Ileocolectomy now what?

[Marksman7]

Hello everyone I am new to the forum. I joined to learn more about how I can better control my Crohns. I was diagnosed with Crohns disease in January 2009 at the age of 39, 2 months after an appendectomy. I have been battling the disease since. I have taken Asacol, Azathioprine, Methotrexate, Remicade (I had an adverse reaction after 7 months), Humira and most recently Cimzia. On July 25, 2015 I had a colonoscopy and everything looked fine. However, in February I developed an irratating pain in my lower right sight. After an MR Enterography, a fistula was found in my Ileum region. On March 1st I had about 14 inches of my Ileum and 6 inches of my secum removed. Obviously, Cimzia did not work well for controlling my Crohns. I visit my Gastroenterologist next Monday for the first time since my surgery. The Surgeon stated that he contacted my Gastroenterologist and recommended a change in my meds. I was wondering if anyone has experienced similar. If so, what meds help you prevent Crohns attacks and what diet changes have helped control Crohns?

Thank you

 

[ronroush7]

Welcome. Have you tried a food diary to see what foods aggravate your condition? I hope they can get you on the right mixture of medicines to get you in remission quickly.

 

[Marksman7]

Thank you for your thoughts. The thing that left me confused is the fact I never had a flare in the last 6 months. When I visited my doctor in February, I thought I may have some inflammation. My bloodwork was good.

 

[ronroush7]

Has he done a fecal calprotectin? That is a stool test that measures the inflammation in your gut.

 

[Grumbletum]

Hi Marksman
Welcome to the forum. My experience has been fairly similar to yours. I first flared in 2010 and they eventually found I had a fistula from my bowel to my bladder so I had an ileocaecal resection. I was on Azathioprine when they decided to operate but took me off it. At my follow up appointment, my GI said there was no point me going on a maintenance med cos nothing had worked before. I was kind of glad to be off them as some of them are so scary, but a little worried about flaring again.
Had 3.5 years remission but now I'm in a mild flare. I'm living in Myanmar so had to go to Bangkok to see a gastro doc and they have put me on Pentasa.
Did they take you off the meds before the surgery?
Like Ronroush says, people have different food triggers. I eventually used an elimination diet to identify mine.
You're not having issues with diahorrea? If your IC valve was removed, that can sometimes be a problem - is in my case - because of bile malabsorption, but I find I have fewer problems if I avoid greasy, oily food.
Hope that helps.