There are quite a few. If you do a search, you will find them.

Some do well, others not so much and wind up with pouch failure.

Jan

Count me on that team. Although the Crohns part was diagnosed 20+ years after the j-pouch failed and had permanent ileostomy.

I am sorry to hear that. Had UC, then pouch, now crohn's. What a shock, eh?

quote:

Anyone out there that was originally diagnosed with UC then after J-Pouch found out it was Crohns?

There are actually two subsets of patients, those who were thought to have UC and instead had Crohn's, and those who developed Crohn's or Crohn's-like symptoms later on AFTER J Pouch surgery. I think there are actually more people in the latter category. I had my J Pouch 1992, inflammation in ileum was 1st detected in 2008 and it is a "questionable" Crohn's diagnosis due to suspicions that the inflammation in the ileum is being caused by "backwash stool" due to narrowing of my bowel at the pouch inlet. I have a feeling that I am not the only person out there with this issue, and others are being told flat out that it's Crohn's and it may or may not be. It could also be bacterial overgrowth in this area due to the backwash stool. Which is something totally different. And in my cases the traditional pouchitis treatments have worked.

I would reiterate that people here are a little too caught up with the Crohn's/UC labelling of their disorder which is really something of a fiction because there are far more subsets of disease than exist traditional classifications into which we can fit all of them. The focus therefore should not be to get hung up on semi-arbitrary labels but rather to find treatment that works in each case, regardless of diagnosis.

CT: I don't feel "caught up in it", but rather surprised that it could happen, along with other changes during the course of having a j-pouch. Sally

Sally,

I was not referring to you specifically but rather countless posts over the years I have been on this board, which suggest that the particular poster is more obsessed with knowing whether they have UC or Crohn's than they are with getting proper treatment. And in many of those cases the diagnosis may not be correct and a lot of time and energy is being seriously misdirected.

I don't think people are caught up in it. I think people, just like Sally, would like to know why they might be having problems and what they can do about it. I also believe most people realize that a diagnosis might give them the opportunity to pursue additional options that may be more specific to either UC or Crohn's. Since a Crohn's diagnosis is rather hard to determine, it only makes sense that members would want more information. That's not dwelling on it. And since even doctors have a hard time diagnosing it, it's often a foregone conclusion that time and energy is going to be spent trying to come up with a course of action that fits a particular patient.

Pouchitis may or may not be present with Crohn's. Fistulas may or may not be present. And a myriad of other symptoms may or may not be present with UC or Crohn's. Just like everything else for pouchers, it's different for everyone.

I think initially being diagnosed with UC and then finding out that one has Crohn's sometime later can be a shock since most of us know that Crohn's seems to be more difficult to deal with. I agree Sally - it could be quite a 'surprise.'

kathy

Thanks Kathy. We learn as we go!
Sally

I am a j-poucher with Crohn's. Found out I was misdiagnosed 3 years after surgery.

Wanted to touch on what someone said here. You can't "develop" Crohn's from having UC. I just had a discussion about this with my GI doctor and with other GI's. They can't turn from one thing into another. If you have Crohn's disease you had it all along and it was just hard to diagnose which is where we get the cases of indeterminate colitis. They can't morph from one to the other though. The two diseases though very similar are different. In the cases where we see UC patients turning out to have Crohn's after colectomy are wrong diagnosis to begin with.

And yes, I was scared too when I found out I had Crohn's after surgery. I was so set on a life of no medications or disease and when I had to go back on medication and worry about all that again it was hard to deal with.

That is a very interesting theory. I have read many thoughts on this area. Apparently it is very controversial, especially when the symptoms are so different. Sally p.s. But, sounds okay with me.

quote:

You can't "develop" Crohn's from having UC

I think what we are talking about is not a disease that morphed, but one that has suddenly appeared. In other words no inflammation anywhere except the colon, the colon is removed, no problems for years and years anywhere, and then all of sudden new chronic inflammation develops in the pouch/ileum. This is not morphing, it's a new IBD disease. And I can tell you very positively and without any question whatsoever that the disease I had from 1972-1992 and the one I have now are two different diseases or the disease is manifesting differently now than when I had UC.

I have spoken to some number of GIs and what you have put forth is a theory, but it is not a universally accepted theory, and in fact it is rejected by my IBD specialist who studied under Dr. Shen. Under the theory you are advancing I would be an automatic Crohn's diagnosis but I am not and have not been with my last two specialists. They believe I have pouchitis or some indeterminate IBD condition. It does not match the classic presentation of Crohn's despite inflammation above the pouch. I would also add that it is being treated effectively despite the fact that I have a diagnosis of "UNKNOWN" for over 4 years now. That is because we, my treaters and I, are treatment focused and problem solving focused as I have described in many posts about my condition. We do not worry about the operative diagnosis as much.

And I have been negative for Crohn's on all diagnostic tests taken, CT Enterography and Prometheus.

I think it is difficult to come to terms with the notion that something we were told at one time is no longer true or that we are back into a realm of unknowns (because of new information about ourselves or about how IBD is diagnosed). It is unsettling to think that you are starting over, especially if you were told you were being cured by colectomy. It is natural to worry about the future when it is so uncertain.

Hopefully, after the initial disappointment and shock wears off, most people can understand that accepting that nothing is guaranteed and you just need to accept, move on, and try to find something that works to give you the best quality of life. I think that is the point CT was stressing. Because, realistically, nothing actually has changed other than you finding about about it. It was going on in your body, just without the proper diagnosis. I would imagine that in the backs of most folk's minds there is an inkling that something more than what you thought is going on, once there are constant symptoms and complications.

Jan

quote:

Hopefully, after the initial disappointment and shock wears off, most people can understand that accepting that nothing is guaranteed and you just need to accept, move on, and try to find something that works to give you the best quality of life. I think that is the point CT was stressing.

Jan,

Bingo. I think you said much better what I was trying to say. We get the "shock and dismay" posts and what I try and do is hasten everyone past the "shock and dismay" phase and into the "need to move on and solve the problem" phase. Because that is where they ultimately are going to be whether they like it or not. And in most cases, the "shock and dismay" is an overreaction to a change in diagnosis that may not even be correct. So the focus then becomes the drama of the change in diagnosis and the second guessing of the original diagnosis, and the emotional energy burn is so great on that drama that there is precious little left for the "accept and move on phase" in which the problem must be dealt with.

"Shock and dismay" may be an over-reaction, but (without being sexist, CT), many of us women just work that way before we come to grips with it. LOL

Yeah, but we are all wired differently in that respect. Some of us find comfort in being logical and get straight to problem solving as the best way to cope. Others cannot help but focus on the "bad karma" angle of it all, and have to work through those feelings before they can move on. I don't know if anyone can alter those paths very much, and it is painful to watch people grieve about something completely out of their control. All we can do is try to empathize and help people see that a change in diagnosis is not the end of their life.

The way I look at it, we had all better get used to it because nobody is getting any younger and there is always something more out there for you to get or try to avoid... So make the best of what you have because you only get this one time on Earth (unless you believe in reincarnation). OK, that sounds a little too fatalistic, but hopefully you get what I mean.

Jan

quote:

I think what we are talking about is not a disease that morphed, but one that has suddenly appeared. In other words no inflammation anywhere except the colon, the colon is removed, no problems for years and years anywhere, and then all of sudden new chronic inflammation develops in the pouch/ileum. This is not morphing, it's a new IBD disease. And I can tell you very positively and without any question whatsoever that the disease I had from 1972-1992 and the one I have now are two different diseases or the disease is manifesting differently now than when I had UC.

Under the theory you are advancing I would be an automatic Crohn's diagnosis but I am not and have not been with my last two specialists. They believe I have pouchitis or some indeterminate IBD condition. It does not match the classic presentation of Crohn's despite inflammation above the pouch. I would also add that it is being treated effectively despite the fact that I have a diagnosis of "UNKNOWN" for over 4 years now. That is because we, my treaters and I, are treatment focused and problem solving focused as I have described in many posts about my condition. We do not worry about the operative diagnosis as much.

And I have been negative for Crohn's on all diagnostic tests taken, CT Enterography and Prometheus.

I tested negative for Crohn's for years as well (including the prometheus test) until a scope showed inflammation and ulcers throughout my entire j-pouch and far up as could be seen with that scope. Now I have problems in my esophagus and deal with strictures which are much more common in Crohn's disease than UC. However, for the first 25+ years I dealt with my disease it was only showing up in the colon and looked like UC which is where my UC diagnosis came from. It can be very difficult for doctors to diagnose correctly sometimes. But they cannot change from one thing to the other as far as any GI I have asked has said (and I ask a lot) lol

I think we both can agree that too many people get caught up in what their diagnosis is when really the treatment is nearly the same and what needs to be done is focus on how to treat what is going on.

However, I do not think that the disease I have now and the disease I had then are 2 different diseases. I believe I had Crohn's disease all along and it is manifesting differently now or perhaps getting worse as it can do. Though very similar they are two different diseases. Besides the location the layers of bowel the ulcers plague, skip patterns vs. continuous disease, granulomas, etc. I actually have very little trouble with my j-pouch. I've only had pouchitis once and my Crohn's seems to bug other areas at the moment.

For some it could be pouchitis and some inflammation above the pouch. For some it could be Crohn's. For some it could always be an "indeterminate" case they just can't pin point. Either way, less focus on the name and more focus on what treatment works should be key.

Though in the case of the original poster, and as a female, it's just a time period of adjustment. No one likes a new diagnosis whether it's pouchitis or Crohn's or anything. For myself I just didn't like the idea of being on remicade and methotrexate and living the rest of my life with this. Now of course I have adjusted and it just is the way it is.

I don't think trying to hasten someone past the shock and dismay stage works for many people. It's like being really angry about something and being told to calm down. One will calm down when they are able to. The anger doesn't go away just because one is told to stop being angry. People have to go through their own personal process. A Crohn's diagnosis can really freak a person out. Being told to move on or that the person is dwelling and that's not helping the situation, does nothing to assist the person.

Finding out distressing news and dealing with it very calmly and rationally would be wonderful. But that's rarely the case. And even if one IS calm and rational that doesn't mean that overwhelming distress won't pop up during the process of dealing with it.

kathy

I am one of those goofy logical people who copes with these things by getting organized, setting a plan, and moving forward. So, it is hard for me to understand why people would want to waste time and energy on wringing their hands about it. But, I had the good fortune to have some nurse's training to help me see that I am in the minority, and like you said, you can't just talk someone out of their feelings. If only it were that simple!

Other than just how I am wired, I sometimes wonder if being diagnosed with UC at a young age made me more accepting of the uncertainties in life...too young to know how bad things can get!

I think that most people tend to fear the unknown and reach for the panic button first, then calm down and get reasonable later. They mostly want someone to listen, understand, and help them find the door to sanity. I suppose that is what goofy logical types like me are for...

Jan

Jan - I think you're correct about being diagnosed with UC at a young age might have made you more accepting. I am constantly amazed by the young members here and how brilliant, mature and enlightened they are.

And thank god/dess that goofy logical you sticks around to talk people of the edge. I can actually see some hyperventilaters start taking deep, calm breaths after you've posted something grounded and sensible.

kathy

I was initially, 20+ years ago diagnosed with ulcerative colitis and was told there was a very small chance I had crowns. in the last 5 years my GI MD said I am inderterminant, could be 50-50.

My frustration is finding out I have a 90%+ stricture and having to wait to determine if it is scar tissue or inflammation.

I have been pretty fortunate until now. I was diagnosed with UC in 1995 and had the ileo anal anastomsis surgery early 1996. After constant pouchitis diagnosis finally in 2003 it is Chrohns. But managed with 25 mg of 6MP. Occasional flare but nothing big.

This blockage is making me feel powerless to what your body will continue to do.

LaPetite, very positive thoughts going your way. I hope you are pain free soon. So sorry~

Jan and Kathy Smith: You two are quite a pair . . . always seem to know what to say or do!!
Sally

SallyJPouch how long have you had your j pouch? I am almost 7 mos. with j pouch and the GI did (prometheus test) which came back as Crohn's. Diagnosed with UC 2007. Since the surgery I have not been right...body still feels like it is fighting a disease. I am convinced that I now have Crohn's. GI and surgeon are not 100% about the Crohn's but I am on steroidal suppositories and I still have contractions/spasms going. Trying to stay as positive as possible and thinking this is a joke at times. I can not make this s___ up! Was looking for a reprieve in life but I guess this is my cross to bare!
Thanks for this thread. I always think I am all alone in the world with these ailments. This site keeps me sane!
Roberta

quote:

The way I look at it, we had all better get used to it because nobody is getting any younger and there is always something more out there for you to get or try to avoid... So make the best of what you have because you only get this one time on Earth (unless you believe in reincarnation). OK, that sounds a little too fatalistic, but hopefully you get what I mean.

Words to live by... ;-)

Roberta, I understand how you're feeling. I had my surgeries in l995/96, and I had constant pain, spasms for at least a year and a half. My surgeon even wanted to do another surgery (and I had six by then) to place a "baker's tube" in my body, partially sticking out my side, to prevent adhesions from adhering. Naturally, I said, 'YOU HAVE SURGERY. . . NOT ME!!!' He believed the pain was from the adhesions. Eventually, the spasms lessened and are minor now in comparison to those days. So, I got better in that regard. . . I just hope you do to. I certainly feel your pain and it brings tears to my eyes. I hate to see people in agony. Good luck, Sally

Thank you Sally! I certainly am trying to ....party like a rockstar!

Roberta

You GO GIRL!

Sally

I was initially diagnosed with UC and now they are not sure if I have crohns or not, this is 30 years later.