The bottom line is you have inflammation in your pouch and rectal cuff/anastamosis area that needs to be treated. What is your current treatment?

they did not give a treatment plan at all.

Perhaps your inflammation is of a very mild nature and if you have no symptoms, it might only need to be monitored.

I have many symptoms. I have been begging for months for them to look because of all the pain and issues. I see another doctor tomorrow afternoon who will have my new info in the chart maybe he can tell me what is going on.

In that case you absolutely should be getting treatment. It's generally not a good idea to have inflammation plus symptoms with no treatment plan in place. Perhaps that will now change. Good luck.

The good news is that there are now some clear things that can start to be treated properly. It's less clear what "normal pouchitis" means. It is normal to have mild inflammation in a J-pouch, and it generally doesn't require treatment unless there are symptoms. The plan I'd anticipate getting produced by whoever is handling this aspect of your care would be to treat the fissures and the ulcers. Fully clearing up the ulcers should help a great deal, but if the "normal pouchitis" is also/still causing trouble you could try treating it at that point. Good luck!

Just had my flex sig today, 13 months post take down.  Have felt awesome the whole last year, no issues, normal bms.  Have to say I was pretty shocked when the G.I. came in to report I had 10-12 ulcers in various places that she biopsied.  4-5 about a mm "somewhat linerally scattered around the erythema," "scattered apthous ulcerations were seen in the ileum, and "a few apthous ulcers were seen and biopsied from the ATZ."   She asked if I was taking NSAIDS, which is a big no.  Not one since before my first surgery in Nov 14.  She mentioned something about possible restricted blood flow near the erythema.  Then she kept bringing up the possibility of Chron's which has NOW got me totally emotionally sideways......  Particularly considering my Duke surgeon did whatever test they do to rule out Chron's pre-op.  My G.I. now at Emory, said all we can do is wait for the pathology (which I get), but I feel FINE..... 

So as of now I'm extremely stressed and worried about this.  Any thoughts?

PSH, the path report may not make things any clearer. The most important thing is that you're feeling great, and that hasn't changed at all. While you'll probably be working on finding a treatment to get those ulcers to heal up, there's really no reason to focus on awful "might-be's" instead of the much better "what's real."

Thanks Scott.  Just all the "I have to tell you all these are a possibility," was pretty disheartening.  I really do feel fine.  

That's why I've been off the radar/forums since last year...

Mandig, I would think that the reference to "normal" pouchitis would mean typical pouchitis that does not appear to be Crohn's-like, ischemic, or infectious. The ulcerations at the anastomosis are at the suture line between the pouch and rectal cuff (which are not a sign of Crohn's).

PSH, please note that while you may have had tests to rule out Crohn's before your surgery, there is NO test that can actually rule out Crohn's. At least, not yet. All they can do is verify that there was no sign of Crohn's at that time. Even the latest IBD serologies are not that reliable (regardless of their advertising claims). That said, IBD is a spectrum of diseases, which includes pouchitis. The main thing is accept the possibility you may need treatment. Disappointing, but not the end of the world. Treatment before you become symptomatic may keep it simple.

Jan

Since the sigmoidoscopy the pain has been worse than before. I ran out of my really good pain killers and it is doubtful I will be able to get them again. What is the best over the counter pain medication for this type of thing? I was using oxycodone which wouldn't last long or get the effects nearly as well as before the surgeries but it helped through the worst spots. I see my gi dr today and hope he will give me something but it's nice to have some stored for when I run out that even if doesn't help as well will still take the edge off.

PSH,

Freaking out or going "emotionally sideways" because someone slaps a somewhat arbitrary and scientifically outdated label on your condition isn't necessary.  The old 2 disease classification of IBD as either UC or Crohn's is long outdated, and hasn't been updated because it's too complicated for insurance companies. Whether you have Crohn's or something else (and there might be 20 or 100 legitimate different forms of IBD based on current science), it's inflammation that needs to get treated. What is important is not the label you put on it but the response to treatment of your condition. Would you rather have treatable Crohn's Disease, completely untreatable pouchitis, or moderately treatable PSH disease (arbitrary new disease classification)?

I have had the J Pouch since 1992 but inflammation above the J Pouch was only observed starting in 2007 or so.  So it seems that I am dealing with a Crohn's-like manifestation of autoimmune disorder that occurred long after my original surgery for UC in 1992.  Because the inflammation is somewhat concentrated directly above the J Pouch inlet, there was a theory that bacterial overgrowth in the J pouch and "backwash stool" into the ileum created this inflammation.  However the inflammation is in irregular swaths, not necessarily consistent with a pure bacterial overgrowth situation, and my current GI thinks it is Crohns.  In my case rotating antibiotics are treating the symptoms (urgency, cramping) while a biologic (Remicade) is effectively treating the inflammation, based on recent scope results. So my actual diagnosis has become IRRELEVANT, because I have lived with it and treated it for many years. My quality of life is good.

As a matter of interest I had the following diagnostic tests to determine if I have Crohn's: Prometheus; CT Enterography; and MRI Enterography. All were inconclusive even after reviewed by both US east and west coast pathologists.  Bottom line, it is an utter waste of time, money, energy and emotion to worry about the correct diagnosis as opposed to the correct treatment- I would simply take a pass on all diagnostic tests and focus on treatment.

Mandig's symptoms and findings also sound like they could be Crohn's but as noted above, it's irrelevant. You have what you have, go get it treated!

Mandig,

Unfortunately, if you were taking oxycodone fairly regularly, I would not be surprised if your pain is now due to opiate withdrawal. Sure, you can have a flare of gut symptoms after a scope, but it usually does not last long. Scopes can trigger a worsening of pouchitis though. Sad to say that pain medication is not a usual treatment. Over the counter, your best bet is Imodium to slow the gut and cramping. Pepto Bismol can help too.

Jan

I only took the oxy when the pain from the fissures and ulcer got to be unbearable and I couldn't walk, sit or lay without crying out in pain. Its like that right now but I can only assume it's because the fissures are attempting to heal but every time they close a little I must go to the bathroom again and they reopen. 

The GI doc  today put me on a cream that is supposed to relax the muscles around my anus and also has a numbing agent to it. I am being put on cipro for ten days for pouchitis and then am to see him again after that to see if it helped even slightly. 

The endoscopy doc that performed my sigmoidoscopy said they need to find why my stool output can not get under control even with the use of immodium. They think that this could be the cause of all my problems as they did not find the reason for the chronic diarrhea yet he said something about them looking into the small intestine to see if there are issues there as well. He thought maybe they jumped to conclusions thinking the polyps were causing the diarrhea to begin with. So is it possible that on top of everything else the first assumption before my colonoscopies, that I have irritable bowel syndrome, could be correct? Could this be causing all my issues now? I really hope they find answers soon because today I couldn't even walk without the pain becoming so terrible. It hurts like nothing I have felt in a very long time. Pain is not usually something that stops me from anything, I was military and learned to ignore pain but this can not be ignored. 

CT.  Relative to your statements of getting treated, you're right on all counts.  That's actually the plan.  I think it's probably also important to remember though that folks sometimes just need to get frustration and or fear of the unknown off their chest.  

Yes, much more than Chron's was discussed as possibilities, pouchitis, restricted blood flow, backwash, etc. but to have my G.I., notably a renowned professor of gastroenterology at Emory leaning that direction, but admitting we'd have to wait on pathology, was still unnerving in light of my wife and young children having experienced me suffer so severely prior...  

Important to note that much of my concern is based on my own history which you know nothing about.  My UC was nasty, and literally destroyed my large intestine in <5 years.  My surgeon at Duke commented that approx 6" of the outer wall of my intestine had hardened, at risk or rupturing, and I was much sicker than anyone realized.

Leading up to my surgery, I did Remicade until I had severe allergic reactions.  I did Humira until my body developed anti-bodies and it was ineffective.  I was relegated to copious amounts of pred for years, which was dangerously impacting my body.  

Also knowing I have a family history of serious auto-immune disorders, and some of those disorders killing individuals rather quickly, the premise of having a genetic pre-disposition to what could even remotely be a rapidly deteriorating  situation for me, my health, and the burden on my family was my impetus for being a little "emotionally sideways."  

Before I come here for a little encouragement next time, I'll scrap that thought, and just lurk the forums for potential insight.  I appreciate you sharing your story, and particularly your non-condescending words of encouragement

PSH posted:

Also knowing I have a family history of serious auto-immune disorders, and some of those disorders killing individuals rather quickly, the premise of having a genetic pre-disposition to what could even remotely be a rapidly deteriorating  situation for me, my health, and the burden on my family was my impetus for being a little "emotionally sideways."  

Knowing that background certainly makes your feelings understandable.  I had read your post as suggesting that it was the Crohn's diagnosis or possible diagnosis that had you freaking out, which led to my reply.  In my years on this board I have seen an inordinate number of "I have Crohn's and The Sky Is Falling" posts, which honestly do not make much sense because they focus on a diagnosis that very likely cannot be confirmed and isn't necessarily accurate anyway, based on current medical science. Furthermore, many IBD conditions are treatable when they are treated as if they are Crohn's even if they are not, or cannot be confirmed as such.  For years, that is how I have been treated.

In any event, having a family history such as yours and a wife and children to care for on top of these issues understandably creates tremendous stress and pressure.  It's hard enough these days for totally healthy persons to raise, and especially educate their kids, among other things.

Good luck with your treatment and do not be concerned if they install a plan of treatment based on the theory that you have Crohn's.  If it works it doesn't matter.  There are a number of people in my CCFA support group, in their 30s and 40s, who have Crohn's and are proactive in treating it, and they lead very productive and happy lives.  Even with the subset of patients that have been called Crohn's from day 1, there is wide variance in the virulence of the disease and its treatability. Some live with it for many years.  I have had some form of inflammatory bowel disease in my colon, and now my ileum, for 44 years running- since 1972 when I was 9 years old.  I will soon be 53, so I have had IBD for the vast majority of my life.  I do not have any regrets and understand this is something I have to deal with and do not have a choice.  I suspect that long term my liver may develop disease from all the Meds I have bombed it with, but I don't spend much time worrying about it because I have to do what I have to do to have and maintain my quality of life.  In the interim, perhaps new treatments will come up that will spare us those possible long term side effects.

PSH, I feel your pain and can understand how you feel with all the uncertainty and doctors throwing words like "crohns" around. It's been a few months since your post, I'm not on the forums often, however I hope you are ok and are closer to a definitive diagnosis. May I also comment that I was  impressed by your dignity and calmness when replying to a post from another member who did not appear to show you any empathy and seemed extremely dogmatic in their reply! I felt aggrieved for you just reading their post! It must be wonderful to be the type of person who is so emotionally strong nothing fazes them! ( I hope you "get" my British sarcasm) Goid luck and hope things are working out alright for you x