Flare 2 months after resection

Hi Leah

I had a small bowel resection in 2005. The next day I had the same crohns pains but no-one believed me. I then spent the next month begging doctors to listen to me! Eventually they agreed that I was right and was put on remicade which worked for a while and then onto Humira which again worked for a while. I am now on Modulen and feeling good. I have been warned to expect future surgery but for the time being I am being positive,

Probably not what you wanted to hear but I think its important to share stories and remember everyone is different and no two people are the same!

I also had a flare less than 2 months after my resection. It took a while to figure it out as I also got 2 abcesses after surgery that had to be dealt with too. I started back on Imuran and almost 5 weeks into it my bowels are finally starting to settle down. I was already on a high dose of pred when this flare started so it was decided that it was doing me no good anyways so we continued to taper.

If you can get on Imuran or remicade if needed hopefully you can get into remission. Sadly surgery doesn't always mean remission, but surgery and good meds can sometimes do the trick.

Tanya

No, I wasn't put on any meds after as my appointment with my GI was coming up in May.  How soon after your second flare did you have to have surgery again?  The hospital put me on Prednisone and I will try to get an appointment sooner with my doctor. I can't believe you had to have 3 surgeries.  I feel so bad for you but I'm glad to hear it's been 11 years since.  Do you think diet has anything to do with it.  My surgeon told me I could eat anything I wanted after the surgery, but now I'm not so sure that was a good idea.  I was happy about it because I lost so much weight and here I am again on a liquid diet so there goes the lousy 4 pounds I gained after the surgery.  I appreciate your writing back to me.  I'ts so nice to have a support group and so many nice people who care.  thanks again for your help.

Weirdly, my 3 resections were all 2 years and 3 months apart. After the 3rd one, I was holding my breath at the 2 year, 3 month mark! I don't think it is food per se but rather a combination of things. A tiny microscopic area of disease, no maintenance medication to treat that area, and THEN maybe some rougher food aggravating that little area causing pain.

I'm a firm believer in maintenance medication for those who can tolerate it. Sometimes it requires a combination of meds to do the job. But you find what works and you take it every day. I don't understand when posters want to know about stopping medication because they are feeling well. They are feeling well, because the medication is doing its job! Why risk even a microscopic flare that can cause irreparable damage? OK, I will step off my soap box now.

Leah64., I am really really sorry to hear about your flare. I am sorry both for you and also for those of us who are hoping that surgery will give them a respite. Now, I have been lobbying my GI for an elective surgery (small bowel resection) in the hopes of keeping the disease in remission and out of the loop for sometime and focus on other aspects of my life. But my GI is adamant about not electing for surgery because he says in 30 years of his experience, the relapse after surgery is 100 percent. In some people it is few months and in some cases people go for decades without any problem. Why this variance I have no idea and they don't also. This simply guessing game.

Last September I was hospitalized for 4 days with a violent flare up, severe pain (controlled only through morphine), unremitting nausea and vomiting, and feeling like I have been hit by a two ton bus. At that time they considered surgery because they were able to visualize obstruction in the CT scan, but the obstruction went away when they pumped me with pred, antibiotics, and anti-nausea.

I am on low dosage of pred 5 mg, entocort 9 mg, pentasa 500 mg two tabs, thrice daily, and prilosec 20 mg (as needed). But I haven't been able to taper off methyl pred at all (in many ways it the magic drug for me). My GI is nudging me to consider remicade, humira, or some biologic. I have been resistant to this idea because of the side effects. So unfortunately, in the CD world there is nothing much available beyond this set of treatments. Prochymal is still in stage III, but very likely will be approved in the next two years.