Daughter with an Ileostomy

Hi everyone,

Just spent a couple hours reading posts. My daughter is 9 and has an Ileostomy. She got it in April of this year. She has Mitochondrial Disease which is affecting her GI tract. For the last 2 years she has been in and out of the hospital for bowel clean outs just about every 6-8 weeks. Since the beginning of this year it's been every 4 weeks and sooner. In Feb she had an MACE procedure. Unfortunately that didn't work. She was still backing up and ending up inpatient for clean outs. The beginning of April she had a barium enema which showed she had a Megacolon.
Nothing left to do, but do an Ileostomy to give the colon a chance to rest. The surgery itself went ok. They did it Lap and by day 3 she was up and walking. She was discharged after a week in the hospital. The day of discharge she said her stomach hurt. Literally as we were walking out. We get halfway home and she is crying in pain. Turned around and went right back to the ER. Turns out she had an obstruction. It was so horrible to see her in so much pain. They had to put a suction NG tube down her nose to get some of the air out. That it self was horrible. After a another week in hospital she was released.
Everything was going good up until June 1st. Her intestine prolapsed. I took her to our local ER( our children's hospital is a 90 min drive) because she was in horrible pain. This was a huge mistake. Took 2 hours just to get in a room and another 1 hour for doctor to come in. The idiot doctor was trying to push the intestine back in with the wafer on. My daughter is screaming in pain. I asked them to please just transfer her to Children's... Who know her and her condition. They finally agreed. Eight hours later( start of prolapse) she was at Children's. Since the other ER kept the wafer on( I told them to take it off but their reason to keep it on was so they can keep the bag on to keep intestine moist...sounded like a good plan at the time) the intestine had strangled. Kylee had to have emergency surgery. The surgery took 3 1/2 hours and had to take out 2 in. Off of intestine. The stoma cut was also bigger. This surgery was 10x harder on her. Kylee wouldn't walk for 6 days after. Took a good month to get to her baseline.
August 7.. Kylee had another prolapse. This time I put sugar on it right away and just drove to Children's. At first the surgeon wasn't able to get it back in. The decision was made to sedate her and try again. With lots of pushing they got it back in. Kylee was admitted just over night to make sure it stayed in. She was sore for a couple of days but is back to normal.... Her normal..lol.
July 11-12 kylee had a colonic manometry test and it showed that the colon is still not working. She has nerves but the signals just don't work. This is most likely from her disease. Plan right now is to keep Ileostomy for a year and repeat test. If no improvement we will go ahead and do a colectomy. If she does have improvement they we will try and reconnect small bowel with colon. the doctors aren't to confident that her colon will ever work again. Especially 2 years ago she had a normal colonic manometry test and now it's not, but I have to hold on to some hope.

The surgery team told us to expect another prolapse. Does anyone else deal with this? What can we do at home? They said if it is out more than 3in we have to come in. This last time it was 3 in and it was so swollen that they couldn't even get it in. I'm always feel like its a bomb about to go off. When will it happen again. Not only is she dealing with that.. The rash and sores under her wafer are itching her and hurting. Tried all different products and all do the same.
Kylee also has a G tube, a separate J tube, and Port A Cath. Wearing a belt is out because of her tubes. She also gets IV fluids every night for dehydration. She had dehydration issues before Ileostomy, but now I can't get her hydrated.
That's our story. I'm so glad I found this site. I'm sure to get all the info I need during this journey with an Ileostomy. Thank you..

What a horrible situation for her! I'm so sorry to hear about that. I don't know about the prolapsing. I hope you can find some answers for that.
As for the burning and itching, maybe if you tell what your routine is someone can trouble shoot or have a different suggestion.
As for the dehydration, you can add salty snacks, or if you can get her to drink it, you can put a small amount of salt in her water, a friend of mine has a child who is always dehydrated, and the Dr suggested that and it has helped a lot.
I'm not sure what all those tubes are for but it sounds awful for her! I hope you find answers right away! Good luck!

mrsbugzy said...
How sad for her, and awful for you! As a mom whose child has had some issues ( NOTHING to the extent your daughter has had), it is heartbreaking as a parent to watch them go thru it. Our 10 year old is prone to kidney stones, she just had her 5th surgery to remove last of stents.
I can't even imagine what she is going thru. I know at our children's hospital they have what is called Child Life. It is a group of people whose sole job is to comfort your child, and to help them understand what is going on with their body. My daughter could not have gotten thru her issues without these wonderful people. You may find someone in your area to do that for her.
Best of luck :)
I have had to have a colectomy, but have never had a bag or pouch, so I am afraid I won't be much help in that area.
Best of luck to you, and hugs for your brave little girl.

Thank you mrsbugzy,
Kylee does have a Child Life Specialist. She has been a life savor for when Kylee is inpatient. She is the one person Kylee can talk to about what she goes through. I'm sorry to hear about your daughter. Kidney Stones are the worst

summerstorm said...
What a horrible situation for her! I'm so sorry to hear about that. I don't know about the prolapsing. I hope you can find some answers for that.
As for the burning and itching, maybe if you tell what your routine is someone can trouble shoot or have a different suggestion.
As for the dehydration, you can add salty snacks, or if you can get her to drink it, you can put a small amount of salt in her water, a friend of mine has a child who is always dehydrated, and the Dr suggested that and it has helped a lot.
I'm not sure what all those tubes are for but it sounds awful for her! I hope you find answers right away! Good luck!

Thank you summerstorm,

Our routine is.. Getting everything ready first. I take off the wafer. Wipe it down with those stoma wipes( this has helped with the rash). I make sure all the cohesive is off. I let her skin dry. I put the cohesive around the hole on wafer and cohesive on her belly button. I put the wafer on and then bag. Is this the right way? We are using Hollister products. Can we post a link( picture)on here to show her rash??

Kylee doesn't eat much by mouth. This is why she is tube fed. She won't drink much by mouth either. I can get about 4oz a day in her. I know a fact she would not drink salt water. I can try to put some salt in her formula though..thank you for that idea. She does love BBQ chips..which I allow her to eat when she wants too. Kylee gets 700ml a night of normal saline through her Port..which helps.

Oh my lord, this is so sad. I hope you can get this sorted. I am dealing with a stoma revision gone bad after a severe stenosis. Prior to that had 4 great years as an ileostomate. You have my prayers for your daughter. Rosemary

The jpouch is a reservoir the surgeon builds from the lower end of the small intestine. Stool collects there qnd the person can go to the toilet normally, no bag, no stoma. It is for people who had their colon removed. That is why I mentioned it - if her colon doesn't do its job, they should remove it and as long as her small intestine is ok, she can have a jpouch.
I think you should talk with a specialist at Mt. Sinai in New York. I cannot access his email address but you can google: Dr. Steven Itzkowitz. Write him an email and I think he will know someone for prolapse issues.

I'm so sorry for all your daughter has had to go through. I don't have an ostomy (my daughter may have one soon and I read this board) but I have friends with small children who have had issues with prolapsing stomas - from what I've been told there are two options if it becomes a serious issue (which it sounds like it is in your case unfortunately). One is surgery with a mesh which they put around the abdominal wall surrounding the stoma (I think?) so that it is tacked in place and doesn't slip out. This is successful in (I think?) 50% of cases. The other, more invasive option, is moving the stoma to the other side of her body and hoping it doesn't keep happening. I think this is something they really don't want to do if they don't have to.
I have a friend whose daughter had the mesh with good results and another whose son has prolapsing issues but she's managing so far by pushing it back. I agree you need to get another expert opinion.
Good luck to you and your daughter.