Seeking Advice on Ostomy Surgery for 11-Year-Old - Need Help and Information

My 11-year-old daughter has been suffering from gastrointestinal issues for several years now, and recently went in for another test. From the results of this test, the doctor came out and told me that he wanted her to be admitted into the hospital to clean out her system, do a test that would show the contractions of her intestines, and also do a surgery that would be an ostomy that would place a button on her belly button so that she could push it and it would clean her system every day. That is all the information he gave us. I have looked up as much as I can, and have only found that it's not really a button, but a catheter I believe. Other than that, I have not found much information. She has not even been diagnosed with anything yet, but she has had so many painful problems and a lot of testing. I also have two younger daughters having the same problems and would like to know if anyone out there has any advice or information that would be helpful. I only have the free membership on here so not sure if I can reply, but would love to hear your thoughts. Thanks in advance.

Hello thebabymaker,

I would check out another doctor. I had problems for years. Over the years my butt would bleed and I had gotten several tests done and the last one I was told I have Diverticulitis.

A few years ago I had I was told a G.I. bleed. I was in the hospital for 5 days and it stopped. They did not do any tests, just bed rest for 5 days.

Well, I went to PA for 2 months and I was on my way home to Texas and I started to bleed again, stopping every 20 to 40 miles to use the restroom.

When I got to Crowley, I had a friend take me to Huguley ER. The doctor did an operation and saved me.

Now I have a colostomy.

There is help out there like The Ostomy Association in Ft. Worth (American Cancer Ass.) Give them a call.

I got a lot of info there.

Diceman

My brother also has colostomy bags due to Crohn's disease, and my sister has IBS with constipation. So with this I have seen several different issues. My daughter hasn't had any bleeding, just severe constipation that cannot be controlled by any medication. They've tried everything including the meds you use for a colonoscopy and that didn't do anything to her. She stayed backed up for so long that it stretched out her intestines. She had a test done that showed she has weak pushing abilities, but so far that's all we've found. This seems extreme to me to do this surgery, but I also can't watch her in pain everyday, vomiting daily, and all the other problems anymore. I definitely will do my homework before we proceed with this surgery, and I thank you for sharing your story with me.

Diceman's advice about seeing another doctor is your best move. Your daughter has been suffering from still undiagnosed GI problems for several years now. Enough already. Find the best gastroenterologist in your region who will successfully treat your daughter (and perhaps her sisters) with actual cures and not indefinite testing...or extra belly buttons. Good luck.

  PB

Thank you so very much, and yes that's exactly how I feel. I will be taking them to get another opinion and find out what other options we have. Still curious if there is anyone who has had this surgery before, or their child has?

How to Get Back to Activity after Ostomy Surgery with Kimberly | Hollister

Babymaker, you've gotten some good advice above. I'm not sure that I can add to what they've said, but I would make it an absolute priority to speak with another doctor.

On the weekend, I cried like a baby at a wedding. The father of the bride had been released on a "day pass" to walk her down the aisle (he did not want to tell her about his health issues on her day). This week, he's to be operated on for Crohn's disease and will have an ileostomy. I was so disturbed by his predicament because it mirrored my situation over 20 years ago: deep inside, I believed that I wouldn't see my kids get married ... obviously the feelings are still in there!!

My point for you: do not wait until it's too late to diagnose accurately and act promptly on the diagnosis!

Good luck and keep pinging us ...

I'm so sorry to hear all the pain and suffering that all of y'all have had to endure. And that is exactly why I want to make the right decision for my daughters and not let this go on any longer. They have all been in so much pain and suffering already, it's got to stop! I've watched my brother for so many years in so much pain and discomfort with his Crohn's disease, and then even more when he was forced to have colostomy bags done. He was also told they could be reversed someday to now only be told his is irreversible. I don't want my girls to have to go through any of that! I thank y'all so very much, and will be praying for you all!!

Goodness! As Primeboy says ... get to some other doctors/gastrointestinal experts before doing anything. BTW - A doc who would describe a significant procedure as a "button" and then leave you to look stuff up would make me run.

It's a life changer - most often for the better - but you need a correct diagnosis and real information.

Best of luck!

I have found out even more alarming information since I posted. The doctor didn't plan on talking to us about any of this until the day she goes into the hospital. I have contacted another hospital in Cincinnati and they have referred me to a doctor close to us that used to work for them and has specialized in bowel management. Hopefully I can get my girls to see this doctor and get some answers. I thank all of you for your advice and information.

So glad to hear this! I've been thinking about you since I posted.

Well done, Mom!

Thank you, and I will try to keep y'all posted!! Please pray for my family!