Foul gas

anonymous

New member
I have a six-year old son with Cystic Fibrosis. He was thought to have CF in my womb (meconium ilieus). He was officially diagnosed at 6 weeks of age. My son is currently experiencing a tremendous amount of gas which is very foul smelling. The doctors say it is malabsorption. He is also having frequent episodes of diahrrea. He is going to have an upper GI done during Spring Break next week. They are thinking it may be "short gut syndrome." He had a large amount of intestine removed when he was a baby. They are also checking stool samples for bacteria and fecal fat. We are praying that the malabsorption can be corrected without surgery. He takes Creon 10 enzymes for snacks and meals with fat or protein. We already tried increasing the amount of enzymes, nothing changed. He is also on Zantac to reduce the acid in his stomach, which allows the enzymes to work better. Lactose intolerance is not a possibilty, because it also occurs without Lactose products. Is there anyone out there that can suggest something to reduce the amount of gas expelled, or to decrease the odor? Kids around him at school are starting to say "Who cut the cheese?" They don't suspect that it is him, but he knows. Any ideas?
 

MJS

New member
Is his weight an issue? The enzymes & malabsorbtion would be more the culprit if his weight is a struggle. If not it could just be his diet. Just like when a Mother is breast feeding, she has to be careful of certain foods because they have a high acidic content. The same goes for anyone that has a delicate digestive tract. I have major problems with soda & orange juice. I also have a problem with Chinese food. This is going to sound REALLY gross, but with CF we cant beat around the bush. Depending on what Chinese food I eat, sometimes the gas that I get from it smells exactly like what I just smelled while eating it. I dont get diahrea, but terrible gas. Ask your doctor about it, but keep track of his food/drink intake & see if there is a pattern. Maybe you will be lucky & it is something simple. Good Luck!<img src="i/expressions/face-icon-small-blush.gif" border="0">
 

anonymous

New member
I take it you have CF. How old are you? Weight is a huge issue for my son. He weighs 37 pounds and he is six years old. That is a great idea to record his intake and look for a pattern. Thanks. Take Care. Gina<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
I also have a son with CF (he will be 5 in May). He was diagnosed at age two. He also started out on Creon 10 - but after a year, he still was having malabsorption problems (lots of gas, stomach pains, and basically no change in his stools - they were still large, greasy and foul smelling). We tried prevacid (an antacid), but that didn't help either. Finally we switched him to pancrecarb. It is an enzyme like creon; however it has bicarbonate in it to help with stomach acids. Your doctor could explain it better than me, but basically this bicarbonate helps get the enzymes into the stomach intact so that it can maximize it's effect. Our son takes Pancrecarb with every meal along along with prevacid twice a day. For him, it has been a world of difference. He is down to one (maybe two) formed stools a day. I know everybody is different (and not all medicines/enzymes are good for all people), but I would definitely ask your doctor about these enzymes. If he doesn't recomend them for your son, perhaps another enzyme would help him.Hope this helps. Good luck.
 

MJS

New member
I am 35 years old today. I was diagnosed at 7 after tons of allergy testing. At the time the digestion, cramps, diahrea etc were the issue. Later on the lungs became more involved. In the last few years I switched to a new enzyme. For years after diagnosis I used Viokase as my enzyme then for years I took myself off because for some reason (maybe hormonal since it was puberty time) I no longer had diahrea. My weight wasnt a real issue, but later on testing proved that even tho my weight was ok & I didnt have diahrea etc; I was still loosing a lot of fat through my stools so we went onto a new enzyme, Pancrease. It worked great for me, but for financial reason I was switched to Ultrase MT10 so I would get free shakes from the manufacturer of the enzyme. It took a bit of adjusting the dosage for my body to work right using the Ultrase. Since weight is an issue for your little one, maybe the enzyme needs to be changed or dosage adjusted. Sometimes each person has unique needs with the same med & trial/error are the only solution. My 5 year old daughter (CF free) is 48 1/2 inches tall & weighs 42 lbs. Of course the worry of her health isnt as big of an issue as with your son, but my whole family (I am the only one with CF out of 7 kids) is small framed/build. Now add the CF issue & chances of being "heavy" at any given point is unlikely. Until I was pregnanct, I never had hips. Good Luck! <img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
My daughter is 18 now and was misdiagnosed at 5. She was diagnosed with CF two years ago. She had the diarrhea and foul smelling gas since she was an infant. Her diagnosis at 5 was malabsorption and we went through numerous gastric testings. She was on enzymes but still had the foul gas (Really bad.....could stink up the whole house). As you said, it's hard around other kids when it escapes no matter how hard she tried to hold it in. She has had many embarrassing episodes and we really had to watch what she ate if she was going anywhere. We had good luck with anti-gas meds like phazyme and beeno. However, when she was diagnosed with the CF two years ago the dietician said she should not have to live with this kind of problem and she increased her enzymes. This worked like a miracle and we've really put it to the test with chili, buffalo wings, pizza, etc. I can't believe we went all those years and all it took was more enzymes. Talk to his dietician again....it may take yet another increased dose or a different enzyme. My daughter has been on Pancrease and now is on Creon 10. She takes usually 5 capsules with ALL meals and snacks......no matter what she eats we were told she needs the enzymes.Hope this helps.
 

anonymous

New member
You may need to switch enzymes. My doctor said not all enzymes work well for everyone. There are so many enzymes out there why stick with one that doesn't work. Increasing the amount may also help.
 

anonymous

New member
Hi,My daughter is four with CF. I was thinking about this post and I wanted to know if your son has a g-tube or ng-tube for supplimental feeds? (being 6 and 37 lbs.) My little girl has a g-tube (4 and 37+l bs thanks to the tube feeds) and I notice that she has more gas and looser stools after her feeds if they are larger than "normal" even though her enzymes are increased with the additional feed. normally she gets one can (250ml) of peptamin 1.5 six days a week but if she hasn't eaten well for me they told me to give one and a half cans. I feel that it has to do with the enzymes though as the ones she takes in the g-tube (powdered viokase) are less effective for her than her ususal enzyme (creon 5). bring it up at your next visit or call your CF center, maybe he just needs to change brands. My daughter also took zantac but it didn't make a difference with the gas or stools.Andrea
 

anonymous

New member
Hi everyone, Thanks for all of the advice. I will ask the doctor about Pancreacarb. I haven't heard of that one. He may just need to increase his current dosage. He takes 3 Creon 10 for meals and 2 for snacks. To Andrea, my son does have a g-tube which saved his life. When he was younger we did tube feedings through the night. Now he just drinks 3-4 cans of Pediasure a day in addition to meals. He loves Pediasure! He is also a very picky eater. Is that common for children with CF? Anyways, thanks for all of the suggestions. Gina<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

Drea

New member
Hi Gina,I think being a picky eater is normal for his age, I'm not sure if it has to do with CF. My daughter at four says that she wants stuff but then won;t eat it (She always wants cheeseburgers at fast food places but never eats them - just the pickles) Do you find that he likes stuff that you're surprised about. Rachel loves veggies and she used to want spicy food a lot (she likes salsa and garlic) If you don't use a lot of spices try using more to see if it peaks his interest. I was told a long time ago that kids with CF often like the spicier stuff for some reason (this doesn't always sit well in terms of reflux tho) Have you discussed it with the dietition at the clinic?Andrea
 

Drea

New member
Hi, I give my daughter the creon 5 at the begining (since she is awake then) and the viokase half way through. (she doesn't feed all night, we give a bolis in the evening) when I did it with the viokase at the begining and end it was worse. I think more got through without being digested that way. Her doc and nutrtionist suggested useing the creon if she is awake at the begining of the feed since they seem to work well for her. but if she's asleep we use the viokase for both doses. her gas and stools are always worse after we do this so we try to start her feeding before she falls asleep. Andrea
 

anonymous

New member
Thanks for the ideas Andrea. Gabriel had an upper GI done on Monday, they said he has a blind loop of bowel that may have bacteria growth in it. We are going to try something called Flagil. Hopefully this will eliminate the bacteria that may be causing the foul gas. The diahrrea comes and goes. We'll see what happens. Take Care. Gina
 

Charlotte

New member
Hi Gina! I have a 9 year old daughter with cf. She was diagnosed at 7 months. We started with a single enzyme capsule worked up to 6 capsules of Ultrase MT18. This seems like alot but her doctor increased the dose by one capsule each appointment until her stools became formed and fewer, and the gas decreased. She still deals with some gas, I think that is inevitable, but nothing compared to what it was. As far as the school problem is concerned, we have talked alot about that, I have talked to Dani's teachers and explained the situation. They know about the gas problem and they agreed that it would be alright for her to leave the classroom without having to get permission. This way as soon as the urge hits, she can leave and at least make it to the hallway before it happens. They also know about the frequent foul smelling stools, therefore they allow her to use the restroom while all of the other children are in the classroom. These two things have saved her many embarassing moments.I also find this Viokase very interesting. Danielle has a "button" and takes 3 cans of TwoCal HN each night, she takes her regular enzymes before she goes to bed and that's it. I asked once if we needed to give her some during the night and her Dr. said she was doing good as is unless she started having loose and frequent stools again.Best of luck and God Bless, Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">
 
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