Hello again: I'm not sure of the protocol for this, but I wanted to post again with a different subject line now that I know some more information, though I am still very much in the dark -- and worried. Please see my initial post below for some background. (I didn't get any response, so I'm even more sure this is a rare occurrence.)
So I had colectomy with J-pouch creation in August and was planning to have takedown in January. Now the results have come back from the biopsies I had last THursday during flex sig, and they are pretty much inconclusive. It's inflammation of unknown cause in my J-pouch but not considered pouchitis (I guess because it's not infectious inflammation?), and the surgeon is puzzled. His nurse who I spoke with today said a couple times "yes, this is odd" and the doctor is unsure what path to take. I, of course, am concerned, esp. with a history of severe C. Difficile, though I realize C. Diff usually only found in the colon, BUT I know I read something at some point about rare cases of it developing elsewhere when colon is removed. I'm not entirely sure if the pathology ruled C. Diff. out.
I am still bleeding from my pouch 6-8 times a day and having pain and pressure. I also have a history of ovarian cysts and have had more problems with them since my surgery. Today I am having terrible pain my left back, which I am dismissing as the ovary pain I often experience -- but I'm also wondering if it could be related to what's going on with my pouch.
I'm going to see the surgeon on Monday so I can discuss all of this with him, see what the next step is, how this affects possibility of takedown surgery in January, etc.
I should also mention that about three weeks after my surgery, for about three days, I ran a temp of about 101 degrees, and surgeon had me have a CT scan, which was apparently inconclusive. But now I'm wondering if this inflammation/problem started back then. For CT scan a few weeks later, I had rectal catheter for contrast dye, and it was excruciatingly painful.
I've also been running a lower than normal body temperature since then, get cold easily and one time my temp was as low as 90 degrees when I came in from outside -- after only being outside about 20 minutes. It fluctuates throughout the day. Anyway ever experience this?

I should also mention that I had stubborn UTI after surgery, which took two rounds of antibiotics to clear up (Second was Bactrum, and I'm blanking on what the first one was).

I know I've posted a lot of information here, but ANY feedback will be greatly appreciated, because I am honestly more upset now that pathology has come back because I really don't know anything. I do have complete confidence in my surgeon; he is well-respected and has done many of these. But what worries me is how rare this seems to be, and what does it mean.

Thanks so much.
Laurie
UC since 1989
developed C. Diff in 2009
colectomy in August 2011
waiting to schedule takedown


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Hello: This is my first post, though I have visited this site a few times previously and find the information very helpful.
After 20-plus years of UC that was exacerbated in the last two years by severe and reoccurring C. Difficile that had me on Vanco for the better part of two years, I had a colectomy with J-pouch creation in August 2011. I have NOT had my takedown surgery yet, and I've been bleeding "rectally" on and off for the last month or so. Also, there has been rectal pain and back pain and pressure. I kept passing it off as hemorrhoids but when it got worse over Thanksgiving, I finally called my surgeon, who is top-notch and responsive (as is his office).
I expected/hoped to hear it was nothing to worry about, but immediately there was concern, and I had a sigmoidoscopy yesterday to see what was going on.
I don't have any final results, and I didn't get to talk to my doctor afterward because I was knocked out. They took biopsies, and the one sentence of findings I received said: "Friable (with contact bleeding) and granular mucosa at 10cm proximal to the anus."
I know this means inflammation, which I expected, and possible infection.
I know the doctor was concerned beforehand why this was happening even before the J-pouch is officially in business, so to speak.
So I'm wondering if anyone has come across this problem before J-pouch connection.

I will appreciate your input. Thank you.

Sorry you're going through all of this...I wish I had some words of wisdom for you but I don't...just some sympathy and some empathy. I've had my J-pouch for 12 years now but now am having issues and the biopsies are the same as what you're talking about: some sort of "undetermined inflammation." It makes it difficult to know what it is or how to treat it.

My doc is right now going down the list and starting by treating it with antibiotics as if it were pouchitis. Next on the list is steroids, then Remicade, then he's going to try anti-map protocol treatment as if it were crohn's, even though pathology always comes back negative for Crohn's. Then the last resort will be permanent ostomy if nothing addresses the symptoms. It is extremely frustrating though, not knowing exactly what it is we're dealing with!

But like Jan told me, it's not so important what it's called but if we can find some way to treat it, whatever "it" is.

I know how you feel about being a rare case...my doc told me I'm the kind of case that a group of doctors could argue and debate over for hours and never come to a conclusion...

Just take one day at a time. I hope they can find some answers for you!

ihh65,

First let me say I am sorry for all you are experiencing. I know how frustrating the waiting and wondering can be with this surgery.

Prior to my take down I did have suspected inflammation in my jpouch based upon my symptoms (no bleeding but passing heavy fluids while sleeping and back pain as you are describing). I was put on augmentin and have been on it ever since at 6 months later. No one did pouch biospies on me prior to my takedown and honestly I have had two pouchoscopies since and none with biospies. I am going in for a stricture dilation in Jan and they will take biopises then to determine if I have chronic pouchitis.

The surgeon (in NY also) referred to my symptoms as diversionary pouchitis and felt I would improve after takedown, but unfortunately I have not. I was also recently tested for c-diff and it came back negative. I can tell you I did have ilietis noted in my inliem at one colonoscopy prior to takedown which made me concerned about what my jpouch results would be. Again, the surgeon was not concerned about this.
Go figure with all the issues I am now having.

I am assuming you have also had a pouchoscopy to check for leaks (esp at the anatomosis line)?
Iam not sure what your biopsy results actually mean, but it could be scar tissue and healing, or possible cuffitis. I do not like the term friable as if you look it up it sounds as if it means broken down tissues possibly.

I think your surgeon may need a second opinion (and I would advise on this) if he/she is confused and not sure what it means before you push for takedown surgery as you just may need more healing prior to having the next step.

Best of Luck.

If I had to place a bet, it would be the C. difficile pouchitis. False negatives are not unheard of in the testing. With your very long history of C. diff, in my mind, it just points in that direction, especially with your antibiotic tratment post op.

Remember, C. diff is a spore forming bacteria, and that is why it can remain dormant while you are on antibiotics. Even though the vast majority of the cases are C. diff colitis, it definitely has been documented in small bowel infections and pouchitis. Do a Google search for C. difficile pouchitis and you will find it in the medical literature. I am surprised your surgeon isn't putting it at the top of the differential diagnosis list.

The other possibility is diversion pouchitis, but I think it is less likely.

Jan

Thank you to all for your responses, insight and empathy. Jan, yes, it's my concern that it's
C. Diff., which if it is is very discouraging. I don't know that that means long-term for my pouch, but I doubt it's good. I have many, many questions for my surgeon when I see him on Monday, and that is certainly on the top of the list. I'm kicking myself for not bringing up with him BEFORE I had the flex sig last week, and I only got to talk with his nurse this a.m. I don't think they had specifically tested for it, but I think the nurse practitioner was saying the pathology would point to the infection -- but I don't know that that is the case.
I was on Vanco for such a long time, and when I saw my surgeon for the first time, he was shocked and upset by how long I had been on it.

Anyway, my sincere thanks. I will let you know what I find out/how we decide to tackle this.

Laurie

Here are a few links to abstracts you may find interesting, if not helpful. You may even want to bring them with you to your next appointment (to pull out if your surgeon disbelieves the notion of C. difficile pouchitis).

http://www.ncbi.nlm.nih.gov/pubmed/18467184

http://www.ncbi.nlm.nih.gov/pubmed/21334446

http://www.ncbi.nlm.nih.gov/pubmed/20954275

If you do a search here, you will find a number of members who suffer with chronic C. diff infections or battle staying in remission.

Jan

It's been more than a month since I posted with my issue, and I'm still having problems. In the last month, I saw my surgeon after the scope of my pouch. My C. Diff worries were allayed (for now) because it turns out the inflammation is all along the suture line. He said he had never seen a pouch that looked like mine did. He gave me suppositories and wanted to see if things changed. In the meantime, we penciled in takedown for Jan. 27. I know he was hoping, as I was, this would resolve itself.
When my GI doc (who is great!) heard what was going on, he wanted to see me. This was before Christmas, and he mentioned that it's possible the pouch is ischemic. He said he'd follow up with my surgeon, which he did. My GI doc called me last week to see how things were, and when he heard I was still bleeding regularly from my pouch, he said he wanted to take a look (with my surgeon's OK).
So I had the second scope of my pouch in a month today, and it's not looking good. My surgeon used the term friable to describe the tissue, as did my GI doc today. He said it was actively bleeding along the staple line and in anal region as well. He applied multiple hemoclips and injected epinephrine where inflamed, to hopefully stop the bleeding.He again said he is concerned the pouch is not viable.
The other thing is that a large amount of stool seems to be slipping by my loop ileostomy and making it to my pouch. This a.m. before the scope, I had three voluminous bowel movements, and my doc said there was stool in the pouch, which he was not expecting.
So I'm wondering if anyone has had experience with this problem or with ischemic pouch. Another question: If this pouch is determined to be unhealthy/not viable, can they fix that or am I heading toward a permanent ileo.
As you can see, I am confused .... as well as anxious and feeling a bit depressed by all this -- even though I know things can always be worse. Right now, after all this, to have these problems before takedown is making me feel ... well... hopeless.

Thanks for reading. Best to all, Laurie

Laurie-
Sorry for everything you are going through. Its common for bowel to get by the loop ileo. So don't think I'd worry about that.

And ischemic pouches are not totally uncommon. You should speak to your docs about "what if" scenarios. There may be the possibility for a pouch redo operation instead of a permanent ileo. It also may be time to seek second opinions as you seem to be on a less traveled path than others.
Good Luck.

I wanted to give an update and ask a few questions related to the problem I am (still) having. I had my takedown surgery postponed in January because of persistent bleeding along anastomosis line and new ulcerations in the pouch -- found during second scope of pouch in January, when my GI doc inserted hemoclips and injected pouch with epinephrine to try to stabilize things. He thinks pouch is ischemic, but my surgeon does not necessarily agree. He said he has seen ischemic pouches and it doesn't look the way mine looks. In addition, it hasn't progressed; it just keeps bleeding (started in November). Bottom line, surgeon and GI doc are puzzled by this.
After trying several more types of enemas and giving it some time, things have improved a little. There is less bleeding less often, but there is still bleeding. My takedown is scheduled for March 23, but I am having a third scope of the pouch this Friday to see how things look. The doctors think they should go ahead with it and see what happens. I guess the scope on Friday will confirm if that is best course at this point. We are not sure how severe scarring may be at this point, and I am concerned how that might affect the functioning of the pouch.
As if I weren't already anxious about transition to the pouch, this has made it much worse. Still, I want to give it a try.

Now, a question about the prep for this scope this time. For the last two, I only had to not eat or drink after midnight, but this time my GI doc (based on his finding stool in pouch last time he did scope) wants me to do clear liquids on Thursday AND citrate magnesia on Thursday night. I'm concerned about that, worried about my ostomy and how much will go into it, dehydration, etc. Plus, I don't even know how effective that will be, since it likely won't even reach my pouch. I do sometimes pass quite a bit of stool through my pouch, more than is likely the "norm" before takedown. I'm thinking doing a Fleet enema might be better to prep for this. So I'm wondering experience people have had with prep for scope -- realizing, of course, most people have this done AFTER takedown, not before. But am I right in my concerns about doing the citrate. I have always struggled mightily with prep for colonoscopy; I get migraines, dehydrated, etc., so I dread doing a traditional prep, especially if it's not necessary.

Any feedback will be greatly appreciated.
Thanks much,
Laurie

I would not use Fleet enema, but just the container. Pour out the Fleet and just use plain tap water. I just keep refilling the Fleet enema container with water until the return is clear. Fleet is concentrated saline solution and can pull too much fluid from the pouch mucosa. You just need to rinse, not purge. If you want to do the mag citrate, just use half or less. If you are getting stool past the stoma, the mag citrate will too. But, I think that clear liquids the day before and a quick tap water rinse of the pouch should suffice.

Let's hope this is not ischemia, because that does not bode well long term. One thing you have not mentioned as a possibility is diversion pouchitis. In that case, the ultimate cure is takedown and restoring the fecal stream. However, it seems you are getting a fair amount of stool already, but perhaps not enough.

Jan

Thanks, Jan. I'll do as you suggest.

While they are not sure what it is, both doctors have said it's NOT pouchitis. So we'll see.

Thanks again ~

I can't exactly recall if Ayrishgirl had ischemia. She did have sepsis. But you might want to PM her about her experience. (I seem to remember that she mentioned ischemia but my memory may be faulty. Jan, do you remember?)

kathy

Yes, it was ischemia with her. Didn't want to bring it up, since she lost her pouch and it was a very bad post op course. She's OK now, but it was a scary thing.

As to the diversion pouchitis, it is not like actual pouchitis, and not well documented. If you do a search for diversion colitis, you will find more information. It is more typical of a diverted colon, but also happens in the small bowel when they do bypass surgery. I would prefer to think it is this, since having the takedown will make it go away. With ischemia, you are sort of stuck just waiting to see if the blood flow improves over time.

Jan

Thank you for these responses. I will certainly see what doctor says about diversion pouchitis/colitis, which I have now read about and see what you mean about it being more common in colon. I think the thing that is puzzling about my situation is that the bleeding is along the anastomosis line, not IN the pouch...and then the ulcerations started because of the inflammation from the bleeding? I don't know. Some of this is very confusing to me. Over all these years of having UC and then C. Diff., I became well-versed in those diseases, but this is a whole new ball game.

As far the ischemia, which is what my GI doc thinks it is (and he has been great in caring for me since I got C. Diff. almost three years ago), but the surgeon says it would be in the area farthest from the blood flow, not where they are seeing the bleeding. Jan (or anyone), do you agree with that? My GI doc says ischemia can happen at any point/place in the pouch, that he sees ischemia sometimes in people who have had gastric bypass.
Thanks again.
Laurie

I learned a long time ago that sometimes people do not follow the "rule book" as far as disease and diagnosis. Just because ischemic pouchitis presents typically in the distal limb of the pouch, it does not mean it cannot occur elsewhere. This is particularly true if you have a clot that does not completely occlude, but just reduces the flow. Here is a link to an article that might give you more information. Scroll down until you get to the part about ischemic pouchitis.

http://www.nature.com/ajg/jour...ull/ajg2009530a.html

Of course, both ischemic pouchitis and diversion pouchitis could both be totally wrong, and that is why it can be such a bugger. Have they ruled out foreign body reaction to the staples/sutures? Perhaps you just need them removed? I know that sounds too simplistic, but just a thought. I have heard of it before.

Jan