Short gut and diarrhea

[TestifyToLove]

Anybody know, CAN you fix the constant diarrhea????

M's Liver Transplant team wants him to see a regular GI before they see him again for his liver issues. They want someone to address his constant diarrhea. However, the CF GI reviewed his chart last week and said we're probably always stuck with the diarrhea. Said M has the perfect trifecta (if you can call it that). First, he had meconium illeus, and those children typically ALWAYS struggle even if nothing else ever occurs. Second, they removed MORE of his bowel, both large and small later. And, the final nail in the coffin is that the incompotent idiots cost M his illeoccecal valve. The CF specialist who is a GI and the retiring head of the CF clinic says we will always struggle with this and it will never really get better.

So, why are we going to waste our time to see a regular Ped GI who is not familiar with CF to see if they can fix this?

We just finally got M's medical records from his meconium illeus surgery (and the 78 day hospitalization surrounding that) and he was officially diagnosed with Short Gut Syndrome before he ever left the hospital.

I'm just wondering why we're supposed to see a GI not familiar with CF specific issues when everything seems to indicate the child is simply doomed to always have diarrhea.

Are we wasting our time? Should I suck up and take him to a doctor I think will be a total waste of time, or should I call the Liver Team back and explain the new information that we've confirmed the Short Gut diagnosis now and the CF GI reviewed his chart last week and said forget it, never going to happen?

[mekat]

I would personally see if I could get him into a doctor who specializes in Short Gut Sydrome cases. If you can't then I probably wouldn't pursue it because it doesn't sound like a reg ped GI can handle that complicated of a case. Just my opinion but I will add that I don't have experience with SGS. I hope you find something that works.

[odentonmom]

My DS has Hirschsprung's Disease and it is the same way, you can only deal with people who really know about it otherwise you are just wasting your time. We traveled to Dr. Marc Levitt at Cincinnati Children's Hospital back in February for an operation because they have the first and only pediatric colorectal center in the world.

Dr. Levitt is great and he responds to emails very quickly, even from parents of kids who are not yet patients of his. You could email him with some of the details and seek his opinion. Some people he can give simple answers, others he will ask you to send more information and come to see him. He is truly a wonderful person. Here is a link (http://www.cincinnatichildrens.org/svc/find-professional/l/marc-levitt.htm)to his bio.

In addition to surgery, they also work with parents on bowel management. One thing they often recommend to thicken stool is pectin, maybe something like that might be helpful to try. If you want more information about that, PM me.

Also, I am a member or the The Hirschsprung's & Motility Disorders Support Network. HMDSN is an organization for people whose kids suffer from various motility disorders such as Hirschsprung's Disease, Neuronal Intestinal Dysplasia, Intestinal Pseudo-Obstruction, Short Bowel Syndrome, and the like. There are many parents with kids who suffer with chronic diarrhea on the group. Here is the link (http://health.groups.yahoo.com/group/Hirschsprungs_Support_Network/?yguid=136560794)to the group. They are a great source of support and information. That is where I found out about Dr. Levitt.

[katedanzer]

:hugs:

You can't fix it, but you can make it a whole lot more manageable. Before we started going to Mayo, E was pooping 20+ times a day. Just water squirting out his rectum basically all day long. :(

I had a GI in the cities that had the "there's nothing more that we can do, he HAS to be on TPN". Well, I just wouldn't take that as our end-point. I pushed (maybe a little too much as his old GI will no longer even return our calls) anyways side point but I got a second opinion down at Mayo. Best decision EVER in E's medical care.

Our first visit down there E has a stool culture had a +3 for reducing substances, meaning he wasn't absorbing fat/pro AND cho in his stool. Basically he was absorbing nothing. They changed a lot, but I think the biggest change was adding in lomotil and prophylactic antibiotics. We noticed a HUGE change in his stooling pattern over then next month. We're now down to 4-6 loose (not watery anymore :yay: ) stools on a good day. His backside has finally started to look somewhat normal again. During all his dumping, he developed pressure sores along his cocyx from the acidity and pressure of the diaper next to raw skin :cry:
Anyways, just wanted to send some :hugs: and let you know to keep pushing for more options. Do as much research as you can, I was the one who pushed to get E on the antibiotics when his GI up in the cities said it wouldn't make a difference.