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I would suggest in addition to trying different antibiotics and a short course of Entocort that you also try changes in your diet. If you are eating a ton of sugar and carbs you are feeding the bacterial overgrowth situation which is likely causing these ulcers.
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quote:what is enocort
Designer steroid/immunosuppressant, tailored for use in the bowel unlike Prednisone. Side effects not as harsh but are possible, especially with long term use. They come in small pink capsules, the usual dosage is 9 mg to start and then they will try to wean you off.
The pic I posted was taken in June 2012 and since then I have achieved improvement through dietary changes, a short course of Entocort (7 months but I did have side effects), and now I rotate antibiotics one week and lactulose (prebiotic) the next.
I have been treating these issues since 1995 but they got worse between 2010 and 2012 and I think it was mainly due to my diet. I joined a dinner club and became an out of control Foodie. I have since toned it down big time.
Please keep us posted. I struggle with these same issues chronically but have not been put on entocort because my pouch ulcers were small at last scope. I do have rectal pain often and cuffitis and pouchitis at times as well. I do not sleep well most nights also due to repeat bathroom trips. I am just fortunate I am not holding down a job now as I don't know how I would ever manage.
I hope this round of medication helps settle your pouch down and I agree with CTBarrister...my pouch always seems to function better when not eating a lot of carbs or sugar. It is not worth the pain for me so I stay away from high carbs and sugar also.
prednisone. Im hoping this is the start of something good not going to get to excited yet.
Cipro 500mg x2 and Flagyl 500 x2. Have not had long term sucsess with flag or cip in past.Dont know what else to do. Im a little disapointed that the Endocort did not do it any suggestions besides stop eating...
So far I've still got meds that work, but it's probably a matter of time...
I had a scope this past Friday with another dilation under sedation.
The GI said that my pouch walls were some of the healthiest walls that he'd seen in a j-pouch EXCEPT for the 3 ulcers. Two ulcers were near the bottom of my pouch but the 3rd ulcer was near the top, my ulcers looked like the ulcers CTBarrister's image.
In regards to the ulcer near the top of my pouch he said that "Academically we could call it Crohns because of the location"; I was just coming out of sedation and was groggy but I was shocked by this because they've always been pretty certain that I had UC. In hindsight I didn't ask enough questions. He said to wait for the biopsy results.
Needless to say I am concerned about about the mention of Ulcers and Crohns in the same sentence.
I am hoping that the ulcers are just from stool stasis because I usually empty my pouch 2-5 times a day.
I've been fighting with my insurance company for the past 3 months about VSL3-DS and I've been lax about taking probiotics during that time.
Right now I am on Flagyl 325 once a day. Previous meds were Entocort, Xifaxian, and sulfasalazine.
Can someone please talk me off a ledge. I was really hoping to be medicine free after my surgeries; Flagyl once a day isn't the worst thing in the World but I just don't want it to get worse.
I suppose it can be a big let down to discover that there is no real cure for IBD, UC nor Crohn's. A concept to embrace is that autoimmune diseases are managed, not cured.
I know it is a raw deal to be led to believe that a colectomy would cure your UC, but the only thing that is guaranteed is that you cannot get UC in your removed colon or rectum. The other sad truth is that having one autoimmune disease makes it more likely you can develop another.
That sounds pretty crappy, doesn't it? It may be, but only if you let it be. The number one thing to do for anyone who wants to live well with an autoimmune disease, is accept the reality instead of expecting miracles. I am happy that there are a multitude of treatments available to help me live a normal life.
Crohn's or no Crohn's, the pouchitis will need to be treated. Hopefully it is simple pouchitis and not Crohn's.
Jan
My GI counsels prospective patients, warning them it's not necessarily a "cure," but often a necessary step in getting healthier. He tells them all that he expects at least half of all j pouch patients to have *some* issue down the line. I was lucky my lull of good luck lasted 21 years.
ks1905,
That image I attached showed ulcers in the pouch which were taken in 2012. I also had ulcers above the pouch but not quite as large. I have carried a questionable for Crohns diagnosis since about 2007, but my GI docs have suspected the inflammation above the pouch is due to "backwash stool" caused by fecal stasis, resulting in SIBO, based on the pattern of inflammation.
I changed my diet after that scope and my subsequent scopes have shown less inflammation, this likely in part because I stopped eating carbs and sugars indiscriminately, which in turn reduced the SIBO. I am not inflammation free however, nor have I been at any time since 1994. I have taken chronic antibiotics, rotated regularly, to keep the inflammation down, occasionally supplemented by a short course of Entocort if I note some slippage in my maintainance.
Thanks for the replies.
I've discussed SIBO in the past with my GI, my next appointment I will ask for the test.
I wouldn't be surprised if it is diet related. Since this past weekend I have cut out all carbs and my gas has subsided. The other thing is that I get Thrush really easy with most Steroids and Antibiotics. I now take Diflucan anytime I go on those types of medications to prevent the Thrush.
I was the last procedure of the day on Friday and the GI is on vacation all this week so I can't ask him questions about my concerns. I've calmed down some since then; I'll just make an appointment for when he returns.
CTBarrister,
Thank you for posting an actually picture on here. This is my first post to this chat and I do not have a j-pouch, but a BCIR. I have photo after photo from scopes that not just one, but many doctors have done and those pictures look very much like yours. The only difference is that my ulcers are puffier looking and are bleeding. I had 4 blood transfusions last year, and 3 pint of blood last Friday. My hemoglobin was 5.8 and the iron is bottomed out. They will start a series of iron infusions tomorrow. I have VSL #3 DS in the frig and to be honest I have not taken it as I should. It didn't seem to work and I kinda got burnt out on applesauce with it, but I am starting it again after reading all of this groups post. They are doing another scope on April 8 and the doctor said he would cauterize any ulcerations again like he did the last time he scoped me. The problem is that he said there were so many ulcers in there last time that he was not able to cauterize them all at one time without it catching fire in my intestine. I was just shocked. He said with the gas in the intestine and his flame, that it can actually catch fire in the intestines. I hope you are doing better. Any advice that you or any of the others in this group would like to share with me is greatly appreciated.