UOAA Discussion Board

Hi,
My son is 24 and has CP. He needed to have an ilestomy in August. A month after the surgery he had a prolapse so bad that he needed to have a revision. Almost a month to being discharged in September he had another prolapse and it now happens several times a day after being up for~ 5 hours it starts. The Dr. said lay down put ice on it/and sugar if needed to get it to reduce. If it reduces, the color is good and its not painful it is not an emergency. It happens often, he doesn't seem to be in pain and it is working but he is getting tired of having to lay down often with the ice pack. We have an appointment coming up soon with the doctor and I'm wondering if anyone else has had this problem with it prolapsing frequently. If yes, what measures have you taken to help with the prolapsing. Is this what is to be expected? I have ordered a belt that hasn't arrived yet. He is ambulatory and I limit the time he is walking because it does prolapse if he is standing and walking too long. His communication is limited.
Any suggestions/tips would be appreciated.
Thanks,

Hello,

Sounds like you guys have been through it recently. Prolapses are not anything that I've experienced, but as an occupational therapist, I've dealt with CP quite a bit. There are a list of things that contribute to prolapses, and unfortunately, CP can be the root cause of several of them. Physical strain and exertion of abdominal muscles, anatomical and physiological factors, increased abdominal pressure, and poorly developed abdominal muscular support are some of the factors that can lead to a prolapse. Unfortunately with CP, some or all of those may be coming into play, especially when he is trying to stabilize his core while standing/ambulating.
In trying to combat this, I would suggest trying some type of abdmoninal binder or soft TLSO (Thoracic Lumber Sacral Orthosis). The TLSO may increase abdominal pressure though, exasperating his issues. TLSO's unfortunatly are pretty pricey unless you have insurance coverage. A soft, post surgical abdominal binder might work, and be considerably more affordable. But, you'd have to be mindful of output as the binder will adjust to output, but it will definitely put pressure on the flange inside the pouch, possibly creating a leak due to the pressure of the binder. Might could just use the binder for walking and standing?
Hope that helps some.

David

Hi David,
Thanks for your reply. I do think the CP is a contributing factor. We will try the prolapse belts and hopefully one of them will work.
Ben's mom Kate.

I have a fairly pronounced prolapse (about 5 or 6 inches) as a result of two pregnancies. It makes my pouch changes a challenge but I don't really do anything extra to deal with it. My surgeon said that as long as it doesn't bother me I can just live with it, and if it becomes too much I can have it dealt with surgically. For now I just live with it. I don't wear a belt or anything else different but I am more protective of that part of my abdomen than I might be otherwise.

Hi Danica,
I'm glad to hear that there is someone out there that has this and is continuing on with normal day to day activates. I have felt like I'm in the Twilight Zone with this some days.
Ben's goes in and out throughout the day. It doesn't seem to bother him. We have been putting ice on it and with that usually work. It is working and the output and color are good. We see the doctor again this Thursday and if they say this is the way it is then I'm o.k. with that. I just need to hear that what's happening is going to be the new norm and I can stop stressing when it is prolapsed. I need to let the nurse at his day program know that the prolapsing is o.k. His day program currently is only accepting him half days. For both of us i need to get him back full days.
Kate