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Gastroparesis bloating

lagirl1966
0 Recommendations

Hi everyone. I am new here. I was diagnosed with Gastroparesis 3 years ago and have been suffering with SEVERE bloating ever since. I dont have any vomiting though. I was reading up on this on the web and found out if you don't eat the right foods, a mass can form in your stomach and be quite deadly .... this scared me to death ... now I am afraid to eat ... this would involve alot of pain and I would have to have immediate assistance from a doctor to get it removed. I don't want this to happen to me!! I am so angry that it has. I have IBS too, which just complicaints things. I have even considered surgery. Has anyone ever had the bypass surgery of the stomach? I am afraid too, but I need to know if anyone has success with it.

48 replies

JenD

HI,

I have bloating pretty bad too. I look pregnant. Mine gets much worse with j-tube feedings but even without using the tube I'm still bloated.

I think the gastric bezoars that you are talking about are fairly rare even for people with GP. You can talk to your doc about getting evaluated for bezoars. They can do an endoscopy to remove it if you really do have one. Typically this would not be the cause of the bloating. My doc has indicated that my bloating is due to small bowel dysmotility.

I am hesitant to have surgery on my stomach as I can sometimes eat a little and if we ever do get better these types of surgery would prevent recovery from GP.

I hope this helps.
-Jen

lagirl1966

Thankyou for your advice jen. So far, I do not have the bezoars, that I know of. There isn't any pain or anything, just the severe bloating. Luckly I have not had any vomiting with mine. Just the bad bloating and my IBS problems. I have IBS-D. Which dosen't help. I think maybe you are right about the surgery, but is there hope of recovering from this? Thanks again
Trish

chewy1

Hi! Welcome to the group! It's a great place to get support and encouragement. It is amazing to see how much we all have in common, yet it seems there are many differences too.
I found it interesting to read your fear of the bezoars. Not too long ago, I was in such pain and so bloated that I was convinced that I must have one. I never mentioned it to anyone though because I thought everyone would start thinking that I spend too much time on the internet reading about medical issues. I evidently didn't have one though because I did start doing better.
I know that Jen mentioned that her doctor's thought her bloating and pain was because of a small bowel dysmotility...During the time I was having the most trouble with bloating I was diagnosed with a Pelvic Floor dysfunction (outlet dysfunction) . Basically my intestinal tract (especially the spinchters and muscles in the lower part of the intestinal tract were not working correctly and therefore all the waste products were being trapped. I went through a 2 week retraining program at Mayo. It hasn't completely taken away the problem but it has certainly made things better...I don't have near the same degree of bloating or pain.
I also have GP, IBS, Fibromyalgia, Diabetes, and severe migraines. It seems that most people on this site will tell you they have a combination of these things plus more!
You asked if there was a possibilty of things getting better...I think there is...I don't know when it will happen but I really believe it can happen. At least there is hope that they will discover something that will at least allow us to lead a somewhat normal life again. So, hang in there!
Hope you have a good week.
Judy

rio

Hi,
I also have IBS, GP and migraines. And I've been hugely bloated for years. In trying to deal with GP I went on a liquid diet (Boost, Ensure, Cocoa, V8 etc) and started a course of Acidophillus stomach bacteria tablets (available at most pharmacies).
The change was enormous and long-lasting. I am now on a maintenance course of Acidophillus. I was so bloated, I had to buy size 12 jeans and after dinner I would be in pain because the jeans were too tight. Now I am a size 4 (I have *never* been a size 4 in my life). Of course, my problem may not be the same as yours, but it is a low-cost experiment.
And lifting the burden of bloating and feeling 'fat' has had a great impact on my mood. Bloating is a bigger problem than people realize because it is so depressing.
I wish you the very best.
Rio

lagirl1966

Rio,
THank you for writing. How did you get the bloating better? Has it stoped? Did the acidolphillious do it? And how did you lose the weight? I have been trying to lose weight for 3 years (since I got these conditions) and the only way I lose weight is through the flareups of IBS. Which means I have diarreah. I can't exercise because of all the bloating. My back is in pain all the time because of how enormous the stomach is. How did you do it???? Please let me know.
Thanks,
Trish

rio

Hi Trish,
Unfortunately, I lost it the hard way through a years worth of being unable to hold anything down. None of the anti-emetics worked except an injection of Gravol (and, trust me, you can only take so many of them before your bum is so sore you can't sleep!)
I developed an infection towards the end of this period and went on acidophillus to help rebuild my system. Even though I couldn't eat and had lost 30 lbs, I was still bloated every time I put anything in my stomach. Then after 30 days of acidophillus 3 times a day (store the pills in the fridge after opening) I had this flat stomach! Never since I was a pre-teen had I had a flat stomach.
I was sure that this wouldn't last but it has. (over a year now) I am on a maintenance dose today (1 pill/day).
I was also sure that as my appetite improved I would go back to my normal weight but my stomach had shrunk during the acute illness period.
Now I just maintain by *never* over-filling my stomach (very bad for GP), several small meals per day, mostly dairy (cocoa, smoothies, cottage cheese and tinned fruit).
I can occasionally have take out but I don't eat nearly as much food as I used to. I try to limit the 'straight sugars' in my diet as they do cause temporary bloat now. If I eat a bagel, it's dinner not a mid morning snack. I limit my coke addiction (the refreshing kind!)
I honestly think it was all down to the acidophillus. My IBS was very well controlled before I got GP but I was constantly bloated despite the diet restrictions, fiber intake and gallons of water.
I hope it is as successful for you as it was for me.
Rio

Stac

I was diagnosed w/GP a few years ago and w/the help of meds I got it fairly under control until not long ago when it was aggravated w/stomach ulcers and I ended up in the hospital again due to severe dehydration from the vomiting and diarrhea. Recently, I was diagnosed w/IBS...I guess I'm confused b/c in the all the reading I've read, it says that I need more fiber for the IBS and less for the GP...therefore, I guess my question is what should type of diet should I be on? Any suggestions would be great!

HopeHelps

I understand!!! I have severe gastoparesis, IBS, acid reflux, Fibromyalgia, and the list goes on. The bloating is insane. I used to only be able to wear maternity clothes. Which was so embarassing when my sister was the one actually pregnant and I was the one wearing the clothes!!! But I have found help. None of the medications in the states have helped me. I am a patient of Mayo clinic in Jacksonville, FL and they found a medication that you can get from Canada, it's called Domperidone. Domperidone has saved my life. I can actually eat food now! I have to still watch the foods I eat, for example, nothing fried, no fruits or vegetables, etc. Lettuce is the worst. But I was on a liquid diet for about a year and still had severe bloating. The Domperidone has minimized that. I have also recently discovered an additional way to help with bloating. Each morning I drink one cup of green tea with ginger, then in the afternoon I take a ginger supplement pill that I get from GNC, and in the evening I drink a cup of ginger tea. This regimine has saved me...it might help you too!!!

mphotographer

Hi lagirl and welcome to this warm group! Has anyone suggested digestive enzymes to help decrease your bloating? I just started taking them and have noticed a huge improvement, with much less bloating (unless I eat too much at once) and less nausea. As others have suggested above, I too take probiotics (acidophillus plus other strains) every day and this was suggested by my primary care DO. I take Primadophilus Optima which has much more of the "good bacteria" that you need. According to the nutritionalist at the health food store (and my dietitian), you can't get enough of what we need with just acidophillus. I hope that helps and I hope you feel better soon. I have never gotten so bloated that I look pregnant, but I sure feel like it! Walking for me after eating helps a lot too-I pace when we are watching a movie :-)). Take care and I hope tomorrow is a better day for you-mphotographer

HopeHelps

Hi! Thank for the nice welcome! I have heard alot about these digestive enzymes. Where do you get them and are they just called digestive enzymes?

mphotographer

Hi HopeHelps-
My primary care doctor recommended getting pancreatin digestive enzymes. I get mine at the health food store and if you don't have a gallbladder, make sure to tell the people at the health food store and they can guide you as to what would be best for you. I am taking Jarrow-Zymes Plus Cold-Extracted Pancreatin. I would talk to your GI doctor first and he will probably guide you on what would be best for you. My GI doctor said they also have prescription digestive enzymes if the ones over the counter are not strong enough for you. I hope they help you-they sure have helped me! mphotographer

TheCatzMeow

Hi, I have the same problem and little by little, I'm getting new ideas. My GI doctor just called and told me to eat all the angel food cake I want and any pasta. He said they are easy to digest (mainly the angel food cake) and he told me to walk at least 10 minutes a day and increase from there. A couple of ideas, I'm checking into the enzymes that others are talking about. Take care, Cathy

lagirl1966

Thankyou everyone for your advice. Where do you get the enzymes? Are they expensive? And to hopehelps: How expensive is that medication from canada? I would do anything to get rid of this bloating. Presently, I am trying to lose weight. I have gained an enormous amount in the past 4 years since getting sick. I have never weighed this much in my life. I am in constant pain, so I must get it off. Let me know about the price for these meds. Thanks

HopeHelps

Hi Lagirl1966! Interestingly enough...I'm going to the doctor today to discuss my weight. I'm right there with you about the weight. I'm doing everything I can but I can't lose weight...have you been able to lose any weight? Any it's so hard, because we can't eat any of the stuff diets suggest, like vegetables and fruits, etc. I went from being a size 2 my whole life, to a 14 and it just keeps increasing no matter what.

I get my pills from canadadrugsonline.com. I currently had to have my dosage increased, so I need 240 pills a month..., so I get 500 pills for $80.99....and it's worth every penny. You can get 100 pills for $19.99 and shipping is $10. I know what you mean about being in constant pain, try and get a prescription for this, it helped me...it could help you! Let me know if you come up with any great weight loss tricks!!

All the best, hopehelps

TheCatzMeow

LAGIRL,

I have GP with a horrible problem with pain and bloating (no nausea). I did have a Bezoar about six years ago. It was hot out and I was drinking a cold glass of water. The water got stuck in my esophagus. I could feel it because of the temperature. I tried jumping up and down, holding my hands over my head and it wouldn't move. There was no pain involved. I went to ER just because I thought it was weird. The next thing I know is they are doing an emergency endoscopy. They didn't have me out enough so I felt the whole thing. It was no pleasant. The doctor said he hadn't seen one in 20 years. Mine was so old it had calcified and they actually had to rotor-router it out. It took about two hours. Now this was several years before I got sick and diagnosed with GP. I have been using Cilantro for bloating (going on two weeks now). I eat about five pieces at each meal. I just eat the leaves not the stems. I'm noticing a significant difference in how bloated I am. I am going to try the acidophiles tomorrow and I'm on a very st rick GP diet. I also have diverticulosis and the diet for that is high fiber. My GI doctor says the GP trumps the diverticulitis diet so that's the input and what I'm doing at this point. I'm kinda excited about what I've read about the acidophilus and ready to try, if it works (I will continue the Cilantro), than maybe I'll get some relief from the pain and bloating. Hope this post helped a little. Take care, Cathy

blackbear26

Hi everyone,
I find all of the different remidies quite interesting. Since I too suffer with extreme bloating, I understand that whatever works is the way to go. I also never gained much weight all of my life until the last three years of being sick.
I have been on a cereal kick lately with milk that I never drink. Since having IBS I have avoided dairy products as I found that I was lactose intolerant. My body has actually been craving dairy. First it began with yogert then to the milk on the cereal and as of lately milkshakes.
All of this with my daily dose of VSL#3, has been my diet of late. There is nothing scientific about it. I have just allowed my body cravings to lead me in this direction. The bloating has subsided and that is such a wonderful feeling, as I'm sure all of you know.
I guess sometimes that our cravings can really help. Good luck to all of you figuring your own diets out. Keep sharing!
Sherri

msmac

Hi and welcome. I don't seem to post here often since I belong to the gastroparesis group on yahoo through the g-pact.org website, but am glad that I read your post. I am an extreme bloater. It looks like an elephant is ready to come out of me. I take gas X thin strips regularly as my doctor instructed. It doesn't get rid of it, but does take a little pressure off. I use a j-tube for my food and it still happens. Bloating is one of the gp symptoms. I have learned that buying maternity shorts, capris and pants with a wide elastic band is very comfortable when bloating. I also on occasions wear scrubs. If you are eating, there are recommended foods and diets at g-pact-org you might want to review.

True, it is hard to deal with a chronic illness, but it can be done. I have noticed that most of us with gp also have other conditions making the gp diagnosis a hard one to take.

My prayers are with you and I hope that your tummy days are better and better.

ren79

How long have you been on a liquid diet? are you back to eating real food?

NOLANY

I am 48 and was just diagnosed with severe GP... after 211 minutes only 25% of food had moved... I am on a liquid diet but every other day, I can tolerate a small portion of food. I am uncomfortable and very full... My doc gave me no direction or indication of what to eat, not to eat and what to expect with BM. I have a normal BM every 3-4 days, no bloating, no vomiting, no nausea. Sounds like I am lucky. I just feel full and can not tolerate regular food. I drink ensure mixed with Muscle milk... and have all the same worries about dehydration, malnutrition, electrolyte imbalance, bezaors (sp?), overdosing on vitamins, allergy medicines due to the slow digestion and what the future holds--- life expectancy as voiced by others. I get about 1200-1500 calories per day. Was losing weight but have stablized and am maintaining my weight. I am going for a seond opinion and possibly visiting Mayo Clinic. I'd like to know how this impacts life expectancy... does this progress? does everyone start with the full feeling and progress to the vomiting etc? thanks for listening

lagirl1966

Hi Everyone,
Sorry I haven't been here in a while. The bloating is still there. It never goes away. I am only eating probably 500 to 600 calories aday. And I am still not losing any weight. I still weigh 208. My normal weight is 140 so I am so uncomfortable. Luckily, I have never had a bezor (sp?). I hope I never will. My GI doc has been no help to me at all. He just tells me to live with it. I am very upset with him ... better not talk about it ..... How is everyone else doing?
Trish

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