stomach aches

[Aboveallislove]

Diana,
thanks again for wonderful detail. A few questions, if you don't mind: What is "the bomb?" And what is bissacodyl? Is the plan for the first month to do that EVERY Saturday prophylactically? Would the golylightly be prophylactically as well or only in response to pain? Did you put her back on periactin or is she just hungry because she doesn't have a tummy ache and has catch up weight to gain?
We ended up uping Miralax 1/2 a dose for and then a second 1/2 dose about 4 days and then 6 and then went back down and has been in great shape pain wise but his stool doesn't seem the quantity I'd expect (he is eating A TON), but watching and waiting. We go to GI in February and I'm going to asked about that Functional Abdominal Pain Syndrome. Thank you SO much for pointing that out because reading about it I think that's what GIs thought the issue was and I don't; I think it is a stool build up getting stuck in corners. So I'll see his thoughts given that when we followed their protocol it helped (which I can't see it doing if it was FAPS!). Also, I want to see their thoughts on whether doing a monthly clean out is a good idea versus doning the ratchet up and done like I did; versus the ratchet up and bomb when needed. I'll definitely update when we get any more info. And please do the same! Life is sooooo much better when the tummy isn't a 10x a day issue. It's night and day!!! And we're going on I want to say 4 months of a "good phase".

 

[Diana4Natasha]

Hi here are some answers:
What is "the bomb?" The bomb is 8 doses of laxaday with 700 ml of powerade or gatorade
And what is bisacodyl? It's a medication for constipation, the stool comes faster, to give once a week.
Is the plan for the first month to do that EVERY Saturday prophylactically? Yes, try it and see how it goes.
Would the golylightly be prophylactically as well or only in response to pain? Yes, We will only start golitely if the bomb laxaday does not work, it's an alternative to laxaday.
Did you put her back on periactin or is she just hungry because she doesn't have a tummy ache and has catch up weight to gain? No periactin yet and is hungry because she feels empty.
Don't forget, the objective is NO pain, and we know now what the problem is.
I used to do like you: two doses twice a day for two days and then back to one. It would take her longer to clear out.Then another dr suggested this bomb, i find it's faster.
Before starting a medication like periactin, it's better to see what the problem is really. My daughter had an appetite problem a few years ago and she was underweight, if your son doesn't, he will eat like crazy, my daughter was starving all the time,. It means also more poop, more enzymes, maybe more oil in the stool, and maybe more pain. It was our case. I think the periactin helped her try different foods. I don't think she needs it now as she eats well. It makes you sleepy too, it was very hard to wake her up in the morning!
Try the bomb or their version of it and see what happens. It won't hurt and it' s not invasive. I find, Pain ten times a day is a lot. And at night too?? It's too much. How do you determine how much enzyme you give him? You seem to calculate it based on fat, it was never give a certain number of enzymes for certain grams of fat, they always based it on symptoms.
You should discuss different plans with them.
I wish they had been more aggresive and do more belly xray, use golitely earlier, but since she was gaining weight, and had good pfts , it was fine. When her pft went down she got IV right away, they were very fast. So ...don't give up until they find what the problem is.
I agree life is much easier and more "normal " without pain.
It would be good to find the right protocol for good phases only, no more bad phases. Wish you all the luck for your son.

 

[chrissie9000]

Hi.As my son grew older the docs changed him from Creon 10000 to Creon 25000. Then the stomach aches started. He opted to remain on the Creon 10000. No stomach aches but lots of capsules to swallow. Maybe caused by gradual release of enzyme in the 10000s as opposed to the high dose in one go.

 

[Diana4Natasha]

Hi, How many pills was he taking with creon10? How old was he? My daughter hated taking too many pills in school so we changed.

 

[Angela65a]

Hi there

I hope you don't mind me responding, I live in the uk Northern Ireland(Belfast).

I am 49 and have cf and diabetes, I also get terrible stomach aches, I take a thing called losec 40mg twice a day and it helps a lot, it also helps with the cf gas.

I'm sorry I don't know what the alternative would be in the US, though you could possibly get your fiancé to ask his consultant or dietician.

Hope it clears it is very uncomfortable and you do not feel like eating at all.

Angela (DDF508).

 

[Aboveallislove]

Diana,
Thank you so much and I'm so sorry I missed your response and responding. The added info is very helpful. We dose enzymes on the maximum "allowed" per the label. Our CF doctor says no on going above that. Things have been pretty good now that we are on a higher maintenance dose and then just going up 1/2 for three days if things start up. But the thing I have to thank you most for is pointing me to the Functional Abdonminal Pain which from everything I've read means "there's nothing wrong." And then I looked at his last medical report and they said "Chronic Functional Abdominal Pain" and also constipation as a result of "Functional Constipation" and cystic fibrosis. I'm thinking that sounds completely inconsistent. But it helps because I now think the doctors don't think there was anything wrong! They did give a protocol, though, so when we go back in a month I'm going to try to get a frank discussion going because I think what your daughter and our son had was the sticky stool building up at the ileas (sp?) and as it built up it caused pain and it just continued to build up. I'll let you know what they say, but am so grateful you put me on to the concept of Functional Abdominal Pain because it makes what they've said make a lot more sense and also what they did or didn't do. Your daughter's experience gives me the ability to discuss it better too. I hope she is continuing to do well.

 

[Diana4Natasha]

Hi Aboveall.. We made some new additions in the treatment, Natasha still had severe pain two days after clearing out completely and missed a day of school. Ispoke to the GI who added Flagyl twice a day for 10 days. We will do that once a month and one mini-bomb ( 6 caps laxaday and 2 bissacodyl) weekly as well as two doses everyday. We keep giving culturelle twice a day. I have been reading other threads about GI issues, It's most interesting and gives me more ideas to discuss about with the dr. I still find quite some oil in her stool from time to time, and I can't understand why as she is on high doses of enzymes. I don't know what to think.

 

[Gammaw]

AboveAll and Natasha - Of course I have been following this thread, as many have. I can't imagine the frustration you must both be experiencing. All the usual approaches to solving the belly ache problem appear at least partially ineffective for both of you. There are certainly some things that can't be totally fixed, but it also seems that identifying the cause of problem you're trying to fix is also elusive. Doubly frustrating. My meager suggestion is this - if I see that my doc is confounded, I suggest a second opinion - less threateningly called "a consult". There are at least two potential sources - the members of this forum have no doubt encountered most of the best GI specialists in the CF field. Can I ask them to chime in here and let us know who they might recommend? Secondly, your own GI doc knows the leaders in their field. Ask them who they might consider as worthy of a consult. They might well welcome the idea, and frankly I would hope they do. Just a thought . . !

 

[Aboveallislove]

Dear Gammaw,
Thanks so much for the thought. Printer was gracious enough to get me some names and we were pursuing that when things got better. Unfortunately the GI folks were completely unwilling even as a "consult," likely I think in retrospect now that I know what functional abdominal pain syndrome is, because that's what they concluded he had and you can't "treat" that other than with that med. Our CF doctor has a working relationship with one of the few experts and at first was willing to consult and then pulled back--I think based on GI stuff. It was at that point that we got progress. (I shared with Diana the names as well). Personally, I think we have the "answer" although I don't think the GI has defined the problem. We go back in a month and that will be 6 months of "good" with the protocol they gave. It actually sounds like Diana is getting great progress (now!) and they are doing the things that actually worked with our son (when they eventually did them). But again, in retrospect, I think they diagnosed "functional abdominal pain syndrome) and thus didn't see either the problem of the sticky stool OR bacterial overgrowth--both of which seem controlled now. (And he has seen 5 different GIs (his first was a fellow supervised by various doctors), so in a sense he's had lots of "second opinions" albeit biased ones I think.) Frankly, I just don't know how to handle it other than laying it out and trying to use logic to walk through it because as DH said "what's it matter if they treated him and it worked, what they call it" and the travel and potentially unnecessary tests have their own risks. Augh.

 

[Diana4Natasha]

Aboveall you've had more luck than me. It's been ten days we were without pain but this evenig, here we go again, and we're still on Flagyl. I email my GI and i sm giving her more lacaday. She did not clear out completely last weekend, that could be the reason. She also suggested another probiotic, biogaia.
I did give my GI the names of a couple of doctors , one in Toronto and the other one in Boston. She said she knew them both very well. I think she wants to try everything that's possible on her side first.
Gammaw, you're right, I doesn't hurt to get a second opinion as in my case, I haven't done it yet. We have one GI assigned to the clinic and nobody else. And this is the first GI i've ever met for Natasha. i will insist on her writing to the other GI or I will do it myself.
I fing this forum amazing. I am so glad I am able to get all theses ideas and possibilities. At least, we can keep some hope. Thanks everyone.

 

[Aboveallislove]

Oh Diana, I am soooo very sorry. I know with our son it took about a week after to feel better, but if she isn't clearing that's another issue! I haven't heard of that probiotic, but another poster's GI suggested VSL (which my independent research also indicated was the best, but I couldn't get our CF/GI team to review the info on it for a green light).
Another thought: Really increasing the water intake has helped on our end as well. I think we've added 32 more ounces of water a day which seemed to also correspond to the good spells. (the water used for the meds don't count for "water" we just learned 6 months ago!). In fact, the days dh takes care of ds the water sometimes isn't consumed as much and even one glass less seems to affect his stooling. (I have a game I play that reminds him to drink it.) Please do keep me posted! And I'll say some extra prayers for you all.

 

[Gammaw]

Angela - Good Point about "Losec"! I believe the drug you take in the UK called Losec is known as Omeprazole aka Prilosec here in the U.S. It is a proton pump inhibitor, often (I might even say usually) prescribed to CFers for the acid reflux that accompanies CF. From our personal experience I can imagine the pain you experience without it! Reflux is very painful and acid blockers are extremely helpful! Without it, tummy issues can be extreme. So I wonder if Natasha is on a treatment for acid reflux.

 

[Aboveallislove]

Totally agree re the acid reflux causing pain (and in my mind that's part of the difficulty figuring out what pain is what since I think they come from so many sources). I think, though, that the endoscope Diana's daughter had would have shown if there were acid reflux problems, wouldn't it??? I'm thinking the stuff that didn't clear in the prep is still there building up.

 

[Diana4Natasha]

Hi. Thanks for worriying about us. Natasha used to take losec but then we switched to prevacid 30 mg and then 60mg a day, it worked better with her. She did not have reflux but it was to help the enzymes work better. Aboveall.., i was looking at a website for Biogaia that.'s really interesting. It says it also help kids with FAP. And lots of other things. Maybe you should also keep it in mind for your next appointment, for futur needs...
the link is below and p.10 they talk about the study with CF patients, it' s very brief but to the point.
I wonder if the dosage we got for Flagyll was enough. She should not have had pain this time. I gave her a big glass of the bomb yesterday and lots of water, she kept going to the bathroom, it was watery after a two three times, still watery today as she's been drinking lots of fluid. I think things are clearing out now. We are back to the regular bomb for the weekend. She does not like drinking it anymore, she has nausea.
http://www.oral-probiotica.com/uplo...3-clinical-studies-summary-tables-biogaia.pdf

 

[Diana4Natasha]

One more thing, my GI said she does not want to give VSL as there has not been any study with cf. Weird as they talk about it inthe link I sent. Maybe I should send it to my GI also!

 

[Aboveallislove]

Thanks Diana for the info! I love having different takes. Also, that's interesting re the probiotic. I do think the pain is related to both sticky poop and bacterial in balance which the probiotic would address. Now that she's not liking the taste, wondering is she just doing in water? Our GI loves it in gateroarde. And our son loves salt that I just dump salt in the water with it and he'll drink it down. (DH forgot to do that yesterday and it took him an hour to drink it--and only after I asked and added--when normally he's done and on to his second big glass of water within 15 minutes).
Thanks for the link re the study!
One other question: From the Xrays, could they tell there was stool stuck in the illium (sp?) or was that only possible after the scopes?

 

[Jeana_Lynn]

Not sure if this was mentioned, but my stomach aches relate directly to what I eat. Broccoli and cabbage really make my stomach hurt these days (even in very small amounts) unless I take gas x. Really oily foods bother my stomach a lot and so I take more enzymes when I eat oily food.

 

[Diana4Natasha]

I also thinks that's what it's all about. I tried the bomb with water last time but it tated awful, will try the salt too in the weekend. 8 doses in water is a lot. I am also keeping a log of what she eats just to see when she has oil. I know she is sensitive to cheese so lets see...
So only scopes can show the stool inside, specially in corners. The xray is not precise enough.

 

[Aboveallislove]

Thanks so much. Do you know if the doctors can feel the "sticky" stuck stool manually as oppose to the hard stuff? The GIs always test for "softenness" but our son's stool is plenty soft but molasses-like sticky. We also have no-go foods of texas toast and string cheese. Another mom whose little one had MI and surgery indicated nuts cause major problems too. And please know of my gratitude for keeping me in the loop. It helps me think through things on my end and hopefully have a more productive discussion with our son's doctors.

 

[Diana4Natasha]

They can only feel if there is stool that's all. Natasha's belly is always soft too. When they feel something, it's always on her left side, they ask her if she feels like going but she always says no. In that area, she should be feeling she has to go, but it happens much later for her, it moves very slowly. But I think if when there is plenty, they could feel it. When we went to the ER, last dec, the doctor was feeling the tummy and thought it would be worst, but she had been to the bathroom twice after we got in the hospital so it wasn't too bad for him. It still took her lots of Golitely and water, from 6pm to 2am to clear out! I don't understand how such a small thing can hold so much poop!!!! It's beyond comprehension!!
So I guess they could somehow feel if something is unusual. I am glad we can help each other. What your team says will be very interesting for me too.
For the food, I try not to give her pizza or cheezy stuff for a few fays, to see what's happening. It's hard because she loves cheese. Will give her some in the WE to see any reaction. I'll be there to check.