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My daughter's doctor is talking about an ileostomy bag. She is still an infant but I am worried about her growing up like a normal kid. Anyone out there living with an ostomy bag? How do you manage? Am I wrong in assuming this will affect her everyday life in a negative way?
Hi Rileysmom,
Lets not be naive, no-one would choose to have an ileostomy bag. However, thousands of youngsters are given an ileostomy every day. Usually it is performed for inflammatory
bowel disorders such as ulcerative colitis. Some children are born with a defective neurological system to their colon which often requires this type of surgery. Sometimes the nervous system to the bowel just gives up later in life. These patients often get great relief from an ileostomy. It is usually done as a last resort situation but sometimes a temporary situation is the best solution allowing things to be 'joined up' later. I have met some fantastic people who have ostomies and the great thing is that you would never know. When you next go into a busy shopping mall it is likely that there will be several people around you with an ostomy. They will be perfectly normal attractive people just going about their everyday business. Thankfully they do not have a neon sign above their head saying, 'I have an ostomy.' I am aware of a young mum who gave birth to twins and then had to have an ileostomy and she coped, really well! She is a great mum and is sooooo attractive! Nearly 25 years ago I looked after a patient who had to have ileostomy and I bumped into her just the other day. She looked really good.
Sometimes it becomes a straight choice which involves the word survival.
You will find huge support out there for ostomy patients. I think that youngsters adapt better than adults. However, I don't think that you should be dwelling too much on ostomy at this stage. I think that you need to conserve all your energy for coping with the day to day stresses of having a poorly baby. Remember one day at a time....
Regards,
K.
Hi Rileysmom,
I had an ileostomy from birth until I was 3 years old. During those 3 years, I had 12 surgeries which were to reconnect me then complications would occur sometimes the very same day and then it would be reversed again to have the bag. Fortunately, I don't remember any of it because I was so young but my parents remember it.
Then in 1997 I had a blockage in my small intestine along with inflammation, narrowings, dialation. My doctor decided it was best to let my intestine rest and to do this required another ileostomy even though it was against my wishes. I had it for 6 months before being reconnected. Not to be so negative but considering I was 20 at the time, it was the worst 6 months of my life because it prevented me from doing all the different sports I enjoyed. I don't think having the ileostomy would have been as bad if I didn't have a mucis fistula so I could have balloon procedures done every 2 weeks on my intestine while it was resting.
I think if one is needed, its better to start younger with it because then you get used to it and think of it more as a regular thing rather than getting it at an older age and needing to adjust lifestyles.
One thing to be careful with is the bags possibly coming loose around the stoma due to sweat.
Rickey
Hi Riley'smom
I agree no one wants an ostomy bag. I have had an ostomy for a year and a half. For me for whatever reason all of a sudden (after never having had any bowel or motility issues) my rectum no longer worked and I could not eliminate any waste. After a year of pain, tests, loosing a whole lot of weight etc, etc., I agreed to have a colostomy. My colon seemed to have normal motility, so they choose to do a fecal diversion, not taking any colon,, but diverting to a bag.
I am managing fine, feel so much better, don't have major digestion issues anymore, go swimming every day, take showers, baths etc and do everything else.
There are a lot of children with ostomies and todays supplies are great, odor proof, flat, you can wear anything anyone else wears. The only major issues in caring for an ostomies is to make sure the skin stays healthy under the wafer and tape. It probably takes me only five to ten minutes a day to take care of the ostomy and once a weeek when I change the wafer it takes maybe ten miutes or so.
I know you live in the UK, but you might go on the United Ostomy Association of America's website(uoaa.org), they have a weath of information and a whole section divoted to children. Good luck!
jacy
My son had a colostomy and iliostomy when he was three months old, after they perforated his bowel, trying to remove a blockage with a barium enema. The colostomy nurse actually had one herself. I remember that it was inconvenient, but not that hard to manage. The hardest part was the skin breaking down, and having to blowdry it after applying maalox to nutralize the acid. He was fortunate enough to have it reversed, but has severe scarring--and his intestine adhered to his abdominal wall.
Anyway, the colostomy nurse showed me that older people with colostomies actually don't usually have bags. They learn to drain it every day and wear a patch over it. She was quite open about her experience with it--it didn't impact her marriage, and she was much more comfortable.
I know my son was more comfortable, too. We had to look out for gas building up in the bag, because that is what usually caused leaks or spills.
In my case, it was not a decision. I know it must be a hard decision. My son had to learn to grow up with two round, sunken holes and a scar that still makes him look like he's been cut in half. But, you know, he survived, and did not allow it to become his identity. I am sure that, whatever decisions you make, your child will be blessed with your love and support.
Im sure things will be fine, seriously having a bag isn't as bad as some might think. For me, having a bag is really no big deal.
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