I seem to be recovering from a recent flare-up of IBS and wanted to share things that have helped!

[sa45]

Hi - I've suffered from IBS for over 10 years. A recent bout of gastroenteritis abroad triggered and flared up my condition and the past 9months have been hell!. After an intense set of medical tests (colonoscopy, endoscopy, stool tests, ultrasound etc) I was told the results didn't suggest anything serious. Although this was reassuring, I was left helpless with no cure for my extreme symptoms.

Just before Xmas I started taking Symprove (friendly bacteria) in an attempt to re-build my gut (led by myself - as so desperate for help)! Initially, I felt worse, the bloating was crazy but I have noticed a gradual but considerable improvement.

I also came across the Fodmap diet, I read 'IBS - free at last' and over the past two weeks removed some of the suggested food groups (garlic/onions, wheat, lactose). I am feeling SO much bette - a significant improvement.

For starters, the bloating has reduced ( I had to go up a size in clothes for comfort!) and the violent episodes (6/7 a day) have almost completely stopped. My body has begun to regain its normal shape, I can enjoy hot yoga (previously struggled with breathing and nausea when pressure applied on stomach). I have a full on job and I can actually last during the day without having to rush to the loo during serious meetings with senior management!!

I'm on time for work as I don't have to wait an extra half hour before leaving due to frequent visits to the loo (too afraid to get on the tube)!

I"m seeing a dietician next week to take me through the fodmap diet properly (after much insistence I was able to get a referral from my gastroenterologist). I thought I would make a head-start and have been encouraged by the initial impact. Last night, I was out for a fancy meal and actually enjoyed the entire evening AND felt fine afterwards.

Although I miss eating the food I love, I don't miss it enough to want to experience the pain I was in all day (and sometimes even during the night).

As I mentioned earlier, it is early days but i'm feeling fairly positive!

[Hidden]

I'm so glad the Symprove and FODMAPS are working for you. I too have had a great response from the FODMAPS, and so perhaps this will allow us to lead a near normal life at last until they eventually find a cure for IBS!

There is now a new iPhone app from the originators of this programme, the Monash University FODMAP diet. Looks good, and will be updated regularly as they test more foods.

Let us know how the dietician appointment goes - are you in the UK? I have not found a dietician that knows anything about it yet, and my GP looked completely bemused when I mentioned it. I also use this chart ibsgroup.org/brochures/fodm... which I find helpful. Good luck and hope all goes well.

[sa45 in reply to Hidden]

Thank you so much for your helpful advice - I have downloaded the app and the brochures :).

For me the Fodmap diet has alleviated my immediate symptoms, however the true test will be to see if it improves the resilience of my gut so that that it doesn't collapse when I start to re-introduce the 'danger' food types back in to my diet.

I am from the UK, I hope to see the dietician on Tuesday or Thursday and will keep you posted on how it goes :). I've spoken to two dieticians so far (intro chats) and they seemed reasonably well versed on the topic. I'll let you know how it goes.

Hope things continue to improve for you

[Suzannes]

Hi I was like you until nov was bad for about four months had lots of tests like you they came up with microscopic colitis which I had never heard of before started on probiotic 20 million bacteria caps from health span site and restricted gluten and no dairy products no caffeine I drink peppermint tea and no fizzy drinks ie coke ect still trying different things out ok with Warburtons toastie so far and I feel 99% better Imodium always at the ready though

[sa45 in reply to Suzannes]

Thanks :). It's so reassuring to know that the symptoms can be controlled, I hope we can eventually start to re-introduce some of the irritants (nothing beats a Mocha)! :). Good point, I will pop imodium back in to my bag - just in case!

[brad]

Hi well done i been the same last 6 weeks doctor no help at all going to see her again next week she said they do not treat ibs anymore i am going to ask for few tests i have up untill now never had pain at night but as the day does on feel pain and bloated i am 60 in july never had this so bad only little bloating last 12 months all this is getting me stress its all i think about

well done on feeling much better from the uk

[sa45 in reply to brad]

Hiya, I feel your pain!! It was the bloating that made the entire experience unbearable...I think you should insist that you have a few tests (blood, stool or even a camera related one). There are ways to diagnose IBS and that usually is by eliminating all the other types of gut related conditions. I would thoroughly recommend taking gas related foods out of your diet, if you can do read the 'free from IBS at last' book - it may give you that instant relief from bloating. Good luck...

From the UK too

[Hidden]

HI, so pleased that you have had a significant improvement in your symptons since taking Symprove and the FODMAP diet. I have seen a dietician (after insistence with a doctor I saw, not my normal one) and she has said that a colleague of hers is about to embark on being trained in the FODMAP diet so I will be contacted within 6 months. My appointment was the end of November so another 5 months approximately and I will hear from her.

I improved my symptons quite a bit by cutting out cauliflower, broccoli and red grapes. I used to eat all of those foods every day.

Good luck to you and it sounds like you are going the right way, I can't wait to be advised on the FODMAP diet.

By the way, I am in the UK

[sa45 in reply to Hidden]

Thank you so much :). 5 months seems like such a long time to wait, I can certainly share details of my dietician once I meet him this week. I can keep you posted on how it goes.

I've had to also cut out onion and garlic, makes it tough as these form the basis of a number of cuisines, Italian, Indian Thai etc.

I'm hopin this really is a case of short term pain and log term gain!!

Hope our symptoms continue to improve

[PatV]

I have IBS-C and Parkinson's. I have been transitioning to FODMAP and probiotics. I had a great week. Then yesterday a difficult BM led to an extremely painful attack and I had to take my last percoset to go to sleep. Tomorrow I'm making an appointment with the physical therapist for pelvic floor pain. That helped me before and I went a whole month with no pain until I ate fancy spicy foods at a holiday party I will ask about a dietitian. I'm dreading a colonoscopy because it was the prep that set this whole torture off in the first place.

[sa45 in reply to PatV]

It's the fancy spicy foods, they get me all the time :)! Do ask to see a dietician, it will help and its such a quick way to relieve immediate pain. I also do Yoga and find that helps with stomach muscles and relief of pain (good pelvic exercises too).

Hope it goes well and you feel better real soon

[John43]

Thanks for the reassuring comments on what helped you. It can sometimes be a mystery when we are told we have no serious illness, yet we feel awful.

Maybe time to try the Symprove.

John

[sa45 in reply to John43]

indeed, day to day life becomes a mare and simply distressing!!

Therefore, left to one is left to one's own device to find a cure, researching in to the science behind the gut and it's reaction to food has been helpful. I have some faith in the research that sits behind the Fodmap diet..

Give Symprove a try if you can.

[Hidden]

sa45 - thanks very much for the post, it's really helpful. Agree with you wholeheartedly regarding the Fodmap diet, particularly as I felt broccoli and cauliflower were causing me problems and since I have stopped eating them the IBS isn't as bad as it was a couple of months ago.

Best of luck to all on this site, it's a 'silent' disease that no-one in the medical profession seems to understand unless, of course, they suffer it themselves!

[marie-therese]

sa45

I too have been on the Fodmap diet for the last 3 weeks and find my IBS symptoms have eased, particularly the bloating which would keep me awake at night. There are plenty of good foods that are on the permissible list that I wonder is it really necessary to be supervised by a dietician. You mentioned going out for a meal and enjoying it. Are there not pitfalls here as you don't know what Fodmaps are in the meal. Obviously don't order broccoli or onions etc. but what about invisible ingredients like gluten?

Glad to hear your symptoms have improved. Hope it continues.

[sa45]

Hi Marie, thanks for your message

Yup - you're absolutely right, on closer inspection there were quite a few things that were on the 'forbidden' list that were hidden in the menu!

Since then I met with the dietician and now on week 2 of FODMAP diet:

Observations so far:

- reduced bloating (the discomfort around the upper abdomen has improved)

- fewer visits to the loo (a relief)

- feel strong withdrawal symptoms - not sure from what but something definitely feels amiss, weak and dehydrated (drinking lots).

- cravings for forbidden stuff are still quite frequent, haven't quite normalised yet..

6 weeks to go, slow and arduous process but worth the short term

I've been also advised to calm things down on the exercising front (no more hot yoga, or strenuous core exercises) which has been a little challenging.. but strangely enough inches around the abdomen are starting to go down..

Hope yours continues to go well too.

[Hidden]

I am so glad the FODMAPS is starting to take effect. Good luck with it and let us knows how it goes!

[sa45 in reply to Hidden]

Hey Inndie - thanks

I'm on week 4 and now beginning to struggle..

- diet is far too restrictive and feeling down about it, really bored of the food options. Its taking it's toll and over past week or so have probably followed it 70% of the time for this period.

Weirdly I still won't let go of the diet completely because something instinctively suggests that the gut is beginning to heal. Therefore I'm still trying to control any deviation.

- I had one unknown reaction to something which caused me quite a lot of pain and discomfort. I do hope I don't develop extra sensitivity to everything that's not on the 'green list'. However, the reaction was still quite contained which made me think my gut was becoming stronger and therefore a little more able to deal with any issues

-really concerned that the bloating isn't reducing

However, I've decided to re-set mentally and give it a final push for the next few weeks. I've come too far now. ..!

12th March seems a lifetime away...but will persevere. Will be contacting my dietician for advice..

A bit more detail on progress also features in my response to Bilabunny below

[Bibabunny]

Hello, thanks for all your comments, its really interesting to hear how you all manage your symptoms when there little help from the dr and hospital. I have a wee Q - how long on the fodmap until you can expect to experience a difference? Is it 8 weeks? and why reduce excercise? I am curious, as it seems like the only way to help symptoms.

[sa45 in reply to Bibabunny]

Thanks :). To take your questions in turn both are in the context of allowing the gut to relax and recover by the removal of all potential 'stresses ' caused by food or strenuous activity:

- I began to experience a certain calm in symptoms within the first couple of weeks and I felt I was gradually getting stronger week on week. As I understand it, the 8 weeks marker represents a sufficient time to re-build your gut and thus making it far more robust to deal with any potential irritations allowing you to re-introduce foods at a pace that allows you to work out what may be the 'disaster' foods for you.

However, I was caught by surprise when I hadn't eaten anything on the 'red list' and had a horrendous reaction to something which brought back few of the horrid symptoms and made me realise how I had actually improved until that point...

-exercise has been reduced to gentle running or anything that doesn't cause any 'stress' to the core. Hence hot yoga had to go, but I missed it quite a bit and did a session last weekend which did actually have a negative impact - felt awful during class and for a few days after.. I can't live without exercise and was advised by my trainer that I had to eat more! But the food is so damn BORING it's quite a task and meanwhile the bloating continues (caught in a terrible situation- restricted diet but bloating continues, to reduce bloating (I want to get back down a size) need to exercise, but in order to exercise need sufficient carbs to provide the fuel..aAAAGGHHHH!!!!)

[flowered]

Its a real pity Symprove is so expensive, given that its a very simple grain/ water ferment based on traditional Eastern European souring agents/lacto ferments made of grain--Dead cheap and easy to make.

And given the fact you need to take it pretty much continuously - it comes across as rather exploitative given the desperation and numbers of IBS sufferers