Advice on Stomach Issues?

J

justbecauseicannotseeit

New member
I've been having some stomach issues that I thought were a just a result of lots of antibiotics (I was on clarithromycin, ehtambutol, and riffampin for about a year, with added levaquin near the end, and then tobra and zosyn through IV for two weeks), but I've been off of all the antibiotics for about two weeks now and am still experiencing stomach pains and bloating whenever I eat. I take probiotics everyday and was taking them daily while on the meds - switched to a new/better brand while on the IVs because my stomach was starting to bother me (is it possible for a certain probiotic to disagree with your stomach?) I also used to take Nexium for nausea/acid reflux mostly caused by stomach ulcers that I had years ago, but recently stopped taking it in an attempt to cut down on some medications and try to find healthier alternatives (I've heard some bad things about Nexium and wanted to try without). I don't seem to be experiencing any of the nausea or acid reflux though, which leads me to believe it's not from cutting out the Nexium.

To me it sounds like it could be an enzyme issue, but i'm not really sure how to figure out if it is. I take 6 capsules of Creon 24 with everything I eat, and have been doing so for years. My weight goes up and down often but very minutely, nothing I think would constitute a change in dosage. I've heard of people taking less pills with snacks than with meals, but my doctor has always told me to take the same amount no matter what I eat. I've also heard of spreading out the dosage throughout the course of a meal rather than taking them all before - I've tried both, and haven't really noticed a difference. Also, sometimes I get sharp pains up near the bottom of my rib cage that hurt when I take a deep breath, but it tends to come in go in waves - as in I'll experience it for a week or two, then it will go away and be dormant for months at a time. It has been coming and going for years now, and every time it gets bad I get a chest x-ray and the results come back normal (usually "you must have pulled something coughing"). I'm starting to wonder if the "lower chest pain" could be "upper abdominal pain"?

tl;dr: I keep experiencing bloating and stomach cramps when I eat even a little bit and am going crazy trying to figure out what could be causing it. Any similar experiences?
 
S

stevehof

New member
I am experiencing the same thing. Since about the middle of last summer. I had an ultrasound to check for Gallstones a couple of months ago but that came back negative. I think some of the gas pain is due to the dual lower hernias I have developed, probably from a lifetime of coughing my brains out regularly. So, I am interested to see what others have to say about bloating and 'gas pains'.

I sometimes have pain centrally just below my rib cage. These pains radiate up into my lower back when at their worst and sometimes it hurts enough that standing up is painful and coughing or taking a deep breath is very difficult. This almost always occurs late at night between 1 to 5am. I think it is because during sleep I am not burping or passing gas so it accumulates until it becomes very painful. Or, gas may be getting trapped in a kink in my intestines at the point of the hernias during sleep.

Anyway, increasing enzymes didn't help. The only thing that helps is GasX and drinking water and plenty of both. It takes about an hour or two for the worst of the pain to 'pass'. I have eliminated almost all fatty foods and gaseous vegetables from my diet. Fish, chicken (without skin) and lean pork for meat and for vegetables I'm doing mostly carrots, spinach and squash, sparingly. I also use milk and wheat products very sparingly. Lastly, I have made an effort to stay well hydrated by drinking a lot of water. I have always had a lot of gas but the central abdominal pain that radiates into my back is new since last summer. I will say that since I implemented my diet changes that particular part of the gas/bloating issue is occurring with less intensity and frequency.
 
P

PACmommy

New member
Just some thoughts. My daughter has been complaining for the last year about central abdo pain, usually around the umbilicus. I kept mentioning it at clinic and was brushed off. About new years it started getting really bad and I noticed she was having alot of diarrhea. Ithought may be it was a stomach bug or lack odf enzymes woth all the Christmas goodies but it never went away. Last week we finally got an abdominal xray and she was full of poop. Shes now on pecosalics to clear things up on top of her daily dose of peg. Maybe you're problem is the early stages of dios? Maybe not? I now know if Ainsley starts complaining about that pain its probably time to start cleaning out her guts.
 
P

Printer

Active member
If I was a Doctor, I would Rx Miralax daily and a increase of Creon to 8 with meals (4 at start and 4 half way through). I'm not a Doctor though so suggest it to your CF Specialist.

Bill
 
M

MichaelL

New member
I am pancreatic sufficient and have had problems in recent years with bloating and discomfort. Abdominal x-rays confirmed that I was having blockage in my bowels. I went on Restoralax (PEG 3350) and mineral oil. This keeps things moving and my bowels from blocking. However, this year I started to have problems with feeling very bloated after eating. The bloating would last for hours and was causing me to eat less and lose weight. I had a gastric emptying study, which confirmed that the food was just sitting in my stomach and not moving. Initially, they put me on Domperidone but it was't really working for me. They then switched me to Cisapride, which is working well. I do still get a lot of gas that causes loud burping, but I am able to eat a good amount of food. In Canada, Cisapride requires special approval before you can take it. I'm not sure about other countries.

Not sure if this might be your problem, but it might be worth discussing with your doctor.
 
J

justbecauseicannotseeit

New member
Thank you every one for your input! I think I'll be calling the clinic to see if I can get some tests done - maybe abdominal x-rays - because its persistence is starting to worry me. In the meantime, I've been trying to eat healthier and looking into different types of diets (I've seen some people on here talking about the wonders of gluten-free, dairy-free, etc.). I'm really interested in trying to find alternative/more natural ways to beat these complications, I'm just not sure where to start. Perhaps I should post this in the Nutrition forum, but I was wondering if anyone has any experience with certain diets that helped ease the pain of the digestive issues that tend to come with CF?
 
P

Printer

Active member
justbecause:

Google Steven D. Freedman, MD, PhD. He is at the Beth Israel Deaconess Medical Center in Boston. He is a leading Gastroenterologist in the treatment of patients with CF. He is a presenter at every CFF Conference. NJ is not that far from Boston. Do yourself a favor and check him out. You are too young to continue to go through this.

Maybe Little Lab will join in with Steves praises.

Bill
 
A

Aboveallislove

Super Moderator
Unfortunately, with CF there can be so many potential causes and it is hard to determine which is causing it. From what you wrote, I think the culprit is either a bacterial overgrowth or a back-up. An xray should help the doctors determine which because it will either show full of stool or lots of gas. If the former, a back-up and daily miralax for maintenance and maybe also milk of magnesia to clear out. If the later likely a bacterial overgrowth and flagyl to get things back to a normal balance. Not sure what you are doing on pro-biotics but once we tripled the dosing and did a course of a flagyl-like drug, and cut back on milk of magensia, we've had about 1 month of "good" tummy. That's been a record for the last 4 years. . . knock on wood. Oh, and we cut one big meal to two smaller ones so that the maximum enzyme dose the doctors would give could actually handle all the fat, which solved the floating stools.
 
W

windex125

Guest
I was having the same problem a few yrs back, my stomach was not emptying. I was put on Relgan and diagnosed with Gastoparsis Then I grad. went off but now I am facing the same problem again esp. the bloating and pain right at the top of the stomach. I probably need to start up the meds again I am also PS so no enzymes. I just hate all this care. I love to eat. After all at 59 what other pleasures are left??? Eating, occasionally wine, a good book. Good luck. Pat 59/CF
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Aboveallislove said:
Unfortunately, with CF there can be so many potential causes and it is hard to determine which is causing it. From what you wrote, I think the culprit is either a bacterial overgrowth or a back-up. An xray should help the doctors determine which because it will either show full of stool or lots of gas. If the former, a back-up and daily miralax for maintenance and maybe also milk of magnesia to clear out. If the later likely a bacterial overgrowth and flagyl to get things back to a normal balance. Not sure what you are doing on pro-biotics but once we tripled the dosing and did a course of a flagyl-like drug, and cut back on milk of magensia, we've had about 1 month of "good" tummy. That's been a record for the last 4 years. . . knock on wood. Oh, and we cut one big meal to two smaller ones so that the maximum enzyme dose the doctors would give could actually handle all the fat, which solved the floating stools.
Click to expand...
 
L

LittleLab4CF

Super Moderator
Praises for Dr. Steven Freedman are well deserved. A truly vexing CF GI problem is an exercise in futility with most GI specialists. Any CFer who is getting nowhere with a GI issue needs to see Dr. Freedman.

He has done seminal research on the impact of CF on the gut, pancreas and bile/hepatic systems. Not just science for science sake but quality of life for us has been the result. And he sees CF patients! Resources like Dr. Freedman are not to be underestimated or underutilized. His GI specialty began as panceatology, a simple gland that is anything but simple when it malfunctions.

LL

LL
 
A

AH11201

New member
I just browsed through the above website, and it looks like there's a lot of great information. I've been following a loose paleo diet (i.e. with dairy and occasional vegetable oils in prepared foods) for a couple of years, but the last few weeks I've gotten stricter in an effort to improve some mild constipation. I've dealt with bloating for as long as I can remember--it's awful, and I sympathize with the OP. But I think the first step is to really clean up your diet, try eliminating grains (or at least gluten) and dairy, and then maybe even FODMAPS or nightshades, etc. If that sounds intimidating, take it one small step at a time; any small effort is an improvement. First, just make sure you're eating real, whole foods and NOT the processed stuff CF patients are often told to eat. Taking the junk out essentially eliminated the regular stomach aches I used to have.

My personal short-term goals to improve gut health are as follows: eat a lot more fermented foods (sauerkraut, kimchee, kombucha, etc.); drink lots of herbal tea and water with lemon; have a drink with apple cider vinegar, water and lemon around meals; cut out coffee, even decaf; focus on eating slowly (an issue for me) and chewing completely; not eating directly after a workout and wiring until I'm relaxed. I'm just about to start with all of this, so I don't know if there will be a big improvement, but I'm very optimistic.
 
P

purple88

New member
I have a miracuolous home remedy that almost completely solve my problems. It's drinking Sodium-Chloride solution !!! Just a little every day, I also inhale it (boil it then inhale) and it cured muy lungs, I tried it first a month ago and it was a miracle to me. I advice everyone to try it. It is probably so beneficial as the main problem with cf is actually not transporting water and electrolites through lungs, intestines etc. This was a true miracle for me I advice everyone to try it it can do no harm.
drinking Sodiium-Chloride solution for intravenouous rehidratation!!!​ A miraculous home remedy!!!
 
Simba15

Simba15

Member
I have the same thing. I can't eat carbs no sugar, bread, pasta etc protein veggies and pb only. No dairy. It helped
 
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