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Old 12-02-2011, 10:57 PM   #1
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laura987 HB User
Megacolon is there a cure???

My 13 yr old daughter was diagnosed with megacolon when she was an infant back in 98. She has been on Miralax and xrays and tests showed that it doesnt work it only moves the water her colon doesnt absorb and the stool stays. She has used suppositories and liquid enimas and nothing works. Childrens Hospital in Seattle washington said when she gets older it can be treated by operating is this true?? If so why has it been 13 yrs and my poor child still has to cry and fear going potty because it hurts so much??? Does anybody have any idea or have the experience to help out? Im desperate to make my daughter feel better. Please Help!!! We are in TX.

 
Old 12-03-2011, 05:45 AM   #2
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rja009 HB User
Re: Megacolon is there a cure???

from what I am reading, if laxatives and similar treatment does not work surgery is possible. Either partial or complete removal of colon. It did not recommend an age or anything for resorting to surgery. I did see it recommended a laxative could help. I use fletchers senna for kids works well. In theory, it shouldn't create dependency and seems to be gentle. That is what I give my little one anyhow. I hope you are able to find her some relief! I would try talking with other doctors until you find one willing to help her more. Best of luck!

 
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Old 12-06-2011, 08:41 PM   #3
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Re: Megacolon is there a cure???

Thank you for your suggestion. We found out her colon has no elasticity left and the stool just builds up and her colon absorb all the water her colon needs to move her bowels. Her colon acts as a trash compactor just builds and builds until theres just no room and eventually pushes itself out. I really hope we can find a doctor to help her the search has been horrible and she keeps beggin for help.

 
Old 12-08-2011, 04:07 PM   #4
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Re: Megacolon is there a cure???

you are welcome! Best of luck!

 
Old 12-18-2011, 10:57 AM   #5
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Re: Megacolon is there a cure???

My 2 year old daughter has been having a similar problem on and off for about a year now - megacolon and rectal prolapse. It has been getting more frequent recently and I'm really starting to worry that if we don't get rid of it now it will only get worse. Like you I've started surfing the medical blogs for answers.

When we originally told the doctor (about a year ago) our daughter's symptoms she didn't really seem to believe us and was telling us it was probably hemorrhoids. She told us to give her high fibre foods to prevent constipation. Our diet was pretty healthy and high fibre to begin with (we are mostly vegetarian so she rarely eats meat and we eat lots of legumes and other veggies) but we pumped her full of more fibre and it hasn't seemed to make any difference. We make sure she drinks lots of water and she snacks on fruit almost all day. She also has a bottle of water with her during the day and is constantly drinking from it. Even with all she drinks, she frequently wakes up in the middle of the night begging for more water. (btw - in case you were wondering - She does not have any other signs/symptoms of cystic fibrosis and diabetes does not run in either family.)

Finally (last month) I took a photo of the stool and rectal prolapse and gave it to the doctor. She looked kinda shocked and decided to refer us to a specialist - but where we live in Canada that could be months before we can even get an appointment. At least now she believes us.

While I was surfing on a medical blog yesterday from Australia/New Zealand - noted there was one mother who finally took her son to a naturopath after the doctors were saying there was no cure. The naturopath diagnosed that the child was lactose and gluten intolerant. The parents immediately took their child off of both foods containing lactose and gluten and they said their child hasn't had bowel problems since! Something about that started to make sence. I'm starting to believe it is a diet trigger with my child as well because the problem originally only happened when she was staying at the grandparent's houses and their conventional diet is different from ours. We also have both lactose intolerance (my dad) and celiac disease (my cousin) in our family - so this also makes sense. I have allergies and have always found the allergy symptoms seem to go away when I have the will power to avoid bread and other wheat products when the pollen starts to fly. My allergies to pollen and some animals are always worse when I've been eating bread or pizza. Both my husband and my daughter have the occasional bout of eczema - also another possible result of lactose intolerance.

Yesterday we went grocery shopping with a new "family diet" in mind - will keep you posted on the results. It may of course - be some other or a combination of other foods, but I will keep trying the other diets. Because she is only two - and doesn't have all her teeth - things may be complicated because she isn't chewing her food enough before it goes down into her system.

I believe there IS a solution out there for both your daughter and mine. My instinct is telling me the underlying cause is food allergy or food intolerance related.

 
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