stomach aches

[Diana4Natasha]

Hi, thanks for yr concern. We went to do the xray today. Everybody got my report. The nurse will call me tomorrow and let me know what to do next. I talked to the nurse about Flagyl and the vit D. I also sent them names of the two GI. My daughter is ok today, no pain, spent the whole day in school. She was in a good mood. It's good to see her like that. I feel exhausted. Let's hope for the best. Will keep you posted.

 

[musclemania70]

have you/she tried eating daily yogurt? I was having stomachaches constantly. I tested out 7 days of daily yogurt. Plain. organic. anything flavor with the good bacteria.
EVERYDAY i eat yogurt like its part of my meds regimen and no more stomach aches.

Reasearch KEFIR. its delicious and cheaper than organic yogurt. and tastes better.
this is if you want to do something that doesn't require doc visits, tests, and other invasive procedures which they will ask you to partake in.

TRY IT! it worked for me and no more stomachaches.

 

[Diana4Natasha]

Hello. Daughter had excrutiating pain on friday. Went to pick her up from school and took her to the ER, where we met the cf doctor. The xray revealed lots of poop.They gave her Golytely for the first time and did a fleet! She was drink it till 2.30 am. She had over two liters. She liked the taste in the beginning but after a while, it was disgusting. she did not want the tube. We met the GI and a colonoscopy is planned for thursday. My little girl is terrified. They will put her to sleep so she does not have to see anything. I try to calm her down. Not easy. They want to make sure there is nothing else going on. She will get two doses of laxaday per day now. I still think it's not enough, I did three bombs ( heavy doses of laxatives) last three weeks and there was still a lot stuck everywhere in her belly. I might add a mini bomb everyweek. Anyway we still have to do a lot of cleaning for the test next week. Wasn't easy in the hospital as I started a cold, I was trying to stay a little away from her, when she needed me most! It was for her own good. Hope everything will be ok so we could enjoy the holidays. We're doing lots of praying.
Musclemania70, kefir is a good idea, she likes it a lot. Thanks. She will love to have it Everyday.

 

[Aboveallislove]

So sorry but glad you are hopefully getting answers soon. Re the colonoscopy...my understanding is the procedure itself is fine because you're sedated. I had a lower GI which was horrible because you were awake and compared notes with some of my older friends who said it was nothing.
A few things to add to your discussion points: Did they confirm by Xray nothing higher up so no chance of DIOS? The "fleet" is not the "protocol" in US for DIOS bloackages...there is something much stronger but can't remember it, so if they think she has something higher up that isn't clearing they might need to check protocol for the enima. My understanding is colonoscopy only shows the bottom end of stuff and that a scope goes in the other way...so if the colonoscopy is clear then I'd discuss making sure nothing is higher up with the Xray and possible a longer clean-out. Our son was in hospital for 36 hours I think with them attacking it both ways. Good luck and please post an update and know of prayers.

 

[Diana4Natasha]

So, we did an endoscopy and a colonoscopy. Thank God, Things went well, we are waiting for the results from the pathologists. They all think it's probably a beginning of dios that happened. We doubled the laxaday. the fleet or anema did not work well as she had been to the washroom several times before we did it. The blockage was certainly higher up. The GI said periactin could cause constipation!!! I just don't know why it takes them so long to react! She had to go through so much pain! We're taking it slowly, making sure her stool is soft. Hoping the holidays will be pain free. We have another appointment mid january. Will try to get more answers about the vit D issue.
Aboveallislove, your son is also on high dose of laxative, does he still have stomach pain or is he able to clear out? How many times a day does he go to the washroom? Thanks for yr prayers.

 

[Gammaw]

I'm so glad to hear things went well! Hopefully the results can tell you how to avoid this happening again. Blessings.

 

[Diana4Natasha]

That's what we hope the most. No more of this constant suffering. Thanks for the blessings and thoughts.
we Keep praying, that's what helps go through times like that.

 

[Aboveallislove]

Thanks so much for the update. I am so sorry she had to go through all of that, but hoping they can control better. So, when things are moving well for our son, he rarely has any stomach aches. He does if he melts down and swallows lots of air; wants to try to get out of something; or guzzled his drink supplement--things I can recognize and say "yup, stomach ache makes sense." During those times he stools about 4-5 times a day. Usually very soft cake batter consistency. But then when his stooling is less (1 a day), the next thing I know the stomach aches start up. Not all the time, but here and there. He actually just started this routine about a week ago and yesterday I upped his Miralax (per his GI's marching orders.) He was slightly better today, but still had them. He'll walk in the kitchen, see his enzymes and have a tummy ache. He'll get one during vesting. Or randomly throughout the day or when eating. It is constant and we spend lots of time just waiting for it to feel better. We now have directions on a clean out to try, which I'll do if the 1/2 - 1 dose upping doesn't seem to help. I have no idea if it will work because this is the first time they actually gave me specifics as oppose to me calling 3x a week with his tummy hurts all the time. But this time I can totally put it down to he went from 4-5 times a day stooling to 1 and then the problems started. (Even with 4-5 times, he is gaining a ton of weight--helps that he feels like eating because his stomach doesn't hurt all the time--and it sinks, doesn't have fat or undigested food in it.) I'm also cutting back on cheese, adding more 16 ounces more of water to the day and making sure we don't miss too many days of hard running. Please do keep us posted; I really would like to know how the results come out because it sounds like it mirrors our sons situation. Also, how did they conclude it was likely DIOS forming? I swear our GI said the stool doesn't stick to the intestine wall. I don't how partial blockages are different and want to follow up on that because I think it is just lots of partial blockages throughout the GI system that is causing all the pain. Praying too.

 

[shellbell]

I am sorry to hear about these issues. I had the same pains in my stomach and even around to my back. It has been going on for over two years and I have had every scan, ultrasound, increase in enzymes and so on. A few weeks ago I had an endoscopy and they found that I have celiacs from the biopsy they did and that I have xtreme gluten intolerance and previous damage done. I am sharing this because sometimes we look only inside the world of CF thinking it is always related - and most times it is! But in this case it was not.

 

[Aboveallislove]

thanks so much for sharing. I too wondered if it was something different like that, but it wouldn't make sense logically in our case because DS would have several months of no pain even with the same diet. Did you ever have something similar where even with the same diet, you could go long time periods without pain? Is that possible with Celiacs?

 

[suros8]

Can he connect the stomach ache to any particular food? My hubby gets them when he drinks ensure or boost, especially in an empty stomach. It's like he got punched in the gut.

 

[Aboveallislove]

Nope..but when he has Texas toast or strong cheese it starts the backups. He hasn't figured it out and still asks for those because they are his favorite foods but even when I limit it never fails to start problems so I just cut fro m diet. I'mretty convinced now it is a stool issue because when things started acting up I followed the protocol I was finally given and added the water, increased miralax half a dose every three days and he stooped a clumpy pop and then had a couple days of thicker stickier and stomach aches went way. Working on titrationg back to his maintenance dose now. I'm just curious though if cellacs can take time for pain to start or can only hurt at sometimes or others because his diet is pretty much unchanged in both good and bad periods.

 

[Diana4Natasha]

My daughter also has a cake batter consistency nowadays, i guess because of the doses of laxative she gets, that's what helps not having stomach pain , I guess. When the GI went thru the intestines she could still see some stool in corners even though there was so much cleaning done before and only clear water was coming out. I also noticed that stong cheese could cause some pain if she's not competely empty inside. The results of the scope will certainly reveal other problem if any. Right now daughter has a bad cold so am being extra careful she goes often in the bathroom. I always had more pain issues after infections. Abovealislove, you said your son is on more laxatives so why do you think the stool changes aftera while? I also think that partial blockages are causind the problem. Did yr son had meconnium ileus at birth?

 

[Aboveallislove]

Diana,
I hope your daughter has recovered from the cold and is doing better. I hope you don't mind, but I really would like to pick your brain more too because I think our kids have the same issues going on and knowing what your GI saw is so helpful. So once you have full results, if you could share I'd be so grateful. Also, did the doctors think that they higher doses would get the stool out of the corners? I don't really know that our son's doctors have it figured out and frankly what you said they saw in the scope will be so helpful for my next discussion. If you are able to learn anything more, such as where in the intestines it was stuck, that would be great!

So this is all my speculation. The only thing that changes with the high dosing is time, sometimes sticker food, and sometimes less water. My thought is that over time that sticky sh!* (literally) builds up in the corners until it just hurts. Stickier foods or maybe less hydration make it worse. This is the first time we've had a "protocol" to address which has been if stomach aches/mollasse consistency poop to up the mirlax 1/2 a dose every 3 days until stools are the cake batter consistency. We're not out of the woods yet but it has seemed to help and I'm in process of titrating down as I think he is now having cramping from the miralax. If it doesn't help and stomach aches continue, then they want a "clean out" with 5 doses in 5 hours and Seenna (sp?). We aren't there yet and not sure after that what...they said that med (pectin sp?) your daughter was on (not doing after what you said but will call).
He did not have MI. Did your daughter?
thanks so much for help!

 

[Diana4Natasha]

My daughter did have MI. That is why they think she would be more inclined to have this again. I haven't heard from anybody from the hospital yet. I still have a lot of questions, same as yours, to ask them. I only had a very brief talk with the GI after the scope. My next appointment is on th 15th of january. She is also sceduled for a ECG then, as. She is taking domperidone, they wanna make sure everything is ok. She has motility issues, 30% slower than normal. Have you had a motility test done for your son? Right now, Going to the bathrom three to four tines a day and stay for half an hour. I can't beleive how so much can come out like that! It's scary, if it does not come out than it means, it's inside creating pain. I feel more and more that's the issue. And, as you said, it gets stuck in corners!!! It can after a while, create a blokage. The objective is preventing pain by making sure it's the same consistency all the time. That's the consistency she had when in the hospital for IV, she was ok fir three months after that.
I also noticed cramps and nausea from heavy doses of laxatives. It's like a viscous circle. The water intake is also an issue nowadays as there is no routine, it's better when she goes to school, she drinks a lot more. The GI team told me that if you drink the laxative too fast, you can have nausea, so when she has big doses with the powerade, they said to drink it slowly. A good cleaning from time to time will also prevent the stool to build up.
I don't understand why they want to give periactin for stomach pain, r you sure it's " cyproheptadine" ? Why can't they find the real cause of the pain and prevent it instead of giving another medication!
I think the team would like her to get back on it as they wanna make sure she eats well, my girl is quite thin and they want to make sure she keeps gaining weight. I have to find other ways for the weight, she is also a fussy eater, does not make it easy. I was hoping the holidays give a boost fir the weight gain but the cold didn't help. She's better now so there is lot of catching up to do.
Good luck with yr son, will definitely give you updates from the clinic. We keep praying...

 

[Aboveallislove]

Dear Diana,
Thanks so much for the update. I do know those with MI or DIOS for that matter are more inclined to have again. Our son had DIOS when around a year. And yes, it is Periactin (cyproheptadine) (I just copied from his medical info to make sure I had it right). His current GI and past GI both recommended. They said they aen't sure why it works that way but it somehow calms the nerves in the GI track. The way everyone explained to me is that some people are just more sensitive and that what wouldn't bother someone else could bother our son. Our son is extremely sensitive with things (itch socks, etc), but I think the GIs didn't think anything was wrong whereas I think there is. (They did an Xray and it didn't show a ton of stool and it was soft to the touch and they tested for bacterial overgrowth an nothing.) But to me, it made no sense that he could have months where he wasn't "sensitive" and then months of 10x a day problems. But they did give a protocol to address when he gets backed up and I think that means they are open to the fact that is going on. But last appointment I ran my theory by them of stool sticking to intestine walls and just overtime getting worse and I swear he said that can't happen. I might have misunderstood though and that's why what your GI found on your doctor is so important to me because I think that is what is going on. But like you said the problem is that the miralax causes cramping etc. We hit that point before I was sure it was working and am just not sure if that was the problem or that it hadn't cleared it out. We're on our 1/2 dose titrate down every 3 days now. So far today no stomach aches and a bit better stools, but only time will tell.
Re the water/drink supplement. We still use a sippy glass lid because (And I'm pretty sure studies show this), he drinks more with a straw. (I just heard something on the radio re drink companies working on this to get folks to drink more). Wondering if you can find a good water bottle type thing or fun straws for your daughter to carry water around or to drink the supplement at meal times. With our son, his appetite was shot when he had regular stomach aches but when we got to a good spot he did lots of catch-up growing and is now in 90% BMI (but was in teens when less than a year and having constant tummy issues). Is her appetitite any better? I don't think he has motality issues since he is on and off in 1 minute flat, but they haven't tested. I'm wondering if the Cyproheptadine is causing motality problems as well. Obviously you need to discuss with your doctors but if she has been having theses stomach aches for the last 3 plus months and then before the summer, maybe it makes sense to have her pain free for a chance to on her own do the catch up growth, especially if it has a constipating effect and as importantly in my mind that it might mask issues. But I know how hard it is to try to figure out what to do when the doctors think it is the answer. Praying that she is doing well. And thanks for keeping me posted. Please let me know what, if any backdrop on our end it would be helpful to know.

 

[Diana4Natasha]

I understand it's so complicated. I am confused myself. To tell you the truth, even the medical team is confused, that's what the doctor told me when she was having all this pain so often.
I was searching for use of periactin in the net and I came across this study where this pill is given to people with functionnal abdominal pain(FAP) and it did help them. But is it the case with our kids? They have cf and both had blokages. They can go months without any pain and months with severe pain. I find that the more my daugther is completely cleared out, the more time she can stay painfree. We are making sure that stool comes out very easily and often, I prefer having her rush to the bathroom than sitting in the sofa hoding her tummy with pain. I still think it is not enough, realizing how much stool get stuck in there. I need to have her completely cleared from time to time, like with the golitely in the hospital. Laxaday take longer but still does the job, there should be only clear fluid coming out from the back, and this is Very Important. maybe a complete cleaning as a routine would prevent from pain. In this disease, the doctors just try things, they don't know for sure as each kid has his own cf!
She had some light pain this morning. I am preparing her bomb, which is 7 doses if laxaday in 700 ml of powerade. We have to be extra careful with school starting next week. My girl is also very sensitive, some fabrics make her skin very itchy, her mosquito bites are always bigger than others, but emotionnaly also, she gets upset easily, this must also affect her pain! I would like to use some relaxation techniques but she does not like yoga.....we see an homeopathic doctor, so far it has helped with her moods and energy more than the pain.
I agree with the water, she also drinks more with straw, I recently got starbucks cups and have her drink while she's watching tv or studying. I am thinking of adding some lemon today, she likes sour taste and she needs to drink more.
how do they test for bacterial growth? With a stool test? Our GI said she needs to do a biopsy to find out if there is inflammation or bacteria..I find tour son goes to the bathroom a lot, do you see oil in the stool? I did this morning, but she is alreday taking her max dose of enzymes. What about yr son?

 

[Aboveallislove]

Thanks Diana!
I'll follow up re the FAP and see if that's what the doctors thought was going on (I don't but I want to have the discussion and knowing what it is called will help, along with knowing what they found with your daughter).
We just finished titrating back to his maintenance dose and going on 4 days of no stomach aches and HOLY COW can that boy eat when his tummy isn't bothering him. Is her eating improving?
We have never done a clean out other than at hospital--that's the next step if the stepping up didn't work. I though do wonder if those every so often would be better than just stepping up and down. Did the doctors give you a take on that? Whether to do a full pooping water clear out every few months? I'll ask our GI on that next appointment.
I have at times seen oily stool but not regularly. He use to have when much younger but not for a long time. He had 1 last week but that was it. He was on max of enzymes but can go up 1/2 a capful which I give him when he has a big meal, but will likely go up again in a couple weeks after the next appointment. they didn't want ot up since he wasn't having pain but then he started after so I'm thinking staying at max makes most sense since all his meals have over 24 grams of fat and lots of calories (he only eats 3x a day) and eats a lot then.

How is she doing tummy wise now? Keep me posted!

 

[Diana4Natasha]

here are the news I spoke withthe GI this morning, she called me to give results. The biopsies are negative, so no celiac and no chrohn or any inflammation. Which is quite reassuring actually. I was afraid we have to change her diet as she is already quite fussy. She saw a very typical cf intestine with thick and sticky mucus. She also noticed there were more turns than with others. It is related to the surgery, it happens when a surgery is performed in that area, the intestine can grow to be like that. Of course it makes it more difficult for the stool to move. It can get stuck easily. She did not see any blockage. Since she still saw some stool in "corners", the area can accumulate more of it and makes it difficult to move. That was quite unusual as she was fasting for two days and had tons of laxatives and water.
She also confirmed that any infection can cause motility issues, it's a proven fact, that is why she had some pain on saturday. It was few days after the cold she had. I gave the "bomb" on saturday and two bissacodyl the next day and she started clearing out. She was so hungry yesterday evening, she kept on eating untill 10pm. She also has a good appetite today which is great. And no pain.
Here is the new protocol for us:
- two doses of laxaday every day, to adjust if any " accidents"in school.
- one bomb on saturday with two bissacodyl the same day, she wants her to start pooping the same day instead of later the next day.
We want to prevent the pain, keep the intestines very moist so things can move. Before, we would only react to symptoms like nausea or belly pain. We are trying this for a month. The GI dr is ready to give Golitely at home as my daughter was able to drink over two litres in the hospital. That would be the next step if need be.
There is another test we will do which is swallowing a pill that will take pictures as it moves along, it is connected to a belt Natasha has to wear that day. Apparently, there is one small part of the intestine it is very hard to see. She wants to be thorough and not leave anything out. We would do it at home.
So there is a lot to discuss and explore for you guys with the doctors. I find prevention is better as it takes longer to clean when things have already piled up which means more pain too.
these past three years were spent trying to change, increase, decrease, of everything, while the problem was "just" poop!! Lots of it! With the periactin, the more she was eating and the more there was.
We'll see how it goes now. We learn to live one day at a time. Maybe there is some light at the end of the tunnel? We certainly pray for it. Let's keep each other posted. Iam curious to know how things evolve in yr side.

 

[Aboveallislove]

Diana,
thank you SO VERY MUCH for the update and all of the details. I have to go get ready for "rush hour" and will type more later, but thank you thank you thank you and please know of prayers for your daughter and yippee re her being so hungry!!!