IBS for 12 years + my story: Hi All  I was... - IBS Network

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IBS for 12 years + my story

JoeDavis profile image
23 Replies

Hi All 

I was diagnosed with IBS over 12 years ago. 

It all started one evening after a night on the town and too much food etc. I had terrible gas systems and trapped gas that didn't seem to settle down. After seeing the doctor and excluding other conditions - obviously it must be IBS.....!! hmmm... 

my main symptoms are bloating and trapped gas that I cant seem to get rid of, occasional pain and constipation/urgency - which I think is categorised  as indeterminate IBS i.e. IBS D and C - a bit of both.

I struggled with this condition since it started - blamed myself, blamed poor diet etc. 

for a long time I tried my best to forget about it - but still it lingered. 

After about 7 years I finally decided I need to do something about it as I felt I couldn't cope for the rest of my life with this condition. I went to see my doctor again and after nothing more than hopeless antispasmodics I decided to see a private doctor. He advised me to eat oats as the gut likes the consistency of oats and this would help bring down wind etc. I also tried probiotics - the best on the market, and hypnotherapy and all sorts. This all cost a lot of money - I must have spent at least £1000 or more. 

All of the above seemed to help a bit and probably does work for some people, but I found that it mainly succeeded in costing a lot for little benefit. 

However, there is a silver lining to my story. 

After trying so hard and everything under the sun, I finally accepted that I had a functional gut disorder for which there was no real medical diagnosis, just a list of symptoms. I.e. your gut is perfectly healthy in medical terms, it just doesn't function very well for whatever reason. I found this actually helped me a great deal, I stopped searching for a wounder pill or miracle cure and just accepted that my gut didn't work as well as it should. 

Having accepted this I turned to how I can improve my guts performance. We all know - or should know that exercise is good for you; what not everyone appreciates is that exercise including walking actually helps digestion a great deal. The movement helps the gut move things along and helps gravity do its job (gravity also being important for digestion i.e. it moves things down!!). 

I also realised that whenever I ate processed food - mainly processed bread, I felt worst. My rule is that if I see any ingredients on any shop bought food that I don't understand or don't know what the hell it is i.e. it sounds like something that belongs in a chemistry class inc. additives and preservatives etc. then don't eat it. Have you seen what goes in to the humble loaf of bread these days?! I tend to eat a sourdough bread bought from an artisan bakery - ok its £3 a loaf but it wont go moldy - just stale as bread should. Also sourdough is a fermented food - i.e. a pre-biotic. Don't waste your money on pre-biotic tablets, just eat fermented foods, another example is red wine - I think Malbec is in particular a good one!

I also make my own sauerkraut - this will save you a tonne of money on expensive pro-biotics, it is just as good and is a much more natural pro-biotic (find advise online, buy a crock for £35 and your good for as many years as you keep making it). 

Now hear comes the mother load, and if you think this isn't you you are probably wrong - I say that because I thought it wasn't me for nearly 10 years. Stress is the biggy, I mean massively. Stress affects everyone in different ways and you probably wont realise if your stressed or not. I didn't think I was, I thought everyone who had a full time job etc. lived my lifestyle would be the same as me. I recently decided to be content with my lot, my job etc. and realised that I don't always have to strive for things, they will come to me eventually if I keep doing what I am doing well. This attitude helped me with two things, 1. I became better at my job and 2. it reduced my stress levels. Taking a back step actually might be a good thing for your health, give yourself more time to relax. Another good suggestion - find a new hobby or more time to do it. I found playing golf or something like that that takes your mind off your condition, music etc. helps massively to bring down stress levels as long as you enjoy doing it. 

Following my life style choices I now get through my days at work easily - I regularly move my bowel everyone morning after a cup of coffee and feel fine for most of the day - I go out, eat out, do everything normally. The only time it really affects me is at night when I lay down and stop eating drinking/moving, I tend to get gas symptoms. But on the whole I feel pretty normal. 

If you have read my story I hope it helps you. To summarise the above below is a list of my do's and dont's for IBS sufferers. 

Do:

Eat well, regularly when feeling appetite. Try sticking to 3 meals a day for a few weeks. Try different diets i.e. try meat free for a week or bread/dairy free. NB. I don't advocate total avoidance diets just try different levels. 

Do take a walk or two in the day at least 15 - 20 minutes, this is a great one for helping trapped gas/bloating. I know everyone is busy. but try and get it into your daily routine its really worthwhile and will probably help your productivity. I often do my best thinking in the day on a walk. 

Do find time to relax/sleep well exercise and hobbies.

Do eat oats - preferably with Goats milk ( you might wont to try a few goats milks as some are better than others - the one I have tastes like cows milk) - goats milk is easier to digest!

Eat fermented foods ( pre-biotics)

Eat pro-biotic foods - sauerkraut 

Eat dark leaf salads (digestive enzymes) 

Eat meat fats - or olive oil, oils/butter 

Try and keep a balanced diet. 

Dont:

sit down all day - no movement

dont over eat 

dont eat too late 

dont eat processed foods 

dont stress! or worry! 

dont waste your money on miracle pills/liquids, advise etc. 

hope this helps someone 

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JoeDavis profile image
JoeDavis
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23 Replies

As someone who's starting to experience this (and panicking about what's happening) I found your considered post reassuring.  Thank you.

Dotbiggs profile image
Dotbiggs

Thank you for sharing - I'm so glad you're much better. I've also had to find my own path with this, the meds and tests and endless negativity from doctors etc spurred me on to do so!

Jesterpuss1 profile image
Jesterpuss1

Hi Joe, my IBS story is similar to yours! I've lived with it for much of my adult life! I've tried pills n potions to no avail! I've cut lots of foods out of my diet that I know are trigger foods (for me) but I've also found that some foods that affected me say a year ago don't now!! I don't eat processed foods and eat as naturally as poss! 

I am going through a flare up at the moment and I think it's because we had to have our lovely 15year old dog put to sleep two weeks ago and I've been ill since then :(  

Thanks for posting! It actually helps to know it's not only "you" coz sometimes I feel sorry for my poor husband having to put up with me! I'm glad you seem to have got it under control and are better! :)

Amabile profile image
Amabile

Hi

Couldn't agree more especially the exercise & walking. I'll pass on the sauerkraut though. I had it in one of the homes of the stuff - Austria. Not a big fan.

runrig profile image
runrig

Thanks for this post. I'm gonna try the things mentioned 😄😄

thanks

feel like you were talking about me! so many coincidences. will keep all your ideas in mind.glad you have found away forward.

good health!

gff

dinghy profile image
dinghy

Great post. It does show how we all have to make many decisions on how we manage our lifestyles. I'm glad after decades of misery I've found my 'magic' combination and have had two years now of much happier work and social life because of it. And of course it is an ongoing process of being mindful of what one feels, eats, takes, and do. I hope everyone finds their way through their own individual symptoms soon.

kathmax profile image
kathmax

Great post JoeDavis found it very interesting ,thankyou 😊

slingblade96 profile image
slingblade96

I've just read your post & coincidentally I've recently been given a Colonoscopy. Like you l have suffered from terrible stomach pains & often ended up in the loo for hours. I may have eaten the same as everyone else, yet l have crippling pain,sometimes feel sick,sweat like a pig & then go freezing cold. Sometimes it's happened out of the blue..like my recent attack last Thursday night. The pain was intolerable & it left me weak & finally went to bed with my clothes & coat on...but still cold. The next few days ..felt like l had a brick in the pit of my stomach. Felt generally unwell for several days..adding M.E to the mix + other things ..l won't bore you with & life quality just sucks! The point I'm going round the houses about..is this! After many yrs of suffering these kind of symptoms & being robbed off by my doctor..who incidentally doesn't believe in M.E & after 26yrs has suddenly thought it might actually be Chicken pox neuropathy..has put my stomach symptoms down to ...complications of the aforementioned, or IBS. Since getting an Advocate to attend my GP appointments ..he's actually listened & finally started investigative scans & colonoscopy. The latter was unsuccessful..as after 3 attempts l couldn't tolerate the pain. Although the very short time that the camera was inside me..it did discover that l have a condition called diverticulitis. It means that along my intestines & colon..there is pockets that have formed. These pockets gradually fill & once they become overloaded..these awful symptoms kick off. I've been given fybogel Hi- Fibre sachets that l have to mix with water & take at night. This insoluble fibre is supposed to sweep away the food that is depositing in the pockets. So l was just wondering if your GP is better than mine & has sent you for a Colonoscopy? As you've said, the diet is supposed to be an important factor & I've also been told to drink more water. Something like two litres a day. More fruit & veg & avoid too much fat/ oil in the diet. More fibre..but for some reason..not bran flakes!? Hope this ha helped.

JoeDavis profile image
JoeDavis in reply toslingblade96

Hi

Yes I think you do have to be quite strong with doctors, the reality is that you will not accept anything that they say unless they work with you and you make decisions on treatment and tests together.

Yes I have had a Colonoscopy. I am sorry to here that you have had failed attempts. I found having the gas and air was good, I took some really deep breaths, it was uncomfortable but I got through. 

Unfortunately I also suffer from ulcerative proctitis which is a form of colitis that only affects the first few inches of your bowel. I was suffering with blood and mucus in my stool, and obviously had to get it checked out. Eventually a doctor referred me. I also successfully manage this condition with suppositories once every couple of days and it doesn't affect me really.

I suppose I am a little unlucky to have IBS and ulcerative proctitis. However, I have accepted both these diagnosis' and I am managing both conditions. 

I recently found I was also vitamine D deficient which is interesting. Also following taking the vitamine D tablets I have found that my overall feeling of wellness has improved. Vitamine D defficentcy is very common in Briton because of the weather. 

I think any condition can be scary and hard to deal with it. But if you manage to get it under control and can accept it, I feel this really helps. 

One last IBS pointer - I have started taking these Chinese herbs when and if I have a flare up.

It's main ingredients are-

Paeoniae Alba

Cinnamomi

Glycyrrhizae

Fruit of camphortree

Flos Caryophylli.

It comes as a tube of small balls and has been a traditional med for stomach and digestive problems since 1881 or longer. Seems to help! Not sure how you get it in this country, but a Chinese herbalist may have something similar. Although I generally don't agree with forking out too much for these things.

As per some other responses I have also found that I can now have the odd day off diet - I.e. Eating something i wouldn't generally recommend, I think really advice is for main diet - you don't have to be completely strict with it after you are feeling you have got things under control. 

Good luck - thanks for all the positive feedback 

slingblade96 profile image
slingblade96 in reply toJoeDavis

Thanks for your reply. I'm glad to hear that you've had the Colonoscopy & in your case, hasn't shown diverticulitis..as mine has. You seem to have it all under control..which is good. I'm quite angry that my doctor took so so many yrs b4 getting my symptoms checked out, but at least l know now. Unfortunately, I'm still awaiting further scans because the Colonoscopy failed & once they are done, l will let you know if they find anything else. Hope you continue to keep your symptoms under control. All the best. Jan Lee

notibs profile image
notibs

Please check the note by notibs. These symptoms don't just happen cause your not living right.  There is an identifiable cause.  Digestive enzymes, probiotics, etc will help, but they are just treating the symptoms.  If you have had a gastroscopy , colonoscopy, and capsule endoscopy and they don't see anything, then you have an infection.  I was intolerably sick for 4 years. I was found to have antibodies to Yersinia enterocolitica and when treated with one month of antibiotics, got much better and am still improving day by day 2 months out of antibiotics.  Not sure how to help you proceed, but its not normal. IBS is not a diagnosis, just a reiteration of the symptoms.  

notibs (I'm a doctor)

Have you tried charcoal tabs (activated charcoal better results)?  Settles my stomach and abdominal pain, diarrhoea instantly. It actually absorbs the toxins and other harmful stuff in your colon etc and takes it out of the body when expelled itself.

SykesIT profile image
SykesIT

I have had IBS for 10 years and after going to doctors on and off got nowhere. I recently talked to an nutrinalist and tested for Candida and SIBO. 

The Candida test came back negative but the SIBO test came back positive.

I was then put on a FODMAP diet and Orageno Oil as a antibiotic.

Just under 2 weeks later are worst than when I started, bloating, stomach ache, nausea. 

So come off the pills to see if reaction to them. 

Anybody else had issues with this, not sure I have SIBO anymore.

slingblade96 profile image
slingblade96 in reply toSykesIT

What is SIBO?

SykesIT profile image
SykesIT in reply toslingblade96

Small Intestinal Bacterial Overgrowth. I condition where you have access bacterial in your small intestine.

slingblade96 profile image
slingblade96 in reply toSykesIT

Oh. Ok. Do you know why this has happened? Like, what causes it?

SykesIT profile image
SykesIT in reply toslingblade96

I am not sure what causes it. Not sure I have it now after feeling worse trying to get rid of it.

slingblade96 profile image
slingblade96 in reply toSykesIT

You do know, that often symptoms get worse b4 they get better. Something to do with the die off..of the Bacteria..pretty sure that could be the case.

SykesIT profile image
SykesIT in reply toslingblade96

I have had the worst symptoms for a week now and been off the medication for 5 days. I have been told die off shouldn't be this bad.

slingblade96 profile image
slingblade96 in reply toSykesIT

Oh dear. I don't know what to say then. Hope you start to feel better real soon:) x

rhl80 profile image
rhl80

Would SIBO be picked up if I had 7 biopsies taken from the bowel at various stages during my colonoscopy?

Thank you for your advice , will try your suggestions god bless

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