stomach aches

[cfgf28]

My fiance has cf, diagnosed as a baby. He is PI, takes enzymes with all food. He has stomach aches almost daily and feels it's just something he has to deal with as part of cf. When he gets them many times he skips therapy as he doesn't want to shake on top of feeling queasy. He doesn't eat well whwn his stomach hurts either. He doesn't tell his doctors that its a nearly daily issue. I told him when he goes to his next appointment he needs to be his own advocate and tell them how bad it is and tell them that the clean out they suggested the last time only made things better for a week or 2. And make sure they try something else, give him something else to hopefully remedy it. . What do you do for stomach aches? I don't feel like this should be an everyday just put up with it because you have cf issue.

 

[Aboveallislove]

Our son who is 5 has had that same issue since he was a baby. I still don't think they know exactly what the problem is, or if this is "CF life," but I don't think it is because he had one spell of about 6 months without any pain (other than random normal kid stuff) and is on about 6 weeks on that spell too. The things that seem to work are keeping him stooling very frequently and keeping the gut bacteria in check. If the clean out work for a couple weeks that tells me that is the problem, which also screws up the gut bacteria. If it were me, I'd call the doctor tell them that it worked for a couple weeks and now same daily pain and see if they will order a belly xray to see stool load and to do a clean out AND then a daily maintenance. Is he doing daily maintenance to stay cleared out? Our son dose daily 2.5 doses of Miralax and 6 ml of Milk of Magnesia...when we titrated it back it was the end of his 6 good months! We also added 2 culturelles a day and that is what started his first good 6 months. I'd start there...getting a clean out, doing daily maintenance and duing daily culturelle. And possibly seeing if they can treat for a bacterial overgrowth which is flaygl. If he's on lots of antibiotics and/or has been backed up, both make the gi tracks "bad bacteria" overwhelm the good. Our son has gotten back on track 2 times from flagyl (and then a flagyl like equivalent). They can test the stool for bacterial overgrowth but our son's never showed a problem but it seemed to work. Also, he needs to drink lots of water and don't count the water he mixes with miralax. In addition to 32-40 ounces of a drink supplement and 20 ounces of water for miralax, our son has about 32 ounces of water a day and this schedule of things has us in a great spot (for now). Good luck and feel free to have him send me a note to follow up on any questions because our son was experiencing just what he is...daily tummy aches and I can't tell you how much better life is without that!

 

[Printer]

I would GOOGLE Steven D. Freedman, MD, PhD. He is located in Boston at the Beth Israel Deaconess Medical Center.

Bill

 

[cfgf28]

He drinks plenty, does not do miralax or anything else daily, and is not on antibiotics very often. He told them he was getting stomach aches and asked if he should do something daily, does he need more fiber, a probiotic etc..but all they said is try the clean out...he upped enzymes a while back, and maybe that helped with greasy stools but the issue isn't not going, he goes plenty...but I guess we will ask again at the next visit. It's difficult since we are a couple hours from the doctor... and being an adult and working full time makes it hard to take off for anything...

 

[Printer]

cgfg:

I had all the same issues. The key here is he is PI. He needs to see a CF Gastro Specialist.

Bill

 

[Michael Allison]

His pancreas could be going chronic. CFGI specialist recommended

 

[kyeev]

he upped enzymes a while back, and maybe that helped with greasy stools

Well, there's your starting point, up the enzymes.
Has he changed his dose as he's got older? Or is he on the same dose he was on years ago.
I used to take 5 creon as a kid aged 9 or 10, then had to up it every year as I got bigger.
You can't expect your body to be able to manage on 5 or 6 tablets when you're completely pancreatic insufficient and a fully grown man eating man size dinners!
For example, I currently take 12 x creon 25000 with main meals.
I'd probably need about 25 if I was still on the creon 10000.
Is he anywhere near that kind of dose?

You just need to watch out for constipation/blockage issues.
So up the dose by one tablet each week.
Ideally you should do this in conjuction with your doctor, but if he won't even mention it to doctor, then thats kinda difficult...

 

[RobinB29]

Get checked for Celiacs. My docs upped my enzymes, upped my acid reflux meds (is he on anything for that?), tried everything and it didn't matter. Also, if he isn't on nexium or something for acid it can cause major issues. I thought my doc was crazy for suggesting it cause I thought, "I don't have heart burn." I just had massive gas, pain, nausea and vomiting. A few days on nexium and I was a new woman. So those would be my only suggestions really. I don't think daily stomach pain has to be a part of CF, but I know we are all different. I hope he can get a solution.

 

[cfgf28]

He takes 6 creon 25000 with meals and 4 with snacks, this was upped within probably the last year, I'm just not sure that it ever helped the stomach aches... he already takes prilosec. I just wonder if he does need something else looked into since he seems to think he's always had stomach aches...but chalks it up to a cf thing...I feel lIke while yes it could be due to cf, but it should be something manageable...

 

[Aboveallislove]

As I mentioned before, our son who is 5 1/2, has suffered horrible tummy aches as his "normal." He'd be on good, stable, fair, poor, bad cycles and my brother who is a doctor and whom I asked for advise on how to handle the logistics/egos of getting a second opinion said "that might be his 'normal'" Our ped also said that another GI wouldn't likely say anything different (our ped I think is 100% better than any of the other doctors, so I trust his judgment a lot!). But I kept pushing, researching, getting input from other CFers, while working with current GI and working on a referral and then when he finished a flagyl course, added probiotics, and a stable higher miralax and milk of mag he had 6 months without problems! It started up again when we tried to tritrate the miralax and milk of mag down. After several bad months of trying things, we did flagyl again only because it worked last time...there was nothing to show it was needed, and I upped the miralax. Now we're on 2 good months. I'm eliminating two foods that seem to back him up entirely--they were very limited before--and keeping on the higher dose of miralax and things are going smoothly (literally and figuratively). That's the long way of me saying I think that it is a GI issue that can be addressed and that he needs to get cleaned out and then do a daily maintenance and probiotics. What you are describing is what my son experienced, but didn't for 6 months and now 2 months. To me, if it is "CF" then that wouldn't logically happen.

 

[LittleLab4CF]

Abdominal problems related to CF can be nearly impossible to fine tune and manage well. I'd like to second Printer's straight forward advice and if possible, see Dr. Steven D. Freedman at BIDC Boston. A lot has come out of the Cleveland Clinic recently and they, like Dr. Freedman prefers to let science prevail. Even though a pancreas has atrophied it can still cause problems and that is just the tip of the iceberg.

Adjusting the type, quantity and timing of enzymes is called titration. I don't know how well CF children are tuned into the proper amount of enzymes but I hope it is better than adult treatment of the problem. In spite of repeated requests for some interactive guidance in tuning my enzyme use, my local GI doctor(s) have been less than helpful. The limit of their advice doesn't exceed what I have already gleaned from internet searches.

If you consider Creon's dosing table for adults, the appropriate dosing range is 500 IU/KG body weight to 2500 IU/Kg bpdy weight per meal. Imagine your monthly income ranging from $500 to $2500 and you're trying to budget. My regular GI doctor just retired and I'm really looking forward to my new GI doc. Actually he's been my wife's GI specialist for a long time but on her last visit, he announced he was taking a weekend course on CF! This is about as close as most of us will get to a CFGI doctor.

I know that everybody can't hop a plane to Boston just to see a doctor. But, if there is any way to see Dr. Freedman, he's been doing concurrent CFGI research and seeing CFers who need a significant adjustment in their enzyme regiment since 2002. It is very good advice Printer offers. I'm just saying it's worth the effort.

LL

 

[Diana4Natasha]

Hi, new here, I joined as my daughter of 12 seems to have the same issues as your son. The tummy pains are part of her life. It's been a bigger problem since she started high school, been missing classes a lot and spending hours in the washroom. I had a good three months this summer but started again, it seems pretty intense this time. Drs say she's the only one in the clinic with this problem. Others seem to manage well with the enzymes! Pretty frustrating. Her GI, very nice, is looking for other things. We keep increasing enzymes, but when she was well this summer, she was taking less enzymes. Everything changed after she had a cold and stomach flu, we added periactin to help her eat more as had lost a lot of weight. Do you give your son two culturelle at once or morn and evening? I would like to try that, my daughter w as on this probiotic this summer but I changed to BioK after the stomach flu. She takes heavy laxatives every two weeks to do some cleaning but since last week, we are doing it every week, we had to do it again as she missed school for extremely intense pain (11 out of 10).
I am glad I can relate to some mothers in the forum. It's hard to fight alone.

diana4Natasha
dddelta508

 

[Aboveallislove]

Dear Mom,

I am so sorry for your worry and your daughters pain. It is even harder after having a "normal" time period. Our son does one culturelle in the am and one in the pm. When she had the cold/stomach flu did she have any antibiotics? Is she on those much? That can change the gut flora which can lead to a bacterial overgrowth. One thing that you might want to ask the doctor is whether to do one course of Flagyl (or a flagyl like drug) to see if it helps. Our old GI was fine with that. Our new GI wanted evidence that there was a problem--I understand you don't want to needlessly treat, but it worked the time before. And his ped who is amazing said that they had a non cf patient who they didn't know why, but it worked. I wouldn't suggest this be the "norm" but that might be a good try to just see if it helps--especially if she's on antibiotics fairly regularly. The other thing is the laxatives are a "norm" maintenance daily as opposes to a "clean out". I wonder if that might be a good option too. Good luck.

 

[Aboveallislove]

A few more thoughts: You mention she is in the bathroom for hours. Does she have diarhea/a lot of stools? That’s a sign of bacterial overgrowth. Does she have a drano going down the pipes sound in her GI track? Ditto on the bacterial overgrowth. Did they test her for C-diff? Also, another thing that helped was dear son drinks an extra 8 ounces of water with salt above his 32 ounces of drink supplement and 20 ounces of water with the miralax. His problems always seem to follow a molasse consistency of stool or less stooling (1-2 a day as oppose to 3-4).

Finally, out of curiosity, did the periactin help with the stomach pain? The Gis kept suggesting that that would help our son with his stomach aches. I didn’t like the idea because I feared it would mask the problem and I thought there was a problem and that they needed to figure out what it was. I am more convinced than ever on that because you don’t just have twitchy GI nerves "sometimes" (i.e. 10 times a day for months at a time) and NONE for 6 months at a time. So I’m wondering if you could help me to know if it helped with the pain at all or just helped with her appetite (which DS’s sucked too when he was having his daily stomach aches.)

 

[Diana4Natasha]

Hi, thanks for your answer. My daughter is already on laxaday 17g everyday, and drinks lots of water. I am thinking of increasing to two doses a day to see if it helps doing less "bombs" as the dr calls it. The good period started after she got IV in May. She also started culturelle, one a day. I suspect the side effects being loose stool, it helped her stay empty. I will certainly check with the dr for Flagyl or equivalent, as we live in Canada. Otherwise she does not take too much antibiotic. The policy here is really give it as less as possible. It takes longer for colds but takes Tobi when needed.Have you tried any natural remedies like senna or castor oil? Our GI now is thinking of doing a colonoscopy!!
when she spends time in the washroom, her stool is soft. She feels, it's coming so she stays longer. I think being seated must help too. She usually goes 3 times a day so hard to know when it's constipation. The bomb is so much relief even if she rushes to tho bathroom.
I personnaly think, looking back, that periactin increased the problem. She is eating much more, so more enzyme imbalance, and more malbsorption and more pain. It seems that must screw the GI track so she is more inclined to have other problems. She did not have this pain that often before we started periactin. In the long run, it did not improve her growth or weight gain. It's been up and down. If you want to start Periactin, go very slowly and adjust the enzymes accordingly. But again each kid is different so it might work better for your little one.
I am just frustated that drs do not make the connection and keep increasing enzymes, which increases the blokage.
Being more aware of other kids with cf having the same type of probem, it gives me more arguments to discuss with them.
I am really discouraged lately, glad to speak to someone and share. Thanks again.

 

[Aboveallislove]

Our son is one 2.5 does of miralax a day and 6 ml of milk of magnesia. The last problem started when I tried titrationg it down! It ended after the flaygl like drug and increased up to 3 and then back to 2.5. They gave us a protocol for a clean out to try if the stomach problems started again and that included adding senna. We haven't tried it yet because we've been on a good stretch. Also, FYI...we JUST learned last gi appointment that water mixed with miralax doesn't count as a fluid because what the med does to it. If it were me, before doing a colonoscopy, I'd try a full clean out, 2x a day maintence, a course of flagyl, and culturelle and stop the pertain and see if it rectifies it. And yes, I know what you mean...it seems that they don't k ow what is going on and it is five things all at once and it's a matter f trial and error and watching.

 

[AH11201]

I used to have bad stomach pains, but thankfully they're rare now. I agree with the suggestion to try probiotics (and different brands if one doesn't work, because each one has different strains) and especially to try diet modification. Try cutting out processed foods and gluten (including gluten-free fake foods like cookies and things) and see if that helps at all, and maybe also try eliminating dairy for a time. I'm still in the process of experimenting with my diet and my particular food intolerances, but I'm doing much, much better.

 

[Diana4Natasha]

That's a good idea. I can cut down on milk products, add culturelle twice a day and see what it does. Next step would be gluten. She used to be lactose intolerant when she was a baby but we stop all milk products for a month and everything was back to normal. I just spoke with the doctor as she's in pain again today, despite the big flush we did a couple of days ago. The dr and cf nurse were both confused and say her case is complex. They did not have a clue. Wonderful! Even the medical team can't help!
I am worried because when she's in pain, she can't exercise, and she need to for her lungs. She eats less and loses weight. No good at all. I usually give her very rich hot chocolate with scandishake, cream and butter to help her maintain her weight. If I stop milk, what can I give her? She needs that extra boost everyday. Any idea?
Totally confused mom.

 

[Aboveallislove]

Hey mom, our son is on bast plus essentials which is 360 calories per day and he drinks 4-5 plus ears. It is dairy and gluten free. Our insurance covers with a script. Also, if she was eating the same as always during good summer, it wouldn't seem to be dairy or gluten. Is she on zantac and Prilosac? Have they downe a flat belly X-ray? If they haven't done an X-ray they should to see if she is F.O.S. or has a partial blockage somewhere (that's full of stool.)

 

[Diana4Natasha]

She already takes 60 mg prevacid per day. They never do a belly xray unless I go to the ER when xtreme belly pain. It happened 18 months ago. What's Prozilac for? Where d'you get the supplements you give your son? I am ready to try anything right now. Otherwise she'll end up in the hospital again!
I don't thing she's allergic to any food but it seems her intestine became very sensitive and she might not tolerate certain things. Everything started in mid september, she had a cold and a stomach flu , she had lost so much weight and no appetite. I decided to change her probiotics to BioK and started periactin again. I feel guilty now, why did I change?
during the summer, she was stable, eating big meals with fewer enzymes and no problems. no supplements, and gaining weight. Going to the gym everyday. She was really excited about being and feeling better, she thought she would miss less school and be more active. Well...