To ask if you are an IBS sufferer

[RhodaCamel]

What helps with your symptoms?
I’m at the end of my rope with this.
I’ve had IBS on and off for the last 20 years and it’s completely controlled my life. I am now almost 47 and it has become much worse the last few years, I don’t know why that is, maybe my age and approaching perimenopause?
I’ve had endless tests:-
Calprotectin stool test which was negative
Bowel cancer FIT stool test which was clear
A clear gastroscope and biopsies
A clear colonoscopy
Scan on upper digestive system which was fine
Scans in pelvic area (ovaries fine but have uterine polyps but doctor doesn’t think this and IBS have any connection).

The gastroenterologist wasn’t helpful and just said that as the colonoscopy was clear he couldn’t help me anymore.

If I’m lucky I’ll get a week per month when my digestive system is calm (I have no idea why this is as I do nothing any different to normal when I have the calm days) but other than that it’s a constant up and down with symptoms of constipation or much looser, trapped wind, lots of gas and wind, grumbling, growlings and gurgling (these even wake me up at night) trapped wind type pain, massive bloating especially at night and just a general upset and angry gut.
Ive tried the low fodmap diet twice under a hospital dietician and that doesn’t really help even though I know it’s works so well for a lot of people, I’ve tried hypnotherapy, reflexology, I eat well, exercise, don’t drink or smoke. Tried all the IBS meds (the only one which really helped was buscopan but that gave me numb fingers so am scared to take again).
I just do not know what else to do or try!
How do you cope with your day to day symptoms and what works for you?

Toomboom I have look into that before but as I only get diarrhoea every now and then I thought maybe not but I have a gp appointment coming up so maybe I should ask about it. What were your main symptoms?

I was going to ask about BAM as well, as I have that and apparently it is quite common for people who have it to be misdiagnosed with IBS. For me, the main symptom was terrible diarrhoea, but also a lot of stomach pain and bloating but not constant and not triggered by any particular food stuff. Also (and sorry if TMI) my faeces are often quite a bright yellow colour (indicates bile I think).

If you can push for the test it’s worth it - if you do have it, the medication I’m on almost entirely clears up the symptoms.

Peppermint capsule and probiotic every day.

Cut out dairy and worked on reducing stress levels and getting more sleep.

Mine has been dreadful. You really have my sympathy as it’s exhausting and can over take your whole life. So hard to plan anything when you can’t be sure you’re going to be well. My main tactic is to avoid foods I know will cause me problems. Low fodmap has worked well for me and I will always look for a low FODMAP option when eating out etc.
I don’t eat big meals. Go easy on alcohol, spicy and fatty foods.
I’m also on amitripyline which I find helps a lot. I only take a low dose but it does seem to have stopped the worst of it. I think this is one of the older style ones you talked about (I have successfully come off it in the past too when needed).
I work very hard to keep my anxiety at bay and not allow stress to worsen it.

But all that said, I think a lot of it is hormonal. When I was on the pill I noticed a big improvement and consistency in how my stomach would behave. Just a shame the pill was awful for me for other reasons!
Reading with interest as maybe I can pick up some more tips too. Lots of good thoughts your way.

I took citalopram which is an antidepressant. My belly was worse for two or three days after taking them. I didn't feel great mentally for a few weeks which is normal when you take them but then woke up one day completely fine and no belly troubles for two years now :)

Try Reflexology once a week, for a month then fortnightly then once once a month m. Honestly it’s amazing for regulating the digestive system. I am a holistic practitioner and treat
Many people with ibs & have great results x

Do you have pelvic pain? Stabbing pains in bowels? It is very common for women with endometriosis to be diagnosed with IBS. I was, age 17. A few days ago age 39 I had extensive endo operation including bowel endo removal. Good luck x

I've had it for the last 10or so years, ever since my dad was born. I have had to totally change my life. I can't eat like normal people so I don't eat until I get in from work. Eating seems to set me off and like you I've tried all the ibs friendly diets! If I have to go out to eat eg so my social life doesn't dry up completely I take Loperamide between 8 and 10 capsules).
I don't use public transport unless there's a toilet on board so can't go on trams or long car journeys unless I've a) not eaten and b) downed a shed load of Loperamide.
I had to quit my job as colleagues were getting suspicious that I was spending so much time in the bathroom. Fortunately I'm now self employed so that's not an issue.
I can't do anything spontaneous eg a friend phones up and says it's a nice evening for a walk but I've stupidly eaten my tea so I can't go. Like you, OP, I've had all the tests, cameras where I'd rather they weren't, sacral nerve therapy, biofeedback nothing seems to help apart from restricting my food and Loperamide.
Last year I managed to come up with a nice constipation diet of oats mixed with zero fat Greek yogurt and frozen cherries, mushroom omelettes and the odd raw apple. I need to get back on that really, it's just not v sociable. I refuse to let this beat me and while my life sounds like madness to normal people it means I can keep working and my social life and ensure it doesn't impact too much on my family.

Dd, not Dad!!!

Diagnosed incorrectly that should say. Wishing you all the best

I cant type on this phone. I am just going to post names of things that helped me.

The monash app for low fodmap

Digestive enzymes

Prebiotic foods

Low histamine diet (pm me for info)

The Cycle Diet

Carbs - black beans, sweet potatoes, brown rice pasta, brown/red/black rice - these are my staples

It's so boring isn't it? I've had it for years. Been gluten free for over 20 years and don't have much dairy except kefir which is helping as is very little sugar. I also take a high dose vit d, magnesium, zinc and B12.
I avoid fruit unless on an empty stomach. Onions and dried fruit are a terrible trigger as is anything highly processed. I can tolerate chick peas and nuts but not beans.
Exercise is important too I think. Sometimes though when you get a flare up you just need to go with it, rest up and be kind to yourself

@busymummy16 what were your ‘IBS’ symptoms if you don’t mind me asking. This is something that has crossed my mind before. Thank you

Also Seed Cycling - currently doing it and noticed an improvement in my sanity. Can't vouch for scientific evidence.

I cant take the pill for medical reasons so have researched a lot to help my cycle as it appears to rule my life!

@Asgoodasarest I had endo everywhere so it’s hard to single out the bowel element but I would say pelvic pain, pain before going to the toilet/opening bowels, pain while going (sometimes excruciating), stabbing pains randomly at other times in bottom area, moving from runs to constipation never normal bowel movement, sometimes blood when on period.. HTH xxx

Also bear in mind it affects a lot of women 1/10 but so misunderstood
and under diagnosed. Makes my blood boil! If you do end up thinking it’s endo DM me as I’ll recommend some Facebook groups xxx

@busymummy16 thank you I think I’ll look into this.

Awful IBS for years, can’t eat dairy, eggs, beans or pulses, onions, particularly red onions. I don’t know what other food is affecting me badly, it’s difficult to narrow the list down, I can eat something that is usually ok and will have a really bad reaction. Stress also affects me badly. I got to the point where I was barely eating, seeing all food as poisonous. It sounds extreme, but there you go! It’s not unusual for me to pass out with the pain, vomiting and excruciating never ending upset stomach. I’ve had all the usual tests and been told ‘it’s just IBS!’. I am prescribed mebeverine for the pain, which I have to be honest is not a lot of help. I take a lot of Imodium! I have started taking a fibre called Normacol, which a relative suggested to me. This has actually made some difference, and I have started to eat more regularly again. GPS have been of no help whatsoever, I have felt embarrassed in the past, and have felt as if I was wasting everyone’s time. They have been more concerned about the fact that I’ve hit my head when I’ve passed out than why I’m actually passing out! I got to the point where I felt so exhausted, probably as a result of not eating and constantly being on the toilet. I came to a realisation that I was messing up my digestive system even more by avoiding food, I think if I am honest I would say I have developed a bit of an eating disorder because of all this. Using the Normacol I have been able to start to eat more normally again, but my brain still sees food as the enemy and I’m having to be mindful of this!

@asgoodasarest you’re very welcome. The thing with endo is you need to find a really good specialist to get rid of the disease. If it is bowel endo you need a BSGE centre. On top of that there are better specialists within BSGE centres so also look at Nancy’s Nook ok Facebook for suggestions about specialists. It’s a disease much misunderstood even by doctors I think so pays to do your own research. Best of luck x

I've only suffered since I have had hernia surgery (so bowel surgery). I'm not sure if it's as a result of the surgery or a reaction to the mesh used.

I've suffered far to lomg, had all the above same as you.

So final straw was it was constant, not 1 day break, it was waking me up at nigh, doctor basically sent me on my way.

I paid for a private allergy test, told stop dairy, i have and so far I've been 10 weeks free from any pain, ache, toilet trips and wind.

Thank you everyone, so good to know I’m not the only one suffering but at the same time, so sorry you all are 🙁
Golightly133 I started having reflexology last year but at £40 per session, I unfortunately just couldn’t continue which is a shame.
Busymummy16 my sister has endometriosis and I am under gynae for reoccurring uterine polyps, I have asked the gynaecologists regularly if I too could have it but as I don’t have a lot of pelvic pain they just say no but I read it does run in families?
Skatesbythesea I will OM if you don’t mind, I have been interested in the low histamine diet for a while and seed cycling for my gynae issues.
Jacquel I totally get that, I’ve been told by my dietician that I have disordered eating as a result of my IBS, and tbh the low fodmap diet has made me worse, I’ve been almost stuck on the elimination stage for a long time as I now am too scared to reintroduce any high fodmap foods, I see so many foods as the enemy. My friends and family all say I’m too fussy and should just eat what I want but they have NO idea how difficult that actually is!
Flippyflapper I would like to pay privately for food allergy testing but scared I’ll be ripped off as some online ones have bad reviews.

Maybe take a look at the York blood test? Have to pay for it but it will take the guesswork out of identifying which foods you are intolerant of or sensitive too.

I tend to take my own loo roll with me when staying at hotels and have one that lives in the car - cheap loo roll just hurts.

I mostly avoid alcohol, which gives me diarrohea these days. And sweetcorn.

My main symptoms are alternating diarrohea/constipation and faecal urgency, so not anyhing as bad as a lot of people have.

It’s only recently I have felt more in control of my symptoms but my god, IBS can be so debilitating and isolating.

If I’m not stressed I can eat whatever I want but giving up dairy has saved me. During the working week I eat relatively plain food in smaller portions, avoid too many sweet things as that is also trigger for me.

What has helped a lot though, is accepting it. Being open about it and planning my life around it (to some extent!). There’s an Instagram account I like called the tummy diaries if you are on there.

I think the days of feeling embarrassed about IBS are over. Like you have said, it affects so much of the population.