My 4 year old son with delta F508 genes, has had bad stomach pain for the past few months. Most of the time it’s right after he eats and often times, he takes a few bites of his food and can’t 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 don’t think it’s 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 can’t do anything for him.
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Doctors are no help... I need answers!!
- Thread starter Camsmommy
- Start date
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.
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.
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....
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....
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
fallenevilangel0
New member
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!
Helenlight
New member
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.
S
SeeEff
Guest
Hi Camsmommy,
I was diagnosed with CF at 4 months old -so that is where I am coming from with my feelings - I am not a doctor.
I know that if I do not have my enzymes when I eat, it's not good.
Is your son currently taking enzymes (Creon, Ultrase) when he eats?
It sounds like his body needs help digesting food.
If his body cannot break down/ digest food on his own - It's really important that he takes these or this type of medication when he eats anything.
Since he is so young it's difficult to know everything that is going on inside him.
I would really try nail down the cause of this issue before trying any sort of laxative, relfux, or remedies.
When you say "the doctors are no help" - the doctors you are seeing/asking - are they actually trained for CF or are they doctors that have some CF knowledge?
If not, it would be a really good thing to seek out a CF specialty clinic - where that is what they deal with all day.
I hope your son feels better very soon!
I was diagnosed with CF at 4 months old -so that is where I am coming from with my feelings - I am not a doctor.
I know that if I do not have my enzymes when I eat, it's not good.
Is your son currently taking enzymes (Creon, Ultrase) when he eats?
It sounds like his body needs help digesting food.
If his body cannot break down/ digest food on his own - It's really important that he takes these or this type of medication when he eats anything.
Since he is so young it's difficult to know everything that is going on inside him.
I would really try nail down the cause of this issue before trying any sort of laxative, relfux, or remedies.
When you say "the doctors are no help" - the doctors you are seeing/asking - are they actually trained for CF or are they doctors that have some CF knowledge?
If not, it would be a really good thing to seek out a CF specialty clinic - where that is what they deal with all day.
I hope your son feels better very soon!
My 4 year old son with delta F508 genes, has had bad stomach pain for the past few months. Most of the time itÂ’s right after he eats and often times, he takes a few bites of his food and canÂ’t 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 donÂ’t think itÂ’s 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 canÂ’t do anything for him.