J-Pouch versus having a colostomy

Dear Folks,

Back in December 2011 I had my diseased colon removed suffering for years with ulcerative colitis. For the next year I had the ostomy bag which was a battle to avoid irritations andd mild infections. Then in November of 2012 I had a JPouch fashioned by Dr. Fleshner at Cedar Sinai. Then in December Dr. Fleschner attached the Jpouch and no more bags. However in the last 5 years I have suffered several pouchitis which is the same cramping, multiple bathroom event (diahhria) and bleeding in my diarhhia. I've had several sigmoidoscopies in 5 years and have taken Humira to help with uclers. My biggest concern is in the 5 years I suffer from fecal inccontinance. I am going through my bouts of medications and face the final option by seeing a colorectal surgeon to discuss what we can do. Th circular ending of the pouch is in question and the Jpouch is tilted to one side versus straight up and down as other Jpouch patients.

I am deeply depressed because living with the Jpouch is going to be a forever incontinent problem which terribly depresses me everytime it happens. Or go back to the bag facing the same issues I had before. I think this decision iss the tougest decision I can make at this point of my life. I am 68 years old.

Is ther anyone out there that can give me insights on my dilemma.

Thanks,

Steven

I was very lucky and young when i had my j pouch surgery. mine lasted about 25 years then i started having problems like yours. i now have an ileostomy and and also am very depressed. im 53 now. sometimes these j pouchs dont work right for everyone. get back to me if you want to talk

I don't have much to say as when I had my surgery in 1976, the j-pouch procedure had not been invented.  I have had an ileostomy since then - I was 18 in 1976.  All I can say is I've had no problems with my ileostomy during the past 41 years, no activity restrictions, no diet restrictions. This alternate procedure was experimental in 1976 and I did ask myself how will this work 40 years from now.  Actually, no one could tell me how my ileostomy would function 40 years on.  In retrospect, I made the right decision.  Today I would ask my doc which option has the best proven track record.  I know our society presents a very negative picture of ostomy pouches, but who care?  I'd much rather feel healthy and be active.  Good luck to you both in making the decision that is best for you.

Mike Q

When I had my operation 9 years ago at age 60 I wondered whether having a permanent ileostomy rather than a j pouch was sort of like settling or giving in.  My doctor said, and I now totally agree, that the opposite is true, i.e., a permanent ileostomy was a great choice to embrace life and be as active as possible.  This is a procedure that the medical community really knows how to do well, and the products (pouches, etc.) are continually improving, while any alternatives like j pouch are subject to lots of complications.  I have never doubted my decision.  My life is almost unaffected by my pouch and I have had no complications.

The scary thing about a permanent ileostomy is the word permanent, because if you feel like you made a mistake, your decision is permanent and irreversible, while with a j pouch, you can change and take it out.  Unfortunately, you might be at that point.

It seems to me that when you read posts, concerns about pouches are usually expressed by newbies, people who have recently had their surgery.  Most of us with longer experience seem to have coped really well.  I have never regretted going with my permanent ileostomy.  Golf, tennis, jogging, swimming, my upcoming 2 week trip to Europe - I don't feel restricted at all.

The j pouch seems like it has had way too many complications.  I think you need a second opinion on either fixing it or getting rid of it. I recommend you contact Dr. Anton Bilchik at St. John's in Santa Monica to see what he thinks.  He is an amazing and accomplished surgeon.  I'm certain he can provide counsel that will be helpful.

I'm 41. Had a total colectomy for UC at 38. I ultimately decided against the J pouch and I have had an ileostomy now for 2.5 years. My reasons against the J pouch centered primarily in the literature which suggested that I had a very high chance of dealing with chronic pouchitis. I simply never wanted to feel the urge to go again. I have had no issues with the ostomy. I am a commercial pilot, I skydive, etc. Literally nothing I can't do due to the ostomy. I found the products that work for me and I never looked back. 

How to Adjust to Life with an Ostomy with Bruce | Hollister

Thanks for your input. It is depressing and I would like to talk to you. 

Thanks for information. I will contact that surgeon you suggested. Thanks again. Steve

Steve,

I have an ileostomy since 2012 . Supposedly due to UC. I still have my rectal stump so I guess I could have a J-pouch. But for now, I am not convinced that it has a good enough success rate and frankly, more sugery just doesn't appeal to me. It took a while , but I now have found a pouching system that works well for me. That is KEY. If you suffer from leaks, get thee to an ostomy nurse! A proper fit is everything. Once you get that and a real handle on proper skin care, dealing with the pouch becomes a very simple thing. You feel like a PERSON that happens to have an ostomy,...not just an ostomate. Take back your power. Take back your life! Choose what gives you the most freedom to be you!

I became the VP of our local Ostomy Group here in Fort Worth, TX as part of my own empowerment and have learned a lot. It will all get better once you make up your mind.

:))

You have been given excellent info.  Nothing is really perfect but permanent works and is easy.....do be sensible and ask or get to an ostomy nurse when things get awkward ....leaks for instance can be simply that you are changing and need a concave opening or whatever.  Best of luck!

Hi Viking,

Thanks a lot for your reeply to my decision. The thought of permanency is my concern. You and others here have lessseened my concern. Thanks again.

Regards,

Steve

I need to echo vikinga. I've tried every pouching system from the three major brands to some lesser known ones. I'm honestly so confident in my system I don't carry extras during my normal work day. I've made slight modifications to my method of application - stolen liberally from folks who've walked this path before.

I was scared the night before surgery. I remember looking at my belly and thinking how tomorrow there would be a stoma there. Let me be clear - removing my diseased colon was worth it. I had forgotten what it was like to not feel like crap every day as well as not see blood with every bowel movement. Should've done it sooner. PM me if you want more info. 

I had my j-pouch for almsot for seven years now. and i only had one case of pouchitis in that time period. yeah sure, i still have on going BM issues on days when i get a common cold or when my allergies are in inflammed, and i do use the toliet more than i normally do. Foods i eat - well pretty much anything, just no sodas or certain teas. HA, if i drink a soda (can or bottle) my insides fill with gas and when being on the toliet i sound like a trumpet player while having a stroke .. just horrible & embarrasing sounds to witness.  A patients biology is differnent with foods it seems, or I here alot of stories from other j-pouchers where they have constant problems with diarrhea, gas, ect ... my theroy is most likely a bad pouch that's not been properly to function.  Another thoery could be most FAB patients do better with the internal pouch that UC pateints.  under all the different  circumstance with leaks, abscess, polyps, or W/e comes after your reversal to your pouch, just sounds like it's a poor made pouch, and its shame after all the stages of sugerie a person has to comply and endure, to only have a falied pouch. An yes! do some research for a good surgeron. someone with academic achivements in the anastomoies field. I gave up on GI doctors and nurses, when it comes surgery - they wont give anything accurate when it comes to internal (J) pouch.  ...just saying 

Like some of the others, I embrace the freedom my ileostomy has provided! For several years I was in constant pain from UC. Spent my days (and nights) writhing in pain on the floor. Spent a night in my bath tub, crying, hurting all over, too exhausted to change - again - so I just laid there waiting to die. Horrible. Now I'm back to work, part-time, enjoying my time spent with co-workers. My wife and I go out for dinner. I love walking the dog, going to the theatre and viewing museums. Life is good. I even go for massages and with my massage therapist have found a way to place my bag in the "head hole" and not balance myself sideways. So I guess it's all a matter of perspective and your ability to accept the world not as IT is, but as YOU are. Wishing you healthy thoughts and peace...

I had a j pouch for awhile, many complications and pouch infections. thought i would have to live on Flagyl and Cipro, not good.. Bowl movements were 15 to 20 per day, was afraid to leave the house. Quality of life?? terrible.Butt was so sore from movements it hurt to sit. After18 months with j pouch, went back to illeostomy.Have a great pouching system, no leaks. use 1 piece cymed bag, cavilon barrier wipes, eakin rings and no leaks! If you are active, cymed is a good choice of bag. Swim, bike and run with no problems, change every 3 days. Hated j pouch. Was reciently told that our small intestine was not designed to hold, or be a resivoir for fecies, therefore infections occur.

Hi Stevebeme and others!Back in 2008, when I was considering having a J-pouch, I went to the top team of J-pouch colorectal surgeons in Canada that I could find -- at Mt Sinai Hospital in Toronto. I had an excellent, but very arrogant, female surgeon, who shattered my dreams when she simply statedthat I did not qualify for a J-pouch. She didn't explain why, except that she said I was " too old and too fat" . (I was 57 at the time and 200 lbs.) She took the decision making away from me. It wasn't her style to explain all the complications of the J-pouch to me. After being very upset for weeks, I did much research on the Internet, talking with many j-pouch recipients in England, the USA and Australia via Internet. I also found out that my surgeon had written over 60 articles about the complications with living with aJ-pouch, based of 20 years of follow- up of her own patients.

So I went ahead and agreed tothe permanent ileostomy operation in Sept. of 2008. As part of the post-op program at Mt Sinai, recovering patients and a social worker would meet several times a week in a group to talk about our fears and concerns. The group consisted of people with J-pouches and ileostomies, both experienced (who came to the hospital just to attend the meeting) and recently operated patients from my floor, like me. After asking many questions from the experienced J-pouch people and experienced ostomates with ileostomies, I began to realize that, in my opinion, getting a J-pouch, was like playing Russian Roulette: it worked great for some people and not at all for others (who had many infections and/or leakage.)I came to my own conclusion that if I had chosen to get a J-pouch, I would have been taking a big gamble. The social worker, the dietician, and even my hospital room mate comforted me in telling me that an permanent ileostomy had been a good choice, even if it was the doctor who had decided on my behalf. In fact, my room mate said that she had had5 different operations in several different hospitals to correct her J-pouch, and now, at Mt Sinai, she was finally getting a permanent ileostomy.

That was back in 2008. Nine years later, I can say that my doctor madea terrific decision for me. I am free of running to the bathroom forever. Five months of the year, I go to Florida. I'm a water baby who spends hours and hours in the ocean snorkelling; and whether in the ocean or in the pool, I never worry about my bag. Last winter, I skied for the first time in 18 years; last month I ziplined the highest zipline in the province of Quebec. Although I have issues with my knees, I have never had issues with my stoma or ileostomy. Right from the start and by talking to several ostomy nurses, Ifound the right products to use .....so over the past 9 years, I have manged NOT to have any irritations at all. My late husband was very supportive of me getting a permanent ileostomy (he didn't want me to have any more operations) and we had no issues, or problems having enjoyablesex . (I wore a kind of tube top around my stomach to hold everything in place.)I am living life to the fullest after having suffered with UC on and off for 33 years prior to 2008. If I had a choice right now to convert to a J-pouch, I would not switch. Life is too good, just the way it is, with my pouch. Best of luck, Julie.

Lovely post.

This jpouch/pull-through surgery was still fairly experimental when I had my surgery in 1976.  I had the standard ileostomy surgery, though my parents tried to talk me out of it.  I was 18 thought how good will this new procedure be in 10 let alone 41.  I've never looked back and like you I've led an active life.  Ostomy products have improved dramatically since 1976.

Mike Q

Hi there, thanks for your write-up....

im going through the process of trying to get ‘best-fit’ for my ileostomy....tried several combinations and still having seepages.....it’s been 8 months now. As had two formed. First was too sunk in and so after 4 months he made it into a better one....but alas this has retracted back to quite flat. I wear convex and ring, but still bags only last a day without stinging and leaking. Good to hear your positive outlook.

Wendy x

Mr Seeker.... Could I possibly ask you a few questions about ostomy armour.... It's a brand I'm considering, just not sure if it works with my two piece Hollister... 

VeritasSeeker, see you are a commercial pilot. Guessing helicopters looking at your location and past.  I’m wondering if you have any advice on flying with your Ostomy Bag?  I’m an EMS guy, former military.  Got hit with Colon Cancer a couple years back, recovery is going in right direction and was hoping to get SI medical and get back to work- Apprehensive about seat belts, vibrations, altitude changes etc..  Any advice appreciated.

hello to you

sorry for your suffering, but you kept your J-pouch a lot longer than I.  I had it for about a year and was just as miserable as with UC.  Urgency, bleeding (I actually became anemic) cramping and the smell!!! I have had several revisions since as well and had to have my bladder reconstructed twice due to scar tissue from the pouch. It has been a bumpy road for me and a divorce is pending. Before returning to Arizona 4+ years ago I lived in far Northern California - almost to the Oregon border in a tiny community called Happy Camp. Just this last October half the town burned in a very tragic fire.  So here I am in the central mountains of AZ wondering what I am supposed to do with my life NOW.