J-Pouch for Crohn's Colitis?

Hi everyone,

I'm 24 years old and was dx with Colitis at the age of 19. Last year during a flare up, a flexi-sig revealed the inflammation was patchy, separated by sections of healthy bowel, changing my dx to Crohns Disease. However, because the disease is limited to my colon (no small intestine involvement), they use the term 'Crohn's Colitis' for my condition.

I'm now facing colon removal and a permanent ileosotomy because all the drugs are failing me. I know that j-pouches tend to only be offered to people with a dx of UC due to the possibility that in CD patients the disease will return and attack the pouch.
However, I also know that in some cases - such as when there has been no previous small intestine involvement - some surgeons are willing to attempt a j-pouch (although chances of failure are significantly higher).

Has anyone here been offered/had a j-pouch despite a dx of CD? And if so, what were the circumstances that led to the surgeon being willing to give it a shot?

I know I'm clutching at straws here, but I don't want a permanent ileostomy at such a young age (although I know people have had them younger). I've done A LOT of reading/research, here and elsewhere, and am aware of how ostomies have given people their lives back. I think in my case it's so hard to accept because my flares have always been brief and quickly managed so I haven't known much suffering with the disease -I've mostly been in remission living a totally normal life with normal, one-per-day b/ms, no pain and the freedom to eat/drink whatever I want. Even with this current flare, I'm not experiencing much in the way of typical symptoms (despite my insides being VERY inflamed) - just my body being weird I guess. So it's hard not to see the ileostomy as taking my life away rather than giving it back to me, at least right now.

It just seems to me that since colon removal isn't curative for CD - it could crop up anywhere in the GI tract - then a perm ileo isn't even a guaranteed end to my problems anyway. I know it's foolish, but given the choice I'd probably want to at least try a j-pouch and see if worked before getting a permanent ileostomy. It seems though that the patient isn't really the one who gets to make the choice, as most surgeons would just flat out refuse to risk it.

I was offered the possibility of a J pouch, but the odds weren't good enough (I think they said 30% chance that it wouldn't work), and I'd been sick so long, am older, and just wanted to be done with things and not sign up for even more surgeries. My gi doc recommended the permanent ileo, the surgeon was kind of just playing devil's advocate.

Even though I also looked patchy on all my scopes, my gi doc kept me as "indeterminate" for a long time.... he said that still could be consistent w/UC. It was only when I had boils and the biopsies showed Crohn's granulatomas that I was officially diagnosed w/Crohn's.

I was very, very sick...... would not have had the surgery if I was not. Have you gotten a second opinion? Is your gi doc an IBD specialist? It would be good to be very sure that you have Crohn's not UC, as the J pouch is the preferred option for most people w/UC.

Good luck.

Sue is definitely the expert on J-pouches, so check out jpouch.org to look for people's experiences there.
I think you'd be hard pressed to find a surgeon that will do a j-pouch for Chron's though. My surgeon for example won't do them on Chron's patients. My surgeon is the consult for the national ostomy magazine the phoenix and is really great. But then like Bluegrass said, it was offered to her, so it really depends on the surgeon. You may have to do some hunting though.

I totally understand not wanting a permanent bag at so young an age. I'm 26 and had a colostomy placed as an emergency to save my life just 7 months ago. It was really difficult to adjust to. But the important thing was that I did adjust. Man I cried every day for 2 months! Of course I didn't have any time top prepare myself for an ostomy either since it was done just 5 hours after i was told I'd die without the surgery. But the thing is, I felt so good, better than I had in years with my colostomy. It gave me the freedom to be a young person again and go out, and drink and eat whatever I wanted without worrying about anything other than how my makeup looked. Feeling so great helped me accept my new plumbing and even though I knew it wasn't permanent, (I'm on step 1 of 2 for Jpouch with an ileo now since I do have UC) I know that if my pouch fails in the future that I can handle a permanent ostomy. Yeah it's not ideal, but having my life back is worth it. If you go the jpouch route, when you have you temp ileo you'll see what I mean. I lost my early 20's to my disease and i'm kicking myself for being so afraid of surgery. Either way, you won't regret your new plumbing.
You say your flares aren't bad but yet the drugs are failing you, so the flares will most likely begin to get worse with more and more time. I think you are smart to start considering surgery now while you have time to digest everything. Maybe you'll get lucky and won't need it. But honestly its not as bad as it seems from an outsiders perspective. Hopefully you can get more of a Chron's perspective over on J-pouch.org and Good luck!

I have Crohn's Colitis and was offered a j-pouch. I was 28 when I had my surgery. I didn't want to chance the possibility of it failing or of getting Crohn's in the pouch. I was seriously SO sick of diarrhea all the time and I am very happy with the choice I made. But it can be done, and some people have no problem. It's really an individual decision.

Warren, have you met anyone in person who has had an ileostomy? I met someone thorough the CCFA, and she was so generous and helpful to me. My partner and I visited, and one thing that was just so clear is that she was so so much healthier than me, with so much quality of life.... made me less afraid.

As for the waking in the night thing, for me it's way different with the bag, as it takes five minutes tops. With the diarrhea, I'd be in the bathroom for a half an hour, get back in bed, have to go again three minutes later, repeat, etc. Sounds like you didn't have that experience.... but I did hear in a stress reduction program that if you get back to sleep within 20 minutes, you get the same quality of sleep as if you hadn't woken up.

Some people w/ileos sleep through the night, but a lot of people don't(I posted on this a bit ago)..... but I think that can actually be worse w/a j pouch.


You can take lomotil or immodium to slow things down and sleep through the night (someone on the list suggested to me).... my surgeon prescribed lomotil and said that over time I'd learn to fine tune it, so if I had an airplane flight or a long class/meeting I'd know how many pills to take to get me through w/out having to empty.


It is a lot to wrap your mind around....

I think my case is similar to yours Warren.

I was diagnosed with Crohn's Colitis in 2006 and had been living an amazingly healthy life until just after my 26th b'day in October 2010. I was on no medications (as I became allergic to most) and apart from tiredness and some minor joint stiffness (although I was working 70hr weeks at a desk which could explain a lot of it) I had no crohn's symptoms.

Unfortunately I went from nothing to severe pancolitis in a matter of a day (most likely due to a bacterial infection). I played a good 2hr soccer match on a Tuesday night with no symptoms (and scored a goal!!), and by Wednesday I was on the toilet 20 times a day and never recovered with medications.

My surgeon and GI opted for a subtotal colectomy as the initial diagnosis was crohn's and they are still hoping they can connect my ileum to the remainder of my sigmoid colon next year.

My fear with being reconnected again is the need for medications long-term.

The other big fear is whether or not the crohn's can spread from the colon to the small intestine. Unfortunately there is not much you can do about this and it's the reason they don't do J-pouch normally for crohn's.

It's harder to believe you're sick when you've been leading a normal life - but unfortunately IBD works that way - strikes you when you least suspect it.

For the last four months I've realised a lot of the limitations I thought with a stoma can be overcome or don't exist at all. Only one person has noticed my bag and that was because I kept on playing with it and they had a friend who recently had a colostomy for cancer.

- I don't normally get up during the night to change my bag / I only do it when I have to go No.1
- It hasn't interfered with my sex life
- There are plenty of down days (I think it's also got to do with tapering off steroids) and I can't believe I went from healthy one day to so sick the next but without the stoma I'd be in the ground now. I'd prefer to be a little down than in the ground!


Is there any possibility of resections or some form of non-total colectomy?

What's the time frame on looking at surgery?

Some doctors at the Cleveland Clinic will consider a j-pouch for Crohn's patients that haven't had any small bowel involvement. There is strict criteria the patient has to meet.

I have met a few who have done it and they've been happy:) They all did mention one thing...they know that, at this point, it's not proven to be a long term solution but they have all taken the chance. 5 years has been about what they hope to get from it.

I've not met anyone with an ileostomy but I'm in online contact with a couple of people who have them.

I am currently on Humira - weekly shots. Been on it for just over 3 months, it doesn't seem to be doing aything. I used Remicade last year and it worked great (got me out of hospital when I was in a really bad flare and bleeding a lot), but I had 2 more infusions after that and didn't really notice any effect. I think I probably became immune to it after just one go. My GI is willing to let me try it again if/when I decline (I'm currenly 'stable' but I'm also slowly tapering Pred so I could get worse at any time if that's what's holding me over), but I have no hope that it would do anything.

What's making the situaion worse is that several weeks ago I noticed reduced sensation in my penis and this sort of constant feeling of needing to urinate (when I go I never feel finished). I don't have an infection so I'm having an MRI scan of my pelvis. Personally I suspect the inflammation in my rectum is putting pressure on/causing damage to nerves - I think this because I know that removal of the rectum can cause erectyle dysfunction and urinary problems, so if my rectum has been badly damaged by inflammation it could have the same effect. Not only is it driving me insane, I also fear it's perminant. I don't think the MRI is going to reveal much other than 'yeah, you're really inflamed' (which we already know).

Other than the groin stuff and general fatigue/weakeness (made worse by the fact that I'm not sleeping properly - haven't been for 2 months because of all the worry), I don't really have any typical symptoms now. The blood and D cleared up - I'm now going pretty much once a day, doing an unformed but technically solid b/m. I don't really have any pain/discomfort (just the odd twinge every now and again), can still eat whatever I want etc. But I know the disease is still very much active because I can feel the inflam in my rectum and I have so little energy.

Not sure what kind of time frame I'm looking at for surgery, I think it might depend on my health really. I don't think I have any other options than a total colectomy because my rectum is very bad (so what would they attach to?) and my inflammation has a tendency to jump around with each flare so bowel that is healthy now with probably just become diseased soon after.

By the way I'm from the UK.

Hi! My medical records say crohns colitis all over the place. Im not convinced. I am having surgery in June and she is willing to do a pouch. She believes if I have crohns that acts like colitis (staying only in the large intestine) that I have a good chance with a pouch! There are people willing to do it! I am willing to try it knowing the possible complications.. Good Luck!

In your considerations be aware that a failed J pouch is a miserable thing to have. Additionally the removal of a J pouch is a tricky, complicated, big surgery with many possible complications including urinary incontinence ( pretty rare) and sexual disfunction (not that rare). 20 to 30 % failure with Crohns is what I have heard but many keep the pouch but have to continue medications to control pouchitis or their Crohns. That may be the case with an ileo also but generally better odds. Good luck

I would give a cautious endorsement for "the bag" as well. My situation was similar to Smackie - two weeks before my 30th birthday, I started getting sick, and four weeks after that my colon perforated. I had no choice in the matter, which was probably fortunate, as like most I would have tried the drug route first. Hindsight is 20/20, but I have come to the conclusion it's best to get the surgery while you're young, rather than destroy your body with drugs for 10-20 years first. My DX is in-determinant, but leaning heavily in the direction of Crohn's. My surgeon at Northwestern in Chicago was willing to give the J-Pouch a shot, but my rectum is in fairly good shape.

If you decide on surgery, Probiotic's solution is probably best....give the "Step 1" Ileo a good long spin before moving onto the next step. Even though it's an option for me, I think I'm just going to stick with the ileo. I understand the cosmetic reasons for a j-pouch, but I just don't think the risk is worth the "reward" of getting to go to the bathroom 6 times a day....

Getting up in the middle of the night is a little annoying, but in the end, it's not that bad. You can also plan around it to a certain degree - ie: if I have a really early dinner....say 5-6 PM, and go to bed at my normal 10-11 PM, I will usually pass it by then and can sleep through the night. Even if you do have to get up, it's a fairly quick operation -- don't turn on any lights, keep it brief, and you'll be back in bed asleep like nothing happened.

Post Edited (TheDuque) : 12/14/2013 8:10:09 AM (GMT-7)