Why does NO ONE consider this?

Kitty,

The reason they don't recommend this I am sure is because many people do have successful jpouch surgeries. Also, I am not sure if leaving the colon intact without stool passing through will truly heal the inflammation that comes with UC and as your surgeon indicated, the disease is likely to recur when the colon is functioning again. There is also the long term risk of colon cancer with active and chronic UC and I am not sure disconnecting the colon and letting a diseased organ hang around in your body will eliminate this risk of cancer or even eliminate the UC symptoms.

Hello Jeane,

I agree fully that the disease will likely come back when re-connecting. I also know many people have successful jpouches but there are also many who have struggles with jpouches (Some minor, some moderate, and some so bad they have to lose the pouch).

So, for people who might be a little tentative or not ready for the jpouch yet, why is this never considered is what confuses me. And to answer ur concerns with this, the idea would be to do this for a temporary time period with the hope that all this UC research leads to a better medicine or treatment in the next 5-10 years. The doctors seem to agree that when the diseased organ is disconnected, it relaxes the UC symptoms quite well. The cancer risk is probably still there but you still have a jpouch option in the future with this option.

If you don't think you need the surgery yet maybe you don't. I hate to see people put themselves though years of torture and poison medications trying to hold onto a diseased colon in hopes of a cure. I am a pessimist. I don't see a cure coming anytime soon. I haven't seen anything close to a cure the last 20 years I've been aware of UC. I don't think they would leave a diseased colon in the body long term as there are all sorts of problems that could happen from infections to the blood supply and so on. It sounds good in theory but a cure would have to be at least in trials, IMO.

Look into laparoscopic surgery and a mucoscomy with a hand sewn vs double stapled procedure before deciding what kind of surgery you decide to have. I wish I'd educated myself more about the different types of j-pouch surgeries before I had my surgery but don't regret having it.

You are right to consider all the angles of these surgeries as it is huge decision. I wish you all the best.

Speaking from experience and from someone who has had jpouch complications I agree with temarie and would look into the mucosectomy and hand seen pouch. I wish I went this route as I have had chronic issues with residual UC since my surgeries and to be very honest my symptoms are way more disabling than my UC symptoms ever were. In hindsight I would have opted for 6 mp or biologics earlier on in my treatment. I believe I would still have my colon today if I did and would have spared myself almost three years of chronic issues and ongoing pain.

There are, however many people on this board who are healthy, dusease free and medication free living with a jpouch. The issue is it does not work for everyone and until you have the surgery you will not know if you are one of the fortunate ones where it does work for you or one of the less fortunate ones where it does not.

If you have other medication options I would try those first.

1. You can get bowel rest simply by restricting your diet to clear fluids and elemental diet formula. It is completely digested before getting to the colon. If need be, you can have TPN for the short term.

2. Many treatments for colitis, UC or Crohn's are oral and topical based. If you divert, those medications cannot get there.

3. The colon actually needs the fecal stream for nutrition (short chain fatty acids). Without it, diversion colitis can develop, so this can be counter productive.

4. Since you have Crohn's, you are not in the same group as most who opt for the j-pouch. But, according to the literature, while diversion usually quiets the disease in the colon, it also usually returns when the ostomy is closed. So, once you are considered refractory to medical management, that remains the same with or without diversion. The diversion winds up being a waste of your time and medical resources, delaying your positive outcome.

Jan

They did that to me when I was 2 (in the 1960's)...gave me a colostomy and a bag until I was 3...in the end nothing changed....I ended up suffering for a lot of years and had to have my k pouch in the end.
Sharon

I have met people at Cleveland Clinic with Chron's that does this. One guy had a nasty all over Candida yeast overgrowth in the blood stream and got a bag for a year with the picc line to get it out. He has had an ileostomy about 5 times now to give his guts a break, that is about all. Then he gets back on a raw vegan diet with herbs and says it puts him in remission. No cure though, just gives people a break from crapping all the time is all they seem to say. With Chron's you aren't usually told to get a pouch.

Thanks vanessavy. Yes, my docs think I may have Crohns now - they say I am in the middle of UC and Crohns so I am considering this option. I know it is just at temp fix but right now even a temp fix would be amazing so I can go back to work and all. The others you met at CC that do it - how did they do? Did they at least do well during the disconnect?

Yes, a diverting ileostomy can definitely help give some normalcy back to your life, so you can take time to weigh all your options. But, pretty much the same as UC, subtotal colectomy generally does not work and the entire colon has to go. If you are lucky (and if I remember correctly Kitty, you are not) there is rectal sparing and they can do an ileorectal anastomosis. Otherwise, the rectum has to go too.

But, still buying time so you can work and live makes sense.

Jan

I guess it depends on your Chron's and best for you. My friend doesn't have to remove her colon and she has Chron's because her colon doesn't get affected by it, only her small intestine does. My other friend with Chron's has no colon or small intestine issues, hers is all upper GI. People I meet that get temp ileos are just tired of going to the bathroom 20+ times a day and need a break then reconnect. Everyone has a reason why they do something. I for one would never take my colon out if I could have avoided it.

Thanks Jan Dollar and Vanessavy - it does sound like a good option in terms of going back to normal life. And Jan you are totaly right - I am super unlucky. It seems the two things that can go wrong with this approach are diversion colitis and/or strictures at the site of seperation or elsewhere (especially since my diagnosis could be crohn's)

Jan/Vnaessavy or anyone else - do you know common diversion colitis and strictures are in this type of disconnect operation? And if they are treatable generally?

Also Vanessavy - if you can think of anyone or come across anyone who has gone through the temp ileo process for temporary relief with colon in tact, please do let me know as it would help for me to be able to talk to someone. Thanks!!

I've heard of this being done for Crohns and even extreme cases of diverticulitis. It's also sometimes done on a temporary basis for individuals who have had their colons resected for cancer.

I think with UC, a colectomy is often put off until the situation is dire - if there is a risk of perforation, this does not dissipate with a diverting ostomy. Moreover, there is the systemic aspect of UC to take into consideration - I was severely ill with UC. My colon was poisoning my entire system. I wasn't going to get better until that colon came out. A diverting ostomy also wouldn't have solved the problem of interintestinal manifestations. It's also doubtful it would "cure" UC in all cases. I originally had a subtotal colectomy and had about 10 inches of rectum remaining. The UC in that portion of rectum NEVER went into remission, and I continued to have interintestinal manifestations of UC until the rest of the rectum was finally removed. I believe this is the case with many people who have UC and require an ostomy - they are basically at the point of no return.

In addition to what Spooky mentioned, even if this is Crohn's colitis, it is sort of the same. Once the colon and rectum are affected and do not respond to medical management, rest only postpones, but does not cure. I suppose there could be a slim chance, but you've already been on pretty much everything out there, even investigational drugs.

But, if your disease is only simmering and not advanced, a diverting ileostomy could provide you with some rest and time, to sort out options.

Jan

I don't have any personal info to give out. I never keep in contact with strangers I have met at Cleveland Clinic. I am sure there are more message boards out there, maybe more Chron's specific with some people to reach out to.

The difference in how I felt once my colon was out and I was living with a temporary ileostomy was phenomenal. So much so, that I kept my temp. ileostomy for a full year by choice and was reluctant to give it up even then. So, I imagine that keeping your colon inside you but diverting all stool into a bag might well give anyone a wonderful sense of relief. That is not to say that getting used to a bag takes commitment and work....especially at first. Once the secrets to a well working external pouch are learned (all individual), it is simply amazing how feeling healthy is such a wonderful way to live! My J-pouch functions wonderfully and always has. However, I would be totally okay with having an external pouch if I needed to do so.

Thanks guys - as always, very useful insight from you all. Just to summarize, my inflammation is all in the colon, medicines have helped everything calm down except the rectum but I have 2 granulomas so docs not sure if I have Crohns now. A couple of questions that maybe you guys can help me with:

(1)From what you have heard and people you have talked to, do people who do this temporary diveresion ileostomy disconnect still need to take medications while disconnected such as humira, remicade, rectal meds? I know you can't take oral ones so not asking about those.

(2) It seems that most people and doctors seem to agree that when I am disconnected, my UC/Crohns, will temporarily calm down and I will temporarily feel much better while disconnected. My question is - when I am disconnected, won't my immune system still attack my colon? I mean just because stool doesn't go through, the immune system will still attack my colon, won't it? I'm hoping Jan and others can help me understand this as I am sure you guys will have great explanations.

Here's the thing:

IBD, both UC and Crohn's are known for unpredictable periods of relapse and remission. It can vary from person to person, and even within the same person, what the response will be to any particular treatment.

When the doctors make a recommendation, it is not because they know it will work, but based on decades of collective knowledge, they think that particular recommendation has the best odds of working.

So, if medical management was going to work, it would work whether you were diverted or not. Maybe you would still need treatment while diverted. Maybe not. The cycle of inflammation can change if there is less bacterial involvement, and that can mean less need for medical therapy. On the other hand, the colon gets nourishment from the fecal stream and the lack of it promotes diversion colitis. So, it slices both ways.

I know that is a vague, non-answer, but it is what it is.

As to the Crohn's diagnosis, everything I have read indicates that findings of granuloma are absolutely diagnostic of Crohn's. It just is not found often and that is part of the difficulty in diagnosis. Still, there are some surgeons that think it is appropriate to do a j-pouch with Crohn's colitis, as long as there is no perianal or small bowel involvement.

I think diversion at this point would just be for staging and ultimate colectomy and possible j-pouch, not to avoid colectomy altogether, expecting a long term remission. You'll still have output rectally, so you'd have to see if that was a problem for you or not, in determining how long you'd want to have the diversion.

On the other hand, I could be completely wrong. You won't know until you try.

Jan

I read through this whole thread and it sounds like a big fat "what if" to me. If you are willing to go thru a surgery and have an ileo, in my opinion you may as well go all the way and get yourself a j pouch and be done with the disease.

On the other hand you don't know if you have CD so I would do everything you can to rule that out. I went thru the same thing with the doctors saying they thought it could be Crohn's. I had all the tests run that were available and in the end I indeed did have UC.

Yes Jan I thought for sure Crohns too and still likely have something towards Crohns on the IBD spectrum. But my GI, who is regarded as the top IBD GI doctor in the world, said he would still call it UC if there are only 1 or 2 granulomas. So, I don't know.

As for your comment that doctors are giving the response with the best odds of working, I agree. But, they are saying that most patients who disconnect, the disease settles down. I just wonder why the disease settles down when they disconnect because the immune system is still going to attack the colon, right? Why would it stop just bc its disconnected? There is something there I am missing.

Also, mgmt10, you are correct this is all a "what if" - I am just trying to buy time and get some relief because I have limited options. I would have done the jpouch but now with a chance of crohns, I will not be doing the jpouch. I just want to get my life back, buy some time where I can go to work and live life without worry of where a bathroom is, and then hopefully figure something out without losing my colon.

The reason diversion can cause tempoary remission is because you are altering the environment in the colon. Remember, the autoimmune response is not just the immune system randomly attacking the colon, but a cascade of inflammatory reactions in response to a trigger. Often, this is bacteria, or the alteration of it (such as in the use of antibiotics). It does not mean diversion WILL work, but that it MAY work. It is completely appropriate to be diverted to figure out the next step. Who knows? If you can remain diverted long enough and it works well for you, some new treatments may come along!

The real question is what you are willing to accept, since it is all a gamble. Diversion is pretty simple surgery, but not completely without risk. Plus, if your rectum remains in a flare, what have you gained? Of course, once the colon is out, there is no going back, so I understand the dilema.

Jan