Has Anyone Dealt With Recurrent Rectal Prolapse? :(

[bradysmom2007]

Hi everyone, this is my first time posting. My almost 5 year old son reacts to gluten in the form of severe GI distress (pain, uncontrollable clear mucous stool every 30 min for 1 or more days)accompanied by rectal prolapse intermittently. The prolapse is quite large and the swelling is always severe - so much so that it's had to be covered in table sugar at the hospital in order to get it back in and he has had to have surgeons put it back in under sedation many times. Sometimes it self retracts if we can get him to a laying down relaxed position quickly enough. The poor kid basically goes into a shock-like state when it happens... cold, shaky, trance-like and eventually falls asleep.

Recently, we saw a new GI specialist who insists that the prolapse is NOT related to celiac or gluten in any way. She also commented that a prolapse looks like a pink life saver. What happens to my son looks nothing like this. His prolapse is dark purple in color and ranges from the size of a golf ball to the size of a baseball at the worst. The specialist says nothing can be done but I just can't live with that answer and the constant threat of this happening hanging over us.

Has anyone dealt with this issue before? I'm told it's rare in children his age who don't have cf and don't suffer from constipation.

[Mom2J112903]

My son doesn't experince the rectal prolapse but we have SEVERE colon issues. Has the GI ever done a colonoscopy? I am sure they have but it they haven't, I would insist on one.

[ravenwoodglass]

The poor little guy. Perhaps a second opinion from a different ped GI might be in order. Just throwing the thought out there that maybe they could check and make sure he doesn't also have some sort of connective tissue disorder that is affecting the bowel. The reason I say that is because I have one and have suffered minor prolapse but nothing to the extent that your little one has.

It must be so hard to watch this happening in your young child.

(((((((((((((((((((HUGS)))))))))))))))))

[bradysmom2007]

Thank you for oyur responses. It's very difficult to find anyone who is familiar with this type of prolapse. This is our third GI consult and we are told the same thing every time... it's not a pressing medical issue as long as we can get to the ER within an 30-60 min of it happening if it can't be reduced at home. No colonoscopy has ever been ordered because every doctor we have seen tells us that all we can do is wait for him to outgrow it. This hasn't been going on since birth... it began about 1.5 years after the onset of celiac symptoms. It doesn't occur with every single glutening but has never occurred when he has not been recently glutened.

I'm very concerned about sending him of to elementary school in the fall, where he will not be supervised in the bathroom.