Using Remicade After Ileostomy Surgery for Crohn's Disease

Here goes...my first question online after ileostomy surgery on 1-9-15. In August 2013, at age 59, I suddenly had a very sore bottom. I thought it was hemorrhoids, but it turned out to be anal fissures. Around the same time, I developed canker sores inside my mouth. Two or three at a time; one would disappear, then two more would show up. I had an anal sphincterotomy in October 2013. Both my anal surgeon and my primary doctor said, "This could be Crohn's disease." (I had had two colonoscopies back in 2009, though, with no signs of it then.) Anyway, I did have a colonoscopy in December 2013 and was promptly diagnosed with Crohn's. I was immediately put on prednisone (40mg a day, tapering down to zero after several weeks) along with Apriso, four daily.

Oh yes, let me just throw this in. I had not thrown up since 8th grade... (about 1968) until the summer of 2014.

So things were really fine until late June 2014. I began having lots of loose bowel movements, was sicker than I've ever been, and was diagnosed with C. diff in early July 2014. I got more anal fissures in September 2014, had a Kenalog injection in October 2014, which was so much better than the bottom surgery I had.

Well, I never got over the C. diff. I took Flagyl, Vancomycin, and Dificid and lost over 60 lbs from July 2014 - January 2015. I changed GI doctors, was put on Remicade in October 2014, which did absolutely nothing for me. I went to the emergency room on 1-8-15 and had "temporary" ileostomy surgery the next day... luckily, the surgeon was the same one who had done my Kenalog injection in October. I put quotes around "temporary" because I chose not to be reattached. So, I do still have my rectum and anus for now, at least.

All that history leads me to my question... I am still receiving Remicade infusions every 8 weeks. Is this common? Is there anyone out there with no large intestine who still takes Remicade? I will say, for the most part, I feel GREAT since the surgery. Only one short episode of canker sores since January, and I am a healthy weight and can eat most everything with no trouble so far. So here's another question. Is there anyone who has NEVER had a blockage? That is the one thing I really fear.

Thanks for any replies. I am learning so much from y'all!

Hi Ivastoma, I wanted to reply to your question about blockages.  I have had my stoma for over two years and it is permenant.  So far, I have only had some belly pain which ended up being gas.  Interesting when my stoma toots...lol.  I am pretty particular about my diet including avoiding foods that could cause blockages.  I don't risk it at all.  I also drink lots of fluid with my meals and chew my food very well.  I was never a pineapple, coconut, grisly meat person anyway, so avoiding those items are not a problem.  I enjoyed eating nuts so today I buy nut butters including almond, cashew, sunflower, peanut.  I enjoy them with less chewing.  I also liked raw veggies but as I got older avoided most of them because I would end up with stomach pains.  I take the peels off of apples and potatoes.  I am not a doctor, but I am thinking that your physician may be keeping you on the infusions b/c of the Crohn's.  You may want to ask the next time you are infused.  Hope this helps.  Take care and keep posting.  Have a nice night.  LH

Hi Ivastoma,

I  have had Crohns since I was 13yrs. old. Skipping all the gory details, my last surgery and the last major attack will be 10yrs. in December.

I have been on Remicade since then and probably will be for the rest of my life. It has helped keep the Crohns at bay.   I hope this helps you.

Kray 

Wow I just re read my original post from 2015. I must have had a premonition because on 10-31-15 I went to the emergency room after having no output for more than a day and throwing up several times. Turns out I had scar tissue bad enough to need lysis of adhesion surgery on 11-1-15. But I've been fine since th r n. Of course the worst thing I remember about the whole thing was the g tube!