Grandaughters Having Surgery

I am glad that your granddaughters’ doctor found the polyps early. I was diagnosed with FAP and had surgery when I was 35, so I cannot relate well to some of the issues an 11 year old will need to deal with for this surgery. Since this is a hereditary condition, other blood relatives should be tested for FAP. I had a DNA test for this disease run at Mayo Clinic and my two sisters and two daughters were tested and found free of this condition. I suggest that your granddaughters have a surgeon who is well experienced in this procedure and has a good track record. Cleveland Clinic comes to mind as a highly rated place for jpouch surgery. A surgeon who has experience with pediatric patients would be a plus.

They will need to follow the surgeon’s recommendations carefully regarding diet and physical activities and be patient while they adjust to their new pouches. Afterwards, they will need regular scope exams to determine if any more polyps have developed. I wish you all the best of luck with the surgery.
Bill

Wow, what a lot for your family to deal with, my heart goes out to you. My 16 year old son just had j pouch surgery at Cincinnati Children's Hospital. I can't say enough about how great the GI/colo/rectal team is here. I would say just make sure you go to good drs., seems like a major enough decision that a second opinion would be worthwhile. My son had his colectomy in March, the j pouch surgery in June, and the take down surgery a few days ago. Your grandaughters would have ostomy bags for at least a few months. My son went to school with his, but I think the comfort level with would depend on the child. Best of luck to you!

Thank you both so much! We are taking them to Riley's Children's Hospital in Indianapolis. I keep looking for the rainbow in the storm and pray that once we make it through the year, their lives will return to some sort of normalcy. Their dad was an only child and his mom passed away at 29 of FAP. The grandfather also passed away from FAP so it is very prevalent in their family. The girls were identical twins so we knew if one had the gene the other would, and unfortunately that was the case.

Christine, how long was your son in the hospital and out of school? I know this could vary but I thought at least we could have an idea.

Thank you again for your input. I am just at a loss for what to expect.

Sandy

Hi Sandy,
The majority of school that my son missed was due to the ulcerative colitis, which was the reason for the j pouch surgery. His surgery was done in three stages, it is usually done with either two or three surgeries. His first stay in hospital was 8 days, second 7 days, third six days. I think length of hospital varies based on how quickly bowel start functioning again. He was able to return to school pretty quickly afterwards. I would be happy to talk to you by phone or email, to give you more detailed info. if it would help. Cincinnati Children's hospital was great, and I think is one of the top three pediatric hospitals in the US for this stuff. I would imagine Indianapolis has a great hospital, but just make sure you have a surgeon that is experienced with this procedure. If it is not done correctly, you can have incontinence issues, etc. Big hugs to you, your daughter, and grand daughters what an incredibly tough year.

There are several groups on Facebook for parents of kids with J-pouches that are very helpful. Although most of the kids have IBD, there are quite a few with other conditions that have necessitated a colectomy.

Many of the parents are avid researchers, so there is a wealth of information that they are happy to share.

Best wishes for very successful surgeries and some wonderful teen-age years to come!

My son had j pouch when he was 9, after drastic UC struggles.  They predict one week in the hospital, but my son had postop complications, and stayed 3 weeks.  Doing great now tho.  If the children are otherwise healthy, they can probably do the pouch with 2 surgeries, with them having a colostomy bag in between.  While the bag is a bit of a hassle, it's better than UC, but you have to stay on it, keep it clean, keep it emptied, etc.  My son was very sick after his bout with UC, so needed 3 surgeries.

 

If healthy and all goes well, one week in the hospital and one week at home, then think about easing back into a schedule, if everything goes by the book.  However, with 2 of them, it will depend on how much help you have, and their own attitudes.  I would plan for at least 3 weeks out, and in the summer, if possible.  Some home schooling and/or home tutoring could help with the transition, if allowed.

 

He is a normal boy now, playing soccer and tennis and video games, teasing his sister, etc.  Takes immodium and iron.

 

We were at Riley, with Dr. Rescorla.  Billmire also did one of the followups, probably saved his life.  They are GREAT at Riley.

 

Best of luck.

My 18 year old son had J pouch surgery for FAP in January.  He had thousands of polyps.   He lost  his colon and all of his rectum. He currently has an ileostomy, which at the time of surgery we were devastated about.  He has done well with it.  I was told before the surgery to ensure that the ostomy is placed in the correct location.  That meant nothing to me, and we did not think he was going to have one.  His ileostomy is placed right where his body bends.  This causes the actual bag to bend and causes leaks. On dates. Kids move and bend more than adults. Make them measure your kids.  

My son has had no problems with pain. He was in the hospital for 11 days because his new plumbing was a little confused. He's looking forward to getting rid of the ostomy.  He misses hiding out in the bathroom during dishes time.  

The problem with measuring kids is that they are still growing.  An 18 year old male is not necessarily done growing. An 18 year old girl more likely so.  With younger kids it is clearly a crapshoot.  I had leakages with my ileostomy and I kind of think it was because my skin didn't take very well to it.  I had all kinds of trouble getting a seal.  My ileostomy was temporary and I was told repeatedly by the nurses it is a whole different ball game with the permanent ileostomy instead of the loop.  I don't know and hope I never have to find out.