Jpouch removal and permanent ileostomy

My jpouch lasted 11 years. The last 3 years of that were not good. Ended up having to irrigate regularly etc. My surgeon said only relief would be end illeo. I had the surgery 26 months ago and feel great physically. No problems with appliance and can eat everything now even salads! It was a better quality of life for me and prob should have done it sooner. Stay positive and give yourself time to heal. It is so much better in the long run. Good luck ! 

I love my ileo! 

Richard. 

I agree with everybody above. I had mine removed 13 months ago and wish I had it removed sooner. I suggest you order samples from everyone, Hollister, Convatec, Coloplast are 3 good companies to start out with. Your stoma nurse might help with your initial selection and it may be the best for you but I tried them all to make sure I had the best fit. I ended up wearing the same company that they started me out with. 

Thankyou all for all the positive responses..My surgery is 2 weeks away and I am very anxious and have so much fear..But am glad knowing everybody is doing well with their ileostomys..I hope it will be a good outcome and finally will have my life back..

How long does it take your bottom to heal ? i have 3 months of work so am hoping I will be healed by then..

I wish you all a lifetime of health and happiness.

I was back to work in eight weeks. Could have gone back in six weeks just didn't want to. If that gives you any idea.  I drive a forklift for a living and had no problem. 

I was also sewed and not stapled. Didn't feel a thing down there. Nothing. 

Richard. 

You might want to invest in a good seat cushion. Not the doughnut hole type as that puts pressure on that area. I used the one recommended by a physical therapist. I used it for 8 months in the car.

It isn't painful like butt Burn! 

That's really good to know..

I am getting my surgery done in Toronto and after I am discharged from hospital we will have a 12 hour drive home....I have a feeling we probably won't do the full 12 hour drive in one day..

I will look into getting a seat cushion..

Thankyou.

I also had a 12 hour trip home which was a combination of a flight with one plane change plus a 5 hour drive.  We did it in one day, but then 12 hours is pushing it if you have one driver.  Fortunately, my surgeon did an excellent job with my bottom and I had no problems when traveling.  The seat cushion sounds like an excellent idea.  Be sure to get adequate instruction at the hospital on changing your bag while in transit should the need arise.  I opted to get a BCIR instead of an ileo and the nurse did an excellent job preparing me for travel.  This procedure worked out very well for me.  Best of luck with your surgery.

Wow. I was lucky. I only live 35 miles from the hospital.  Lucky in that part. But I made alot of trips there and back in a three year period. One was a terrible ambulance ride! I won't go into that one. Lol. 

Richard. 

I hear you Richard.  I live 3.5 hours from Mayo's which is much better than 12 hours!  Lots of trips for us but lucky we live so close.  You will definitely need a cushion.    

Dad gave me the cushion I used. Other medical supplies like ileostomy supplies, walkers and etc. are covered by insurance with a prescription.  Dad's was 100% covered by his insurance.  I don't know if the doctor or physical therapist wrote the prescription. I am guessing PT ordered it with a doctor's prescription. 

As an afterthought, I know that having to travel a long distance for a surgical procedure is a deal breaker for some people.  Access to follow-up care, should it be necessary, is also a consideration.  For me, lengthy travel was necessary because there are currently only two surgeons in the USA who do the BCIR, the procedure I wanted instead of the readily available ileostomy.  There are also a limited number of surgeons who do K pouches, a similar procedure that avoids the need for an external bag.  I would hope that travel distance would not discourage anyone who would want either a K pouch or BCIR. 

I will definitely need a seat cushion for sure...I am not looking forward to the ride home at all.

Bill, I asked about the BCIR but was told they don't do them much in Canada anymore..I don't know why..I am having my surgery at Mount Sinai in Toronto..Unless they just don't do it there. 

Also, how long approximately do you need to stay in the hospital afterwards?

I feel much better hearing positive responses..Thank you all so much

When mine was removed I left the hospital too soon. After 6 days my doctor let me decide if I was ready to leave. We stayed a night in a motel before driving home but should have stayed longer. The stay was initially estimated at 5 days.

Crystal, there is a list of K pouch and BCIR surgeons in the K-Pouch Korner forum that shows Dr. Zane Cohen and Dr. Robin McLeod who are at  Mount Sinai in Toronto.  There also is a Dr. Brian Taylor in London, ON.  I believe that all of them do K pouches.  Although I have and highly recommend the BCIR, the K pouch is very similar and also has a very high success rate.  I would definitely opt for a K pouch over a conventional ileostomy.  The customary hospital stay for the BCIR at Palms of Pasadena Hospital in St. Petersburg, FL is 21 days.  Upon discharge, I had no trouble managing my BCIR.  Some surgeons require a shorter stay, but you could ask them about it ahead of time.  Please feel free to send me a PM with any questions you have.

Bill

Bill.  

They feel a ileostomy is right for me because of extensive scar tissue and they can't rule out Crohns in my pouch ...If that makes sense.

FYI, My removal surgery took 8 hours including 5 hours the surgeon spent on my scarring/adhesions. I had 6 prior abdominal surgeries. So their plan for you makes sense to me. 

IMO, Cuffitis and pouchitis are IBD under other names. My cuffitis/UC was the main culprit contributing to pouch failure.

Wow !! 8 hours..I also had 6 other abdominal surgerys also including hysterectomy for endrometreosis.

They left one ovarie which I will be getting removed at the same time as well as the gallbladder..

The thinks or bodies go through doesn't seem fair...I thought when I got the jpouch back in 99 everything would be great and it was for abit .My CRS says bathroom trips should have been 5-7 but mine were always 10-12.

The pouch-vaginal fistula was almost 3 years ago and terrible inflammation as you mentioned ..

I am terrified of this surgery and scared that I still won't feel good after I get the ileostomy. But I no they are fears and when I remember back to when I had a temporary one..That was the best quality of life I think I had. I think I am making the right decision.

I am just super nervous..I have surgery in 6 days at 8 am.

How was your recovery after surgery ? What bag do you like best? Also is there anything I should bring to hospital with me that I will need. Any advice would be great.

Thank you so much��

I had a hysterectomy as well. I had my ovaries removed when my colon was removed. I was postmenopausal so the ovaries were not working anymore,  sorry if tmi. So I think you are on a similar tract.

I am feeling much better. I can actually go out to lunch with friends Again! A little thing but a very big thing for Me! 

FYI Ostomy Secrets has a 40% off certain items sale going on right now. I just ordered a wrap and another pair of underwear.  

I am looking forward to the day that I can do the things I want to do without the fatigue and worrying about going to the bathroom all the time..I am so happy you are getting to do that...

besides ostomy secrets are there other stores or items I should buy?

Thanks again..

3 more days until my surgery...

sooo nervous ��

I have found a few things on Etsy. I have a stoma cup which you can wear over your stoma while changing from one bag to a new one. It is worn with an appliance belt. My hospital stoma nurse included a belt in my prescription for stoma supplies. The cup is helpful if you have to change your appliance while it is active (pooping). I also bought bag covers. They cover the bag while wearing regular underwear. I looked at the Canada store link and things there were more expensive. 

Good luck for your surgery. Let us know how it goes!

Welcome to J-Pouch Group Ginny!

I had chronic cuffitis and pouchitis that ultimately led to my failed j-pouch.  Long story short I had it removed 5+ years after I had the surgeries and wish I'd had it removed 18 months before I did.  I feel much better.

First I had my j-pouch diverted to a permanent ileo and 6 months later had my j-pouch out as it didn't get better.  Nothing was going through it but it was still sick.  I should have had it all out when I diverted but I was stubborn.  

I have read articles that call pouchitis and cuffitis IBDs.  

The removal surgery was not as bad as when my colon was removed.  Maybe it was because I knew more of what to expect.  The rectal stump removal causes an area that takes a while to heal but with a good seat cushion that was not a big deal.

Let me know if you have any questions. 

Paulette

Thanks so much Paulette.  I very much appreciate your quick response.  Just reading on this sight is very helpful.  Thankful you are feeling better and as soon as I have a couple of appointments with the hematologist and my rheumatologist I know I have to make a decision.  I already have had 2 surgical consults.

Ginny, I am sorry that you are having such problems with your j pouch.  I had mine for 30 years and experienced higher than normal frequency, leakage and butt burn.  Ultimately, recurrent high grade dysplasia in the anal cuff and weak sphincter muscles made pouch removal necessary.  I strongly did not want an end ileostomy for quality of life issues, but a number of posters on this forum have had good results with them.  Instead, I opted for a BCIR (similar to a K pouch) that does not require an external bag or expensive supplies.  There is lots of information about both procedures on the internet.  Both of these procedures have very good success rates and patient satisfaction, but unfortunately are not known or promoted by many GI’s and surgeons.  Selection of a procedure is strictly a personal choice best made after doing your research.

The main difference between the surgery I had and getting an end ileostomy was that my surgeon created an internal pouch instead of a direct exit to the outside.  In my case, surgery took longer than normal due to adhesion removal.  I was in the hospital for 21 days, the normal time for Dr. Rehnke’s BCIR surgery patients and experienced no complications.  My bottom healed quickly and I had no discomfort following my discharge.  In less than three months, I was able to participate in the activities I enjoy and to eat a balanced diet.  Please feel free to send me a PM if you have any questions.

Bill