Paul Fletcher

Hi! I have a son Paul who is now 8 years old and has Long Segment HD. Paul had his entire colon removed at age 3. He is a normal and active 8 year old with really impressive scars on his tummy! Paul will always have loose stools because he has no colon to pull water out of it but he is totally continent with the occasional stain when he passes wind and it is just that a small stain.

Well for a kid with that had a colon that didn't work at all we were able to keep Paul moving for 2 years. The doctors said we could do what ever it took since being dependant on laxatives was not an issue since they were going to remove his whole colon anyway. The doctors said to keep him unclogged as long as possible so Paul could get some weight on him. At this point Paul was 85% tube fed because of his small stomach. Paul only ever had a NG tube. We got VERY good at giving Paul just enough mineral oil to clean him out but not cause him to blow out.

When Paul was 2 months short of 2 yrs old, 9th June 1992, he developed an intestinal blockage I could not move. I had my magic window of 3 days. If I could not get him to pass stool in 3 days I was off to the doctors and that was how we caught the blockage. The doctor listened to his belly and could hear a "tinkling" noise you only hear with a serious blockage. So off to Johns Hopkins ER we went. They didn't like the way Paul was and so called in Paul's Peds Surgeon. (From a wedding no less!) He wasn't happy either so off to surgery went Paul to get cleaned out and get his ileostomy. This did not surprise us as we knew this was the course of things with Paul’s HD. It was not if but when. So the next day Paul was MUCH better and took his bag in stride.

Dr Buck said Paul would have the ileostomy for a year to give his colon a chance to calm down and then he would do the pull thru surgery. In the mean time we had "Mom & Paul’s Not-So-Excellent Adventures" with the ileostomy. Let me tell you trying to keep an ostomy bag on a very active 2 year old took an act of god/lots of tape/onesies underwear/and rubber bands. Plus a quick eye for the tell tale green/yellow stain on his clothes.

We didn't have any regular help from an ostomy nurse so we had to wing it on our own. Once when Paul's 2nd (Blind) Stoma started to prolapse out we called Dr. Buck's office and said what do we do it's hanging' out about 3 inches! We called it "Jabba-the Hut"! Paul even called it that!

His nurse bless her heart said oh it's okay it will do that but get back to us when it's down to his knees!! LOL!! Hey if you can't laugh once in a while you'll only cry! Needless to say "Jabba" never hung out that long!

Paul had his pull thru done at Johns Hopkins in June of 1993 and his ostomy was reversed in July of 1993.

We have had no trouble with any GI bugs in fact Paul hardly ever gets sick. Maybe an occasional mild cold but that's it. We do get him a flu shot every year and I worry about chicken pox and diarrhoea. Paul can be prone to dehydration if he gets any GI Bug since he has no colon.

He has gone to sleep away camp the last 2 summers. We just explain to the camp nurse about Paul.

I'm rather embarrassed to say if it weren't for the huge scars on his stomach you would not know about his plumbing problems. We kind of feel that stuff did not go wrong with Paul because we were too dumb to know any better? We still don't know anybody personally in our area who has any of Paul's problems. But Paul is a rare egg because of his stomach. Apparently there are only about 60 people world wide with this birth defect. We did what our personal research and gut instincts told us to do. Ah well ignorance is bliss!!

Right now Paul and I are active in March-Of-Dimes here in Maryland. He is the Carroll County Youth Ambassador for M-O-D. I figure if anybody should volunteer we should. Because as luck would have it we have paid virtually nothing for Paul's care. We have very good health insurance and when Paul was born in the U.K. we were able to use the National Health Service and they covered 100% of 3 continuous months of hospitalisation for Paul and His surgeries. When we came back to the US when Paul was 3 months old the insurance Co HAD to accept Paul as part of the terms of them being contract to the federal govt benefits.

So I thank my lucky stars everyday and say a thank you to god everyday that Paul's illness has not bankrupted us and it could have easily.

Paul could be wheezing away like it was his last breath and he'd be trying to run around and play! If Paul would have HD problems, we'd fix it and he would be up and running again.

I tell every one it was like owning a used car! We'd have him in the shop all the time!

Paul has problems putting on weight but he is growing slowly but surely. We had the diaper rash problems after his surgery but at 3 yrs old we worked hard at getting him potty trained and out of the diaper as soon as possible. This helped alot but since your baby is so young yet I'm afraid you'll have to fight the good fight. I was told by the surgeons nurse that the skin on Paul's bottom will toughen up to stand the caustic stool he has and it is true. Paul's is very caustic since it is coming straight out of his small intestine.

Paul is in 3rd grade and has no learning or development problems. When he was young he took speech therapy due to the fact Paul never took a bottle as a baby (oral lessons) and his wheezing all the time made it hard for him to hear (lots of noise!) His speech was delayed and slurred. But he is fine and we expect him to grow up to a normal adult even if he is skinny!

So other than that Mrs. Lincoln...How did you like the play?

I'd be glad to share again if you'd like. It's nice to talk to people who understand what I'm talking about and don't Mind Poop stories!! Oh boy do I have Poop stories!