remicade and let you now how it's going. Take care!
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