Weight Loss, Nausea, Bloating, Constipation??

[anonymous]

Hello, just wondering if any of you have experienced the same GI problems I have been having for the past year. I have lost 23 pounds in one year. The doctors are baffled about what is wrong with me. Every test I have is Normal. Ive had the following: 2 Endoscopies, Colonoscopy, 2 gastric emptying studies (to check for Gastroparesis/delayed emptying of the stomache), HIDA scan (to check gallbladder function) Ultrasound, several stomache X-rays, Sitzmark study (to check and see if my colon is slow) also tested Negative for H. pylori (stomache bacteria which causes Ulcers) Every test I have done, has all been Normal. I have also had bloodwork, (CBC normal) Recently I had a complete liver testing, all were Normal. I also had my Vitamin levels checked all were very Normal, my Vitamin D level was actually high (I drink lots of milk) and recently I did the 72hr fecal fat study. I have symptoms that come on after eating. Nausea, bad Bloating (especially under breast, between ribs) I also have constipation. I feel full easily, and dont have much apetite because of Nausea. I was 123 pounds, I am now 101 pounds. Has anyone else out there been through this? I have been sick for a year and the doctors have no idea whats wrong and I even had one doctor say "its all in my head" well if you saw my stomache swollen out after a meal you would swear I was 6 months pregnant! Has anyone else been through this? Could enzymes be causing my problems? My medications are: Pancrease MT20, ADEK vitamins, Prevacid, Novolog Insulin, Hypertonic saline (neb) and Advair discus. My AOL IM SN is (ThornsgirlNC) Any thoughts or opinions would be great!Meranda Thornsgirl@nc.rr.com 21 CF CFRD and fed up!

 

[anonymous]

I have the same problem with the nausea but not the bloating or anything. I usually try to drink plenty of youghurts and scandishakes and then when i can manage a meal go for something full of fat (ie, bugers/fries etc)
Best of luck!

Ps. Modifying scandishake is a good idea with youghurt and stuff, also that liqigel stuff (disgested fat ) can be useful although personally i cant keep the stuff or in!

 

[anonymous]

It could be your enzyme, if you haven't tried a different brand, then it may be worth your time.
Also, have you had your thyroid checked? That may explain the weight loss. I think thyroid imbalance is being diagnosed more frequently in CFers too.
A certain amount of having gas/bloating just comes w/ CF, unfortunately<img src="i/expressions/face-icon-small-sad.gif" border="0">
If you have constant constipation, you probably are on too many or too strong of enzymes. The constipation could cause the other problems because maybe things are backed up? I hope that makes sense!
Let us know what you find out<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[kybert]

does the prevacid work for you? if not maybe change to another 'antacid'. i take pariet and if i forget to take it or i run out for a few days i get the exact same symptoms because my enzymes dont work as well without it due to high acid. do try different enzymes as well. perhaps creon forte? what did the fecal fat study show? have you had a clean out with golytely?

 

[ladybug]

Hi, Meranda.
Yes, I too had and sometime still have the nausea/bloating after eating... I had periods where all I could get down were crackers and water for lunch cause I felt so sick. I also was told it was "in my head". I didn't believe them until I talked with my dietician about CFers having a sort of "eating disorder" that develops because of the CONSTANT watching of calories, fat, etc.... Essentially, she said because we are always watching what we eat to gain gain gain, we loose all interest and enjoyment in eating. Thus, our body goes through periods where we may not want to eat. Then, when you think about eating, you make yourself sick because its all about finding the fattiest, greasiest stuff you can. We MAY make ourselves sick without realizing it.

I thought that was kind of an odd explanation, but figured I'd try anything to get my appetite back, and since we've talked about it, I don't get nauseous nearly as often and I've gained several pounds for the first time in years. The biggest thing that helped me was when she told me to just eat what I want to and when I want to and not to get so hung up on having this many calories for lunch and that much fat for dinner (granted, I'm not instructed everyone to do this, this was just her advice in MY case cause I was so hung up on food). As soon as I started allowing myself to eat things that settled my tummy (like salads for lunch or even just a carnation instant breakfast for lunch when I felt really sick), I started craving other things again and not feeling sick after them. It was amazing! For me, it was deffinately mind over matter. I needed to learn to enjoy food again.

Now, with that said, this may not have anything to do with your particular issue, and I in no way want to talk you out of eating an extremely high fat diet like we're supposed to, but I'm just passing on those words of wisdom that the dietician told me so that you may ponder if they fit your situation. CFers obsess over fat and calories (of course on the other end of the spectrum than most people), and that in itself can make enjoying the things we're supposed to eat difficult. Maybe by not sweating it and not worrying so much that you're nauseous all the time and won't ever be able to gain weight, you will find you get your appetite back. Good luck. Please let me know how it goes. I have struggled with appetite, reflux, nausea, and bloating for at least 10 years, so your situation is very real to me. You will be in my thoughts.

 

[ladybug]

Oh, and one more thing, I also get so bloated that I look pregnant! Its terrible! Maybe it has to do with the way we have trouble digesting our food, I don't know. Another thing, have they changed your meds. lately? You could chat with them about trying a different enzyme (as Kylie and the other poster mentioned). It may be something as simple as that. Or, changing the antacid may work... I use Aciphex (?spelling) because Prilosec stopped working for me. Best of luck.
<img src="i/expressions/sun.gif" border="0">

 

[KRWilliams]

My daughter is having some of the problems that you are having. We did a lot of the test you have done, we are trying her on some new meds (Metoclopramide every 6hrs Prilosec OTC 2x daily) it seem to help some, she is 11 yrs old and only weighs aruond 50lbs. We just are having a really hard time getting her to gain weight. She is also really picky about eating. She has a feeding tub, that she has had since she was 2 and she also had a fondo done at the same time. We are trying these new meds frist to try to avoid having to do it again. Do you have anything that might help me try to get her to eat more thing that are fatter for her. KRWilliams

 

[anonymous]

How constipated are you? Because I just started having the digestive part of cf and was constipated and vomitting, nauseated when eating and it was all due to the fact that I had a partial blockage. She gave me some mirelax and it worked. So you might want to check that maybe.

 

[ladybug]

Hi, KRWILLIAMS!
I have found that whole milk with everything and peanuts/peanut butter are amazing at helping put on the pounds! I keep peanuts on hand and just snack on them whenever I walk by them in the kitchen (with enzymes of course). I also eat peanut butter on toast in the morning and always eat cereal right before I go to bed with lots of whole milk. I have also heard you can add a little cream to the whole milk in a cereal bowl and can't taste a difference. Good Luck!!!



<img src="i/expressions/sun.gif" border="0">

 

[anonymous]

Sonia,
I think what you just mentioned you ate sounds better than greasy foods. I guess I never understood why CF Dr's suggest this since we (well, I) can't digest straight grease anyway. It just goes straight through, or gives me diarrhea(sp) and then my bottom burns, not to mention the stomach ache etc, so it's just not worth it to me. I do eat ALOT, but try to eat things high in calories that aren't necessarily greasy.
As far as the 11 year old goes, have you just let her eat a whole lot of what she likes? I wonder if that would help. Obviously if all she likes are salads & fat free foods, this may not be the best thing, but if she likes normal food (roast, steak, potatoes, etc), maybe she could gain weight on those things. What has the Dr suggested for you?

 

[anonymous]

F Hey its Meranda, again I asked about the bloating/Nausea/Constipation and weight loss. Well I did get the results from the 72hour fat study and it said that a Normal person looses only 0% to 6.9% of fats in the stool, well I only loose 4.6% of fat in my stool. So, now, officially every test has come back Normal. I ordered the medicine called "Domperidone" from Canada and got it in the mail, and it has really helped in the past couple days with the Nausea. I have had to drink Golightly many times in the past from this stomache problem, and before my Colonoscopy I was completly cleaned out. The doctors have no idea what is wrong with me. Every test I have is Normal, I did have my thyroid checked, it was Normal also. I had 2 gastric emptying studies, and said my Stomache actually works fast. I have no ida what is going on but I surely feel bad for those who go through this also, because its miserable. It has been one year since my problems started and a hard year it has been for me, and those who love me. I may ask about going to a weaker enzyme, but I was on Pancrease Mt16 before and I had alot of gas and problems digesting, and so I was switched to the Pancrease Mt20 and gained weight fast and never had any gas. I want to thank each and every one of you who replied to my post, it was nice of you to take time out to respond to me. Thank YOU ALL! If any of you ever have any questions about CF or anything, I know alot <img src="i/expressions/face-icon-small-smile.gif" border="0">
Meranda 21 CF CFRD Thornsgirl@nc.rr.com (just type in CF in your subject line)

 

[anonymous]

F Hey its Meranda, again I asked about the bloating/Nausea/Constipation and weight loss. Well I did get the results from the 72hour fat study and it said that a Normal person looses only 0% to 6.9% of fats in the stool, well I only loose 4.6% of fat in my stool. So, now, officially every test has come back Normal. I ordered the medicine called "Domperidone" from Canada and got it in the mail, and it has really helped in the past couple days with the Nausea. I have had to drink Golightly many times in the past from this stomache problem, and before my Colonoscopy I was completly cleaned out. The doctors have no idea what is wrong with me. Every test I have is Normal, I did have my thyroid checked, it was Normal also. I had 2 gastric emptying studies, and said my Stomache actually works fast. I have no ida what is going on but I surely feel bad for those who go through this also, because its miserable. It has been one year since my problems started and a hard year it has been for me, and those who love me. I may ask about going to a weaker enzyme, but I was on Pancrease Mt16 before and I had alot of gas and problems digesting, and so I was switched to the Pancrease Mt20 and gained weight fast and never had any gas. I want to thank each and every one of you who replied to my post, it was nice of you to take time out to respond to me. Thank YOU ALL! If any of you ever have any questions about CF or anything, I know alot <img src="i/expressions/face-icon-small-smile.gif" border="0">
Meranda 21 CF CFRD Thornsgirl@nc.rr.com (just type in CF in your subject line)

 

[summer732]

Hey Meranda~
I just read your post and have you considered switching brands of enzymes? I was on Pancrease MT 10s for pretty much my whole life. My doctor felt that they weren't making their product up to snuff and switched me to Creon 20. I felt so much better on Creon and I gained 15 pounds. Just a thought.

 

[summer732]

Hey Meranda~
I just read your post and have you considered switching brands of enzymes? I was on Pancrease MT 10s for pretty much my whole life. My doctor felt that they weren't making their product up to snuff and switched me to Creon 20. I felt so much better on Creon and I gained 15 pounds. Just a thought.

 

[anonymous]

My son experienced the same weight loss while away at college. He is now on Miralax, stool softeners, and an old med called cimetidine. Prevacid didn't work for him. Fortunately, these meds cleared up his stomach problems. Now when the problem occurs, he mixes up some Miralax twice a day rather than once a day.

 

[anonymous]

My son experienced the same weight loss while away at college. He is now on Miralax, stool softeners, and an old med called cimetidine. Prevacid didn't work for him. Fortunately, these meds cleared up his stomach problems. Now when the problem occurs, he mixes up some Miralax twice a day rather than once a day.

 

[anonymous]

This is my first day to this board, I didnt even know it existed, Imagine that.

Anyhoo, Im a 36yo mom w/cf... Suffered TERRIBLY (so much nasuea and pain in my belly, the bloating made me look 6 months pregnant when I was only 2 months along) when I was pregnant (4 years ago), so bad that they did exploratory abdominal surgery when I was 15 weeks pregnant to see what was wrong. I was severely Impacted with stool (FOS I like to say). They gave me a two day treatment of golytely mixed with phosphosoda and enemas. was not fun at all. Last year I finally went to see a GI doc. She had me try Miralax. Let me tell you that medicine is a god send! Im trying to get pregnant with our second child now (with a little help from the Infertility docs) and praying that I can take the Miralax while Im pregnant to avoid the pain, bloating, nasuea, and pain that go with it. Yes I know I said pain twice, because that's how much there is.

I sympathize with you, but try the Miralax. Its truly a miracle.

______
Dani, New Jersey

 

[anonymous]

Hi Dani,
my name is mandy. It's good to here of some women w/cf that had a successful pregnancy.....did you have a hard time getting pregnant?

 

[anonymous]

I am a 29y/o female w/cf - my stomach bloats like a pregnant woman when i eat wheat in particular, esp pasta. I feel nauseous end up throwing it up sometimes (very naughty, but I am 75kgs-165pounds or so) because I feel so bloody awful. Now I eat rice insteadof pasta -lots of mild curries and stir-fries, and eat it slowly - I can take up to 1/2 an hour with a bowl of food because I feel so much more comfy afterwards this way. A bit of yoghurt on curries makes them mild and creamy and much smoother on a stomach attacked by Cipro etc. And I take my enzymes a couple at a time during meals - I have 20 pancrease for a small meal- my guts are 'buggered'. Too much liquid whilst eating makes it worse too. Don't fill up on liquids - drink 20mins before eating.
I fully agree with the chick who said she had a mind over matter thing going on- i am always watching my nutrition and balncing calorie control (bit overweight) and vitamin and mineral levels in food.

Hey, you guys with gut probs, I am now taking a shot of 100% Aloe Vera Juice (avail in health stores) daily- seems to smooth out the stomach upsets- tastes pretty bad but I have it with some pinapple juice - also good for digestion- and it's okay. Try it - no harm done.

 

[Jo]

yes do try the aloe vera juice!! it tastes like cr*p but worth it <img src="i/expressions/face-icon-small-smile.gif" border="0">