I’ve never been in a forum, but I need other parents who understand about having a short-bowel child. I said all this in my intro cuz I didn’t realize how this worked…I have an 11-month old who was born with gastroschesis & was left w/35 cm sm bowel & 40% colon. She was thankfully only on TPN for 2 months. She’s now getting Elecare thru feeding tube & I breastfeed her. Recently we’ve started giving her “real” food & now she has a HORRIBLE diaper rash. My dr is frustrating me, so I thought it might be better to talk to other moms that have been thru this. When I asked what to feed her, he said to just try things & see how they effect her - we’ve tried bananas, mango, sweet potatos, spinach, green beans, cheerios, avacado, crackers & baby cereal (she hated the cereal). I thought my dr would tell me certain things that are easier to digest or less acidic. Has anyone found success with certain foods or certain foods to stay away from? I think the diaper rash is related, but I can’t get it to heal. Her poor bottom is very raw & bleeding. We’ve tried aveeno, desitin, nistatin, patrolem jelly, aquaphor, corn starch, triple paste, citric-aid skin paste (when I called the dr that’s what he had me get). It’s gotten worse, so I replaced her formula w/pedialyte today. She normally gains 1 lb/mo, but she’s gained 1 lb in 2 weeks since we started feeding her. So it’s helping her gain wt, but it’s tearing up her butt. Has anyone dealt with this? Any suggestions? I would love to hear from someone!
Have you tried Ilex or Burt’s Bees Diaper Ointment? Families on the yahoo
short bowel syndrome group have said very good things about these products,
and we’ve also been impressed w/them in our limited experience. Links to
both products are available on the short gut wiki page on stool and diaper
rash: http://grey.colorado.edu/shortgut/index.php/Stool_and_diaper_rash
Hope one of these will help!
Yuko
On Sunday 30 March 2008 at 09:51 pm, natalyasmom wrote:
Our nurse had us try DOMEBORO powder. You find it at
Walgreens, it is expensive but works. You just add a
packet and a little water. I either sit my daughter in
it or just put a wash rag in it and hold it on her
bottom after that dry and I use triple paste (I know
you said that did not work). Have you tried
Boudreaux’s butt paste??
Also some foods I feed mine are toast, chicken
nuggets, fries, biscuits, eggs. I try to stay away
from fruit except bananas. I also try not to give her
popcorn, she loves it but it is hard on her stomach.
I know her diet is not great but I need her to gain
weight and I will have her eat anything that will help
that. Anyway bread products seem to be the best.
Good luck
— natalyasmom sbs-cpt8312@lists.careplace.com
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text below this line will be cut off in your replyI’ve never been in a forum, but I need other parents
who understand about having a short-bowel child. I
said all this in my intro cuz I didn’t realize how
this worked…I have an 11-month old who was born
with gastroschesis & was left w/35 cm sm bowel & 40%
colon. She was thankfully only on TPN for 2 months.
She’s now getting Elecare thru feeding tube & I
breastfeed her. Recently we’ve started giving
her “real” food & now she has a HORRIBLE diaper
rash. My dr is frustrating me, so I thought it
might be better to talk to other moms that have been
thru this. When I asked what to feed her, he said
to just try things & see how they effect her - we’ve
tried bananas, mango, sweet potatos, spinach, green
beans, cheerios, avacado, crackers & baby cereal
(she hated the cereal). I thought my dr would tell
me certain things that are easier to digest or less
acidic. Has anyone found success with certain foods
or certain foods to stay away from? I think the
diaper rash is related, but I can’t get it to heal.
Her poor bottom is very raw & bleeding. We’ve tried
aveeno, desitin, nistatin, patrolem jelly, aquaphor,
corn starch, triple paste, citric-aid skin paste
(when I called the dr that’s what he had me get).
It’s gotten worse, so I replaced her formula
w/pedialyte today. She normally gains 1 lb/mo, but
she’s gained 1 lb in 2 weeks since we started
feeding her. So it’s helpin
g her
gain wt, but it’s tearing up her butt. Has anyone
dealt with this? Any suggestions? I would love to
hear from someone!__
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Thank you so much for responding! I actuallty wrote this response the next day, but it was during a storm & the power went out so I guess it didn’t get posted. Anyway, I took her to the dr the next day & it turned out to be a fungal infection. He had me put Nystatin & Hydrocortisone on it. It cleared up in a couple days. So he doesn’t think it was related to her diet, he said they just get these infections sometimes.
We had a very exciting change at that visit! He has her on tube feedings 12 hrs at night at 50 ml/hr. What a blessing! I feel like a finally have a normal baby during the day. - WIRELESS!! She just started crawling. I can nurse her & feed her whatever she tolerates. So I feel like were on the right path. Thanks for your info!
I will be out of the office Wednesday April 9th thru Monday April 14th. For immediate attention please email Linda Taylor @ ltaylor@color-art.com 314-432-3000x608