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9 replies

Ok recent scope but awful pain

J jeaneMember
I am wondering if anyone has experienced this.

Last week, my scope results came back where I have mild cuffitis and pouchitis in distal pouch. As many know on the board, I have been struggling chronically for some time.
Yesterday I started passing a lot of bright red blood every time I emptied my pouch. I continue to have issues emotyung my pouch from a stricture (the GI said looked better than last time) and continual inflammation in the cuff.

I have not received my path yet but have terrible lower left pelvic pain before emptying my pouch as well as lower back pain and what feels like internal pain at anastomosis while trying to pass stool. Often it feels as thiugh i can barely hold back the sensation of emptying the pouch. In addition, I believe the bleeding is coming from the connection and the lower anal canal.

Does anyone know how a report can come back looking ok to your GI yet your symptoms seem to be getting progressively worse? Does anyone know with constant anal irritation and now bleeding if you are even a candidate for advancement surgery? I am seeing surgeon in next week to figure where to go from here as all my current treatments are failing. I have asked for oral prednisone as I have to take my son away for weekend college visit and have black tie dinner for him tomorrow and I can barely get out of bed. Not sure how I am going to make it through next few days.
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R Rebe0505Member
dear jeans you certainly have your challenges and i am so sorry you are in such discomfort and pain ..my heart is going out to you...

jeane have you ever considered going to cleveland clinic to see bo shen..your situation seems so out of control..at clinic you might consult with go dr. shen and the surgeon together to try to figure out what is going on with you..at clinic you kind of can get both go and surgeon putting their heads together to figure out best approach and maybe get this all under some control..not saying they are the magic bullet but if i were you i would be seeking out the best of the best to get help..someone has to look at your whole history...
AllyKatAllyKatMember
I'm sorry as well Jeanne. Although I know your surgeon is one of the best before I had my pouch advancement with him I had a second opinion at Cleveland. T might not be a bad idea. Although Cleveland wanted me to remove my pouch, I stayed with Dr. M to have him fix it. Getting the second opinion even though it was totally different made going forward with the advancement surgery a much easier desicion. On the other hand you r very sick? I guess another factor is how long you can wait to have something done? I hope the pred works you might want to try endocort to buy some time.
J jeaneMember
Thank you for your responses. I appreciate your input.

I went to the Cleveland clinic a year ago and sat Dr. Shen and Dr. Remzi and had a pouch scope and biopsies. They did not diagnose anything out of the ordinary other than the stricture at my anastomosis connection. The odd thing is my pouch always looks pretty good. I have had inflammation in the distal pouch and cuff. Even before my recent path, my GI indicated visually the pouch looked pretty good and the stricture was better since last scope.

This recent diagnosis has thrown me for a curve. There is not much information on eosinophils as it is a relatively rare condition of unknown etiology. What concerns me is it may be a more serious underlying cause other than IBD. I plan in seeing an immunologist this week and asking for more detailed bloodwork.

I was taking Canasa forever along with nifedipine. My GI has had me stop all of this, as well as supplements, as the tissue injury could be drug or parasite related. I have had a number of scopes that have shown inflammation in biopsies but nothing diagnosed like this time. I am waiting in stool cultures before starting the prescribed entecort.

I am also going to make a follow up with my surgeon to see if he has any patients with this issue and what the chances are if maintaining the pouch with it.
Jan DollarJan DollarModerator, RN, retired
Two things come to mind.

First, there is the known phenomenon of the degree of symptom severity not matching the degree of inflammation. Someone with mild inflammation can have severe symptoms and someone withe severe inflammation can have little to no symptoms.

Second, you can have significant disease outside of the pouch causing symptoms that is not visible on scope.

Jan Smiler
J jeaneMember
Jan,
When you refer to disease outside the pouch could that be the arthritic type symptoms? I know the level of inflammation in my pouch does not match my symptoms, at least visibly. GI alwsys says pouch looks pretty good with some mild inflammatikn visible in distal pouch. a linear ulcer at connection and mild cuffitis at last scope. And then there's always that nasty stricture which appeared better this time. Path appeared worse.
Although inflammation looked mild, path showed more involvement and the symptoms are awful.
Jan DollarJan DollarModerator, RN, retired
No, not talking about elsewhere in the body, but on the outside of the pouch, such as pelvic abscess, fluid collections, adhesions, that sort of thing. They cannot see the tissues outside of the pouch via endoscopy. Sometimes even CT and MRI miss these things. Only exploratory surgery detects them. So, if you can become functional with medication, I say go for it!

If you have arthritis or other systemic inflammatory diseases, those may be adding to your misery, but not necessarily a direct cause (as in increasing your symptoms). If i have active pouchitis, my arthritis worsens, but not the other way around. It is otherwise pretty random.

Jan Smiler
J jeaneMember
Interesting. I have bad a few MRI's that have been pretty unremarkable, but that's not to say I could still be experiencing some of the things you have mentioned.

So far with about a week or more on sugar free, gluton free diet and no starches at all, I am feeling better. Still think I may need that entocort and just waiting on stool results before bellying up and stsrting it. I hated prednisone and really hope the side effects of this are less as has been indicated. I hope I don't have to have another pouch biopsy in 6 months to see if the new med is working. This last one was very uncomfortable the day after and I have lost track of how many I have had since the initial surgery, but when the nurses call you a frequent flyer in the OR that is not something to brag about!
TE MarieTE MarieMember
Hopefully you are taking a short course of prednisone.

Did Dr. Shen evaluate you for IPS? I'm sure he did but the description of you non inflamed pouch sounds like mine and I have IPS. I was diagnosed with this by Dr. Loftus at Mayo.

Dr. Shen has written several technical papers including sections about IPS. The descriptions of your pouch sure sound like mine. I'm not talking about any of the rest of it as your cuff problems have not sounded like my cuffitis.

I think you have tried anucort suppositories, steroid ones at your cuff before. I've used those instead of canasa and they didn't help so since canasa helps my cuffitis maybe anucort will help you.

I hope the prednisone helps you and you can enjoy the upcoming time with your son and family.

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