J-Pouch for Crohn's Colitis?

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Warren86
Regular Member


Date Joined Mar 2011
Total Posts : 37
   Posted 4/5/2011 11:18 AM (GMT -6)   
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.

suebear
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Date Joined Feb 2006
Total Posts : 5402
   Posted 4/5/2011 11:20 AM (GMT -6)   
Yes, there are those with Crohn's/Colitis that have jpouches. You can meet them at www.j-pouch.org and follow their experience.

Sue

blueglass
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Date Joined Dec 2010
Total Posts : 3073
   Posted 4/5/2011 1:37 PM (GMT -6)   
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.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Warren86
Regular Member


Date Joined Mar 2011
Total Posts : 37
   Posted 4/5/2011 2:14 PM (GMT -6)   
Thanks Sue and blueglass,

Not had a second opinion, not even met with the surgeon yet (consult in a month), it was my GI who prepared me for the fact that given the nature of my disease, things like j-pouches and resections would not be viable options. I don't think there's any doubt that it's Crohn's. Most cases of Crohn's patients recieving a j-pouch seem to involve an initial mis-diagnosis of UC or the doctors not being sure. I don't think with a definite CD dx I'll find a willing surgeon, even though all my disease is limited to my colon. It's just not the done thing, and I understand why. I just don't like my situation :(

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 4/5/2011 2:18 PM (GMT -6)   
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!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11

blueglass
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Date Joined Dec 2010
Total Posts : 3073
   Posted 4/5/2011 3:40 PM (GMT -6)   
I just wanted to clarify -- my surgeon didn't offer to do the j pouch surgery.... she offered to leave some rectum etc so someone else could do the surgery.... they don't do them at mass general, where I go. The nurse practitioner in my gi docs office said you could get them done in another country, and then my surgeon said it's not true that you have to leave the country, someone at the Cleveland clinic does some of them.

Not to be a total snob or anything, but living in Boston, at a top hospital, where people come from all over the world to get treatment, well, I kind of figured that if they didn't do them, it was a problem (and I know from this list that Cleveland clinic is tops, and I'm from the midwest myself, so not a regional chauvinism or anything .... just feels wrong to go somewhere else from a place that's so medically great that people come here in droves for special care).

My surgeon said to be a really good candidate for a j pouch w/Crohn's, you needed to have a pristine ileum (which I had and presumably still have) and an uninflamed rectum (which I didn't have). It really felt like she was just trying to make sure that I wasn't going to turn on her w/regrets afterward.

The good news on having Crohn's confined to the colon is that there's about an 80% chance that the ileostomy is essentially a cure -- no further disease.... and that many problems are minor and confined to the stoma area. These stats were very enticing to me....

Warren, get it that you don't like your situation, would be worried if you did.... on the bright side, I think being young is a plus for recovery from surgery, and if this disease has taught me anything, it's that I can get used to all sorts of things I'd never thought I could deal with.....

I think being sure you've seen an IBD specialist and that you have a great surgeon that you're comfortable with are both critical.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

80sChick
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Date Joined Oct 2009
Total Posts : 1053
   Posted 4/5/2011 5:11 PM (GMT -6)   
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.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Warren86
Regular Member


Date Joined Mar 2011
Total Posts : 37
   Posted 4/5/2011 5:59 PM (GMT -6)   
Thanks for the replies everyone :)

blueglass I'm the same, ileum is fine I believe, but my rectum is very inflamed. I thought it was possible to connect a j-pouch directly to the sphincter muscles, meaning you didn't need to leave any rectum? But it's likely that's wrong.

That's very interesting Stephanie, what circumstances led to you being offered the j-pouch? It seems very rare.

I know that medically a perminant ileostomy is the best (and probably only) option. I have spent weeks researching it, trying to come to terms with it, trying to imagine my life/future with it, but am no closer to acceptence unfortunately. Having rarely experienced a lack of sleep due to Crohn's, just the simple fact that I'd probably have to get up at least once a night to empty makes me feel like I'm in for a lifetime of misery (I like my 10 hour lie-ins at the weekend!), not to mention my many other concerns. But I won't get into all that now.

blueglass
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Date Joined Dec 2010
Total Posts : 3073
   Posted 4/5/2011 6:44 PM (GMT -6)   
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....
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 4/5/2011 9:28 PM (GMT -6)   
i was 29 when i had surgery.

And as for getting up, like she said, it's not the same, you just get up, empty, flush wash hands and head back to sleep, like 3 or 4 minutes.

What are your other concerns? Maybe if some of those are alleviated it will make it easier on you.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

smackie
Regular Member


Date Joined Feb 2011
Total Posts : 55
   Posted 4/5/2011 10:47 PM (GMT -6)   
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?
Jul 06 - Dx with Coeliac
Sep 06 - Dx with Crohn's
Oct 10 - Pancolitis subsequent to a campylobacteriosis infection
Dec 10 - Dx Crohn's (GI) / Dx UC (Surgeon) / Dx Indeterminate colitis (Pathologist)
Dec 10 - Subtotal Colectomy & End Ileostomy [complicated by high dose IV steroids]
2011 - The year of recovery
2012 - Ileosigmoid anastomosis? J-pouch? Total proctocolectomy?

chico41
Regular Member


Date Joined Jan 2006
Total Posts : 135
   Posted 4/6/2011 3:11 AM (GMT -6)   

I have had a J-pouch now for 7yrs.  The question i have for you Warren, is what drugs have you tried.  I would talk to a doctor about Humira and Remicade first.  My opinion.  My experience with the j-pouch is, watching what you eat, being close to restrooms, accidents.  i had a ille. for 3 months.  And loved it.  No finding restrooms, eating almost whatever i wanted.  It was great.

I am 51 yrs old and recently divorced.  So i know what you are saying about being single with the bag.  I have found out that ppl will accept you for you.

I have really been thinking about getting an ille.  myself.  I too am trying to weigh out the pros and cons before i do anything drastic and life changing.  The reason i had to get rid of my large intestine was due to ucers.  They had a real hard time labeling it with Chrohns.  They first said i had U.C.  in 02, then in 05 after 3 yrs of Hell, they labeled it with Chrohn's.   If i would have know then what i know now, I would have tried every drug out there before any surgerys. Heck i would have even tried Homopathic medicine.    Good luck with whatever you do.  BW.


Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3064
   Posted 4/6/2011 7:43 AM (GMT -6)   
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.
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

blueglass
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Date Joined Dec 2010
Total Posts : 3073
   Posted 4/6/2011 7:53 AM (GMT -6)   
I relate to something smackie said.... part of how I reconciled w/the surgery was that in a lot of times and places I'd be dead already from my various symptoms. I tried, my doctors tried, and there just wasn't much left to do. I am grateful the surgery exists, the supplies exist, and it's actually possible to live a good life w/out such a major body part.

But I did have to get to the point where I felt like I was done trying things, that the medical options (tysabri, clinical trial) were too scary. I have been on remicade, humira, cimzia, and a bunch of other things. You said all the drugs are failing you, so I presume you've tried some of these too (but if you haven't, as Chico says, they might be worth a shot, as they work for a lot of people)..... at some point the surgery gets less scary than the drugs, at least that happened to me (and happened to others on this list a lot earlier than w/me).

I was so done w/having to urgently run to the bathroom too..... for me the ileo sounded better than the j pouch....
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

Warren86
Regular Member


Date Joined Mar 2011
Total Posts : 37
   Posted 4/7/2011 10:59 AM (GMT -6)   
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.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 4/7/2011 12:55 PM (GMT -6)   
It is possible to have a j-pouch with no rectum - that's what was done for me. I thought that just the rectal lining was removed leaving the muscles intact, but my surgeon removes the whole thing and attaches the pouch to the anal muscles. It's harder to preserve the sphincter muscles so you have to really find a surgeon who is used to removing the whole rectum while preserving the sphincter. My best friend's mom had rectal cancer and had to have the whole thing removed as well and had a pull through done after 6 months of an end ileo to heal. Sometimes she has some continence issues and I might as well. That's why some surgeons tend to leave a small amount of rectum. Each surgeon is different.

There is a man from the UK on the uoaa.org discussion board, Terry. And he was talking in one post about sphincter preservation and how the surgery works because he had his preserved when his rectal stump was removed and he has an ileostomy. He is really nice and always offers people to email him with questions because he is "an expert patient" as he puts it :) I suggest taking a look at that page and maybe talking to Terry about the sphincter preservation surgery, as well as possible surgeons since you're both in the UK. Keep in mind though that he definitely advocated ileostomy over j-pouch for Chron's patients. Also here is a post from a user that had a J-pouch and is now considering removing it due to Chron's complications https://www.ostomy.org/forum/viewtopic.php?f=2&t=19337&start=15

More insight equals a better understanding of whatever choice you make! :)

If your rectum is super inflamed (as mine was big time) its best not to save any of it, j-pouch or ileostomy. As long as your sphincter muscles are left intact you shouldn't have issues with erectile dysfunction or trouble peeing and the like that can happen when the muscles in the pelvic floor get messed with.

Good luck in your decision making!
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11

tryingtokeepmyheadup
Regular Member


Date Joined Nov 2010
Total Posts : 215
   Posted 4/7/2011 1:28 PM (GMT -6)   
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!
DX 2/10 UP. DX 10/10 UC. Hospital 10/10, 01/11 dehydrated/anemic. Arthritis, sjogrens came w/colitis. On Asacol 3600 mg, Vicodin, Xanax, Imodium, tramadol. I've tried Canasa, Bentyl, Prednisone, Flagyl, Cipro, Morphine/codeine, Imuran, Prozac, Remicade ~ nothing worked. 1st surgery scheduled 6/8/11!

Neilster
New Member


Date Joined Feb 2013
Total Posts : 6
   Posted 12/12/2013 11:52 PM (GMT -6)   
Hi Warren 86: I was diagnosed with UC when I was 23 yo and lived with the disease for over 30 years. I would go for years when I was younger before I had a flare up. then I started being treated with Steroids and the would subdue the flare ups most of the time but my condition worsened and my immune system be came weakened. Finally around the age of 52 a Stricture was discovered and the Doctors started to warn me of cancer possibilities. Later on Fistula was discovered but no one said a word about CD They assured me that I had UC and my condition seemed to worsen and I was losing a lot of weight along with having many bowel movement despite the use of the Steroids. I opted for Surgery in march of 2013 with the intent of getting the J-Pouch but after the Surgery the doctors claimed that I was misdiagnosed and actually had CD. I found and still do find it hard to believe that I have CD and not UC when that was the only diagnoses I had ever had in over thirty years of treatment with multiple Doctors and one GI Doc that treated me for over ten year. I had multiple scoping done and biopsies over the years and never ever once was the mention of CD. Now I am see a new Doc that is offering to do an ilieum connection directly to my Rectum and he refuses to do the J-Pouch despite the small bowel follow through coming out excellent and with the Flex-Sig everything looks great including having plenty of Rectum. This Dr. claims that because of fistula it is definitely CD and even though these test are good he thinks it goes in and out remission. So I am seeking other opinions. As far your situations goes in my opinion you are young enough to research natural means and see if you can reverse the entire condition. I would look into a nature Doctor before I went on what they want to do. I went for over thirty years and if I knew that they would tell me afterward that I had CD I would have looked further into natural possibilities which I was beginning to do. Get a second and even a third opinion before you get the Surgery because once your Colon is gone it can't be replaced. Wishing you all the best.

rdm
Regular Member


Date Joined Apr 2006
Total Posts : 201
   Posted 12/13/2013 2:25 PM (GMT -6)   
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

Probiotic
Veteran Member


Date Joined Mar 2007
Total Posts : 2742
   Posted 12/13/2013 5:39 PM (GMT -6)   
Rdm speaks wisely. I had the attitude at first to "try" a jpouch and casually go to perm ileo if it doesnt work out. It is an absurd plan that makes no medical sense, for the reasons explained by rdm. In my case some indeterminate signs in my UC-leaning UC led to me being advised to do a 3 step jpouch- step 1 results in an end ileo which, if you stop there, becomes a perm ileo if you wish. So if you want to "try out" things (and if you have crohn's colitis, they'd prob consider an IRA but not an IPAA for reversal) your best bet would be to "try out" an end ileo and if you hate it then get an IRA or jpouch (IPAA).For me, 3 step was a blessing in disguise, because the quality of life is actually the same now as it was pre-UC. I love not having to poop anymore- emotying the pouch can be delayed for 4 hours or more past when one would "have" to empty a jpouch, and for my lifestyle that rocks. I am middle aged and my wife thinks my exterior pouch rocks, but if I had to date againor something I dont think this would even be on my radar as a concern. It is completely invisible unless I am intimate with my wife or lounging about at home semi-commando. Just my two cents.

Post Edited (Probiotic) : 12/14/2013 6:41:14 PM (GMT-7)


TheDuque
Regular Member


Date Joined Jul 2013
Total Posts : 50
   Posted 12/14/2013 9:54 AM (GMT -6)   
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)


Pluot
Veteran Member


Date Joined May 2012
Total Posts : 2240
   Posted 12/14/2013 2:41 PM (GMT -6)   
Guys, you are giving advice to someone who posted two years ago :)

Although it's good advice! And just to clarify, j-pouch is typically abbreviated IPAA -- ileal pouch anal anastomosis. Amazingly/scarily/whatever, IAA (ileum-anal anastomosis) was performed in the early 80s when it was theorized that the ileum would simply stretch out and become a pouch by itself, and the results were (as you can imagine) not fun.
Liz, 26
itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: none!

step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown 7/31/13
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