Ugh. Just got some really bad news. My son had a pouch redo by Dr Remzi last Oct. First one was great for a year and then had stricture and pouchitis and separated anastomosis. He had accepted that he might have to get a permanent bag and was ready to have the pouch removed. Then we visited Remzi who said he had 80% success rate with redos and he planted a seed of hope. My son being only 18 wanted to try once more. Now 5 months later and lots of complications, Remzi doesn’t think it is going to work and is recommending excision and permanent ileo. He was ok with the ostomy. He went to prom, on roller coasters, zip lining, and cliff jumping with the ostomy. He’s just suffered so much. Stuff you wouldn’t wish on your worst enemy, never got a break. Yet he was always so strong and positive. Redo surgery was tough and I can’t imagine excision is much worse. I’m personally hopeful that this will end his misery. He is still praying for a miracle.
I am so sorry, I know how tough this is on a teenager...have you spoken to anyone about a continent ileostomy? No outside bag, just a minuscule stoma. There are surgeons who do K pouches or BCIRs that could offer him an alternative to a permanent bag, especially since he is so young...You may wish to look into it.
Hi Momma. I’m sorry to hear that your son has gone through so much for it to only end in misery.
I had my pouch excision and permanent ileo at the end of last year due crohn’s disease, and to be honest, it wasn’t all that bad. Yes the first few days are painful, but after that the recovery has been pretty smooth. The only complaint is that the butt wound is taking quite a long time to heal, and I’m 4 months out from surgery.
I really do hope the best for your son. I hope he will be able to get back some normalcy of life if he does decide to the permanent ostomy.
Sharon- I mentioned the kpouch to him and he has no interest.
Rina- are you in pain 4 months later? Are you able to eat or have an appetite? Dr Remzi said 8 weeks recovery.
Hi Momma. I don’t have anymore pain from any of the surgical wounds. Though, the stitching is quite irritating as I still have stitches in the butt wound. I have yet to ask when I’m getting the stitches removed... haha. Also, the area does get itchy at times, but it usually goes away after awhile.
As for eating, I have some sort of complication that has left me unable to eat or drink. I don’t think it’s from the surgery. I’m in the process of trying to refeed myself, but I have severe nausea after drinking just a few sips of juice. I was on bowel rest from April last year, and had my first of 2 surgeries in July. This is where my problems of nausea began. My thinking is that I have developed either severe dyspepsia, or even maybe gastroparesis. Though, in my last surgery, my surgeon found a part of my bowel severely constricted by adhesions from the first surgery. Doctors are not really sure why I am still not able to eat after the adhesion problem was fixed. Another factor could be that I was on bowel rest for too long. As for now, I am on permanent TPN. I don’t think your son will have this problem. Someone else might want to chime in on this.
Eight weeks recovery does not sound unreasonable. I’m sure your son will feel better in no time.
This is my fear that he will continue to have pain or problems eating even after pouch removal. He has no appetite and eats very little now and losing weight if not on Tpn.
When was your colon removed, July 2018? You’ve had problems eating since then? Was your pouch created in the same surgery as colectomy? Did you have takedown?
Hi Momma. My surgery to remove the colon was about 16 years ago when I was 15. I had a 3 step surgery. I was pretty healthy up until 3 years ago. The most recent surgeries were for excising the j-pouch as I had extreme inflammation and an inoperable stricture unless the whole pouch had to be taken out. My stricture was right at the pouch inlet. I did try to have it dialated, but the stricture closed up almost immediately. Structurally, the small bowel made this huge u-like shape dip so that food was unable to pass through anymore.
I hope your son does not have the complications like I had after surgery. Apart from the nausea, I am not in any pain. I travelled for the first time in years since my last surgery and had the best fun I’ve had since becoming sick.
You’ll never know what the outcome is until after the surgery. Sometimes you just need to take a leap of faith so that your son will get the quality of life he deserves.
So when you said “I had my first of 2 surgeries in July. This is where my problems of nausea began” which surgeriy was this? And then you had the pouch removed 4 months ago?
We’ve taken so many leaps of faith only to be let down time after time. Sadly I have no faith left, only worry and anxiety.
Hi Momma. Sorry for the confusion. The first surgery I had in July of 2018 was to create a loop ileostomy to let my j-pouch rest and for the inflammation lessen around the organs. The surgery in December of 2018 was the j-pouch excision and permanent end ileostomy. My surgeon had decided at the time that it would be better for my system to heal first because of the inflammation being so bad. What should have happened was during the time I was waiting for the j-pouch excision surgery that I would be able to eat and heal. In the end, I am still unable to eat. I have violent chills and nausea after having a few sips a juice.
I am wondering if he would benefit from drinking something like Ensure. In Japan, I was drinking something close to Vivonex before my fiasco happened. It’s unpleasant to drink, but it ensure that the body gets the nutrition it needs and the intestines have something moving through it. I heard that if nothing moves through the intestine for a prolonged period of time that the bowels shrivel up or something.
I pray that you and your son will pull through these hard times.
Thanks Rina. I pray things improve for you and that they can find out what is wrong so you can eat.
My son can eat just very small amounts and has no appetite and doesn’t really enjoy food. He is on tpn to pump him up for pouch removal. My hope is that once the pouch is removed his appetite will return and he can eat more.
I had my J pouch removed and a BCIR (modification of a K pouch) created. Due to dense adhesions from prior operations, pouch removal took longer. Everything was done in one operation and the surgery was successful. My appetite was poor after returning home and there were a number of foods that I did not want to eat. I lost 40 pounds. A couple of months later, my appetite improved and I regained as much weight as I desired. I soon was back to a normal diet and was doing all the sports and physical activities I wanted. Getting the BCIR instead of an ileostomy was the best choice for me. Either way, your son’s appetite should improve after he has had surgery and a short time to recover.
I can fully understand your son’s feelings about getting a permanent ileostomy instead of a continent ileostomy since he had good results with it and has had no experience with a continent ileostomy. J pouch removal and creation of an ileostomy should enable your son to regain his health and a good quality of life. At a later date, he could decide to get a K pouch or a BCIR if he so desires.
Thank you Momma. For me, I’m actually praying for a miracle because I don’t even know if I can ever eat again. It’s really been a tough road trying to refeed myself, but my stomach or body wants nothing to do with food. It’s like it is totally content with the TPN, but at the same time this is going to destroy my liver as everything gets filtered through the liver. I’m coming up on a full year on TPN in April. I just hope that somewhere along the line that I can eat so that I can get of this TPN!
I know your son’s surgery is going to be tough, but I have confidence that you two will pull through this. Stay strong!
OK you all are scarying me...... I had 3 surgeries in 2018 and now have a J-Pouch. I was told that I may get pouchitis, which I have had 1x. And most recently, a partial blockage which was tx from home. I got my J-Pouch 12/12/19. I had no idea that you may have to get another, or a K-pouch. I have no idea what is a stricture, anastomosis, dyspepsia, gastroparesis, or TPN are ????. I was told that a reversal may need to be done, but most unlikely, and would not be done before giving the J-Pouch 1 yr. to adjust. I was not told that I could get Chrohns either. Enlighten me please.
Most people do well with a jpouch and don’t have any complications. Those that do come here for advice and support so the topics will seem mostly negative. The successful jpouchers are out enjoying life and not posting here. Search for success stories you will find many there is also Facebook group for jpouch support.
Thank you so much for the great encouragement and support suggestions!🙌😄