Mike,

You ask a very good, but very difficult question to answer.  A lot of us wish we had crystal balls so we could answer the question.  I can't answer your question, but I can share my experience.  I have had a J Pouch almost 30 years.  I have battled pouchitis with antibiotics and then biologics for around 27 of those 30 years.  Yes, it has been endless meds and treatments and chronic inflammation, and in the last 10 years a Crohn's diagnosis and now, in 2021, a stricture which I am having dilated.  Despite all of that, my quality of life has been very good.  I have worked 30 years full time as a trial attorney and still doing it at age 58.  Could I have had all of that, sans the meds, the inflammation and the Pouchitis, by choosing an end ileostomy?  Yes.  But I do not regret my choice.  I think that for me, the end ileo and having a bag would have been tougher than for most people.  But that is just me.  I could probably go to an end ileo at any point in time, but I am choosing to fight to keep my J Pouch.  I will probably keep doing so until my J Pouch inlet perforates, or I start getting blockages, and there is no other choice or alternative.

But that is me, and you are you.  And your course could be like mine, or it could be worse.  It also could be a lot better.  You just do not know.  This is a support board for problem pouches, so the people who post here are, for the most part, the poorer results.  The people with good results, of which I am sure there are many, are not here, as they do not need support or help with pouch issues.

If you choose a J Pouch, it's 100% you will be told to scope it every year, because of the cancer diagnosis.  They will be watching the rectal cuff, which is the only colonic tissue left in after the surgery, in particular. It will be biopsied every year. That is one thing you have to consider that I didn't, because I did not have cancer, just dyplasia.  But even with the dysplasia diagnosis, annual scoping is indicated.

So good luck with the surgery, pick a very experienced surgeon (this is crucially important if you do a J Pouch), and I wish you the best in this decision.  Hopefully others can give solid input.

Hi Mike,

i am very sorry to hear of CRC diagnosis.

I live in south Florida so that is my only point of reference for recommendations. If i had a do over I would have sought out a center of excellence outside Florida, where they do a ton a these.

I would never choose a permanent bag. 13 weeks of the miserable loop ileostomy confirmed that choice. I hated every minute of that bag!

as I have posted multiple times here, surgery is a guarantee of nothing. You won’t know how your body functions with the pouch until you have it. I have been told it could take up to a year for everything to settle down. I have also been told it might never.

in my very humble opinion I think you should try the pouch.

My mother in law had it as a one step in 2004 at age 69

now in 2021 at age 86 she is still pouching away with a great outcome, eats everything and drinks alcohol and goes 6-8 times per day. Although I have a different outcome so far, I would still choose the pouch over bag every time.

you would not want to look back and say ‘why didn’t I try it.’

good luck and let me know if I can be of help in any way.

Eric

I’m so sorry to hear about your diagnosis. I agree with the others. I wasn’t happy at all with my temporary ileo. I’m 4 years post take down with my j pouch and couldn’t be happier. I do have chronic pouchitis and am on meds for that. I have adhesions from surgery that kick up from time to time and are painful, several partial obstructions (these happened with the temporary ileo and without), and am on 2 anti- diarrhea medications daily, but it’s way better than having an external bag.

Although that’s just me. You are on a j pouch forum so you might get some slanted opinions here. Maybe some osteomy forums might give you some good insight as well? either way, I wish you luck with your decision. Stay well.

Hi, Mike. It turns out that J-pouch patients and end ileostomy patients have similar overall levels of satisfaction, so it really is a personal choice. For some people an external ileostomy bag is no big deal, and for others it’s a horrifying prospect. Having a J-pouch enabled me to take up scuba diving and martial arts after my surgery - I hadn’t anticipated either, but an external bag would have made both more challenging or impossible. I traveled a substantial distance to have my surgery done by a surgeon I selected, but I was lucky to have good family support in the city I traveled to.

Will your treatment include radiation, or is surgery considered sufficient? That might affect your decision, since an irradiated pouch exit can have functional problems. Can your GI recommend a good local J-pouch surgeon? The Mayo Clinic in Scottsdale would be one place that might have the one you’re hoping for. Good luck!

I'm so sorry for what you are going through. I had uc for 18 years. My colon ruptured and was removed Sept 2019, 3 step surgery with takedown Feb 2020. I've had pouchitis with the pouch and some struggles here and there but overall am so glad I went with the pouch. It is a personal choice, but in my opinion if the pouch doesn't work for you, you can always go back to the end ileostomy. Many people have no issues at all with the pouch. I'm 48 btw, so close to your age to go through this. I'm confident me gi doc will get me through the ups and downs. Hang in there!

Thank you all with your great suggestions.

Dr. Remzi at NYU is my surgeon and he is great and one of the most experienced out there.  He may be worth the travel, however the surgery for a JPouch is complex and requires several surgeries so going far away from home is doable - but a challenge.   I chose a JPouch and so far I am 4 months out and happy with it.

MikeAZ,

If you do travel for your surgery as suggested by some of the posters above (and I think you may want to seriously consider that, as an experienced surgeon would be particularly crucial if you choose the J Pouch surgical option), you might want to contact the facilities you are contemplating having it done at and asking about lodging. In 1992 when I had my J Pouch Surgery, Mount Sinai Hospital in New York City was, at that time, the highest volume J Pouch manufacturer of any hospital in the USA. They then featured the top colorectal surgeon in the country at that time, Dr. Irwin Gelernt (the other NYC hospitals have since caught up with or passed Mount Sinai on J Pouch surgery; Dr. Gelernt, may he RIP, passed away in 1996, and he ran their colorectal surgery center). At that time NYC was not any great travel distance for me- just a train ride- and I inquired about lodging for my family and I. It turned out that Mount Sinai had an erstwhile "hotel" for "medical tourists" and their families, because people were traveling to NYC to get that surgery in 1992. I ended up staying in that Mount Sinai hotel at various times before and after my surgery for various procedures and I think my parents stayed there as well at various times. At the time it was at a reasonable cost and was dormitory like housing.

I suspect that some other hospitals might make their facilities "medical tourist" friendly by either maintaining such similar lodging or, if not, they can perhaps direct you somewhere that other patients or their families usually stay short term. It is doable and if it means having a more experienced J Pouch surgeon, I would do it. Also, AirBnB and similar websites could be an option. You might want to stay in the area and near your surgeon for a few months and at least between step 1 and step 2.

Of course if you choose the end ileostomy, you don't need to be concerned with this issue as the likelihood that someone in the Phoenix area can handle a colectomy and end ileo is very high. Building and attaching/installing J Pouches, on the other hand, are very, very complex surgeries as others have attested, and you need a master technician. And you will want to travel to get to that person and maybe plan on living somewhere else for at least a few months. On that note, I was out of work and more or less out of action for 6 months after my 2 step J Pouch surgery. I had numerous complications both after step 1 surgery and with my temporary ileo, and then blockages after step 2. However, the support I got from Mount Sinai's staff and my surgeon's staff in getting me through those complications and other issues was phenomenal. You should always plan for the worst, and hope for the best. Good luck with the decision and keep us posted on your progress on it!

MikeAZ…. I never had UC but was diagnosed with colon cancer 2years ago and also had to get it removed.  For me it was a scary journey.  I just had my 44th Bday and have had my jpouch just over a year.  What helped me the most was to just stay positive.  I did chemo first, then radiation, and finished with 2 step surgery. I had to have the temp bag for 4 months and was not a good experience for me.  The first few months were also hard but slowly it got better and better.  I am a poucher that does go over 12 times a day but is still better than that bag.  I have not had any pouchitis or any other issues. One thing I learned is that all of us are different and what works for me may not for you. I wish you the best on your journey and we are here to support you any way we can…

Thank you all again for sharing your experience. You all are fighters and very kind people. Still reviewing the options and hopefully will make the decision soon.

I would recommend Cleveland clinic in Ohio. They do tons of pouches. I truly believe that you want a surgeon who does these surgeries all the time and not just a couple times a year. I'm not even a year out from my takedown surgery but I love my pouch. I couldn't be happier. Don't get me wrong I definitely have good days and bad days but my overall quality of life is very good. I hated having a bag. I've also heard from many different people that a 3 step surgery is the way to go and has the highest success rate.

Hi, MikeAZ. I was diagnosed with colorectal cancer after 30+ years of ulcerative colitis. When a malignant tumour was discovered, everything progressed very quickly to remove my colon and create my j pouch in a two step procedure.

At first, my surgeon was pressing for a permanent ostomy. I didn’t know about this site, and I didn’t know I had options. My tumour was in a tricky spot and they didn’t know if I would be a good candidate for a good functional j pouch. I almost said yes to the permanent bag. Luckily, my surgeon referred me to a colleague who was certain he could create a j pouch for me, and away we went. I had a temporary ostomy bag for 10 weeks.

I am very happy with my j pouch, and it functions perfectly, although like everyone else in the first eight months it was very tough going: frequency, urgency, anxiety whenever I had to leave the house, leakage, burning raw skin. All normal reactions while your j pouch learns how to function in its new life.

Looking back to the few weeks I had an ostomy, I know that if I had to live with a permanent ostomy I would have managed it, although at first I denied that it was part of me. I even offered to pay my home nurse to come everyday to change it for me. But I soon learned how to remove the bag, clean the stoma and apply a new bag in under 10 minutes. Triumph! I soon learned to love and appreciate my tiny stoma because it allowed me to live and kept my bodily functions working. And there are all sorts of elastic body bands, bag coverings, and equipment to help you feel physically confident.

What was a concern for me, far in the back of my mind, was the real concern of a lifetime of purchasing expensive bags and equipment, possibly many decades or more, and whether there will always be health insurance to cover these costs. Also keep in mind that when you are much older, you might need assisted living. It can happen to anyone. No one has a crystal ball. Circumstances change, families change, finances change. A bag could be an issue if someone other than you had to care for it. Yes, j pouchers have real issues too, frequency, leakage, food issues, and some j pouch problems can be long term.

If you decide on a permanent ostomy, make certain that your surgeon creates a stoma that protrudes (like a tiny wall faucet) instead of receding so that output drops easily into the bag. If the stoma is not long enough, it can recede and sink under your skin line, resulting in a divet, or a dent. Your stool will pool inside this divet and cause burning agony if it can’t be fixed. Good luck. Let us know what you decide.

Hi Mike ,  you are a young person.  I would try for a JPouch,  you can always change it later.  I started with a 2step surgery, which unfortunately turned into 4 surgeries. I had an end ileostomy,  then my jpouch for a week,  then a loop ileostomy,  then a sucessful takedown.  The end ileostomy was better than being sick with colitis,  the loop ileostomy was worse than being sick with colitis,  and the jpouch is by far the best outcome.  My surgeon said it takes a full year to get used to it, but you will.   I ran 7 miles yesterday,  and weightlifted today.  I have not yet had pouchitis.  I take zero medications.  There are daily challenges,  but it's wonderful to be free of the UC -  I did not understand how sick I was until after my colon was gone. 

Hey Mike,

I was 44 when my colon perforated and I had an ostomy for 11 months.  A couple things you should consider when deciding what is best for you.  My supplies for the bags were VERY expensive and I had 100% coverage so it didn't cost me anything but I often wondered how others could afford the O rings, tape, bags, wipes, barrier creams etc. that go with a bag.  I am an active person so I selected a j pouch because of my lifestyle and honestly, the bag caused me lots of problems with leaking and skin burns from the acid etc.  I eventually got it under control and was really fast at changing my bag and getting it right so it wouldn't leak.  It's a personal choice but I caution you to research and ask lots of questions.  No one told me my bag would randomly leak, explode if not on correctly etc.   I had blow outs in Costco, family functions, in bed with my partner etc and it was horrifying.  Good luck!

The Cleveland Clinic Digestive Disease Institute’s Department of Colorectal Surgery began offering J-pouch surgery in 1983 and performs about 200 IPAA surgeries per year, having performed more than 3,600 to date. Cleveland Clinic has not only completed the greatest number of pouch surgeries of any hospital in the world, it also has the lowest pouch failure rate reported by any institution. If you’re willing to travel, go where you get the best. My husband had his j-pouch surgery in 1994 by Dr. Fazio at the Cleveland Clinic and has never had pouchitis.

I had a 3 part jpouch surgery two years ago at the age of 50 after having UC for 10 years.  I was able to deal with the UC with meds but my last flare up was the deal breaker.  After 3 colonoscopies in one month my GI told me I needed to either do infusions or have my colon removed.  I chose to have my colon removed after doing some research and decided to opt for a Jpouch.  I hated having the ostomy bag… it was very hard for me to change the bags because my stoma did not stick out far but was flush with my skin.  The ileostomy was bad but the loop ileostomy was horrible.   Leaks, skin rash, itching, burning.  My husband is amazing and did all of my ostomy bag changes.  True love is changing someone’s ostomy bag.  My jpouch has been great and I have no regrets with my decision.  I am blessed to sleep through the night without having to use the restroom and I do not have any issues with leaks.  I have lots of BM but I always have so it is not an issue for me.  I live in Houston and my doctor is amazing.  He performed robotic surgery but hand stitched my pouch.  His name is Dr Scott McKnight.  

See if you have a local Crohn's and Colitis Foundation in your area. They really helped me. They gave me the phone number of a patient advocate, and he helped me choose a very good surgeon in my area (in fact the same team did his surgery). He also let me know what to expect and was a very good resource for any questions I might have. He even called me a couple of times in the hospital to see how I was doing. I hope you have the same resources in your area.

The pouch was the right decision for me. I hated the bag, but I have always been disgusted with poop. There have been problems. A three step turned into a four due to an internal abscess. I have chronic pouchitis, but it is well managed with antibiotics. For the most part, I do what I want to do and eat what I want. My skin is pretty sensitive and underneath the bag wafer, it became weepy and inflamed. It was hard to keep the bag on and I had to spend more time prepping my skin. This all created a large damaged area that I thought would scar permanently but fortunately it is now gone. Healing from the pouch was a challenge. I went back to work four weeks after the surgery and wish I had taken a year off as that is how long it took to feel myself again. In all, I lost two years to flares, prednisone, surgery and healing. I would do it all over again if I had to.

Talk to your surgeon about leaving options open. That way, if the bag is not what you had hoped, you can get the pouch.

I wish you health in whatever choice you make.

@MikeAZ posted:

Hello Friends,

I was diagnosed with colon cancer recently in the distal sigmoid colon after 12 years of ulcerative colitis. I was under yearly colonoscopic surveillance this is the first time that biopsy confirmed cancer. The following ct scan did not show that the cancer has spread, but I need to get my colon removed asap.

Ulcerative colitis was under control with Entyvio but I was never in full remission and had inflammation and bleeding and 10+ bowel movements for these 12 years.

I have been offered 2 step j-pouch surgery. I need a reference of a good surgeon specialized in j-pouch in the Phoenix, AZ area. I am also open to have surgery any where in US if experienced j-pouch surgeons are not available here.

I was also thinking how to chose between j-pouch or end - ileostomy ? I am a male in early 40s. What are the chances that I will not have chronic pouchitis or related problems and that will continue my medicines, urgency and 10+ bowel movements in a day and inflammations. How to decide if I choose to have a  Ileostomy over J-Pouch ?

Any suggestion/recommendation and guidance is highly appreciated.

My j pouch surgery is coming up on the 15th this month. I am fortunate to go to what I believe is one of the best cancer hospitals in the US. City of Hope in duarte California.  I have been going there for almost 4 years now. Starting of with prostate then colon and now rectal. The care they provide is second to none. Amazing staff as well