CF and Bowel Problems?

[littlepinkstar]

Hi, I don't post here often... but when I do, it's usually something that is bothering my health. So here we go...
Iv'e had Cystic Fibrosis ever since I was 3 months old and ever since then iv'e rarely been hospitalized. Iv'e only been in for a tune-up twice in my life, once when i was disgnosed and the second time was around Feb/April of this year. I usually only suffer from lung problems but ever since a week ago I have been having irregular stomach aches, very painful. I thought it may have been from my digestive enzymes ( I take Ultrase MT20 ) but I was wrong. I have been taking them like I should be, four per meal three per snack. Well I have a very high pain tolerance (meaning pain doesn't bother me much) but ever since these stomach aches have started I have to crunch over to releive the pain... and the problem is.. the pain doesn't become releived. I haven't had a bowel movement (stool) in about 5 to 6 days now. Well, I HAVE but not a good one, these are just watery types.. not a greasy diahreah type though. I've been to the ER twice since last saturday and first they sad I was pretty gassy inside and they gave me some stuff to drink ( i forgot what it's called ). They said that I would probably start having to go to the bathroom within 30 minutes of drinking the stuff... 30 minutes later, no bathroom call. I never had to use the bathroom from that stuff. They also put my on vikadin for the pain ( which was a mistake because we all know that any major pain killer the NUMBER ONE side effect is constipation. ) So a couple days go by, whenever I have a stomach-ache I just pop in a vikadin and no problem right? well in the long run it was a horrible idea. This morning I go to the ER again, and they do some X-RAYS so on so fourth, get me started on some IV's and results come back i have <b>a lot</b> of stool hanging around the upper right part of my bowel. The doctor said that I need to drink some of this stuff (called Go Lytely.. "go lightely") and it should clean me out like that. The only problem is... I have to drink a full GALLON of it within 4 hours. Well I drank half of it so far and it's BARELY helped. Iv'e gotten a little bit of stool out of me though. So anyways to the point I am trying to get here and make is that... Does anyone else with CF have these kind of bowel problems? My mom is a nurse and she thinks that if I get too plugged up I can have a "Bowel Obstruction", and I know that this is some-what common with CFers... Is there any advice you guys can give me? Anything that you know from your personal view that can help? Because I am really hopeless right now, and my stomach is really starting to give-out on me it feels like. So please if you guys can help me out, I would be very greatful. Thanks!

- Alyssa, 16/f/ca w/ CF

 

[spicyone18]

I had this same problem a few weeks ago, while i was in the hospital the only thing that solved it was a enemma, but not a regular one the big one they do in radiology! Lovely I know, but hang in there hopefully the go lightly will help you out!

 

[lovingBenandCambree]

Alyssa,
the same thing happened to me while I was in the hospital. I too have a pretty high pain tolerance and at first i just thought it was menstraul cramps then I was doubling over in pain. I had never felt anything like it so I sympathize with you. Keep doing the go lightly I did the whole big enema thing and it didn't really help but the go lightly did it took nearly the whole thing to drink and then it suddenly hit me. I was running to the bathroom about every 3 minutes for quite a while. After you get cleared out I would ask your doc for a perscription for Miralax. It is a smaller dose of go lightly and it is a powder. If you just mix it with Orange juice you can barely tell that its there. Whenever I start to get plugged up I take it and it works wonders. Especially when I have had to be on pain killers. While on them I take it everyday and never have a problem. I hardly take it anymore but if I haven't gone to the bathroom for a day then I will because that is very unusual for me. Good luck! HOpe this helps.

Emilee

 

[jasonterriallen]

My son had the same problem he went to the hospital and they did an x-ray, and said he had intersecception. He went to his CF Dr. right away and he was in the hospital for 3 days. They were going to give him the go-lightly but gave him some miralax instead. and it works great! Goodluck

 

[anonymous]

Thankyou Emilee for your help!

I finished the whole thing, and I did run to the bathroom quite a few times during the night. Now that I have mostly all of my stool out of me, I am afraid to eat? Is this normal? I know it's very important that I eat but the pain that I got was so awful I never want that to happen to me again. I will ask my doctor about the Miralax. Thanks <img src="i/expressions/face-icon-small-smile.gif" border="0">. Also, whenever I do eat.. I start feeling weak and woosy. Is this normal? Do I just need to take it slow until I gain my strength? Thanks.

-Alyssa

 

[spicyone18]

After i was "unplugged" i too was scared to eat, but i was given miralax and so far that has helped

 

[anonymous]

Hi Alyssa,

I noticed something in your topic: you said, that you do always take the same amount of enzyms for your meals and snacks. Do you always eat exactly the same things? Because the enzyms are mainly for fat, so it depends on the content of fat in your food, how many enzyms you need. So if your snack are for example fresh fruits, you don´t need any enzyms for it. If you take too much enzyms for no-fat-food it could cause bowel problems.

Uli,43,Germany

 

[anonymous]

I have to agree w/ Uli. When I start to have real hard, large stools or signs of constipation, I back off of my enzymes for a day or so and then go back to the regular dose when my stools get regulated. You may run this idea past your doctor to see what he says. I may be doing something that is totally not recommended, but it seems to work for me.
Elle

 

[absoluteoffroad]

Ya, I had that same issue about 4-5 years ago. Like you, my stomach area hurt WHENEVER...it got so bad I couldn't sleep at night. I tried over the counter "aids" and that helped a LITTLE. Long story short they X-Rayed me at the hospital and like you, it showed an abundant amount of "stuff" (to keep terms light) in my intestine that had gotten built up, causing a major blockage. They told me it was "somewhat" common but I had never had it before and HOPE to NEVER have it again! Instead of drinking a gallon of that medicine, I was put on bed rest overnight and it was pumped into me, via my nasal canal...not fun to say the least! So ya... after that they perscribed me a drink called Miralax....perscription laxative that I have to take almost everynight, although its only a small amount. They said if a day or two went by that I didn't have it to try to eat any type of ruffage(lettuce) or wheat. So, I'm glad I listened because I've been out of town for days and forgot to pack some and therefore have had to rely on those sources for relief. But in the A.M. I can definitely feel "some" cramps in the intestinal area. But I'd say I'll have to be taking this powder for a while since I really dis-like salads, ALTHOUGH I will eat lettuce on sandwiches. But, hope you get better soon, Lord knows that is a feeling that you don't want to have because it literally inhibits you from enjoying anything you are wanting to do.

 

[anonymous]

Senna works for me -- a couple twice a day, morning and evening. When things start feeling sluggish, I take a nice double-shot of Maalox with about 12 ounces of water. Never heard this recommended, but it always does the trick. (I'm sure you know not to take the antacid within three or four hours of taking certain antibiotics like Cipro or Zithro.) Also, of course, keep playing around with your enzymes. Oddly, too few can jam you up as easily as too many, and it takes a lot of trial and error to figure out the proper number. What complicates this is that not only does your digestive system change with age and with ups and downs in your clinical condition, but it also responds to fluctuations in your daily routines -- too much or too little sleep, exercise or lounging around all day, things like that. So you always have to pay attention. If you don't, at least Holly Golightly is always on call! Good luck!

Q

 

[JazzysMom]

When I was in the hospital in May I woke up with severe abdominal pain & vomiting. After doing xrays of my belly they found out something I always knew. That I was full of sh-t! (ha ha). The doctor couldnt believe how full I was. Since then I have found if I dont drink enough water I tend to get pains that I use to have, but never really paid attention to. I do have a prescription for miralax should things get that bad.

 

[JT]

I have a warning for all y'all with abdominal pain. When I was in school I had the same pains you describe. I was constipated often. Often enough that when my appendix ruptured they thought the pain I was is was from constipation. Eat fiber and try to go to the bathroom harder they'd say. I'm lucky to be alive as it was SEVERAL days (seemed like weeks) before they figured it out.

 

[anonymous]

Hey, It's Alyssa again... they wont let me log in? Anyways....

Yesterday seemed to be going fine, my SEVERE stomach aches were gone, then after dinner they started hurting awful again. I went back to the ER (because if I drank go lightely and it didn't do anything, iv'e got issues, lol) and they said that I may have ulser disease? but they didn't even X-RAY me so I haven't an idea whats going on. My mom asked them for a perscription of Miralax because I requested it since it works so good on you guys. I hope it works for me. I am definatly going to run this by my CF doctors on monday through a phone call.

 

[anonymous]

alyssa,hi my 12 yr old with cf had severe stomach aches 2 yrs ago,it ended up being what is called an intusseption in her bowel,this means her intestine was like a telescope it was like her intestine was going inside another part of the intestine.She was constipated too.Maybe you need to have a cat scan or an ultrasound of your intestine.That is how they found my daughters,it did not show up on aan xray.Good luck

 

[anonymous]

Alyssa,
I also had something that was called H-pylori which also caused severe pain. You can check it out by having a blood test done. I had to be on something that was called a prev pac. About a year later when I was having the trouble and needed go lightly I had an endoscopy where they go down your throat to see what is going on and they did see that I had old ulcers. I haven't had any troubles for a long time. One sign of h-pylori is black stools so just in case that's what is going on I thought I would share<img src="i/expressions/face-icon-small-happy.gif" border="0">

Not logged in lovingbenandcambree

Emilee

 

[Cutecurlz]

I have the same problems about once a month, I get backed up to point were the pain is soooooooooooo sooooooooooo soooooooooooo unbareable that I am curled up in the fetal position waiting for the pain to go away. Pain killers don't work it just makes the pain worse. I am female 36yrs with CF. I took something called "Kleen Prep" and it was the nastiest gross tasting stuff I have ever taken but it did work, within an hour after taking it I went. the first time this happened to me I did go to the ER myself and they took X-Rays too and showed them to me and all I could see was a big grey mass(it was all bowel) they wanted to give me an enemma too but the problem ain't at the bottom it's at the top. Giving enemma's to CF ppl is useless. The problem with being constipated has to be delt with at the top not at the other end, enemma's don't work for CFers. So what do I do to keep regular? I drink a glass of Prune juice mixed with Apple Juice(cause I hate the taste of prune juice) in the morning and just b4 I go to bed, then once a week I take stool softeners mixed with a laxitive just to keep things running smoothly, and I try to stay away from red meat(I have it at least once a week for the Iron) but eating red meat all the time will and can constipate you, so try to stay away from red meat, and I drink lots of water now too. I drink alot of pop cause I hate the taste of water but now with all this flavored water on the market I drink lots and lots of water. I also try to eat more fruits and veggies and 100% whole wheat bread too. So these are my suggestions....this is what I do to keep "Regular"....I hope this helps you and good luck!!

 

[jasonterriallen]

My 9 year old son JJ had severe stomach pains about 2 months ago and thankfully hasnt had one since. The Dr's were going to give him the go lightly but decided against it because of his age. He now needs to have a G-tube to help with gaining weight. The miralax worked great when ever he starts getting a stomach ache, and he cleans himself out in the bathroom.

 

[anonymous]

I had a bowel obstruction back in the early 80s when I was like 6 or 7 and they gave me something called MCT oil to take everyday - do they still use that anymore? It worked, though I remember taking about 5 baths a day as the warm water was the only thing that eased the pain.

 

[anonymous]

37 yr old female with CF...diagnosed at the age of 3yrs. I get those kinds of tummy pains almost all of the time. As you get older the CF symptoms get worse, don't mean to scare you but it will happen. Pain killers DO NOT help/work. Mine are soooooooooooooooo bad that I am curled up in the fetal position until the pain goes away.....a few hours should do it, well usually. I keep something called KLEAN PREP on hand just incase. I also mix prune juice with apple juice(cause I don't really like prune juice) and take it 2 times a day. I also keep stool softeners on hand too just incase. Try to stay away from red meat...mostly steak as it constipates you badly. And drink water water water water and more water......Going to the ER won't do you no good cause they'll wanna give you an enima and that's not where the problem is with CF ppl, the problem is at the top, not the other end, getting one of those (enimas) WILL NOT HELP YOU!! If you have any more questions you can ask me on here or email me at jinakicksbutt@hotmail.com<b>Text</b>

Good Luck to U