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Thread: Doctors are no help... I need answers!!

  1. #1
    Junior Member
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    Doctors are no help... I need answers!!

    My 4 year old son with delta F508 genes, has had bad stomach pain for the past few months. Most of the time itís right after he eats and often times, he takes a few bites of his food and canít eat any more because his belly hurts. He poops once or twice a day and they look normal but they are always floating. I took him to his CF doctors and they gave me acid reflux medicine... I donít think itís that because my son points to his belly button when I ask where it hurts. Anyone else have this problem? What did you do? This is killing me to watch him suffer multiple times a day and canít do anything for him.

  2. #2
    Senior Member
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    I had this problem when I was younger and my doctor changed the type of enzyme I was on. He thought it was more mental than anything and I don't remember having issues after. But I wonder if he's constipated. With CF patients we can still have bowel movements and be backed up as well. That might be the case.

  3. #3
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    Thank you!!! Maybe he is constipated. I may try some form of laxative to see if that helps

  4. #4
    Senior Member
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    I would definately readdress this with his doctor and his nutritionist. Is he gaining weight ok? Does he need his enzymes adjusted? Could he be constipated? From a young age; I gave my daughter prune juice every day to keep her bowels moving(yes you can be constipated even if you poop). I would do half apple juice/half prune juice. Now she drinks "Prune juice soda" Half prune juice half diet coke, everyday, she is a teen now. She even asks for it. It tastes like cherry coke(according to her). she also needs miralax everyday( to keep things moving, she has had really bad constipation in the past, which is a whole other long story) She also has a good diet full of fruit, veggies, dried fruit(like apricots, sweet potato) All things to help her poo.

  5. #5
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    Hmmm I think Iíll do the prune juice/apple juice mixture! Thatís a great idea, thank you so much!!

  6. #6
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    DS had issues when he was younger with constipation/DIOS. He'd still stool, but when he got plugged up, it'd be very loose and his tummy would get very distended, his eating would decrease and sometimes he'd vomit. So we'd have to use a laxative --- cherry milk of magnesia worked for us. His doctor indicated after xrays that he had a large amount of stool in his colon and what he was stooling, was just working it's way around the major stuff.

    When he got older, his eating decreased, he'd eat a few bites and say he was full. Sometimes if he ate very well, he'd throw it up. Once he at a happy meal and barfed it up in the car 6 hours later. Little bits of French fries everywhere. In his case, he'd had surgery as a newborn for a blockage caused by meconium ileus and apparently there was scar tissue/adhesions that slowed down his digestion and prevented his enzymes from getting where they were supposed to go in a timely manner. Eventually he ended up with a blockage and surgeons had to remove the adhesions. And it did the trick. He was able to eat more, stools were actually normal.... The only reason I'm sharing this with you is because we struggled for a long time, probably the first 6 years of his life with trying to get food in him and maintain a normal weight. We tried everything -- a log with what he ate, what came out, what meds he'd been taking (we'd thought at first it was his azithromycin) to find a common theme....

    I'd also visit with your CF clinic, see if they has a gastro specialist. Could be enzymes need to be adjusted, could be he needs a laxative on a regular basis....
    Parent to a child wcf double delta f508.

    Started Orkambi July 2015
    Began Symdeko August 2018

  7. #7
    Senior Member
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    All CF patients produce and swallow mucus. The mucus mixes with food in the digestive process. Mucus is a sticky substance and will, with digested (stool) food, stick to the walls of the colon. This causes a expansion of the colon and will cause pain. If your son is being seen at an APPROVED CYSTIC FIBROSIS CLINIC by a CYSTIC FIBROSIS SPECIALIST, mention this post to him/her. If your son is not being seen at an APPROVED CF CLINIC use this link to find one in your area. www.cff.org
    Male 77 CF undetected until age 47. (First symptoms at age 3) Delta F508 & V562I with one copy of Variant 5T. 100% PI. MAC, CFRD.

  8. #8
    My nephew will indicate that something is wrong with his tummy and get really cranky when his enzymes need to be increased. He also eats less because his tummy hurts. A day or two after increasing them he's back to himself. Hope this helps you!

  9. #9
    If his poop is floating it usually means there is too much fat in it and he may well simply need more enzymes. In addition: plenty of water, fruits and vegetables and tummy massages can help as well.
    Mother of a beautiful, spirited, creative and adventurous little girl with DDF508 x2

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