Bad ibs gas, Desperate for help - doctor does not know how to help

[Rocky-Road]

Hi all,

I'm new to this forum and really finding it quite hard to write this as it's so embarrassing, I've not told anyone other then my doctor who simply said I've tried everything they've advised and none of the tests show any issues and so she's not really sure how else to help, I feel so helpless with this.

I've had ibs for as long as I can remember, majority of the time I can ease the symptoms by cutting out culprit foods (tomatoes, apples, oranges, broccoli, bran,, etc) and adding more vegetables to my diet. Since my diet change I have noticed a difference in my cramps, diarrhoea and constipation but one really embarrassing symptom still remains... I get really REALLY bad gas and I can not control it, at around 12pm every day my belly will start to bloat and I'll feel so uncomfortable, I try to hold the gas in but it sort of leaks out - it's disgusting and gets worse after eating, I stink and people are starting to notice, I just want to shut myself away.

I've tried the following methods to help but nothing has worked :

Activated charcoal, peppermint tea (actually makes my cramping worse), buscopan, eating slowly, breathing techniques, exercise daily, eating little and often.

Nothing is working and it's getting 10x worse, I used to be able to hide it but it's just not possible anymore. I feel disgusting, I use so much body spray, perfume and deodorant but nothing can mask the smell and I can't hold it in or 'just wait to go to the toilet' .

I'm desperate for any help or advice, even just to hear from someone going through the same issues - I feel so alone in this.

[FRreedman]

Okay, stop drinking all fizzy drinks, reduce alcohol intake. Stop eating peanuts, sweetcorn, Brussel sprouts and baked beans. Drink at least 2 litres of water a day. Put small mouthful of food into your mouth and chew really well. This should help you, and you should notice a difference in 7-10 days. Good luck.

[Rocky-Road in reply to FRreedman]

Ahh I eat sweetcorn daily so will definitely cut that out, thank you so much.

[janetmtt]

have you tried a really good probiotic -they do help me with pain gas and wind

[Rocky-Road in reply to janetmtt]

Hi, I take yakult daily. Is there a better probiotic you would recommend?

[asbayford in reply to Rocky-Road]

symprove has a 12 week program, it's quite pricey, but according to my gp and functional therapist it's the only one that has been proven to work

[janetmtt in reply to Rocky-Road]

Look at Optibac. If you contact them they are brilliant at asking questions and getting best one. Bioglan is good, Biokult i love can highly recommend so many good ones out there. ,

[london81 in reply to Rocky-Road]

i found the probio7 ones really good i had really really awful gas. they have one of the strains supposed to help with gas ( i read a study then took list of the strains supposed to help into the shop to ask for help).

i also did the fodmap elimination diet, take digestive enzymes with every meal ,cut out fizzy drinks and drink loads of water

my gas has reduced by about 60 percent, i only get it bad before my period or if i eat something accidentaly that disagrees with me. i tend to stick to the same foods most days

[annelii]

Have you tried cutting out onions and garlic? That’s worked for a couple of people I know. One of them tried the whole FODMAP diet but In the end that’s what it was. All best.

[Rocky-Road in reply to annelii]

FODMAP diet is something I've not tried yet, I'll begin researching this and give it a go. Thank you

[asbayford]

I would say definitely do the low fodmap diet (with a dietitian), the foods that tend to do that are the ones high in GOS and fructans, monash university have an app where you can search a vegetable and they will tell you if they are safe or not. 90% of the time, it's the food! Senocalm IBS is pretty good at getting the gas out quickly. x

[Rocky-Road in reply to asbayford]

Definitely giving this FODMAP diet a go and will look into senocalm ibs. Thank you

[Alysm]

Hi have you been tested for SIBO? If not ask your GP or gastroentologist for a breath test. Good luck

[Rocky-Road in reply to Alysm]

Is SIBO bacterial overgrowth? If yes then I've not been tested for it and will certainly ask my doctor for this test. Thanks a million

[Alysm in reply to Rocky-Road]

Yes it is. I had tests/scans etc for absolutely everything and they all came back clear apart from the SIBO breath test. But I had to ask for this test as it was never offered to me.

[301246 in reply to Alysm]

I had the hydrogen breath test which came back positive for SIBO but no action was taken. I'm in pain day and night with trapped wind and nhs hasn't an answer. Using a private nutritionist for over a year trying different supplements. Had a private stool test which showed high markers for h pylorifor which nhs said was negative.' Almost given up!

[Alysm in reply to 301246]

You need to go back to a gastroentologist and ask to try Rifaximin antibiotic for SIBO. Also ask to be tested again for h pylori as it showed up in a private stool test. Other than that I have no answers as I am still suffering with bad stomach aches myself. Sorry

[301246 in reply to Alysm]

Rifaximin not available in the UK. Seems to be an excellent antibiotic in the States but I have been told it will be years before NICE agrees for it to be available in the UK. I am awaiting result of CT colonoscopy. Hope you soon get some relief from pain yourself. I will show the stool test results to Gastro when I see him for the result of the latest test.

[Alysm in reply to 301246]

Hi I am in the UK and have been prescribed Rifaximin twice. Unfortunately it has not worked for me.

[301246 in reply to Alysm]

I can only think that you saw a private doctor who has prescribed Rifaximin for you? What a pity it didn't work for you.

[Alysm in reply to 301246]

No it was a nhs gastroentologist and then my GP after

[301246 in reply to Alysm]

Where are you in the UK please? Had terrible trapped wind pain all day yesterday and all night. I am desperate for some relief.

[Alysm in reply to 301246]

I am in Kent

[301246 in reply to Alysm]

Thanks - I shall speak to my GP and ask why it's available in some parts of the UK and not in others.

[Jem7]

Hi sent u a message re this.

[Rocky-Road in reply to Jem7]

Hi Jem7, I can't see any messages in my inbox

[Misscrisps]

Do you eat gluten? I'm not coeliac but found that once I cut out gluten, well wheat really, my wind problem decreased dramatically. I still have some windy days but SO much less. Windeze or Wind Settlers (Simethicone) help too.

[Rocky-Road in reply to Misscrisps]

I try avoid gluten as much as possible. Will look at getting some wind settlers, thank you

[Hidden]

Hi Rocky do you live in the UK?

[Rocky-Road in reply to Hidden]

I do

[Hidden]

You might find food intolerance tests help. Most tests from standard healthcare providers only test for dairy egg and gluten. If gluten does not come up then you are sent away as normal and making a fuss. Aged seventy found out I had dairy egg grains such as wheat rye barley and banana and maize and rice. I was not normal and I was in a lot of discomfort. I have ruled out all potential allergens and am much better. I had a test for over 60 different foods and the test only came in about three years ago. Luckily I am lactose intolerant so buy lactose free milk and cheese. Low lactin/lactose can be found in hard cheese so a bit of cheddar cheese or gouda does me no harm. I eat oats but not too many or the same can happen with the gassy probs.

[Rocky-Road in reply to Hidden]

Hi, I've had tests for lactose intolerance, coeliac, gluten etc but nothing else. How do I go about getting the other tests done?

[Hidden in reply to Rocky-Road]

Log onto Alphega Pharmacy Group. They are linked to germany and france and do a smart test which takes a finger prick blood test and runs it through a computer which is interpreted by a trained pharmacist. There are hundreds of chemist branches linked across the Uk some with special services for allergy screening. You find the Alphega map locator of branches with services and check by giving the nearest town or village in your area rather than postcode as boundaries between counties may give you less addresses in your area. Each pharmacy has a number icon, which you can click on to find the local branches. You might have to look at the list of each branch services as not all will do allergies. I live in a rural part of the UK so was surprised I had one of these a few miles away. They have been brilliant closing a gap in services run by the NHS but still linked if you need referral.

[Rocky-Road in reply to Hidden]

That's brilliant, never heard of this before now. Will be giving this a look over tomorrow as well as starting the FODMAP diet. Thanks so much for all the help and advise.

[Hidden in reply to Rocky-Road]

Fodmap recommends to reintroduce the food but this can be a revolving door. Have heard of folk who were really ill after reintroducing the food.

Fibre gel helped with the runs as it absorbs excess water in the large intestine so you don't have the same problem. I take flavoured sachet occasionally. Certain fibrous foods like bran can irritate the bowel and fibrous vegetables with pea shells and beans can make things worse. Carrots and mashed potatoes might be easier for digestion. Spasm and pain can be helped with Merbeverine. Cocodomol recommended by pharmacist really helped with IBS pain. When I first started to change my diet I could only think of French bread Croissants cakes cream and all the goodies Everything I loved was forbidden. It was a cruel blow! But it has paid off.

[asbayford in reply to Hidden]

Mashed potatoes and carrots are my go to during a flare! And white rice great advice x

[Hidden]

You obviously have had success with the Fodmap diet. Alas Could not find out about rice and maize intolerance as these are not tested for in the UK health system, I have o use lactose free milk too..but the diet exclusion has helped.

[Rocky-Road]

Hi Everyone,

Firstly thank you all so much for your advice and input - I'm taking it all on board and have been slowly adjusting my diet to a FODMAP diet & also looking into SIBO testing.

Since writing this, I have made a couple of discoveries, one of which leads me to believe banana's may be making my gas worse. I eat 2-3 per day but did not have one until around 4pm yesterday, coincidentally my gas was not apparent until around 4:30pm yesterday which is much later than usual (usually this issue starts mid-day) and so I am cutting banana's out to see if that helps.

Also, a really bad discovery I've made is that gin completely removes all odour from my wind. I had a gin & lemonade on a day which my gas was particularly strong - Around 1 hour after having the drink I still had gas but no odour! I tested this again last night with one small shot of gin (just bigger than a teaspoon size) and once again all odour vanished! This would be a brilliant answer but I'm really not comfortable with having alcohol everyday (my dad was an alcoholic so it's a very sensitive issue for me, I very rarely drink) and it's obviously not the healthiest answer.

So, I have done some more research and found that Juniper berries are the main ingredient in gin. Also, Juniper berries have been known to relieve bloating and digestion issues - I'm hoping these are the answer I'm looking for but i'm struggling to find a reliable supplement with Juniper as the ingredient.

Has anyone heard of juniper helping? if so, can you recommend where I can buy it for daily consumption (Not including alcohol beverages lol)

Many thanks.

[Tella672]

Hiya, you could by Shreddies which are flatulence filtering underwear, I know it won't solve the problem but it might help with work and social events? (they're quite expensive but so is good gin)

[jbradshaw1 in reply to Tella672]

What a great tip! I just ordered a pair. Social Settings are in need!!