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child growing up with an ostomy

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Posted 12/19/2009 5:34 PM (GMT 0)
Hi All,

I've been posting on the UC board but this is my first time posting here. My 3-1/2yo daughter was diagnosed with moderate to severe pancolitis at the end of August. She was on a course of pred (first IV then oral which finished in early Nov) and on Pentasa since diagnosis. We put her on the SCD at the beginning of Oct.

She is now having another flare-up, which seems to be even worse than her first one, and despite our hope to be able to avoid another course of pred, she's now back on it (only orally we hope). Now, her GI is already saying that we should move on to Aziathropine but we are very worried by the possible side effects especially considering she is so little and the long-term safety and efficacy of those drugs for pediatric use is at best unclear and in any case we don't want her to grow up constantly under the threat of a flare-up.

We are seriously considering surgery and we have been reading a lot of posts on this forum, which have been very helpful and encouraging. For the moment we are thinking of a temporary ileostomy so as to (hopefully) minimize surgeries and leaving to her the choice to opt for a j-pouch when she is older if she wishes so.

We have a number of questions which we hope some of you might be able to answer:

1) Do you know of any children about the same age as our daughter who have undergone total colectomy and have a temporary ileostomy? If so, how are they doing? How did they adapt to the ostomy bag?

2) Once everything is healed, is there any physical activity that one is unable to perform? (Does the ostomy affect one's abdominal muscles?)

3) Do you think it's a good idea to go for a permanent ileostomy or would you think it's better to try the J-pouch?

4) What are the most serious complications and how are they addressed?

Thanks for your help.

Post Edited (killcolitis) : 12/19/2009 12:12:23 PM (GMT-7)

Posted 12/19/2009 6:19 PM (GMT 0)
1. i cant answer from experince my CNA in the hostpial after surgery her daugher had an ostomy bag until she was about 3 and she told me she did fine with it, but then she had the jpouch. A friend of ours got a colostomy when he was about 9 or so, but he was paralzyed from spinabipida (sp?) so he didnt really notice it physically.

2. there are no physical activities you cant do, just as with any surgery on your stomach, you have be careful because the stomach muscles arent as strong, but as long as you arent lifting fridges or anything it should be fine, lol.

3. i think i told you before that we thought my son might have a problem with his stomach and that i told my husband he woudl have surgery. I was going to get him a temp ileo and let him decide when he was older whether he wanted the jpouch or not.

4. complications are the same as with any surgery. But as for the coplications from the ileo itsself. There could be skin problems, or blockages. With the jpouch there can be pouchitis and failure, i dont know much about those, cause i have a perm ileo.

Honestly, i think you will be doing the right thing for your daughter, she would be facing a life of dangerous drugs and sickness, when it isnt necessary. It breaks my heart to hear of a child going through this though. Noone should have to, esp not a little baby. But at least with the surgery she will be able to enjoy her childhood and be healthy!
Posted 12/19/2009 8:48 PM (GMT 0)
Hi summerstorm,

Thanks for your reply. It's very helpful and encouraging to hear from people who like you have gone through this and think it would be the right thing for a child in our daughter's condition. I suspect that many don't opt for surgery because of the fear of not having a "normal" life after surgery but life with severe UC is not normal by any stretch of the imagination. One of our fears is that one day our daughter may think we haven't made the right decision on her behalf (hopefully, she won't even remember her UC days).

More practically, how does one deal with blockages? (3-1/2yos are not big chewers.)
Posted 12/20/2009 1:30 AM (GMT 0)
I've had my ileostomy since I was 10 years old due to UC - it turns 34 years old in January :)

Their biggest worry was that one day I would turn around and say "why did you let them do this to me?" I never have. I've never regretted it, it was one of the best decisions my parents ever made for me.

Growing up with it, she will come to view it as 'normal'. I can't remember what it's like NOT to have a bag and if someone told me it was possible somehow to going back to being 'bowel intact', I'd have to think long and hard about it - to me having a bag is 'normal' and I can't imagine life any other way.

I can remember sitting at school not daring to move for fear I would 'go' there and then before surgery! It's a vivid memory and not a pleasant one.

At school I participated in the school army cadets, I've travelled and ridden elephants and camels, I go swimming regularly in summer, been rock climbing, I've travelled to Singapore, Hong Kong, Thailand, USA and UK (I'm an Aussie). In short... I've done anything I wanted to do.

In my doctor's notes, there's a bit from a visit a month after surgery that says 'You would not recognise this as the same child 1 month ago'.

Surgery gave me my life back!
Posted 12/20/2009 2:44 AM (GMT 0)
Hi there,

First of all, I am sorry that your daughter has to go through this. I am 31 years old and have suffered with UC for the past decade. My biggest fear is that one of my little girls will inherit this awful disease from me.

I have suffered from several flare ups and been through the ups and downs of Prednisone. I finally decided that enough was enough and opted to have jpouch surgery in early October. I am awaiting my reversal in January and I must tell you that I can already tell that I made the best decision for myself and my family. I am only 2 1/2 months out but I have been told that if I should feel a blockage coming on to drink LOTS of water. I tend to drink lots of water anyway but definitely make it a point to drink more if I decide to eat something that may not agree with me or that is harder to digest. Is your daughter a big drinker? My 2 little girls drink from their thermos' all day, lol. If the blockage is too severe, then I believe that surgery to correct it is the answer. I know that 3 1/2 yr olds are not big on chewing but maybe you can practice with her from now and make a game of it. My little girls love anything with a game.

The only "issue" I have had with my temp ileo is skin problems. I was able to order different ostomy supplies which corrected the problem and now my skin is doing much better.

We are all here to help you if you have any other questions. I know that if I were your little girl (knowing what I know about all the meds, hospitalizations, etc), I would pray that my parents would have me have the surgery. I will say an extra prayer for your little angel tonight:)
Posted 12/20/2009 3:59 AM (GMT 0)
as for the chewing, i know how that goes i have a 4 year old and i think he swallows everything whole! When the ileo is new try easy to digest foods, steer away from hotdogs and such. You probably cut her food up still anyway. Just cut it smaller. And have her drink lots of water. some juices make your output faster, you will learn which foods do what to her.
You know i hear alot of people say they worry about not having a good quality of life after surgery (and im not taklign about you here,just in general) and then i read a post of theirs later where they are in the hosptial or missing out on their fav food, or an event they want to attend or having accidents. And i think, what kidn of life do they have now?
You know what i mean?
Posted 12/20/2009 6:53 PM (GMT 0)
Thank you all for your comments. Summerstorm, your comments really do resonate with us. I completely agree that if this is how things are going to go, this is not a life I would chose for my child and if surgery can end this, then it is the way to go. Shaz, we've been reading your site and it is very helpful. One of the reasons we are seriously considering surgery sooner than later (assuming we will have a choice, not yet clear about that but we are very weary of the "big gun" drugs and I don't know if we are just being unreasonable about that) is that children are very resilient and we can explain it to her in a way which will allow her to see it as a normal part of herself and not have so many body image issues associated. Do you have any tips about dealing with that? Did you tell friends? Were they supportive? I imagine it would not go over very well with pre-teens but perhaps I'm wrong. Of course, I don't want her to be bullied or made to feel inferior because of this but I can't expect that will never happen. Nutz, thank you for your thoughts and comments. They are very helpful and we can only go into this hoping that we are doing what in fact will be the best for her. It is a devastating position to be in. What, in your opinions, are the common serious complications with this surgery? When we had a surgery consult, the surgeon didn't get into the details of this surgery, it was more about the complications associated with J-pouch surgery and the pouch itself. Any thoughts?
Posted 12/21/2009 4:13 AM (GMT 0)
Like just with the actual opening of the stomach and all?
Well there are chances of reactions to anethsia, and bleeding and such as that. Infection of the wound. There can be paralysis from the epidural. But all thsoe are very rare. and even if you do get an infection they can usually clear those up if they are caught fast enough. LIke i had some teeth cut out, and it got infected, so i had to take some antibiotics and it went away.
Or after surgery if it takes a while for the bowels to wake up you might have to be on a feeding tube. But again, all that stuff is rare.
After surgery i for some reason had my blood levels drop ALOT very quickly, so they gave me two bags of blood and i was all better. And then i had a random fever one night, it went away so no problem there. But stuff like that can happen.
Didnt say all that to scare you! really that stuff rarely happens.
Posted 12/21/2009 11:15 AM (GMT 0)
"we can explain it to her in a way which will allow her to see it as a normal part of herself and not have so many body image issues associated. "

When she becomes a teenager, she will probably as all her friends will, unfortunately, always have body issues whether she has an ostomy or not. If it's not her ostomy, it will be her nose, legs, tummy, eyes, pimples, etc. Mine has always been my big bum rather than my ostomy lol The best thing you can do for her is not make that big a deal out of her ostomy and treat it as a normal thing. Hopefully, that way she will grown up accepting it easier and not stress out too much about it later on in life.

Just explain that some people wear glasses to help correct eye problems, some wear braces on their teeth to correct teeth problems, she wears a bag to correct bowel problems. And the biggest bonus - hers isn't visible like the glasses, braces, hearing aids, etc :)

"Did you tell friends?"

I told my closest friends in school (some of whom are still friends 30 years later) and they really didn't care about it. I got myself all worked up over nothing lol

"Of course, I don't want her to be bullied or made to feel inferior because of this but I can't expect that will never happen."

People need never know about her ostomy unless she tells them. If people ask why she's been away from school, all she need say is she has had tummy troubles and surgery has fixed it, no need to go into more detail if she doesn't want to. If she trusts people enough to tell them, then she can. Otherwise, she may prefer to just keep it to herself. After all, most other people don't share their toilet habits with their friends :) I was never teased at school about it cos none but my closest friends ever knew about my ileostomy - rather I was teased for being short (pred saw to that one lol).

Take care.
Posted 12/28/2009 10:14 PM (GMT 0)
Hello,

My dd is 3 years old and she just had a sub total collectomy with an ileostomy back in November. So I am fairly new at this, just like you. My dd was diagnosed with UC in July and by the end of October she had 3 blood transfusions, spent over 60 days in the hospital, lost over 10 pounds and pretty much was deteriorating right in front of our eyes. We didn't have a choice really, none of the drugs worked. She even had 3 Remicade treatments and the pain and blood loss never stopped.
The surgery saved my dd's life. An hour after surgery she turned to my husband and said..look daddy no more pain. From that moment on she was a different kid. She had so much life in her. We were released after 4 days post op. Her surgeon said that he had never seen a little kid recover so quickly after having such a major surgery.
now with that being said, of course I am happy that I now have my little baby back but it hasn't been easy. When we had the surgery she was diagnosed with UC, which we were under the impression that we could have it reversed within a year or two. However after the surgery her colon was sent to a pathologist who now says she has "indeterminate colitis favoring Crohns". So now our GI doc. said we are looking at at least 10 years before a reversal and that is only if Crohn's doesn't start to appear in her small intestine.
As for problems the only two things we've faced so far are is skin irritation around the stoma. Which is very common in the beginning (so I'm told). and we've had one major prolapse (her intestine came out about 12 inches during a tantrum) but we were told that really isn't common and we're hoping it doesn't happen again. They managed to get the intestine back in without cutting any away or having to perform and surgery. So we are very lucky.
My dd is not affected at all by her stoma. She loves it, sings to it, plays doctor and gives all of her babies "rosebuds" (that is what we call it since it sounds prettier than stoma or ostomy). My dd does everything she did before she got sick and she doesn't even think twice about it.
As parents it's harder for us. I'm constantly worrying about her future and if she'll grow up having serious body issues. It's very overwhelming for parents.

If you go forward with the surgery please feel free to contact me with any questions or concerns.
Like I said I'm pretty knew to this and our children are pretty much the same age. So anything I can do to help.
Posted 12/29/2009 1:17 PM (GMT 0)
katiesmommy1~what a beautiful story (the back to herself part!)...children really do adapt to any situation :-)

I think there is a 'old wives tale' about brown sugar on the stoma will retract it...I've never personally had to try, but I would if needed!!

Have you been to the www.UOAA.org site? They have a discussion board for parents of children with ostomies which might be able to help, too.

Big HUG to Katie!
Posted 12/30/2009 11:58 PM (GMT 0)
Thank you Ohio76,
I was actually told that they used sugar to shrink the intestine and squeeze it back in. but that is something that I don't think I will ever be able to do. I was freaking out just looking at her intestine, there was no way I could touch it and play around with it. ;)
as for the UOAA site, I'm already a member but people don't post on the parents board frequently. But whenever I have a question I usually go there first.
It is def. helpful.
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