i am a 23yr old female with cf and i am doing ok with my lungs but have major gastro problems. i have problems with motility and constipation. i am on miralax, contulose and sennacot. yet, i continue to have to be hospitalized often to get and ng tube and get flushed out with golytely. please reply if you have any suggestions or ideas. thanks
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cf'er with gastro problems
- Thread starter anonymous
- Start date
Hi , do you take enzymes? The reason I ask is that I don't take them, I am pancreatic sufficient and have recently had troubles similar you are describing (although not as severe). I just started taking miralax about a month ago. It has helped, but I am still having stomach problems. There are times when it blows up like a balloon and I am very uncomfortable. Sorry, I probably didn't help much. Good luck!
This is not going to help...but to let you know that you are not alone. I am 31 with the same problems....I have been having so many problems with constipation. I only take 2 enzymes (Ultrase MT 18) w/meals and 1 w/snacks. I take miralax and a stool softener on a daily basis. The golytely didn't even help me. I'm in the same situation that you are in I guess...no one seems to know what the problem is...Good Luck to you...I know how you feel!
Dea
31 w/CF
Dea
31 w/CF
JohnnaMarie
New member
Hi:
I have to say that i suffer alot with my guts too. I had been on Creon 20's for about 10 years. As time went on my guts starting moving slower and slower. I got to the point where i was doing Golytly every 2 months. I was getting blockages about every two months. The doctor at the time tried to put me on enulose...that did nothing for me...then tried Miralax..that helped some.. along with a stimulant stool softner..but the dose kept going up and up on the Miralax and i was getting really dehydrated eventhough i was drinking tons and tons of water... And I still had to do the Golyte every couple of months anyways ( 3 to 4 gallons at a time is that normal??) .
I moved to another part of the country and got a doctor that specializes in GI problems in CF patients. She suggested that I stop the Creons all together. I stopped them...my guts killed because they had been so bound up because of the Creons had been slowing my guts down ......So, when I stopped the Creons, my guts went mad...i was going like 6 times a day for about 2 months...then things started to slow down.....and i thought maybe get more normal...i was going about 3 times a day.. no oil in my stool unless i ate fast food..ugh.......
So, now it has been about 6 months now and I am getting that pain back in my side. Blockage warning!! So, now i have to do the Golytley again. This doctor tells me that i should only have to drink one gallon for all the blockage to get out. I dont know that i buy that am gonna be really mad if i have to drink that stuff again another day soon because she is making a bad call on what to prescribe me...because i told her how much it took to do the job in the past and she was not listening to me. Mann i hate it when doctors act like they are deaf!! I did not get cleaned out when i stopped the Creons..I guess the current doc did not want to do that or what was her deal.....so I am hoping that this is just some of the residue that was left from the Creons back then.that has built on itself....does that make sense to anyone at all??....or am i just outa luck..... But I do know that the Creons were making it alot worse for me.....
I have also read the one posting a person made some time ago about the milk causing ppl with cf to get blockages ........if that person that made that posting is around maybe they can say some more on that topic......
I hope this at least lets the poster know that there are ppl out there suffering with you too...and i hope it gives you some more ideas about possible directions to take.......if anyone knows anymore stuff as a fellow sufferer i say post it please
I have to say that i suffer alot with my guts too. I had been on Creon 20's for about 10 years. As time went on my guts starting moving slower and slower. I got to the point where i was doing Golytly every 2 months. I was getting blockages about every two months. The doctor at the time tried to put me on enulose...that did nothing for me...then tried Miralax..that helped some.. along with a stimulant stool softner..but the dose kept going up and up on the Miralax and i was getting really dehydrated eventhough i was drinking tons and tons of water... And I still had to do the Golyte every couple of months anyways ( 3 to 4 gallons at a time is that normal??) .
I moved to another part of the country and got a doctor that specializes in GI problems in CF patients. She suggested that I stop the Creons all together. I stopped them...my guts killed because they had been so bound up because of the Creons had been slowing my guts down ......So, when I stopped the Creons, my guts went mad...i was going like 6 times a day for about 2 months...then things started to slow down.....and i thought maybe get more normal...i was going about 3 times a day.. no oil in my stool unless i ate fast food..ugh.......
So, now it has been about 6 months now and I am getting that pain back in my side. Blockage warning!! So, now i have to do the Golytley again. This doctor tells me that i should only have to drink one gallon for all the blockage to get out. I dont know that i buy that am gonna be really mad if i have to drink that stuff again another day soon because she is making a bad call on what to prescribe me...because i told her how much it took to do the job in the past and she was not listening to me. Mann i hate it when doctors act like they are deaf!! I did not get cleaned out when i stopped the Creons..I guess the current doc did not want to do that or what was her deal.....so I am hoping that this is just some of the residue that was left from the Creons back then.that has built on itself....does that make sense to anyone at all??....or am i just outa luck..... But I do know that the Creons were making it alot worse for me.....
I have also read the one posting a person made some time ago about the milk causing ppl with cf to get blockages ........if that person that made that posting is around maybe they can say some more on that topic......
I hope this at least lets the poster know that there are ppl out there suffering with you too...and i hope it gives you some more ideas about possible directions to take.......if anyone knows anymore stuff as a fellow sufferer i say post it please
I do have a suggestion other than golytely..because I know from experience how nasty that stuff is. The last time I did a clean out, my doc prescribed VISICOL. It is a tablet that you take 3 every 15 minutes for 2 hours with 8 oz of clear liquid. It is so much easier to take than golytely and I found that it worked for me much better as well! Good Luck!
Dea
Dea
JohnnaMarie
New member
Thanks for that idea about the pills Dea! Yeah I don't know of anything except Magcitrate that tastes worse than golytely!
Hi JohannaMarie,
The post about milk and intestinal blockages may be one I wrote back in November. My son had multiple hospitalizations for intestinal blockages before the age of 5. We tried enulose, milk of magnesia, Colace, Golytely, different enzyme doses, antacids, prunes, lots of fluids, , but he still kept blocking. We suspected milk might be a problem, so we had him tested for milk allergy and lactose intolerance, but he didn't have either. However, a resident suggested that there might be a physical reason unrelated to allergy or intolerance that could cause milk to gum up the intestines of people with CF. So we took Jordan off all milk and milk products, and he did better. But when we gave him a dietary supplement based on milk protein (casein) -- as most of them are, including Scandishakes-- he blocked again. So then I remembered an experiment I had done in 9th-grade science. We added vinegar (a weak acid) to milk, heated the mix, poured it through filter paper, and ended up with a <u>glue</u>. Well, the intestines of people with CF are warm, more acidic than most, and tend to reabsorb too much water, leaving the contents on the dehydrated side. Perfect conditions for making glue from milk.
Since we have eliminated all foods containing casein from Jordan's diet, he has never had a problem with blockages or serious constipation. We do make an exception for yogurt and occasionally other cultured milk products, which he seems to be able to tolerate, presumably because the casein is partly digested in the culturing process. We are apparently not alone in this problem. A paper in the <u>New England Journal of Medicine</u> has found that even some otherwise healthy children can develop severe constipation from milk. We are also friends with two CF families whose teenage daughters had suffered for years from abdominal bloating, gas, and pain. When the girls eliminated milk products from their diets, the distension and discomfort quickly went away.
I don't know how many other CFers might have problems with milk protein. But you might try cutting out all milk/casein products for a week or two to see if it makes a difference. Luckily, there are many alternatives now based on soy or other vegetable extracts. Just be aware that casein is found in some foods where you might not expect it , including most soy "cheeses", so you need to read labels carefully.
I hope this helps. Let me know if you have any other questions.
Bambi, mom to Jordan
The post about milk and intestinal blockages may be one I wrote back in November. My son had multiple hospitalizations for intestinal blockages before the age of 5. We tried enulose, milk of magnesia, Colace, Golytely, different enzyme doses, antacids, prunes, lots of fluids, , but he still kept blocking. We suspected milk might be a problem, so we had him tested for milk allergy and lactose intolerance, but he didn't have either. However, a resident suggested that there might be a physical reason unrelated to allergy or intolerance that could cause milk to gum up the intestines of people with CF. So we took Jordan off all milk and milk products, and he did better. But when we gave him a dietary supplement based on milk protein (casein) -- as most of them are, including Scandishakes-- he blocked again. So then I remembered an experiment I had done in 9th-grade science. We added vinegar (a weak acid) to milk, heated the mix, poured it through filter paper, and ended up with a <u>glue</u>. Well, the intestines of people with CF are warm, more acidic than most, and tend to reabsorb too much water, leaving the contents on the dehydrated side. Perfect conditions for making glue from milk.
Since we have eliminated all foods containing casein from Jordan's diet, he has never had a problem with blockages or serious constipation. We do make an exception for yogurt and occasionally other cultured milk products, which he seems to be able to tolerate, presumably because the casein is partly digested in the culturing process. We are apparently not alone in this problem. A paper in the <u>New England Journal of Medicine</u> has found that even some otherwise healthy children can develop severe constipation from milk. We are also friends with two CF families whose teenage daughters had suffered for years from abdominal bloating, gas, and pain. When the girls eliminated milk products from their diets, the distension and discomfort quickly went away.
I don't know how many other CFers might have problems with milk protein. But you might try cutting out all milk/casein products for a week or two to see if it makes a difference. Luckily, there are many alternatives now based on soy or other vegetable extracts. Just be aware that casein is found in some foods where you might not expect it , including most soy "cheeses", so you need to read labels carefully.
I hope this helps. Let me know if you have any other questions.
Bambi, mom to Jordan
JohnnaMarie
New member
Thankyou so much Bambi:
I will start drinking soy and watching for casein in foods. I also have gone through all sorts of meds and keeping gettin blocked up. The milk comment you made also really stuck in my mind because my father cannot handle milk products. I think he has more of a milk allergy. Thank you again for posting that info for me. I really appreciate it!<img src="i/expressions/heart.gif" border="0">
I will start drinking soy and watching for casein in foods. I also have gone through all sorts of meds and keeping gettin blocked up. The milk comment you made also really stuck in my mind because my father cannot handle milk products. I think he has more of a milk allergy. Thank you again for posting that info for me. I really appreciate it!<img src="i/expressions/heart.gif" border="0">
I am so glad someone posted about this because I too have been having the same problem!! About a week ago I was on day 11 of no BM (I had been taking MiraLax for 4 days already) and was just about at the point of going to the ER...I was hurting! I called the GI doc on call (it was on a weekend) and he told me to take 4 doses of MiraLax all at once. He also suggested mag citrate. I did the MiraLax and by the next day I had gone a very small amount. I decided to try the mag citrate and it was just SOOO nasty and it made me really nauseous, but I did have another small BM about 45 min after taking it. Luckily things started to get more productive the following couple days after that. I have had to do the golytely stuff too in the past and that always about makes me sick too. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
It is good to hear about this Visicol. I am going to ask both my CF and my GI doc about it. Are there any major side effects?? Does it make you cramp really bad or anything? I would so much rather take pills than drink a bunch of nasty stuff all the time <img src="i/expressions/face-icon-small-sad.gif" border="0">
Jen 34 w/cf
It is good to hear about this Visicol. I am going to ask both my CF and my GI doc about it. Are there any major side effects?? Does it make you cramp really bad or anything? I would so much rather take pills than drink a bunch of nasty stuff all the time <img src="i/expressions/face-icon-small-sad.gif" border="0">
Jen 34 w/cf
Hi, Jen. It's Eva from cystic-l. I was wondering if you were feeling any better this morning I thought about it. I guess not huh? I'm sorry I hope one of their ideas help you. I had only that one time that I told you about and I don't wish it on anyone. I had to drink a couple of the mag citrrate. I was so very sick but I figuered I could tough it out if it was going to help. Anyway I hope you feel better soon. Eva
Is there any truth to the theory that you all may be taking too many enzymes?? What happens if you cut your dose in half? Are you still able to maintain weight, AND not be constipated?
Wouldn't it be a wonderful world if that's all you had to do to not have all the problems (take less enzymes)? <img src="i/expressions/face-icon-small-confused.gif" border="0">
Wouldn't it be a wonderful world if that's all you had to do to not have all the problems (take less enzymes)? <img src="i/expressions/face-icon-small-confused.gif" border="0">
Hi Eva,
Actually I am doing better than I was, thank you for asking! I am continuing with the MiraLax to keep things going <img src="i/expressions/face-icon-small-wink.gif" border="0"> I don't want to get that bound up again!! And really, the mag citrate was a good suggestion...it does help I think but it's just too bad it makes you feel so sick!
As far as who mentioned about taking too many enzymes...well, I don't even take enzymes so I know that is not my problem. I know that I am mildly PI from fecal fat testing they have done on me but they still wnat to run the elastase test as well, but since I have been having so many probs lately even going, I've put that on hold.
Jen 34 w/cf
Actually I am doing better than I was, thank you for asking! I am continuing with the MiraLax to keep things going <img src="i/expressions/face-icon-small-wink.gif" border="0"> I don't want to get that bound up again!! And really, the mag citrate was a good suggestion...it does help I think but it's just too bad it makes you feel so sick!
As far as who mentioned about taking too many enzymes...well, I don't even take enzymes so I know that is not my problem. I know that I am mildly PI from fecal fat testing they have done on me but they still wnat to run the elastase test as well, but since I have been having so many probs lately even going, I've put that on hold.
Jen 34 w/cf
I'm probably way out of my league here, but would like to mention something that recently came to my attention. Use the info any way you like, or not at all. I have a 45 year old son with CF and have gone through many ups and downs over these many years. In this time, he has had 3 or 4 trips to hospital with so called blockage, use of golitely, ng tubes, etc. to escape surgery. He was last in the hospital in December 04 with this problem. Since then I have heard the following: When antibiotics are used they will kill the natural flora in the intestine, resulting in gastro problems. He is normally on some type of antibiotic all the time. In November 04, he ended up being on IV antibiotics for 5 weeks. It was during the fifth week that he was hospitalized with the gastro problem. Purportedly, once you are off antibiotics, the natural flora will regenerate itself over time. How much time?? What if you are always on one kind of antibiotic or another all the time? I should say, I am not a natures vitamine person period! But, I have talked to several people about this problem and they rave about it. What is it? Something called probotics - a way of putting the flora back in the intestine. If any of this interests you try going to www.natrens.com and going to the link/category for probotics. There are several products that purportedly help replace the flora. One product, acidophilus, a friend of my son's uses all the time. I went to the Golden Health Products link and found something called Flora Source. I thought it sounded good, so ordered a 3 month supply for my son. My wife thought it sounded pretty good also (she is a nurse), but, advised my son to not take any until he had talk to his doctor about it. Result, he will never talk to his doctor and will probably never try it. Apparently it is a known fact that doctors are aware of the flora loss. But, since it is suppose to rebuild itself over time, they never worry about it or suggest anything to help it. I'm quite concerned, but I'm only just a parent, to and adult CFer and a nurse wife, so what do I know. If it is of interest to any of you and you try it, I would be more than interested in hearing your reply back. Good luck to all. Interested Father.
My son was having some severe problems with milk so I had him tested for lactose intolerance. Turns out (as stated in the reply above), my son had too much "bad" bacteria in his intestines and not enough "good" bacteria. He had to take antibiotics for 1 week to kill the bad bacteria and also take probiotics (just as the writer above described). He has been on these probiotics for about 6 months (1 capsule per day). My son uses Culturelle. The problem is much better, but still not too great. I have to be very careful when giving him milk and try to keep him on lowfat (preferably fat-free) milk. Fortunately, his weight is very good and we don't need the fatty milk. I wish someone had the "magic" answer for the GI complications. Reading this thread with much interest!
Good luck to all.
Jena
3 yr old son with CF
Good luck to all.
Jena
3 yr old son with CF
hi,
I'm Charles.
I was just wondering if anyone might have an idea about having severe gas. I am gasy all the time, morning..noon..and especially at night. I'm 23 and my wife about gets sick at night. I have an doctors appt. coming up but I just thought I'd ask because I got really scared when the nurse said my ensymes may not be working. That really freaks me out. Thanks for any advice...
I'm Charles.
I was just wondering if anyone might have an idea about having severe gas. I am gasy all the time, morning..noon..and especially at night. I'm 23 and my wife about gets sick at night. I have an doctors appt. coming up but I just thought I'd ask because I got really scared when the nurse said my ensymes may not be working. That really freaks me out. Thanks for any advice...
JohnnaMarie
New member
Hi Charles:
I know from experience that if you take gas-x even the generic one it works pretty good. If I am having a real time with it I will take two other wise I take one at each meal when i am having trouble. It totally depends on what I eat too. Someone that i know takes beano in the chewable kind and says it works really good too. Do you drink alot of milk or eat alot of sugar. That can cause gas. If you add ginger to your food it can help too. If you have to much acid in your stomach that is giving you alot of gas try eating a banana. They are good at calming an acid stomach. Some ppl say that bananas give them more gas. But they dont do that to me. That works great for me. Ginger snaps work good for me too. That is all I have for ideas....good luck.....
I know from experience that if you take gas-x even the generic one it works pretty good. If I am having a real time with it I will take two other wise I take one at each meal when i am having trouble. It totally depends on what I eat too. Someone that i know takes beano in the chewable kind and says it works really good too. Do you drink alot of milk or eat alot of sugar. That can cause gas. If you add ginger to your food it can help too. If you have to much acid in your stomach that is giving you alot of gas try eating a banana. They are good at calming an acid stomach. Some ppl say that bananas give them more gas. But they dont do that to me. That works great for me. Ginger snaps work good for me too. That is all I have for ideas....good luck.....
Yes, I too at time use the OTC gas remedies, and have some success with it. Gas-X and Mylanta Gas tabs are both pretty good. Also, you may want to ask your doc about adding acidophilus capsules to your regimin each day. It's also good anyway for us gals who are on antibiotics a lot and get those dreaded yeast infections!!
Jen 34 w/cf
Jen 34 w/cf