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Have you considered giving up your J-pouch and returning to using a colestomy bag?

Yes, and I went ahead and got the reversal.
Yes, I've thought about it but not sure if I will do it.
No, I'm still focused on making my J-pouch work.
Posted by Hockadoo ·

Comments (65)

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I am surprised at the pain and suffering people will seemingly be prepared to put up with to avoid an ileostomy. I have had a pouch for 22 yrs now and for most of that I have been able to pretty do what everyone else does. Although camping is a bit tricky! However the last 3 years have been very tiresome with chronic antibiotic dependant  pouchitis, abscess requiring surgery, fistula, stricture causing blockage requiring several dilations and then feeling crap from the cipro etc. What might be the final straw is ruptured tendon that was weakened by cipro and surgery for that - currently 2 weeks in - and managing going to bathroom on crutches especially in the night. I am at a point that I think having a bag would allow me to just get on with my life and not worry about drugs, side effects etc. anyway I need to get over Achilles surgery first ! From what I remember as a young man the ileostomy was not a big deal Although I dId know it was going to be reversed Of course.the irony is I feel fine at the moment and pouch behaving but I'm completely crippled.  Anyone out there in a similar position ? Adam 

I don't know about you but I went through 4 surgeries to get this j pouch. Had a blockage after last one and they couldn't tell my family if I was going to make it. That was in 2001. Have had 3 surgeons tell me to get the outside pouch (one of which was the surgeon who made the pouch). The first two years he kept diagnosing me with pouchitis and said since I was having chronic pouchitis I should have outside pouch. I went through hell to get this and no way was I giving up. It made no sense to me! Explain to me why this is happening. Never received any diet information from anyone. None of the first 3 surgeons wanted to answer questions.  The 4th surgeon is my hero and was recommended by a long time nurse friend of mine!! He educated me on this pouch! He made drawings showing exactly how it was made. He also told me that its was not uncommon to have up to 20 bowel movements a day during the first couple of years because the pouch is stretching so I didn't have pouchits.

In 2012 the 3rd gi dr found a stricture.3rd gi dr and 3rd surgeon said  it couldn't be fixed only answer was outside pouch.  My 1st visit with my hero (4th surgeon) had researched and printed a procedure that could fix sticture. He said yes and that they had a gi dr who specialized in those kind of procedures. Was always so afraid of losing my jpouch. Finally I knew I was with the right doctors!  Now I go to a dietician couple times a year but most of all this group was the only help I had for 3 years!! I am so greatful that I didn't make any decisions till I found a surgeon who answered all my questions. My big brother told me after first opinion of outside pouch as I was crying, educate yourself before you make any decisions. That's when I found the jpouch group. He passed away of cancer Jan 28th of this year. God how I miss him.  But thank god for him and jpouch group. I hope this helps someone. It was hard to keep this short. Its been a long road.

I'm 61 have a dysfunctional jpouch for the last 9 years since TD. I had this same conversation with my son and wife, if I couldn't take care of myself  one day I could never expect anyone else to be able to do what I do every day. At some point I'll most likely be back to a permanent ileo and it may be sooner than later.

I lived with colitis for 10 years, then had a j-pouch for 7 years, and went back to a "temporary" ileostomy (which is permanent as far as my doc and I are concerned).

Constant pain plus 4 hours a day in the bathroom got to be too much. I couldn't work, my social life was limited and I spent every moment worrying whether I could make it through whatever I was doing. I couldn't imagine having/caring for kids.

Unfortunately, I had no better option than going back to the ostomy pouch.

And I really hate it. I'm always hoping it doesn't fall off, tear, or leak...only one brand works for me and its performance has been unimpressive. Everyone can see there's something under my shirt, especially when the damn thing fills up and sends me off to the can. Carrying my kids and lifting things is always worrisome, as is bending when the thing is full.

But...going back to a life of pain is not an option. So here I am. Sure wish Remicade had been available for ulcerative colitis when I was considering the initial surgery.

Originally Posted by Tootsie:
I'm sorry, but I totally disagree with your comment.  You make it sound as though having the Ostomy is such a bad thing and only if you are "demented" (not knowing what is going on) would you settle for one.  Every one of my Ostomy nurses actually had an Ostomy and many in the Hospital did as well.  The acid on my buttocks with all of the incontinence was much worse to deal with then having to figure out which appliance is the best for me.  Originally Posted by alykopy:

I am 11 years with my pouch for FAP and doing great!  I work in a hospital setting with many elderly who are incontinent.  I would consider returning to an ostomy in the future if I am ever demented and need to be physically cared for.  I do not believe it will be possible to keep someone who has 5 + bowel movements a day clean in a nursing home.  On top of being dirty, the stomach acid coming straight through would cause a serious decub wound which would never heal.  The pitfalls of my job include being able to imagine the worst case scenario for growing older!! 

 This Scenario that Tootsie describes is exactly the long-term concern I have.  I have been in the Hospital for other surgeries since my J-Pouch and I violated specific medical orders to use a bed-pan rather than risking a fall using a bathroom.  I did this because, at least for me, its not possible to use a bed-pan without making a mess.  I can imagine that a nursing home care-giver could periodically empty an ostomy bag and keep you clean, but if you get messy with bedpans, or worse incontinence, I think you would be left dirty more often than not.  Bad medical conditions would likely result from not being clean.  I hope I am at least 10 years away from being forced to make such a decision, but as Tootsie notes, its something I think about often.

 

It would be good to know what one or two foods people avoid and what they eat that they think helps.  I sometimes avoid wheat.  I take Konsyl some of the time.  It holds everything together but probably increases frequency a bit.

Surgeon has told me that there is nothing else they can do to help me as my pouch has constantly given me problems, and I now suffer with incontinence after my sphincter muscle was damaged in a small Fischer op last year. I would still rather try and change my diet and my profession before reverting back to an external bag

Sorry you had to feel this way.  I have no shame nor do I want anyone who medically has no choice to feel shameful.  Everything is personal.  I have been told that if I never would have said anything, they wouldn't know I have an ostomy.  Some things we have no control over - and I definitely pick this over being so sick that I can't do anything.  Pros and cons to both.  When my J-pouch worked, life was great.  But when it didn't, it really really sucked.
Originally Posted by Mathieu:

I had an ileostomy bag for 12 years, and now have had the J-Pouch also for 12 years.

 

Never ever ever would I ever want to go back to an ileostomy bag. It created so much shame for myself, always trying to hide it, never wanting to have to explain things to anyone. People were always shocked and dumbfounded when they found out about the ileostomy, and they would see me differently, and I could feel their pity that I never wanted.

 

Now at least I look and feel normal, and can walk around without my shirt in the summer. As for health, things improved dramatically after switching to the J-Pouch. I think I must have been in constant dehydration with the ileostomy and didn't know it.

 

I had an ileostomy bag for 12 years, and now have had the J-Pouch also for 12 years.

 

Never ever ever would I ever want to go back to an ileostomy bag. It created so much shame for myself, always trying to hide it, never wanting to have to explain things to anyone. People were always shocked and dumbfounded when they found out about the ileostomy, and they would see me differently, and I could feel their pity that I never wanted.

 

Now at least I look and feel normal, and can walk around without my shirt in the summer. As for health, things improved dramatically after switching to the J-Pouch. I think I must have been in constant dehydration with the ileostomy and didn't know it.

I never want to go back to the bag although I felt better with it than I did before the removed my colon the year I had it was very bad with lots of skin irritation.   Diet is the key, figuring out what works for your body.   I have determined that I can't eat everything and that is okay.  I feel better and am healthier 7 years later even with dietary restrictions.

There's no way on God's green earth that I would ever give up my j-pouch to go back to a bag. I wore a bag for about 5 months after my surgery and it was the worst time of my life. I hated everything about it and every single minutes. Unless it's a choice between life and death to take the bag or die, I'll keep the j-pouch as long as possible

Please realize that your "in between" year is not always the same as it would be for your permanent.  I had an in between as well, and my permanent is totally different. (too the good I might add )
Originally Posted by Mrs. H.:

My pouch is 10 years old and even after a bout of night time incontinence after my first pregnancy (I had no issues with my second) would never go back to having Colitis or an ostomy bag. I had an ostomy bag for 1 year between surgeries and that year sucked so much!

 

I'm sorry, but I totally disagree with your comment.  You make it sound as though having the Ostomy is such a bad thing and only if you are "demented" (not knowing what is going on) would you settle for one.  Every one of my Ostomy nurses actually had an Ostomy and many in the Hospital did as well.  The acid on my buttocks with all of the incontinence was much worse to deal with then having to figure out which appliance is the best for me.  Originally Posted by alykopy:

I am 11 years with my pouch for FAP and doing great!  I work in a hospital setting with many elderly who are incontinent.  I would consider returning to an ostomy in the future if I am ever demented and need to be physically cared for.  I do not believe it will be possible to keep someone who has 5 + bowel movements a day clean in a nursing home.  On top of being dirty, the stomach acid coming straight through would cause a serious decub wound which would never heal.  The pitfalls of my job include being able to imagine the worst case scenario for growing older!! 

 

My pouch is 10 years old and even after a bout of night time incontinence after my first pregnancy (I had no issues with my second) would never go back to having Colitis or an ostomy bag. I had an ostomy bag for 1 year between surgeries and that year sucked so much!

I am 11 years with my pouch for FAP and doing great!  I work in a hospital setting with many elderly who are incontinent.  I would consider returning to an ostomy in the future if I am ever demented and need to be physically cared for.  I do not believe it will be possible to keep someone who has 5 + bowel movements a day clean in a nursing home.  On top of being dirty, the stomach acid coming straight through would cause a serious decub wound which would never heal.  The pitfalls of my job include being able to imagine the worst case scenario for growing older!! 

Had my J-Pouch just over 12 years. In which the last 3 years of having it were the worse years of my life.  I am so happy that I decided to go to a permanent Ileostomy. No regrets.  Had a rough time after surgery, will not lie.  But I have always had healing issues, so I didn't really expect this to be any different.  Currently I change my bag 2x a week. It's a wonderful feeling knowing that I can be out and about and not worry about having to run to the bathroom every 15 minutes!  I am the third person in my immediate family to have an Ostomy. Please contact me with any questions.
Good luck.
 
Originally Posted by Hockadoo:
Originally Posted by Hockadoo:

JenA - I posted survey because I'm currently considering such a reversal and want to get a feel for how often such a decision is made. Failure rate on J-pouches seems to be about 5 percent to 10 percent, so would expect results to closely reflect that. The middle answer is the interesting one. 

 

 

I have to look back 22 years and I remember being in so much pain and not being able to void other than foam and blood.  I remember feeling like a brillo pad or SOS pad was being dragged through my intestines.  I am so much better now but had to go gluten free and am very glad I did as now I do not have to take anti-biotics.  It also has helped tremendously wiith my asthma and migraine headache issues.   I have also been experimenting with doing mostly dairy free.  I use cashew and almond milk.  I have used coconut milk in my coffee.  Not quite as good as 1/2 and 1/2 at all but tolerable. I take 6 prescriptions less than before I cleaned up my diet.  I now have only two on going scripts and not for pouchitis.  Yeah!!!!!!

I have a 20 year old pouch and absolutely love it!  I wouldn't change a thing except for not having UC obviously.  It has been a blessing and has saved me from so much pain.  I can lead a normal life.  The only problem I've had is when the connected area closes - where the pouch connects to the anus - it gets to where it closes and I cannot go to the bathrooom.  I have to have outpatient surgery.  Botox (YES THAT botox) is injected around the area so the muscles relax and I can evacuate my pouch.  i've had this done twice. Other than that I consider myself very lucky.

Hugs to all,

jill - pouch

so far so good.I have had the poch for 4.5 years and it works well.i think it takes time and care to adjust and is a never ending job but i feel quite "normal" and  have a good life.I would go back to the bag if i had too and i could handle it ok but i definetly prefer the pouch when i take a shower,look at myself in the mirror,use a public bathroom,go to the pool etc....

My j-pouch sclerosed after 5 years and failed completely at 10 years.  I wish I'd never gotten it and had stayed with the ileostomy I had between surgeries all those years ago.  However, I am back to a permanent ileostomy and my life has changed completely for the better.  I can travel, eat, work, and live without constantly worrying about accidents, where the nearest bathroom is, etc.  I'm happy to answer any and all questions for those considering the reversal. 

Take down 4 months ago have had some problems but not one problem now or latter would take me back to a bag unless my life was at stack. I have gone threw 15 years of colitis. problems in life are normal some people have big ones some have small ones I will deal with what comes when it comes wellcome to life. I love mine without a bag!

ive had my pouch since 2000. I've been dealing with pouch iris since 2001. What I've found is that my diet plays a huge part. I stay away from sugar, dairy and gluten.  This keeps my pouchitis in check. I was checking in to Biologics but I just don't want to go there. Diet is key for me. And managing stress.  I've never considered going back but I was someone who was happy with the bag because I was happy to feel a thousand times better after first surgery.  That said- I'd do anything to keep my pouch.
I CLEANED UP MY DIET and have had NO pouch infections for three years.  I used to have infections chronically, had to be on Cipro for years which ripped up my stomach and small intestine.  I basically decided to try to knock out so many prescriptions and go more natural.  I eat mostly organic food or at least NO hormones, no antibiotics in my meat.  I t r y to buy non-genetically modified foods.  I would say going gluten free was the final clincher for me to have no infections in my pouch.  I do take a nutritional drink and use pro biotic capsules.  Tablets go straight through and don't get digested.  Use B supplements, rice protein powder with good fruit in the a.m.   I have gone from 8 prescription drugs down to one for asthma.  I have just s started methotrexate for Rheumatoid arthritis whIch also has benefit fir frequent dumping of my pouch.

And I would also like to 2nd the notion of a diet specialist for those who have troubles. The itchy burning butt pain went away once I stopped eating irritable foods. So did most my other symptoms.

Baggage is the worst. Especially if it's hanging off of you collecting s**t .

 2 years with the illeo was definitely humbling, but I'm already a humble person so, really, it was just frantically depressing . Worst time of my life, uncomfortable in ways I never thought possible. Worse than any pouchitis and incontinence I have had in the 2.5yrs j pouching.

I just hope I can stop pooping in my sleep long enough to find a good man or 2 in my life before the threat of the bag ever returns to me . Seriously.  (and why is #2 the magic number in this post?? Coincidence ...? )

 

 

I have had a jpouch for 16 years and had pouchitis for all 16 years.  My Gastroentronologist has wanted me to go back many times but I just can't make myself.  I had an ileostomy for 6 months and suffered almost every day with skin irritation under the pouch.  Hard to keep a pouch attached to weepy rashed skin.  I'd rather deal with the issues that come with the pouchitis unless I get so sick I have no choice.

 

I had such a hard time adjusting after take-down I seriously considered it. I was going 15-20 times a day and had horrible butt burn. Over time though, it gets better and you adjust. Diet, meds, ointment, etc. I would if I had to, but as it is, I would much rather keep it. Going to the bathroom often and some occasional discomfort and minor issues is much better compared to the bag...

I went so far as to get some samples and I wore an empty one around for a couple of days! But then my doc tried a new drug combination and I finally got rid of my constant, 12-year struggle with constant fecal incontinence! It's so worth working out bugs and kinks first. The. You gotta know what's best for YOU.

Originally Posted by Dutchie:
Originally Posted by NoColonKen:

My pouch is 32+ years old, and I have only recently considered reversing it because I had a subdural hematoma (bleeding under the skull) caused by a combination of using blood thinners and having to push very hard sometimes to fully empty the pouch.  Stopping the bleeding required a craniotomy, which was not one of the things on my bucket list.  They basically cut off the top of your skull enough to stop the bleeding and then wash things out.  Much, much, worse than the ostomy.  I am off blood thinners now, but may eventually be faced with choosing the high risk of a stroke, or going back to having and end ileostomy.  I had one for 6 months before they created the j-pouch, leaving me with a loop ileostomy.  The loop is far worse than the end ostomy because of the skin irritation many of you mention.  A "well built" end ostomy sticks out just enough to make sure that what comes out drips into the bag and not on your skin.  I was so thrilled to be done with my sick colon that I would have been happy to live with the bag, even at age 22.  Of course, I knew that the j-pouch was the next step, so I guess its really hard to know for sure.  For now I will keep it, but I will keep talking to surgeon's about possibly un-doing it as the trade-off vs a stroke, and also just getting older need to be considered.  Recovery from surgery when you are 22, even a very sick and underweight 22, is much easier than it would be today at 55.  Waiting till I am 70 might not be the best idea.

I'm interested what you wrote about the subdural hematoma. I've wondered if that could happen but my GP blew it off. Guess I should find a new specialist since my Gastro has passed away.

 

The head surgeon and my Cardiologist blew it off as well, they said I must have hit my head or that the blood thinner just caused the hemorage.  I went to a top Neurologist here in town and had him look at the MRI without telling him my theory.  He said the blood was too symetric to have been caused by hitting my head unless I was hit exactly in the middle center of the head, which never happened.  I told him my theory, and he said "sure" people pop blood vessels all the time from (what I guess is called) Valsalva.  The difference was that my blood thinners were too strong, and once the small vessels blew, it kept bleeding until the headaches got so bad that I went to the emergency room.  The more I thought about it, the more I realized I might have had the same issue before I took the blood thinners, the difference being that the headaches eventually go away because your vessels eventually heal and the blood gets absorbed back into the stuff that sits between your skull and your brain.

I had a one stage surgery done in 2011 to create my pouch...so no clue what it's like to have a bag and it scares the crop out of me even thinking of it. I have pouchitis, but I take antibiotics to handle it.  I'll continue that.
Originally Posted by NoColonKen:

My pouch is 32+ years old, and I have only recently considered reversing it because I had a subdural hematoma (bleeding under the skull) caused by a combination of using blood thinners and having to push very hard sometimes to fully empty the pouch.  Stopping the bleeding required a craniotomy, which was not one of the things on my bucket list.  They basically cut off the top of your skull enough to stop the bleeding and then wash things out.  Much, much, worse than the ostomy.  I am off blood thinners now, but may eventually be faced with choosing the high risk of a stroke, or going back to having and end ileostomy.  I had one for 6 months before they created the j-pouch, leaving me with a loop ileostomy.  The loop is far worse than the end ostomy because of the skin irritation many of you mention.  A "well built" end ostomy sticks out just enough to make sure that what comes out drips into the bag and not on your skin.  I was so thrilled to be done with my sick colon that I would have been happy to live with the bag, even at age 22.  Of course, I knew that the j-pouch was the next step, so I guess its really hard to know for sure.  For now I will keep it, but I will keep talking to surgeon's about possibly un-doing it as the trade-off vs a stroke, and also just getting older need to be considered.  Recovery from surgery when you are 22, even a very sick and underweight 22, is much easier than it would be today at 55.  Waiting till I am 70 might not be the best idea.

I'm interested what you wrote about the subdural hematoma. I've wondered if that could happen but my GP blew it off. Guess I should find a new specialist since my Gastro has passed away.

My pouch is about 22 years old. It really has no issues at all. My Dr. said I was a best case scenario. It's just the freedom that the bag provided that I miss. I'm still apprehensive to go out for meals and outings but it's my own insecurities of using public washrooms that get in the way. I also worry about what will happen in my old age if incontinence becomes an issue. With the exception of itchy skin from the adhesive the ileostomy bag was no trouble. 

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