I have a couple of small ulcers in my pouch. I take cipro on and off for my issues. Neither my gi or surgeon were very concerned about these. I think they will treat you based upon how disabling your symptoms are and you may be on a short period of antibiotics. For me, my pouch rarely bothers me rben with the ukcers. Most of my issues are in the remaining rectal cuff and the cipro really helps with the burning and pain I get in that area.

Flagual and cipro did work for a couple of weeks between the two i was on them for about a year with no long term relief.Thats what brought us to the scope

See the attached pic, is this what it looks like?

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.

Yes thats it.Have cut back on carbs and sugar what is enocort

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.

Went to gastro dr today for follow up after scope.Started taking Entocort for the next 8 weeks than cut back for two more weeks .It apears that this steroid only has a 4% stistemic rate witch if i understand it corectly means only 4% is obsorbed into your body the rest gose to your intestends flagual and cipro only worked short term still on vsl ds hoping this works. Need sleep

Allin,
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.

Just an update . Got to sleep last night at10:30 and slept till 5:30 this morning have not had 7 hours sleep in a row in a long time 10 to 12 mounths. started enocort 11 days ago also taking vsl3ds x2 a day .I do not seem to have any side afects like i get with
prednisone. Im hoping this is the start of something good not going to get to excited yet.

Monday night was great. Last night was no good I cant figure it out .

I just joined the endocort club after 4 blissful years of remission. My diet has not so good lately and I wonder if this set things in motion? Again.

Back to doc yesterday still not feeling good had 1 good day the last five after that were not good and a little worse every day after.Was taking Vsl3 x2 -Endcort 3mg x3-Lomotil x3-. Now added
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...

If I ran out of medication options to control pouchitis I'd try a very low carb diet. It's a nuisance, which is why I've held off. There's some disagreement about which carbs are okay, so my approach would be in the spirit of an elimination diet: I'd cut them all out for at least few weeks, to see if that extreme approach provided benefit. I'd then add back some carbs permitted under one of the diets - I'd probably pick low FODMAP - and monitor the results. Other candidate diets are SCD and paleo.

So far I've still got meds that work, but it's probably a matter of time...

Thanks Scott what is your basic diet

My current diet is "I eat whatever the heck I like." I know I may have to give up that pleasure one day, but a guy can hope it isn't soon! I do supplement with Metamucil.

I am using now vsl3d 2 x a day, endocort, ifaxcan, canassa 3000 mg, cortifoam, and bultrate suppositories. I too am at my wits end and running out of options.

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

Unfortunately now we know this surgery isn't always curative. IBD is such an "umbrella" sort of autoimmune issue.

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.