I'm not sure if this is the right place to post this or not. I've talked some about my son on here lately and the things he has been through. Most recently and punctured pouch that was no good to start with and an emergency illeostomy operation.
Anyway, the doc's weren't planning on re-doing his pull through till next summer, but we've been having sooooo much trouble with the mucus fistula. It leaks so bad! It doesn't matter what we try to bandage it with you can bet if we're trying to go somewhere he looks like he has peed his pants by the time we get there. This is so danged frustrating!

Well they do'nt want to just staple off the fistula because he also has a terrible stricture, so their afraid it will burst inside of him if they try that. The plan is to go ahead and do the pull through, but keep an illeo on him for a while. I just don't know how I feel about this. We had so much trouble with the first pouch and the operation to make a second pouch just seems horrible!!!!! But on the other hand I have a 13 year old boy that wants to poop out of his butt and not in some bag that hangs off of his stomach (those we're his words). This is just killing me. We have to get rid of the fistula or he won't make it through a day at school, but this whole thing really sucks. His operation is scheduled for Aug 2. We do have a consult with his doc on July 13. This is all just so bad. I just wish there we're something else we could do.

It's easy to be on the outside looking in. To me the logical solution is to go ahead with the pouch redo. But, of course, you and your son are the ones who have deal with the fear of a repeat of the last time around.

The only other option is to get a second opinion outside of this surgical group, if possible.

Jan

I agree with Jan that a second opinion is an option that should be on the table. At this stage of things, it would be a good idea to talk to the people that specialize in pouch advancement/redos and fistula repairs. It's important to go to an experienced physician especially when your situation is more specialized.

A second opinion is a good idea, but I do have faith in the people working on him. He has been with this surgeon for 10 years now. He did his first pouch. He see's Dr. Titelbaum at Mott's childrens hosp. in Ann Arbor. I may have misspelled his name. Dr. Coran and Dr. Hirschel have also been involved in this. I know redoing his pouch is the best choice at this time. I'm just afraid of having all of the same problems all over again and him going to a permanent illeostomy at such a young age. It is my fear. My son on the other had does not seem as afraid as me.

When I had my emergency surgery to remove my colon the surgeon left my rectum in since he didn't know my case and wasn't sure it needed to come out. He left a drainage hole in my stomach that as he said, if he put a small stick in would come out my rectum (lovely thought). Well it would not stop bleeding because I had UC and the rectum was still flaring.

I had to wear another little tiny bag to catch the blood coming out of my stomach (it didn't bleed from the rectum but constantly out of the hole). We were supposed to wait to do my take down until after the school year but we couldn't get the bleeding to stop or the little bag the ET nurse invented to stay on. I would go to school and be sitting in class and look down and have blood all over my tummy. This forced me to have the take down early. So I know how you feel. We didn't have much of a choice though if we couldn't stop or contain the bleeding.

Get the second opinion and talk to your son and listen to him; he knows his body and he knows what he's willing to put up with. And constantly looking and feeling like he's had an accident due to the fistula leaking may not be something he wants to put up with any longer.
Keep us posted on your plans of action.
Take care.

It is good that you have faith in your current physician team. But, it may set your mind at ease that you are doing the right thing or give you another perspective and maybe another game plan by getting someone else involved. You have been loyal to your current team - but when something like this comes up it is not unreasonable to get more input on it and your Dr's should understand that too. You may even want to bring this idea up to your Dr and chances are that he'd be glad to have another set of eyes looking at the situation too.

I wish you the best of luck. It sounds like Aaron is keeping a fairly good attitude through all of this, which is something to be thankful for. He's gone through a lot and that positive attitude will bring him further.

Rick

Aaron's Mom--We had a very similar situation, though it happened only three days after the initial "one-step" surgery, not ten years later. Thomas' first pouch (at age 9) ruptured because high-dose steroids impaired healing, and he was rushed in for an emergency ostomy. It was a mess. Afterward, the mucous fistula was very close to the stoma, and they wanted them "packaged" separately, to avoid the chance of anything heading into the leaking pouch--a practically impossible situation, because there was no room between them for the wafer to seal (and the incision also wouldn't heal), and the fistula leaked constantly. We tried everything--pieces of sanitary napkin taped over it, a tiny pediatric ostomy bag--nothing worked very well. And it STINKS. Fortunately he was in the hospital (very sick from the ongoing infection) for the entire 2.5 months he had it. We were in for 19.5 weeks straight.

Because of the unhealed, leaking pouch, they were forced to do a third surgery to remove it and clean up multiple infection sites. A new pouch was created at that time (with "no significant loss of additional bowel"), the ostomy re-sited to the opposite side, and the mucous fistula sutured inside--what a relief. He lived with the ostomy for a year after that, before going back for the take-down.

All of this was 6-7 years ago. His second pouch has been fine. I can't speak to the stricturing problem your son has had; but if they think that can be managed, it seems a second pouch would have a good chance of being successful.

All has not been smooth sailing for us since then. In the intervening years, he has had gall-bladder surgery at age 11 (open, because adhesions precluded laproscopic), chronic sinusitis, and three sinus surgeries, the most extensive and recent of which was in March. Six weeks ago he had c. diff, and now it may be back. Not sure what that may mean long-term.

I just read your posts on Elise C's thread. (Hadn't gotten into that one, because in her first post it seemed her daughter was older and independent.) Yes, after nine years, medical problems have become both old-hat--and wearing. Every time we think we're "over the hump", something new comes up. Our school district was pretty unhelpful, and I finally gave up trying to get appropriate accommodations. Fortunately Thomas can get by without the school. He took the high school proficiency exam (hopefully passed) and is registered to start JC in the fall--at 16, and with only a year of high school behind him. I am hoping--but not 100% confident--health problems will not hamper his progress. But at least we have escaped the school bureaucracy and will have more flexibility to schedule whatever classes he can handle.

Chronic illness has changed things. I no longer delude myself that I can make my son's life "perfect". But that was always a delusion, anyway. As long as the issues are not life-threatening, we will work around them and continue to hope--and expect--that better days are ahead--and that he ultimately will prevail over any ongoing difficulties. It seems your son has the same expectations, so that is good.

This message has been edited. Last edited by: Connie,

Connie,
Thanks for your post. As much as I hate for anyone else to go through this it helps some to know that there is someone else.
I had to chuckle a little when you we're talking about the mucus fistula and putting a sanitary napking over it. We have also tried everything with this nasty little thing! A pediatric bag, which is suppose sounded like a good idea, but no. His fistula and stoma are too close together to be bagged seperately and too far apart to be bagged together. Go figure! I tried the sanitary pads too, but it did'nt work like I thought it would. Right now I just put a lot of gauze on it and tape it up! It still leaks all over so I have to change his ostomy nearly every day. Once in a while he might make it almost 2 days, which usually means he sprung a leak at 3am or something so I just try to change it every morning to avoid waking up in the middle of the night to that.

I am however feeling somewhat better about the 2nd pouch. It just scares me to think of him going through this again and then thinking it might not even work. Aaron has had ostomy's on both sides now. I just can't imagine where they will place the next one. His belly really looks terrible. We also had lots of trouble with his incision healing this time. His pouch was punctured so he had all of that stuff leaking in his body so he was full of infection. They did staple his wound but it was left opened. It was really gross and 3 of the staples popped out so you can imagine how nasty that was for him. I didn't think it would ever close up. It is closed now, but it looks like something out of a horror film!
About the schools.... I was so very disappointed and to top it off I work for the district that my kids we're attending. We have school of choice for school employees so they we're attending the district I work for so I could keep better track of them. They have been transferred back to their home district because of how poorly they treated both of my school age children. Their home district was always good to them before so hopefully he will be able to get an education this year. Last year he was not educated he was just passed onto the next grade. I am grateful he was not held back, but they did not do their job!

Melinda

quote:

His fistula and stoma are too close together to be bagged seperately and too far apart to be bagged together.

Does it make you wonder if surgeons even consider some of these things?? We learned quickly that once they're finished with their job, these little "practicalities" are yours and the nurses' problem!

quote:

Last year he was not educated he was just passed onto the next grade. I am grateful he was not held back, but they did not do their job

Don't even get me started on the school district. They did ZERO for Thomas in the way of formal accommodations in grades 3-7 (through all these surgeries), actually fought giving him a 504 plan when I finally asked for it in 8th grade (I had to bring in the State Disabilities Office), and didn't/couldn't follow his plan in high school. As soon as he gets the passing score on the proficiency exam, I plan to send his 5th-8th (maybe a couple of 9th) grade teachers a note thanking them for doing a good job of providing all of the secondary education he ever got, which thankfully was enough to get him into college. Can you tell I'm a little angry? They haven't heard the last of me. I'm hoping very soon I will be able to do some support and advocacy for other parents of chronically ill children in this district, which really needs to be called to account in this area.

I guess that's enough ranting for today.

I couldn't agree with you more, on both of these issues. Hopefully we will be minus one mucus fistula soon, but he's got a long way to go. I know I will have to deal with the schools for a while yet. They love it when I just have my husband deal with them. lol. The principal told him it was not her job to make sure his homework was gotten together and sent home. He says "don't you run the place?"