Just curious. I was diagnosed with Ulcerative Colitis in 2004, colon removal happened late 2007, early 2008 got my J-Pouch. I have Ankylosing Spondylitis as well. I have had great success with my J-Pouch and am so glad I did it, but I continued to have aching and pain in my abdomen. In 2010 my GI agreed to do a Pill Endoscopy and there it was....right in the middle of the tract of my small intestine.....ulcers...a lot of them. They were too far in to be found with the typical endoscopy scope or the colonoscopy scope. Ugh. It is 2015 and my J-Pouch is still fine. Anyone else have this type of experience?
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Sort of. I have recently been reclassified as Crohn's (within the past 18 months), but there have not been any definitive signs of ulcerations in my small intestine. The reclassification is based on the number of very bad fistulas I have had over the past 5 years and a couple of other (self-reported) symptomatic things. My surgeon decided to reclassify me so that I would get faster attention when seeing new specialists & in case of emergencies -- plus her gut feeling that it was some underlying Crohn's. But, again, no actual ulceration has been found definitively.
Similar to GinLyn here.
I felt "off" all of 2012, and kept saying to the hubby that I wondered if I had developed Crohn's. Odd, I know, to say "gut feelings," but there they were. I felt like I had physically when in a UC flare: constant low-grade fevers, malaise, bloating. It wasn't so much that my pouch was bad or off, it was a full general sense thing.
Then December 2012, I developed a perianal abscess that became a fistula. Also get strictures and narrowing at the lower anastomosis these days, something I never had in 20+ years.
Then, my daughter developed indeterminate (likely Crohn's) colitis, and light bulbs went off over everyone's heads.
My GI doesn't always believe we develop "Crohn's" but has a theory that our past IBD hx can never be "genetically" rid of, and eventually, especially *older* pouches, etc tend to start being targeted by our own genes. There are definite gene conversions in pouches, and eventually their mucosa reads as "colon."
He thinks of IBD more as an "umbrella" of diseases, and our lack of colons but pouches turning "into" colonic type mucosas might be triggering something.
I've be taken some steroid tapers, and I'm on Humira, and I feel waaaay better these days. My kid was put in symptom remission by Humira in 3 days after her first shots.
just keep swimming.
Thanks for your responses ladies.....my son has Ulcerative Colitis as well....he was diagnosed at 7 years old and is now 15. His GI said sometime ago that she felt like he had Crohn's from the signs she saw in his stomach, but we have no "official diagnosis" as of yet. None of the Biologics worked for him, so we went back to the basics....Methotrexate. It finally got him in remission. I guess it was what his body needed. I have been on every imaginable drug for my Ankylosing Spondylitis and Inflammatory Bowel Disease....Remicade, Simponi, Humira, Cimzia, Methotrexate, and the list goes on. Things are under control with the IBD for now, but I never really feel good. I have a lot of fatigue and joint pain from my AS, abdominal bloating, pressure and dull pain, but hey, life goes on and I make the best of it every day! Thank again.