Success with Ileostomy. Jpouch?

Hello,

you are going to get many varied opinions on this.

For me, I had my UC under control but dysplasia forced me into a colectomy.

I hated every second of the 13 weeks of my loop ileostoemy.

a number of folks here with end ileostoemys seem to be doing well with them.

now on to my jpouch.  It’s a lot a maintenance. As another poster once stated:

the folks with problem free jpouches seem to be everywhere but here.

All in all , I would never willingly give it up.

I wont go into into all of the downside because you really want to hear success stories. I hope those folks give you the feedback you all looking for.

what I will say is that I don’t have the mental toughness needed to have a permanent osteomy. The jpouch gave me the hope and solution I needed to say yes to the colectomy.

Thank you for your feedback. I suppose this forum is mostly for people who are seeking advice/help so I guess it’s difficult to ask for success stories since as you stated, “why would they be here if they are doing well” which is why it’s difficult to get answers that favour my ideal answer. Haha.

figured I’d try anyways.

@Danno87 Like you I chose the colectomy because the miseries of IBD were no longer acceptable to me. Unlike you I completely skipped the external appliance and had the J-pouch surgery in a single stage. J-pouches and external ileostomies have similar patient satisfaction rates. Some of that is self-selection, of course. A well-functioning J-pouch is pretty effortless - certainly less of a hassle than an external appliance. Most J-pouches function well. A poorly-functioning J-pouch, of course, is a problem, which can range from minor (e.g. antibiotics to control pouchitis) to the usual range of terrible possibilities after any surgery. It doesn’t sound like the ileostomy is holding you back much, but if you really want a J-pouch then you probably ought to do it, knowing that there are no guarantees.

My J-pouch isn’t perfectly behaved. It requires daily attention (it didn’t for the first 6 years), but it’s as simple as taking a couple of pills. Like you I found huge opportunities from getting rid of a diseased colon. I took up scuba diving (I dive every week) and studied Ju-Jitsu with my daughter (both of us became instructors).

Either choice is most likely to be fine for you. Good luck!

I just wanted to chime in because I have a great j pouch experience. Before I got my pouch, it helped me to read success stories. I have had it for over 6 years, and I rarely think about it.

I had ulcerative colitis and had a total colectomy in 2008. I had a 3 step surgery to get a j pouch. When I had the temporary ileostomy it was a torture because the bag never stuck to my skin, even when I tried different bags and paste. Now after 15 years I developed a rectovaginal fistula that is on and off. I'm so scared to have the surgery to fix the fistula because that means I have to have a temporary ileostomy for 6 months and that would be a torture. I'm devastated can someone please share if they had experienced a fistula issue.

I don't have IBD but when I first got my pouch from my ileostomy I was disheartened and wanted my ostomy back.  It was predictable and I knew what I was dealing with.  After living with my j pouch for a few months I began to understand her idiosyncrasies and 9 years later am so very very happy with her.  I can eat almost anything and am now international cabin crew living life large.  A total success.  Other than the occasional leak with my stoma I had a great life with my ostomy as well.

@Scott F posted:

@Danno87 Like you I chose the colectomy because the miseries of IBD were no longer acceptable to me. Unlike you I completely skipped the external appliance and had the J-pouch surgery in a single stage. J-pouches and external ileostomies have similar patient satisfaction rates. Some of that is self-selection, of course. A well-functioning J-pouch is pretty effortless - certainly less of a hassle than an external appliance. Most J-pouches function well. A poorly-functioning J-pouch, of course, is a problem, which can range from minor (e.g. antibiotics to control pouchitis) to the usual range of terrible possibilities after any surgery. It doesn’t sound like the ileostomy is holding you back much, but if you really want a J-pouch then you probably ought to do it, knowing that there are no guarantees.

My J-pouch isn’t perfectly behaved. It requires daily attention (it didn’t for the first 6 years), but it’s as simple as taking a couple of pills. Like you I found huge opportunities from getting rid of a diseased colon. I took up scuba diving (I dive every week) and studied Ju-Jitsu with my daughter (both of us became instructors).

Either choice is most likely to be fine for you. Good luck!

Thanks for the reply. You hear so many horror stories online but I feel like that’s such a small percentage compared to the successful surgeries that are living a normal life.

@Kangaroo posted:

I just wanted to chime in because I have a great j pouch experience. Before I got my pouch, it helped me to read success stories. I have had it for over 6 years, and I rarely think about it.

That’s incredible! I wish I could just fast forward to a perfectly working jpouch. Haha. I still need 2 surgeries and a lot of recovering to get to that point. Fingers crossed 🤞

@Jaypea posted:

I don't have IBD but when I first got my pouch from my ileostomy I was disheartened and wanted my ostomy back.  It was predictable and I knew what I was dealing with.  After living with my j pouch for a few months I began to understand her idiosyncrasies and 9 years later am so very very happy with her.  I can eat almost anything and am now international cabin crew living life large.  A total success.  Other than the occasional leak with my stoma I had a great life with my ostomy as well.

That’s amazing! Yeah, I hear there can be a pretty long “learning” phase with the pouch. i hear it can take up to a year for things to start working normally.

My J pouch surgery included 4 months with a temporary ileostomy that I hated with a passion. My 30 years with a J pouch was not easy, with leakage, higher than normal stooling frequency and anal irritation.  I was able to adapt to those complications and had a full-time job, went alpine skiing, participated in equestrian competitions and traveled internationally.  When medical conditions made pouch removal necessary, I opted to get a BCIR (similar to a K pouch) since I strongly did want to have an external bag with its associated issues.  I have had my BCIR for 10 years and am enjoying a very good quality of life.

Hey Danno

Unlike you, I had a terrible experience with the ileostomy. I was hospitalized for dehydration twice, had skin issues, constant leaking, etc. You're lucky!

@Kangaroo posted:

Hey Danno

Unlike you, I had a terrible experience with the ileostomy. I was hospitalized for dehydration twice, had skin issues, constant leaking, etc. You're lucky!

Well it’s even more a success story for you given the hard times you went through with the Ileostomy. I think I’d be pissed if my jpouch sucked after my alright experience with the Ileostomy.

I’ve also been told to “wait” for the bad things to happen. Haha. Since I’m so new (3 months) my skin hasn’t really had a chance to reject the adhesive and cause problems. (Fingers crossed)

as for dehydration and digestion, I don’t know why but I seem to absorb water and digest food very well. The only time I ever have liquid output is if I overdo it with the booze. Although, drinking alcohol has been my “safe” way to eat foods that I’m scared off. Helps with the flow.

I think I’ll give the jpouch a shot. The worst part is I have to do the loop Ileostomy first 😭 haha

I think trying out the j pouch is a good idea. As I stated, the loop ileostomy was brutal, but I would remind myself that it was just temporary.

Good luck! I look forward to reading any updates you post.

I ended up reading your story because I am wondering if it is possible to lose a jpouch (31 years for UC), sew up my anus and have end ileostomy safely in one surgery. Dr. Remsi recommends loop ileostomy with later decision about redoing pouch. So if anyone can help me with that issue, I'd be grateful.

My pouch functioned pretty well for years with recurrent strictures at the anal anastomosis (which may have been related to mucosectomy and hand sewn (vs stapling) anastomosis - I would ask about this) and pouchitis that was always treatable with ciprofloxacin. Over the years I've developed a floppy pouch which does not empty efficiently (up 10 times a night) etc. Right back to not being able to walk my dog, as you mentioned.

You sound like you are young so you can probably get some good years out of a pouch. Get the most experienced surgeon to do it!

My understanding is that it is a brutal surgery. Notwithstanding that, the temp loop ileostomy, at least it was in my case, was awful.

there are members here who have had this procedure and seem to be doing well with the end ileoestomy.

I think age plays a factor here. I am in my 60ies and not getting any younger, and the prospect of any surgery in that area would terrify me.

I think Dr. Remzi is the goto guy, and I like his conservative approach.

@New577 posted:

My understanding is that it is a brutal surgery. Notwithstanding that, the temp loop ileostomy, at least it was in my case, was awful.

there are members here who have had this procedure and seem to be doing well with the end ileoestomy.

I think age plays a factor here. I am in my 60ies and not getting any younger, and the prospect of any surgery in that area would terrify me.

I think Dr. Remzi is the goto guy, and I like his conservative approach.

The first surgery was a breeze for me. Didn’t hurt much and cause me very little problems. What’s another 2? Haha

I think I would always wonder if I decided not to do it. Apparently the success rate of a jpouch with a normal life is quite high.  Even if there’s a small chance I could be one of those success stories makes me curious.

worst case I could always come back to a stoma.

I don't think anyone wrote about this, so here is one more consideration, especially given how well you're doing.

You commented, "my doctor said I am cured  they removed all the disease and told me there’s literally nothing wrong with me other than no large intestines."   Probably close enough to true now, but a different story if you start down the road of the J-pouch, and something to consider as you are weighing pros and cons.  

I recently heard one of the most experienced surgeons at the Cleveland Clinic say they don't tell their j-pouch patients removal of the colon is a UC cure anymore.  Even if you have a great surgery, excellently constructed pouch, and a fast recovery, the majority of J-Pouchers will experience inflammation in the pouch/ pouchitis - even those of us with confirmed UC diagnosis  - not Crohn's- who never had any involvement of the small intestine.  

It's not clear why the pouch inflammation occurs. A theory is that we are pre-disposed to an immune over-response in the gut.   A j-pouch is made of small bowel, and although it is an organ that waste passes through normally, as a j-pouch,  it is expected to hold waste.  The mucosa undergoes changes to meet that new purpose. But now the bacteria is congregating in the small bowel and spending time there, not just passing through.  The new anatomy creates an environment for "bacterial dysbiosis" (out of balance bacteria in the gut) and for many, leads back to inflammation. It can be infrequent, recurring or chronic & requiring maintenance antibiotics.  Some people end up with what is referred to as "Crohn's like disease if the pouch" with more and worse complications. Others are diagnosed with Crohn's.   And some end up back on biologics.  

Not meant to scare you off - lots of happy pouch people out there.  But how well you recover from surgery is really just a small part of the equation.      

@AMB posted:

I don't think anyone wrote about this, so here is one more consideration, especially given how well you're doing.

You commented, "my doctor said I am cured  they removed all the disease and told me there’s literally nothing wrong with me other than no large intestines."   Probably close enough to true now, but a different story if you start down the road of the J-pouch, and something to consider as you are weighing pros and cons.  

I recently heard one of the most experienced surgeons at the Cleveland Clinic say they don't tell their j-pouch patients removal of the colon is a UC cure anymore.  Even if you have a great surgery, excellently constructed pouch, and a fast recovery, the majority of J-Pouchers will experience inflammation in the pouch/ pouchitis - even those of us with confirmed UC diagnosis  - not Crohn's- who never had any involvement of the small intestine.  

It's not clear why the pouch inflammation occurs. A theory is that we are pre-disposed to an immune over-response in the gut.   A j-pouch is made of small bowel, and although it is an organ that waste passes through normally, as a j-pouch,  it is expected to hold waste.  The mucosa undergoes changes to meet that new purpose. But now the bacteria is congregating in the small bowel and spending time there, not just passing through.  The new anatomy creates an environment for "bacterial dysbiosis" (out of balance bacteria in the gut) and for many, leads back to inflammation. It can be infrequent, recurring or chronic & requiring maintenance antibiotics.  Some people end up with what is referred to as "Crohn's like disease if the pouch" with more and worse complications. Others are diagnosed with Crohn's.   And some end up back on biologics.  

Not meant to scare you off - lots of happy pouch people out there.  But how well you recover from surgery is really just a small part of the equation.      

Yeah I’ve heard about all the complications that can come from the jpouch surgery. I would be pretty disappointed if I ended up in a bad situation again after living such a successful and stress free life with an Ileostomy, but I still feel like its worth a try.

I’m hoping nothing will ever be as bad as dealing with UC because my life was a mess, so any hope of a “normal life” without an external appliance keeps me optimistic.

I’ve spoke with a few surgical buddies who have had the jpouch reconstruction by my surgeon, and they all say they would do it again if they had the choice.

Worst case I end up with an Ileostomy again.

It is sooooo much better than living with UC!

A lot of people don't get a good informed consent from their gastroenterologist when they are referred for surgery. Informed patients have the best outcomes.  Sounds like you are doing your homework and are both physically and mentally strong heading into it.  I bet you'll do well.

I did not have a great ileostomy experience and was so glad when I finally got to have the jpouch surgery. That was in 2010 and the pouch is still going great, it took a year or so to figure it out and really feel good everyday, but even the worst pouch days were better than my best UC days. I lived with UC for 20 years and wish I’d had the surgery earlier.

My output tends to mostly be at night, so I don’t get great sleep, but I never feel exhausted. I hold an executive level role in my firm, travel for work and vacations (camping, hiking, snow skiing, etc.) and have a teenager. Stress always played a huge role in my UC, but does not seem to impact my pouch.

In the 13 yrs I’ve had my pouch I have had pouch it is twice, easily fixed with antibiotics and one blockage that landed me in the hospital for a few days.

I take no meds for my gut. My only real problem is that I can eat without getting sick and am enjoying all of the foods I couldn’t eat for so long…and have gained quite a bit of weight….working on it though!

I was thinking the other day I needed to hop onto the forum and share my good story, this group has been helpful to me over the years.

@Clynn173 posted:

I did not have a great ileostomy experience and was so glad when I finally got to have the jpouch surgery. That was in 2010 and the pouch is still going great, it took a year or so to figure it out and really feel good everyday, but even the worst pouch days were better than my best UC days. I lived with UC for 20 years and wish I’d had the surgery earlier.

My output tends to mostly be at night, so I don’t get great sleep, but I never feel exhausted. I hold an executive level role in my firm, travel for work and vacations (camping, hiking, snow skiing, etc.) and have a teenager. Stress always played a huge role in my UC, but does not seem to impact my pouch.

In the 13 yrs I’ve had my pouch I have had pouch it is twice, easily fixed with antibiotics and one blockage that landed me in the hospital for a few days.

I take no meds for my gut. My only real problem is that I can eat without getting sick and am enjoying all of the foods I couldn’t eat for so long…and have gained quite a bit of weight….working on it though!

I was thinking the other day I needed to hop onto the forum and share my good story, this group has been helpful to me over the years.

Thank you for sharing your experience. It’s hard to find positive feedback from those experiencing  a good life.

your experience gives me hope.

My J Pouch and I have been on many adventures, however I wont lie and tell you it is not without it's issues :/. I don't think any J Poucher life is without afew bumps in the road. But you just try and life your best life .

I had a 1-step surgery in 1999.  No ostomy. Took me 2 years to get to a "new normal". It won't take you that long because you've already had your colon removed.  It takes a while to learn what your issues will be. I used to have leaks at night, but taking 2 generic Gas-x pills every night stopped that problem.  Occasionally take generic immodium if I am going to be out of the house for a long time. Many on this forum take immodium regularly.  For me, having a j-pouch is relatively easy (except for the year I had obstructions because of a twisted intestine).  To avoid butt burn, do not wipe, but try to pat yourself dry with toilet paper (using Charmin Gentle bath tissue). Then use Charmin Freshmate wipes to clean. You can wipe with those because they are wet with very little to no friction.  I hope this is not too detailed.  I guess I wanted you to know that once you develop your own tailor-made routine, you should do well. Best  wishes to you!