I've had IBS for 11 years now..: And I'm still... - IBS Network

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I've had IBS for 11 years now..

jadey profile image
13 Replies

And I'm still so bloated.

I don't know what to do.

I don't eat any dairy products, no meat (I'm vegan), no gluten, no refined foods.

I don't eat that much fat. Just some coconut oil in the food. Around 2 tbsp per day.

I usually eat quinoa and vegetables. No broccoli and other gassy foods.

For breakfast I eat porridge, with blueberries.

I can't eat fruits, it makes me burp and makes me feel bloated.

I don't wanna feel like this. It's summertime, again, and I don't have to worry that people will think I'm pregnant.

Cause my belly is huge. Even if I drink regular water.

The belly is more bloated now when I eat more healthy, than when I ate white rice (basmati) and processed foods (soy burgers etc).

I stopped eating gluten in April 2013, but had to start eat it again last November, cause my doctor wanted to see if I was intolerant. Oh gosh.. the problems I had when I ate it was horrifiying.. SO much bloating and flatulence.

I used to eat gluten and didn't experience it like that then.. But when I started to eat it again, after I've been without it for 6 months, it was awful..

I ususally have constipation, sometimes diarrhea... And I don't have cramps, like some people do. Lucky me :S

But it doesn't feel like I can eat anything, cause of my bloating :(

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jadey profile image
jadey
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13 Replies

I know how you must feel I'm in the same position.I must have had every test there is and seen loads of Gastrolergist .I am now under a Dietician who put me on the Fodmap diet,I am 3wks into it and can't say there is much change.But having said that a lot of people on this site has had good results.Try seeing your GP to give it a go .I really feel for you but don't give up,and try and use some of other peoples experiences on this site.Good Luck

jadey profile image
jadey

I've tried out the Fodmap diet, and actually own the Fodmap book "The Complete Low-FODMAP Diet" but I don't think it got any better, since I'm eating a restricted diet already.

I don't live in the US, I live in Europe.. And the doctors at the place where I go, doesn't know anything about Fodmap. unfortunately.

So I just feel that I have to try everything out on my own.. Which is kinda hard sometimes..

momthomas1278 profile image
momthomas1278 in reply to jadey

if you have a smart phone, Montach University has a FODMAPs app

Drina profile image
Drina

I have been on FODMAP for a week....but can say that I can feel the difference. Been of gf and lactose free for three years, but was still not good. With FODMAP I think I found a solution - though am still experimenting with foods I should not eat. You have to keep an eye on all ingredients....you'd be surprised at what actually hurts. Having said that, not everyone has had positive results with it.

I, too, am from Europe - and unfortunately have to experiment on my own.

momthomas1278 profile image
momthomas1278 in reply to Drina

if you have a smart phone, Montach University has a FODMAPs app

binks profile image
binks

It sounds as though you have quite a restricted diet. Have you been vegan for the whole 11 years? For some people, soy products can be a real problem.

Ctb567 profile image
Ctb567

Do you take any laxatives? I've had IBS since I was 2, so basically since I started eating proper food, and I found that getting the right balance of laxatives really helped me. I mainly had constipation and would sometimes get diarrhea but my doctor told me if we sorted out the constipation then the diarrhea gets better and comes a lot less often, which is what happened. I have tried a ton of diets and exercise by itself but I've found, and the doctors will tell you this too, that I just have sluggish bowels and I need the extra help from laxatives. There are some that you can take long term with no side effects, the only one you can't take long term are stimulant laxatives like senna. I found the right balance and went from being in pain all the time and going only once a week to going almost every day. Just try a few out and see how you go :)

PatV profile image
PatV in reply to Ctb567

Movicol helps me some. Have to have it brought from England or Australia to US. Miralax too irritating

Ctb567 profile image
Ctb567 in reply to PatV

I have laxido which is basically orange flavored movicol however I found that this alone didn't work that well. I also use fybogel which is a natural stool softener, you can take as much of this as you want long term, its completely safe. I usually have a laxido in the morning and a fybogel with my dinner in the evening then the next day have a break, then the day after that start again. When you use laxatives long term you need to create a pattern and stick to it for at least 2 weeks to see the effect on your bowels. Perhaps then you might need to increase or decrease or swap around when you have them so that its suits your body. If you find the right routine then this will really improve your bloating.

denvajade profile image
denvajade

Hi do you know that oats can be bad for gluten intolerant people? wishing you well

momthomas1278 profile image
momthomas1278

1 year on FODMAPS diet and it has changed my life but you have to follow it exactly with a 2 week elimination of all the restricted foods then add 1 type a week back if you have no symptoms. This was my best start eat-real-food-paleodietitia...

I can certainly relate to your problems! Fodmap made some difference for me but didnt get rid of my symptoms completely. The Shepherd & Gibson Fodmap book suggests that if Fodmap isn't working that an intolerane to naturally occuring bio chemicals found in foods like fruits and certain veggies can cause problems. Lots of research has been done in Australia about these chemicals called salicylates, amines & glutamates.

sswahs.nsw.gov.au/rpa/aller...

fedup.com.au/factsheets/sup...

This has answered my problems after 20 long years! It seems most foods I was eating including soya, gluten free bread, fruit, tomatoes, cheese, soy sauce, wine, tea etc you name it...are problems foods if you have sensitivity to these chemicals.

I strongly suggest you read up on it. It's complicated but it might just answer your problems.

Molly_2011 profile image
Molly_2011

I had undiagnosed IBS for 15-20 years and suffer from Chronic Tiredness. My brother has Chrone's syndrome. I'm a non-strict vegetarian. Only eat liver or 2 eggs once a week for iron.

Started the Fodmaps diet in 2014 and followed it strictly for a year. This eliminated the digestive pain. Have permanently eliminated wheat and barley products, lactose except for small amounts of Swiss cheese or English cheddar or French emmental cheeses (they're all the same type of cooked cow cheese). Have problems with lots of vegetables and fruit. Thanks to the Fodmaps diet I worked out which ones were causing problems. Lots of them. Eliminated all the groups of food that caused problems. This is very restrictive but I felt so much better it was worth it.

I'm a non-strict vegetarian as I have big intestinal absorption problems and so can't get enough iron with a strict vegetarian diet. I eat poultry liver on week 1 and 2 eggs on week 2 to get enough iron in my diet. And spiruline powder (a green algae with iodine in it) for vegan iron (this is not enough as spiruline is not as easily assimilated as poultry or rabbit liver.)

NB For vegans with fermentation problems, try eating just mungo beans (green soy beans) for a while as they don't ferment easily and coral/orange lentils in soups as they don't ferment too much.

Most other beans need to be avoided if you have big fermentation problems. But try them one by one to test which ones you can cope with. Soak beans like chickpeas overnight in sodium bicarbonate. Rinse. Then boil and change the boiling water 2-3 times.

No guarantee this will be enough for people suffering from serious intestinal gas. Best solution is to stick to the mungo beans if you have serious gas problems. But you'll need other protein sources.

Try sprouting some of your favorite beans to see if you tolerate them better and get less gas. As well it increases their vitamin content. Rinse them under fresh running water to try and keep down the fermenation level. Don't sprout until they become brown as they will ferment.

If you've eliminated all forms of dairy products:- for calcium and to reduce Ph levels in digestive system: try eating Lithothamium Calcareum (lithothame powder, a white algae):

2 heaped teaspoons a day (eg in your oat flakes and orange juice for breakfast and as a snack with oats and orange juice at lunchtime or for an afternoon snack?!)

Due to several very very stressful situations as I don't live in my native country, I developed chronic tirednesss and had basocell carcinoma on my nose twice due to stress and a weak immune system and too much sun (I was an urban bike rider). The 2 operations to remove the cancers knocked me around a lot and I've never recovered from the tiredness they caused. Not sure if it was the length of the operations or the chemicals used.

For my chronic tiredness my immunologist who specialises in Chronic Tiredness has put me on probiotics to improve intestinal flora, vitamin supplements for the immune system and homeopathy for past problems with candida/cystitis and infections.

Probiotics were what was missing from my Fodmaps diet.

there is only one probiotic I've found so far in Europe compatible with the Fodmaps diet: Lactophar (made by Longevie, a Belgium company). Done wonders for my intestinal flora.

The immunologist also put me on vitamin supplements for my immune system (did wonders for my hair and skin). I converted his chemical vitamin supplements into natural vitamin supplements.

He also eliminated all foods containing yeast to decrease the fermentation. He thinks this is probably a bigger problem than the gluten in wheat and barley. So I have to eat very fresh food to avoid creating yeast fermentation (gas) in the intestines and cannot eat yeast-based bread anymore.

He also eliminated sugar except stevia from my diet. The only sugar I tolerate is from 125ml/day fresh fruit juice (orange, kiwi or pineapple juice). I put it on my oats flake cereals for breakfast (oats help the constipation). I don't eat anything with stevia in it although I could.

I've been on the immunologist's part of my diet for 8 months now and still trying to find the right balance for the yeast fermentation problems (can't always eat super fresh food).

My luxury foods are real filtered coffee (no instant coffee allowed any more - Fodmaps diet) and real 90% chocolate (otherwise too much sugar).

The prognosis for chronic tiredness is not good. However I feel so much better generally and rarely have digestive pain problems anymore.

Exercise and stress management: I walk everywhere I can : at least 20 minutes a day, meditate 20-40 minutes a day and do yoga every morning for 10-20 minutes at least.

I now only work part time so I can cope with the chronic tiredness. No, it's no longer due to food. Dealt with that one. It's a chronic illness!!!

Not sure I will ever be cured of my chronic tiredness. But at least I've tried everything I can and I don't suffer from digestive pain anymore and much less arthritic pain except if I use the wrong probiotics or eat lactose without realising it or eat out at friends' places and eat something I shouldn't (eg onion or garlic) or if I do too much light housework or too much computer work!!!

And I've started learning to love life again and do what's good for me even if others get angry at me because I'm doing what's good for me and not what they want me to do.

Anyone got other suggestions for the chronic tiredness? If YOU have suffered from it and found solutions to improve it or have a close family or friends who have found solutions, I would appreciate solutions that have really worked.

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