12-year old son - decision on colectomy & j-pouch

There are no easy answers and of course each presentation of UC is unique. For the parents of UC kids, how did you come to the j-pouch decision? 

Our 12-year old son was diagnosed 2-yrs ago with UC and we've confirmed the diagnosis through multiple colonoscopies, endoscopies, biopsies and Prometheus blood test.

  • We've been unsuccessful with Asacol, Colozal, Mesalamine, 6-MP (liver toxicity), Remicade and Entyvio plus various diets, supplements, probiotics like VSL#3, etc.
  • Prednisone alone is not controlling my son's current flare which landed him back in the hospital in January.
  • Currently, a cocktail of 40mg Prednisone + Vancomycin + Mesalamine enema is holding symptoms at bay but it's not a sustainable solution.
  • Our Pediatric GIs recommend we start preparing for colectomy. We've met w/ Dr. Kane (CNMC), Dr. Remzi (NYU) and tomorrow, Dr. Mattei (CHOP) to discuss 3-part j-pouch surgery. Dr. Remzi was very optimistic about our son's prognosis post-surgery.
  • Dr. Baldassano, GI at CHOP recommends we try a 4th & 5th Entyvio infusion, and if it fails, then Stalera or Xeljanz, both biologics. I believe Xeljanz was just FDA-approved last month but only for adults w/ UC not kids.

We have lots of experts weighing in and are at a crossroads where we need to decide our next move to get him off of steroids: either (1) colectomy, (2) Enyvio / Xeljanz / Stelara trial or (3) something totally experimental like FMT.

My son, an emotionally mature 'old soul', has missed nearly three months of school and is fed up with his quality of life. He feels ready to have the colectomy even though he doesn't yet fully know what to expect with an ostomy, stoma care and recovery from surgery.

My husband and I are trying to understand the risk profiles of more drugs vs colectomy to give our 12-year old the best chance of having decades of healthy living ahead of him. 

Original Post

Wow!  What a nightmare.  I completely understand.  My son was diagnosed at age 6 with UC.  He was 23 when he had his colonectomy.  Prednisone is not a great medication for young kids.  It can stunt growth, as I am  Sure you know.  It’s great that you have seen all these specialists.  Are you from NJ?  We live outside of Princeton.  You need to do what is best for your son.  I’m not a big fan of the biologics for kids.  I think they are too new and not well researched.  Just my opinion, not based on any fact.  Having a colonectomy does present difficulties.  And you are correct, your son is too young to fully grasp all the problems there.  My son had better quality of life before the colonectomy.  He has had a boatload of issues since having it.  I think you need to follow your heart and gut.  Find a doctor that you completely trust and go with that.  There are risks to all.  Good luck!  And hugs to your son.

 

dianne

Hi CureJLB.

You're right that there is no easy answer for the decision in your son's treatment. I watched as my mom tried to make agonizing decisions on what to do with my treatment.

I was slightly older than your son when I had my colectomy. I was diagnosed with UC at 13 and had my colectomy at 15 nearly 13 years ago. Remicade had just come out on the market in that time. I had of course tried it, but it failed. There weren't very many options for treatment like there are now, so surgery to remove my colon was basically the only option that my mom had come to. I, myself, didn't want the surgery at first, but there was nothing able to control the bleeding, so I had my colectomy on emergency. I had a 3 step surgery for my j-pouch.

Looking back, I actually had a great quality of life. I was pain free, and I was off all medications. Though, at first the ileostomy was a little hard to handle at first, I soon got used to it. I could eat whatever I wanted. I was healthy for the first time in months. Though, what really helped me was that my mom was with me every step of the way. She was with me for every bag change. She was my rock at the time, and she made the experience so positive. All she wanted to see was that I was healthy, and the surgery just did that. In turn, I was able to accept the ileostomy much better. It saved my life.

I know there is still a long road ahead for you and your son. There are still many tough decisions that you will need to make, but know that your son looks to you for guidance. Whatever decisions you make will be for your son's best interest. If you have any questions, please do not hesitate to contact me.

-Rina

Jeffsmom posted:

Wow!  What a nightmare.  I completely understand.  My son was diagnosed at age 6 with UC.  He was 23 when he had his colonectomy.  Prednisone is not a great medication for young kids.  It can stunt growth, as I am  Sure you know.  It’s great that you have seen all these specialists.  Are you from NJ?  We live outside of Princeton.  You need to do what is best for your son.  I’m not a big fan of the biologics for kids.  I think they are too new and not well researched.  Just my opinion, not based on any fact.  Having a colonectomy does present difficulties.  And you are correct, your son is too young to fully grasp all the problems there.  My son had better quality of life before the colonectomy.  He has had a boatload of issues since having it.  I think you need to follow your heart and gut.  Find a doctor that you completely trust and go with that.  There are risks to all.  Good luck!  And hugs to your son.

 

dianne

Thanks, Dianne. It's so helpful to hear about others' experiences and reassuring to know that others have grappled with the same difficult decisions with steroids, biologics and surgery. We are located in the Washington-DC area. A couple of questions for you:

  • Who did your son's surgery? Would you make the same decision again knowing what you know now?
  • Did you consider doing FMT or anything similar as a last resort?

Thanks again!

RinaJP posted:

Hi CureJLB.

You're right that there is no easy answer for the decision in your son's treatment. I watched as my mom tried to make agonizing decisions on what to do with my treatment.

I was slightly older than your son when I had my colectomy. I was diagnosed with UC at 13 and had my colectomy at 15 nearly 13 years ago. Remicade had just come out on the market in that time. I had of course tried it, but it failed. There weren't very many options for treatment like there are now, so surgery to remove my colon was basically the only option that my mom had come to. I, myself, didn't want the surgery at first, but there was nothing able to control the bleeding, so I had my colectomy on emergency. I had a 3 step surgery for my j-pouch.

Looking back, I actually had a great quality of life. I was pain free, and I was off all medications. Though, at first the ileostomy was a little hard to handle at first, I soon got used to it. I could eat whatever I wanted. I was healthy for the first time in months. Though, what really helped me was that my mom was with me every step of the way. She was with me for every bag change. She was my rock at the time, and she made the experience so positive. All she wanted to see was that I was healthy, and the surgery just did that. In turn, I was able to accept the ileostomy much better. It saved my life.

I know there is still a long road ahead for you and your son. There are still many tough decisions that you will need to make, but know that your son looks to you for guidance. Whatever decisions you make will be for your son's best interest. If you have any questions, please do not hesitate to contact me.

-Rina

Thanks so much for your insights, Rina. I'm hoping that as we go on this journey, I'll be able to support my son the way your mom supported you. In fact, I'd love to chat with you and your mom if possible to learn from your family's experience.

Can you please share a little more info?

  • At 15, how much did you understand about the surgery and ostomy before going through the process? I want us to go into this with eyes wide open and realistic expectations. While my son is emotionally mature, is there a point where there's just too much info?
  • How long did you have your bag before having the step 2 surgery? 
  • What, if any, complications have you experienced since having the J-pouch?

What I'm finding so far is that my son is eager for surgery but not as eager to learn about what happens with an ostomy bag and aftercare. We've started watching youtube videos together and following ostomy instagram accounts to make this experience as relatable as possible. What a journey! 

Hi CureJLB. Here are my answers to your questions:

At 15, how much did you understand about the surgery and ostomy before going through the process? I want us to go into this with eyes wide open and realistic expectations. While my son is emotionally mature, is there a point where there's just too much info?

I understood very little about what living with an ostomy would be like. They give you pamphlets and stuff to try to explain what life would be like, but actually doing the the emptying, changing of the bag, and showering is such a surreal experience. It's so nerve-wrecking the first few times you change the bag because you're afraid that the bag won't stick, or you're sticking on the bag completely wrong. Yes it's an absolute nuisance needing to change the bag every few days, and it may be uncomfortable to wear, but he will be pain free when he is able to eat. There will absolutely be days where he may regret the decision to have the bag, but you have to remind him that he is healthy and not in the hospital.

There is never too much information because this will be his reality. I kind of wish in my days there were youtube videos to make me more prepared for the ileostomy because then it wouldn't have been such a shock for me. Though, watching videos and actually being the person having the ileostomy are two completely experiences, but it still is quite helpful to be prepared mentally.

How long did you have your bag before having the step 2 surgery? 

I had the end ileostomy for 3 months, and the loop ileostomy for 3 months before my close-out surgery. The three months before the second surgery are extremely critical because the body has to be strong for the second surgery. I'm Chinese, so my mom would buy a fresh chicken and literally drip the chicken juice out of the chicken through some sort of steaming technique. My mom calls it the "chicken essence" as it was pure protein. In addition to all the food I ate, I also drank that every day. You don't have to go to that extreme, but your son will have to build up some strength from the first surgery. 

What, if any, complications have you experienced since having the J-pouch?

I was one of the luckier ones that didn't have any complications after the transition to my j-pouch. I also had one of the top surgeons in LA do my surgery as well. Though, I do leak pretty much every night, during the day I have no problems. Everyone is different. You can probably read on the forums some of the complications other people have had. Though, I have landed in the hospital 13 years later only to be diagnosed with Crohn's and will be having my j-pouch removed due to a stricture near my pouch. There is no telling what the future will hold. I thought I was done being sick, but my body had other plans. Perhaps your son will be lucky and will have his pouch for decades to come. Though, you also have to prepare yourself that there is always a chance that the j-pouch will not work and he will have a permanent ileostomy for the rest of his life. Since your son is still young, I would encourage him to try the j-pouch. Yes, it will be another big surgery to remove the j-pouch then, but I don't want any of you to regret not trying. I had 13 great healthy years with the pouch.

Though my time is up with the j-pouch, I hope I can help people like you and your son to lessen your fears about the surgery. There are so many "what ifs" at this stage that everything can be overwhelming. If you do decide to do the surgery, don't look back. Remember that your son's health is what's important. Also, give yourself time to grieve and process the events so that you can help your son better. Even after the j-pouch surgeries is finished, the journey still continues. My mom is with me at the hospital as I await my surgery to go back to the permanent ileostomy. I will ask to see if she would like to join our chat. I currently live in Japan, but I think I can set up a time to talk. Please PM your contact details.

-Rina

Cure, my son was 23, had his surgery in June, 2014.  The doctor was at Robert Wood Johnson Medical school in New Brunswick, NJ.  He is now in VA.  I would make the same decision because Jeffrey was full of pre-cancer polyps and they will quickly turn to cancer is we did nothing.  At the time,  biologics were not an option.  However, we are looking into them now.  I’m not sure how I feel about the. Because some of them are so new and I do not feel are adequately researched.  Just my opinion.  Jeffreynis now being treated at Weill Cornell in NYC. He as a great team of doctors that I would highly recommend, but you have great people in the DC area as well.  When Jeffrey had his first Ostomy, he did not hand,e it well at all.  He also has Aspergers so that is an additional issue, so that’s why he did not handle the Ostomy well.  He had his take down surgery in September.  His surgery was done in 2 steps.  And then the complications began. It’s a long involved situation.  But he is just about ready to go to a permanent Ostomy because of so issues he is having.  But living with the Ostomy is not so horrible.  So many young kids do very well because they are healthy for the first time in a long time.  A lot has to do with how you handle it.  It you embrace it, live by the saying, it could always be worse, and Your can do anything you want to do in life, he would be fine.  If you cry about it, make him feel Ike he is different, and look at it as the world is coming to an end, then he will not do well.  Attitude is so important. But don’t make him feel like he is different.  He is not.  Everyone has something.  Keep it all positive.  And always find the silver lining, no matter how bad the day is!  Good luck to all of you!  If you want any more information, just let me know!

dianne

Hi, January 2017 at age 8 my daughter had a colectomy due to her UC. Which would be part one of her 3 part j pouch surgery. She diagnosed with UC when she was 5. We went through all the meds, steriods, remicade, humira etc. all worked for periods of time. A few months before surgery her symptoms worsened and we started looking into entyvio. Unfortunately her symptoms came on fast and we ended up in the hospital for 4 weeks. After 4 weeks of trying to get her symptoms under control our doctors started the surgery discussion. At first we could t believe what we were hearing but we soon realized it was the right choice. We didn’t want her in pain anymore and we didn’t want to experiment either. The original plan was to do a partial colectomy because only the  lower section of her colon was inflamed but during surgery they couldn’t make the remaking colon reach her rector so they ended up taking it all out. After surgery she had a ileostomy, the “bag” was very scary at first but she got used to it. The stealth belt helped a lot with feeling normal. Her next surgery was 4 months later were they reattached her small intestine, created a j pouch and new rectum. She still had her bag. Her ileostomy was now a loop ostomy. 4 months later she had her final “take down” surgery. The removed her bag. It’ll be a year in August since her last surgery and she is doing great. She goes to the bathroom 2 or 3 times a day. Which is much less than we thought. She’s had pouchitis once in the winter but that cleared up in a few days with some Cipro. We are very happy with the her j pouch. She living a very normal life now. We are happy we didn’t not try more meds. They just never worked for very long. Having a colectomy of course sounds scary and extreme but you can live without it and have a very normal life.

we were treated at Mt Sinia nyc Children’s hospital by dr Marla Dubinsky and her surgeon was dr Sergey khaitov. They saved my daughters life and gave her life back to her. 

I hope  all works out for you and you son.

Thanks, Caroline's Dad. That must have been a scary experience with the extended hospitalization, emergency surgery and the unexpected change in plan with surgery. I'm encouraged that she adapted so well to the "bag" and that her output is 2-3x/day. That's one thing that worries my son -- the post surgery frequency seems so high based on the information we've heard so far. 

With your surgeons, were there discussions about whether to preserve the rectal cuff? That seems to be the biggest difference between pediatric and adult j-pouch surgery (keep it vs remove it) and I don't understand what drives the decision.

Hi, I am new to this blog and so glad to have found it!  My 17 year old son is having his colon removed this week.  He will have the 3-part surgeries starting with the colectomy and ostomy bag.  He was diagnosed April 16th after a colonoscopy and put in the hospital on April 18th which is where he remains until surgery.  This was his 1st flare.  We were hoping the different meds would put him into remission with no avail.  He has been on steroids, Remicade (3 doses), Prograf and Cyclosporine.  Because of his age, he was limited to the drug choices.  However, as parents, we pushed for additional opinions from the adult doctors since he is months away from being an adult.  He also had a CMV infection which he was treated for during this hospital stay.  He is looking forward to the surgery.  I appreciate all of the feedback to this post.  It has helped us with our decision and gives us insight to possible future concerns.

Our doctors recommending removing the rectum as well. From what I remember from our numerous discussions was that the existing rectum could develop UC as well. Believe me, my wife and i wanted to preserve every bit of her as we could but ultimately we had faith in our surgeon and GI Dr and we took their advice. 

In the end we're glad we did, although I'm told Chrone's can develop in UC patience, it is very rare, so removing her colon and the rectum, even as barbaric as that sounds, has given us a some piece of mind.

Regarding the frequency, I've read online the scary stories that after surgery, frequency can be up to 15 times a day. That has not been the case at all for my daughter. 2 or 3 times at most. This maybe a kid thing or individual thing, not sure.  She also doesn't need to run to bathroom. She can hold it and wait until she has an opportunity to go to the bathroom.  We let her eat anything she wants but if we notice her having some issues we'll try to limit some things. The only thing she really doesn't eat right now is popcorn as it causes some diahrea. She's not a big adventurous eater to begin with so food overall hasn't been an issue. If we notice an increase in her frequency or other issues like diahrea, we'll start a round of Cirpo which usually clears things up quickly. She's also takes a daily pro-biotic.  that's it, no more meds!

Immediately after her 1st surgery, my wife and i basically took care of her bag and changed it often. She took care of emptying it and keeping an eye on it. It can fill up with gas, like a balloon. This was a problem overnight, so we just got used many leaks and waking up in the middle of the night to change it. She did have issues with the bag sticking not so well. We tried everyone on the planet, you can get samples from all the suppliers. We settled on the Coloplast Sensura Mio 1 pc drainable pouch. She liked it the best because it sits very close to the body and it's not a clear bag, she didn't like those clear bags. However, her skin did not cooperate, she had lots of rashes from the adhesive on the bags. her skin was very raw and red throughout the time she had the bag. We dealt with it as best we could with lots of different topical creams. After the second surgery, things were a bit worse because the loop ostomy is a bit more recessed and leaking is more of a problem, but by this time we were pros on changing the bag. 

Finally after her final surgery (take down) we had a few tough months. the first issue was that for some reason, they don;t sew up the wound where her stoma was, they basically leave it open to avoid infection. this meant she had a rather large crater in her belly that needed to be cleaned daily and protected. we weren't expecting this so it was a bit of a surprise and she was very worried about it. it took about 3 months for it to close. 

Another issue she had for about 4 months was butt burn. the poop is very acidic as it doesn't have a colon to travel through anymore. this can cause a burning sensation. Lots of creams seem to work best until the skin toughens up. 

The last issue was that she was very low on iron, so we had to get two infusions to get that back up. 

All said and down it was about 4 months after surgery before she really started to thrive again. Not we are almost one year out and she is like she was before she was diagnosed and having symptoms. 

sorry if this was long but when we were going though all this i found great solace in reading about other peoples stories and it can be tough to find pediatric stories sometimes.

 

I hope everything works out.

thanks

 

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