Hi everyone! This is for this considering:

1- removal (excision) of their jpouch

2- Mayo Clinic

Friday October 20, 2017 my courageous, exhausted and very sick husband underwent a 13 hour surgical procedure to remove his jpouch of 20 years. His SECOND jpouch. The first one failed and with all the complications he had 7 surgeries in 13 months. The second one was created at University of Utah 20 years ago. He got a good 10 years out of it. The last 10 years have been full of pouchitis, frequency, straining, antibiotics, Pentasa and just overall hell. Misery at its worst. Diminished quality of life. We opted to go to Mayo Clinic. Dr. Amy Lightner was the surgeon. She diagnosed him with several strictures and fistulas that “webbed out”. It was a long complex surgery due to urinary stents, adhesions, strictures and fistulas. Once the diseased pouch came out (diseased because he developed Crohn’s of the jpouch), the small intestine present revealed it was ridden with “the worst Crohn’s she had ever seen.” She took out 13 cm of diseased small intestine. 

Listen, this is one tough surgery.    Especially if you are sick going into it. He was in the ICU until this afternoon. Elevated heart rate, low hemoglobins, fever.  His major complaints now are gas, bloating, thirst. Nothing is quenching his thirst. And the gas keeps him up at night. Gas is painful! Mayo gives him melatonin to sleep. Gas-x and xantac to control the gas. Tylenol to control the pain with occasional oxy if need be. They seem very stingy prescribing him any significant hospital-grade meds, especially for gas and sleep. His pain is manageable but the gas, bloating, thirst and lack of sleep are killers! He could use some good hydration in the IV. He is on antibiotics in the IV but those aren’t helping his thirst or gas.

Dr. Amy Lightner went out of town for a conference right after his surgery. In fact, she missed her original flight and had to book a later one! She has called me twice and seemed genuinely concerned and said the nurse can page her any time. So the residents come see him in the morning. Which is ok, just would really prefer the surgeon who performed it see him. The nurse now just told me she will not page the consultants. Apparently Dr. Lightner is a consultant. As a patient, how are supposed to know that? The good news is the stoma looks great and is doing exactly what it should be doing! Hopefully this will allow my husband a much better quality of life! He truly is my hero!

UPDATE: Diagnosed with Crohn’s of the j-pouch and Crohn’s Disease. After 18 days at Mayo, he is finally home, with a wound- vac, a drain in his hip (hematoma), and the ileostomy. He had an NG tube placed to get rid of the bile the Ileus was causing. Ileus is VERY common after bowel surgery (I sure have learned a lot!). As rough as an NG tube is, if you don’t have one after abdominal surgery and have gas, bloating, nausea, and BILE filling your ostomy bag, get one! He vomited 1300cc of Bile in addition to filling up full catheters of bile. He also had another surgery before we left as he had a dehiscence- thus the wound vac. We have nothing but positives to say about Mayo Clinic. When a complication arose, they dealt with it- STAT! In fact, when the dehiscence was spotted by a great nurse, she said “I’ll be right back.” And she came back seconds later with three of the worlds top colorectal surgeons, including a Fellow from the UK. Amazing! The nurses are the backbone of Mayo for sure!

He is feeling better and healing at home. He’s eating every two hours. Good solid food that he wasn’t even able to eat when he had his diseased j-pouch. He is feeling better already- no more straining, butt-burn, diarrhea, pouchitis, cramping, 15 trips to the bathroom every night, sleepless nights. None of it! The ileostomy is becoming easier to change now that the wound is closing more. I still cut the flange alongside the wound and build a layer of putty to protect it. Its working great. Due to the Crohn’s, he is beginning Imuran and Remicade. 

For those of you suffering with a j-pouch, there is HOPE! 

Last edited by DavesGirl
Original Post

Yet Mayo is suppose to be good. I hope your husband is doing better at home. I drink G2 to quench my thirst. Will help his electrolytes. Can even make ice cubes with them.

Hypercalcimia??? Usually along with the exhaustion, lack of concentration and increased urinary output one of the top symptoms is unquenchable thirst...it is easy to check and can be very common post op...often passing as a normal side effect of this sort of surgery and anesthetic.

Good luck, I hope that he gets better quickly and that this is the end of the surgical nightmare.

Sharon

That's alot to go through. 

Enough to break someone. 

I went through half the surgeries and all the sleepless nights and trips.   It almost broke me.   What I have now freed me.   I feel so fortunate.  Never in my wildest dreams did I ever think that. Never. But here I am.  I hope he can get to his spot. And he will.  

Thoughts to him. 

Richard. 

Mysticobra posted:

That's alot to go through. 

Enough to break someone. 

I went through half the surgeries and all the sleepless nights and trips.   It almost broke me.   What I have now freed me.   I feel so fortunate.  Never in my wildest dreams did I ever think that. Never. But here I am.  I hope he can get to his spot. And he will.  

Thoughts to him. 

Richard. 

Thank you Richard. He has a better attitude now more than ever. He is quite a warrior- my hero. Best of luck to you!

You are also a hero!  You have stood by him with love, compassion, and empathy when he needed you most!  You have a BIG heart!

Wishing you both a bright, healthy, happy future together.  Now get on with your lives...

Caty

I am considering the jpouch removal. I'm 64 years old and have had the jpouch for 2 1/2 years. I've had multiple bouts of pouchitis and go to the bathroom 15 to 20 times a day. No sleep and  and lots of arthalgia. I just want some sort of life back. I do have crohns and am on stelara. Trying to get off prednisone after 5 1/2 years. Looking for some advice and courage to do this.

My initial thoughts are to see if there are other non-surgical treatments that can restore a satisfactory quality of life for you.  Perhaps a second opinion with a doctor who specializes in treatment of problem J pouches would be appropriate.  The Cleveland Clinic would be a possibility.  Six years ago, medical complications made removal of my J pouch necessary, and I strongly did not want a conventional ileostomy with its associated issues.  I opted to get a BCIR (similar to a K pouch) that does not require having an external bag and is emptied 3-5 times a day with a small plastic catheter.  Although you have Crohns, a small group of people with it can get a K pouch or BCIR.  The location and extent of your disease would determine if you would be eligible to get one.

My surgeon spoke with a jpouch specialist at the Langone Center in  NYC and they suggest temporarily going back to the loop ileostomy. As someone else mentioned, I just don't want more surgeries than I need. I want it over with.

My son went back to an ileostomy for 6 months and it did not help his issues.  He then had a 2nd pouch built by Dr Remzi (big mistake).  6 months later he still has complications and this 2nd pouch needs to be removed.  He is going for permanent ostomy.  We are just waiting for a date ( hopefully soon)

I see the original post from davesgirl is old, but it is amazing that he only took Tylenol and an occasional oxy to control the pain after this 13hr surgery.

 

This really is all about quality of life! The permanent ileostomy has given my husband back QUALITY!  It doesn’t come without issues- the occasional leak at the worst of times, skin irritation and some other issues. And the surgery itself is VERY difficult! 

Always glad to hear success stories Hopefully my son will get there. We are used to occasional leaks and skin issues and that is tolerable. 

This is my son’s 2nd pouch so his last surgery was pouch removal and pouch recreated. The only thing he’s nervous about is the rectum closure. I’m worried about urinary or ed complications. He’s only 19. 

Last edited by Momma

Rectal closure was painful after surgery but they gave him a second spinal before he exited surgery and that helped. It doesn’t take too long to heal! If he can get through that first week with the rectalmpain he’ll be fine. My husband has no urinary or ED complications, thankfully. He is on Imuran and Inflectra infusions. Very little small intestine left when you have TWO j-pouches created. So if he has Crohns do whatever you can to protect what’s left of the small bowel. Keep us updated!

I'm also concerned about urinary issues. When I had part 2 of my jpouch surgery I had to use a catheter for 6 to 7 months due to nerve damage to the bladder. Has anyone had those issues when removing the jpouch.

So here we are two years after his diseased j-pouch was removed. Thank God that thing is OUT! Crohns of the j-pouch can and does occur! 

My husband is sooooo happy and healthy right now! We are enjoying our summer with grandkids, trips, concerts! He changes his ileostomy bag once every four or five days. His mental outlook is fantastic! In fact, on a hike this weekend he said “I’m so glad I got the J-pouch removed. I would have never dreamed of staying overnight at friends house, and hiking again!”  WOW! As his wife, I was thrilled to hear this! 

He is still on biologics to preserve what’s left of the small bowel as there is very little remaining. But they are working and he feels confident, healthy and happy! He has gotten the products figured out- what works for him and what doesn’t. Never any skin irritation now! Its become second nature to him, much like brushing your teeth in the morning, or whatever morning ritual there is. 

So for those of you struggling with poor quality of life with a jpouch- consider getting it out and living with the permanent ileostomy. 

He would gladly tell you “it’s SO worth it!”

Hello All, My son who is 21, wants to have his j pouch removed. His initial diagnosis was at 19 and he's spent 16 weeks in the hospital so far with almost every possible complication imaginable.

The pouch failed almost immediately, and he had to have emergency diversion surgery in Feb. It is now June and after 3 additional hospitalizations we think the leak in the pouch has finally been fixed. He doesn't want to try another reversal - it was hell. He believes a permanent ileostomy is right for him.

What questions should we be considering before taking this step?

J pouches don’t work out for everyone, but there are options available other than a conventional ileostomy.   The two options that do not require having an external bag are the BCIR and the K pouch.

These two options, which function in the same way, have an internal pouch and valve constructed out of a short piece of the small intestine and a button hole size stoma located low on the abdomen.  The pouch is drained with a small plastic catheter 3-5 times a day at the person’s convenience.  There is no leakage of stool or gas and the stoma is inconspicuously covered with a small absorbent dressing.  The annual supply cost can be under $100 vs well over $1,000 for an ileostomy.

I encourage your son to research his options before making a final decision.  A good web site to visit is the Quality Life Association’s (www.qla-ostomy.org) that contains information about continent ileostomies, an article entitled, “Researching My Options” (which I wrote) and a list of doctors who perform these surgeries.  Please feel free to send me a PM with a any questions that you have.

BillV- Thank you so much for your prompt response and for directing me to some resources. I feel better knowing we can still gain valuable information before any decisions are made.

I appreciate you sharing. 

Kathy

Add Reply

Post
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×
Link copied to your clipboard.
×