Our 15 year old son is profoundly disabled and has been tube fed for 12 years. We first placed a G-tube and a few years later attempted to solve severe reflux with a Nissen fundoplication. The surgery failed. We began using a J-tube to feed him then (using the G to drain his stomach to protect his esophogus). Drainage around his J-tube stoma has been worsening ever since...damaging his skin to the point where is oozes blood and is very painful. We've found no way to manage the problem and have finally decided to surgically place the J in another location using the Roux n Y procedure.
Does anyone have any personal experience with the Roux n Y placement of J tube? Cautions? Alternative ideas to solving a chronic stoma seepage/skin erosion problem? Thanks for your suggestions!
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J tube drainage/Roux n Y surgery
- By janegmx
- Posted May 8, 2009 at 10:51 am · 4 replies
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- By whos_your_dolly
- Posted May 10, 2009 at 8:06 pm
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Im wondering what you mean about the fundoplification failing. My 18 year old had one sometime before he was 4 years old [when he came to live with us] and it has seemed to be a success. Also, he has a Mic-Key button which has healed perfectly. He did have a PEG tube that was ALWAYS infected and raw, with that long tube hanging out all the time getting tangled up in everything. That's why we liked the Mic-Key so much--the long tube comes OUT after each feeding and the button lies almost flat on our sons abdomen and doesnt get infected or leak unless the balloon has become deflated and the button needs replacing [which we do ourselves at home]. Wish I could help more but I don't know anything about the procedure you are asking about. Could you describe it a little more?
Marilyn
- By janegmx
- Posted May 11, 2009 at 9:17 am
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Thanks for your reply. During my son's fundoplication surgery the doctor found his anatomy
to be 'unusual' but he went ahead and performed the wrap. Afterwards, the stitches pulled open and my son nearly died from peritonitis. Unfortunately they were not able to re-wrap the stomach when they repaired the damage. Because of the severe reflux issues, we can't go back to G-tube feedings.
The Roux-en-Y is a procedure creates a pouch in the Jejunum in which the tube anchor sits. The idea is that if the balloon is out of the way of the main intestinal flow it won't cause the partial blockage which causes pressure build up which causes leakage of intestinal fluids through the stoma.
Having gone through one digestion system surgery that went wrong we are wary of another and are wondering if anyone else can comment on their experience with the Roux-en-Y. Thanks so much.
- By marycb
- Posted May 13, 2009 at 10:59 pm
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I used to be active in the Yahoo pediatric gastroparesis list although I haven't kept up lately, but I know back when I was reading the list, there were at least a couple of kids who had had the Roux-en-y procedure. When I mentioned that my son had his J-tube just put into his jejunum, there were several people who seemed surprised at this and said they thought they did the Roux-en-y on ALL pediatric patients. You might be able to find people with experience with the procedure on that list. I do seem to remember that one problem they said their kids had was frequent bacterial overgrowth. Good luck, I would be interested in hearing how you work to solve your problem as we have the same awful leaking problem with my son who has had his j-tube now since 1997. Sometimes they say, "maybe he needs a revision" but we haven't gotten that desperate yet.
Mary
- By janegmx
- Posted May 14, 2009 at 11:28 am
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Hi Mary, I so appreciate your suggestion! I will look up the website/list you mention! And I'll try to report on our experience with the surgery and its results.
:-) Jane
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