Anyone else here with a child with megacolon, absent RAIR?

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TwinsMommy

Sun, Jun 26 2022, 1:57 am

My 15 year old daughter has only twice in her life felt an oncoming bowel movement, gotten to a toilet and produced. She's failed backside manometries. We MANAGE her encopresis with cecostomy flushes but her megacolon is just as severe now as it was when she was 10 and we did the cecostomy surgery. My understanding is that cecostomy generally helps shrink the colon and help kids regain feeling. She poops in a toilet after her cecostomy flush and then we cannot flush the toilet---- we have to take her tree trunks and toss them in the trash. Because she also has ADHD and autism, her GI specialist is concerned about colonoscopy and colonic manometry testing which will guide us to our next steps (resection? ileostomy?) and wants to wait until she's 16. Well she'll be 16 in half a year. Has anyone had experience with resectioning in such a case magically bringing back all feeling and normal bowel movements, or are we headed towards the bag if she doesn't want to manage with cecostomy forever? (because of autism she refuses to do her own saline and glycerin mix, her own measuring, pouring, dealing with bag to connector getting stuck issues, throwing away the poop, etc----- it's all on me--- she won't even let my husband help.) Anyone here with a child or teen with an ileostomy (or somehow resectioned and got off cecostomy?). Just want to talk to similar moms--- I don't know anyone local dealing with any of this. If she wants to live on her own someday she'll need something easier to manage than cecostomy----- once she gets the right bags/seal, I THINK ileostomy might be better for her long term and allow her some independence but I want to talk to other moms who have been through resection, etc......

amother

Currant

Sun, Jun 26 2022, 2:00 am

Don't have personal experience but that sounds like something very difficult to deal with. I wish there were easier answers for you. Wishing you strength and hatzlacha.

TwinsMommy

Sun, Jun 26 2022, 2:23 am

thank you, I appreciate that! Also imamother changed my wording for the first type of manometry. The type of manometry she's already done multiple times isn't actually called "backside". lol. A four letter word beginning with A. The type where you stay awake and feel pressure--- there. Or don't.

amother

Leaf

Sun, Jun 26 2022, 3:49 am

Not sure what cecostomy is. Ive had analrectum msnometry done few times as well as boifeedback and stimulation. Ive hsd a colectomy and sigmoidectomy but still hardly have an urge. I'll try to create an email address to email me what has helped somewhat. However, my issue isnt from birth so not sure itll help. Have you tried laxAtives that stimulate?

amother

Hunter

Sun, Jun 26 2022, 9:53 am

That sounds so difficult. I'm sorry you've been dealing with this for so long. As a wife and mom of people with multiple gi issues, I send you many hugs and lots of fortitude. This stuff is not fun.
I am sure you've thought of everything, since you've been dealing with this for so long, just figured it can't hurt to mention again. I have one child who had parasites since birth. Despite multiple gi's checking her out, testing her etc, didn't get diagnosed until age 6. Have you ever looked into that? My second thought, I'm not sure how feasible this would be for a teen on the spectrum, I'm just thinking that a gut healing diet might be a worthwhile trial for her.
Wishing you loads of luck in dealing with this challenging situation. Hugs!

amother

Arcticblue

Sun, Jun 26 2022, 10:57 am

I followed someone on ig with CF who deals with a lot of what you mentioned. I think it’s @battling2breathe or something like that, but haven’t been on for a while. Perhaps she can have some insight.

Wishing you much hatzlacha and peace of mind finding the right method and decisions.

♥️ a medical mommy in a different dept 😉

TwinsMommy

Sun, Jun 26 2022, 11:13 am

Yes we did stim laxatives and a year of nightly enemas. The only thing that's helped the encopresis is cecostomy but that hasn't healed the colon, only kept the rectum clear. Changing diet doesn't help. Leaf I'd love to email you.

amother

Leaf

Mon, Jun 27 2022, 1:23 am

TwinsMommy wrote:

Email me at colonforever123@gmail.com
Maybe we'll get smarter together.