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Thread: ACE stoma experience?

  1. #1

    ACE stoma experience?

    My 18 year old son (T10-T11 complete) had surgery this summer to enable him to be independent in his bowel care so as not to be dependent on mom to do manual. Now he's having a lot of trouble avoiding accidents (not a problem with manual). Nurse practitioners working with his surgeon keep recommending at least 1000 mL saline which even after 1 - 2 hours has not worked through his system (most of their patients are infants & young children so they have limited experience with big guys). He always ends up adding a fleets because of no action -- but invariably has major diarrhea accidents next day. Any advice?

  2. #2
    Hi,

    I have a few questions-

    What type of surgery did he have? Are they suggesting saline enemas?
    How often?
    What was his previous bowel care and the amount of accidents?
    How many months since surgery? Did you inform them of his recent accidents?

    AAD

  3. #3
    The surgery he had was called an appendicocecostomy. Yes they suggest saline enemas -- daily now because he gets blocked up so easily. Previous care was manual disempaction by mother every 2 to 3 days with no accidents. He wanted to be independent of his mother -- couldn't go away with friends for a week. Mid July was his surgery. He was hospitalized in ICU for 4 days last month because of rupture in the stoma. We see doctor and/or nurse practitioner every week or two now due to recent problems. One has just recently communicated with team up at Boston Hosp looking for options. We go see them tomorrow again. Most recent protocol was using Magic Bullet with Miralax in 8 oz saline -- the magic bullet (which we had used prior to surgery) -- seemed effective in opening up rectum but fleets is much more effective than miralax. Large amounts of saline (such as 1000 cc) would just swell his belly but not pass thru. He has very distended colon due to chronic constipation history -- long before injury which was about 21 months ago. Since his hospitalization last month, the stoma is shorter without a bend so it 'toots' regularly and has some back-up of stomach acid which burns skin in the area. Occasionally stool, too. The main problem is, even with two hours daily on the pot, very little productivity is achieved. He is a high school senior hoping to go away to college next year.

  4. #4
    I have had one patient try an ACE procedure. It was OK for him (goal was to prevent accidents, not treat constipation), but he ultimately opted for a traditional colostomy after about 6 months. He was never able to get the ACE regulated with the irrigations alone, and still had accidents.

    The ACE has been used primarily in children with spina bifida. Esp. in the USA there is very limited experience by physicians or patients in using for adults with SCI.

    (KLD)

  5. #5

    Thanks

    I appreciate your response. If we get this all worked out, I'll let you know so you can advise others. The stoma surgery was first suggested to us at the SCI unit at Shriners Hosp. in Philadelphia. When all other efforts for Carter to achieve independence failed, we went looking for a doctor to do it before our COBRA benefits ran out. In hindsight, we may have rushed into it because Carter wanted so badly and urgently to be free of his mom. We do learn so many of our lessons the hard way! We go back in a month now to have additional tests done to evaluate bowel function once healing from surgery is complete. Again, thanks.

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