UOAA Discussion Board

I'm not sure if anyone can help but here is my situation. My son has total colon hirschsprung's disease.

Jordan is almost 7. His transition point is about 10 cm in on his small intestine. He had an ileostomy at birth and was pulled thru at 4 months of age. For the next 2 years he was sick, sick, sick with bowel infections and eventually was not able to pass any stool on his own and we ended up doing the red rubber cath up the butt thing a couple of times a day to drain off the stool and gas. After 6 months of this we decided to go back to the ileostomy.



From then on he has done MUCH better from a gut stand point with the exception of a couple of complications, his stoma stenosed and he went septic on us. The other big issue is that he was left with a mucous fistula because of his anal sphincter being so tight that it would not drain. We have had the fistula re-opened surgically 5 times in the past 4 years. We went for motility testing with Dr. Hyman and found his motility is fine. Dr. Hyman suggested we not try to do another pull thru until Jordan is 12 or 13 and ready to take on the challenge of being bowel trained.



Jordan’s surgeon is now telling us that it is time to do the pull thru or remove the rest of the bowel and make his ileostomy permanent. I should note that Jordan is not in favor of having a pull thru at this time.



Con’s for re-connecting him (doing another pull through)

· He doesn’t want it

· He is less likely to be able to bowel train if he isn’t a willing participant in the surgery

· What if it doesn’t work…like last time

· If we do the surgery and he gets an infection, like c-dif, it could be very bad…like the last time he had it and was in the ICU for 5 days

· What kind of psychological issues will he have if he has to have a catheter put up his butt every day to poop

· What kind of psychological issues will he have if he has to have bio feedback to learn to poop

· What if his sphincter is still too tight and they want to snip it and he isn’t able to be continent after that

· If it doesn’t work we are looking at yet another surgery to re-do the ileostomy



Con’s for getting rid of the fistula

· This ends any chance of ever having a pull through

· When they remove the fistula and snip the sphincter to allow drainage of any mucous that accumulates they will be working in the area of 2 of the major nerves to the penis. About 5-10% of boys/men who have this done will end up with some form of erectile dysfunction.

· What kind of psychological issues will come up later if he can’t choose to have a pull through when’s he’s older

· What kind of psychological issues will he have if he ends up with erectile dysfunction



As you can tell I’ve spent a lot of time thinking about this! Unfortunately I am no closer to a decision. The doc’s at children’s want to do one surgery or the other after school is out for the summer. Any advise you can give would be helpful.

thanks for your time
Shari

Shari
That's a lot to think about.

My question is why did the surgeon move up the surgery time by 5 years?

As far as advice; I would get a second opinion. Even if you really trust the doctor you are currently with , a second opinion might give you a new perspective.

One more thing; Having children, one who needed major surgery (but not body altering) my concern would be...

at 7 years old does he really understand the importance of his decision of not wanting the pull through? Probably not.
but if he is doing well with his ileostomy , dealing with something he knows vs. something new may be what he wants.

There are other sites that may offer parent advice concerning this very topic.
Also try www. jpouch.org. There is a discussion board for parents/ family.

Good luck with your decision. I hope your son does well.

Thanks for your thoughts.

I agree that at 7 he can't really grasp the full effect of the decision he would make. That's why I want to put off the decision until he can have a better understanding. Having said that, he is a very mature and thoughtful and insightful 7 year old. Kids who go through as much as he has tend to have be more mature in certain areas because of their experiences.

Funny story, we go to Children's Hospital in Seattle (a teaching hospital) so we see interns and residents and fellows as well as attendings. One clinic visit an intern was sent in to collect some basic information before the attending came in to see us. The intern asked Jordan to take off his shirt so he could see his tummy. Jordan went on to explain HD, ostomies, fistula's, g-tubes and port-a-caths, all of which he had at the time. The intern looked at me in amazement and asked "how many years of medical school has this kid had?". I told him he was 5 so...about 5 years!

Shari,
I'm Karly, I'm almsot 15 and I had a colostomy and then my Pul-Thru done when I was a baby. Fortunately everything worked well for me. We did rectal enema's every night until I was 6 and went to a different doctor. He told me that I had enough control that I should be able to go "on my own" I then started the hastle of senicot, fiber choice, prunes/prune juice, benifiber; all the things to keep me going, but keep it from getting too hard or too soft. It worked pretty well until I was 12, almost 13 and we ended up having no choice but to go back to rectal enema's. Take my word I HATED IT! My parents always knew that things could get messed up with our rutien of senicot at any time. But they didn't want to make any derastic choices for me until I was old enough to decide what I wanted and knew I'd have to live with. When everything started messing up I was in Jr. High in the 7th grade and I DID NOT want to have to continue doing rectal enemas. SO I decided that it was time, and would be best for ME to do an ACE Malone / apendicostomy. As I said I'm almost 15, and in February I will have been using my Malone for 2 years. My family is also big with the Pul-Thru network, actually my mom is a PTN Board member. You may have already checked it out but go to http://www.pullthrunetwork.org/ It's a great site for people w/ or childeren w/ Pul-Thru's I think you'd find it quite helpful.
My main points are 1) if you can wait a while longer until your son is a little older and can be sure he knows what he wants. I'm not quite sure why your doctor would move the surgery up 5 years, because all of us kids who have gone through it all have had "x amount of years of our lives as 'attending' medical school" but I don't think we totally know what we're putting ourselves into at the younger age. Yes we know so much more than most kids our age, but it's still hard to look into the future at age 7.
2) I would suggest either a) getting the second oppion on having the surgery now or b) at least check out ptn's site and see what others who may have had the same sittuation have to say.
Hope this helps, and keep us posted on Jordan, you are all in my prayers. and happy holidays

Karly
Thank you so much for your input and insight! I would like to hold off the decision if there is anyway we can. You seem like a very well adjusted and thoughtful girl. I love what you said about the years of medical school! It is so true! At this point we have come up with a routine of putting a cath into Jordan's mucous fistula every night to keep it open and that it working for now so we will keep up with that as long as it works and hope to buy a few more years before we have to decide anything.

I will keep you posted and thanks again for your thoughts!
Shari

Shari,
No problem. I'm glad to hear you have found something that has been working. That's part of the "game of life" with us kids, trial and error until you find something that works until the next bump.
I'd be more than happy to help in any way I can, and if you have any questions or need suggestions just let me know. Feel free to pm me anytime, i love to try to help. That's what we are all here for.
have a merry christmas.
♥Karly

Karly,

Thanks for "stepping up to the plate" and responding to Shari. There's nothing like personal experience, and you responded in a way I couldn't.

Happy New Year !