To ask for help controlling my IBS😔

[Fruitpastilles1]

Posted before about other things but forgot password.

I’m really struggling to cope with having IBS. My GP is really kind and patient, but I don’t want to keep going back and taking up appointments for something they can’t do anything about. I have been prescribed tablets to stop diarrhoea multiple times but they don’t seem to be making any difference.

I’m going to try to explain this in the least embarrassing way possible. I have frequent ‘flare ups’ where for a couple of weeks at a time I’ll have non stop diarrhoea. I have horrible cramping sensations- they usually start about an hour after eating a trigger food. Once the cramps start, I need to get to a toilet immediately, and over the course of the next few hours I’ll have diarrhoea 4/5 times. Only after this will the cramps and nausea go away. Then I can’t eat anything for the next 12 hours or so as once my stomach is irritated, no matter what I eat I’ll be unwell.

I’ve had mucus and blood in it on a few occasions. I’ve also had blood when I’m wiping, which I know isn’t too concerning, but it’s at the point where it’s really painful down there because I’m going to the toilet so frequently. The other thing that I’ve noticed, and this is obviously very embarrassing, is that my underwear is always marked, possibly with brown blood or faeces, I’m not sure which. I always wipe fully and use wet wipes, and I’ve checked using a mirror and there are no obvious cuts or marks down there, so I’m not sure why my underwear ends up with marks, but it’s now impacting the clothes I can wear as I’m scared to wear anything white or light coloured. I don’t know if it’s leaking out of me during the day but I’m starting to get worried about it now.

I feel like this is seriously impacting my life now. I’ve had blood tests and stool samples which all came back completely clear (apart from low potassium but that was easily sorted with a prescription). I have been tested for coeliac twice and this was negative too. My calprotectin result was fine, so IBD has been ruled out. My DR has said it is IBS and as difficult as it is, I need to learn to manage this, but I’m only early 20s and the thought of being this way for the rest of my life is getting me down. I’ve tried FODMAP with no success. Apart from this I’m in good health, my BMI is 20 and I exercise everyday.

The only unhealthy thing is that I used to eat a lot of salt and I’ve had to learn to control the cravings. I used to put salt on things like cereal and fruit , and would wake up during the night craving something salty like crisps. Even though I still crave it, I don’t eat too much salt now, and overall my diet is healthy.

I know this post is a bit long and I’m not really sure what I’m asking for, but does anyone have any advice or anything I could try to control my IBS? Sorry about the TMI parts, I tried to keep it as least-embarrassing as I could. Any advice would be appreciated

Did you see the Channel 5 documentary last week How to Stop your IBS on Sept 16th?
I have two twenty something offspring with IBS. One of them is doing a poop app where they record everything

Sorry no real help but if you find help let me know.
I have about 10 years ago seen an nhs dietician. Gp referred me. Through her we discovered intolerances. This helps to a degree but I still cannot go anywhere without making sure bowel is well and truly emptied and I am well up on immodium.
Did recently see someone who promised to help and I believed them . Next appointment it was a different person who was worse than useless gave me an exercise sheet. If I was able to do the exercises I wouldn't be there.
I am toying with going private as it is awful .
Sorry I can't help .

I have ulcerative colitis and the symptoms you describe sound exactly like I had with that. You need to push for bloods and a colonoscopy to confirm or rule out anything other than IBS. My bloods were normal yet my calprotectin was sky high but the calprotectin may only show up during a flare so it depends when it was taken. It can vary significantly.
You mention trigger foods - if you know they’re trigger foods in the nicest possible way why are you eating them? I don’t mean that horribly I just mean have you identified on the fodmap diet certain foods that are a trigger for worsening symptoms or you are testing a link?
Watch that programme suggested above and also the book ‘eat yourself healthy’ by Megan Ross is really helpful for all sorts of digestive issues with great advice - try increasing your healthy bacteria by upping the variety of plant foods in your diet.
I’m sorry you’re feeling so awful, it’s horrible.

Did all this start after a stomach bug/norovirus?

I had a perfectly functioning digestive system until I had a very bad stomach bug / poisoning in my 20s and I was diagnosed with post-infective IBS.

My triggers are generally too much fibre, especially vegetables. Now in my 30s and I can and do live with it - it has got a lot better - but occasionally it flares up. If we eat out I'm careful not to overeat in case my digestion goes nuts but at home I'm more relaxed and can eat most things.

My tips for dealing with it:

• stress management: do whatever it takes to relax: bath, book, tv. Try to distract yourself
• Buscopan is good for cramps and I found Immodium melt in your mouth tablets are best for diarrhoea.
• herbal teas such as camomile and peppermint are always in my cupboard for when my stomach feels ropey. Ginger tea is great if you have nausea.
• my DH has a prescription of mebeverine for his IBS but I've never tried it; maybe ask your GP

I try not to take any tablets unless strictly necessary as they all have side effects.

Really sorry you are going through this but rest assured you'll get better at managing it x

I take an immodium before bed every night otherwise I'd go 7 or 8 times in the morning and never get to work.
Learn your triggers. Broccoli, sprouts, sausages, garlic and onion are mine. They leave me bloated and in pain all day.
Limit gluten and dairy. I can have a small amount with no ill effects. A banana milkshake had me crying on the floor in agony.
Sugar sets mine off too.
Doc told me to avoid ibuprofen, alcohol and fizzy drinks.
It's taken me 18 months but I've learnt to only eat dodgy foods on days I don't have to be anywhere so I don't miss out.
Trips out get an extra immodium in the morning.
Stress is also a trigger. I'm OK at work now as I've timed my distance to the toilet and the people I work with know when I need to go, I mean now🙂
If I go out I know where all the toilets are.
18 months ago my life was hell thanks to ibs but now I'm learning to understand how and what affects me there is definitely ight at the end of the tunnel.
Bit if a ramble but hope some of that helps.

Can you identify the trigger foods ans avoid them?

These two things changed my life- honestly

The Low FODMAP diet, but from this book (tried other approaches to it, incl NHS group, which weren’t as clear and didn’t work)

www.amazon.co.uk/IBS-Elimination-Diet-Cookbook/dp/0451497724/ref=mp_s_a_1_1?dchild=1&keywords=patsy+catsos&qsid=259-7436171-6642260&sres=0451497724%2C9123797363%2C0982063598%2CB00NBKIO4U%2CB014ICKF8W%2C0982063504%2C9124087513%2C9123797258%2C9123797355%2CB01LP2Z1Q4%2C0982063520%2C912379724X%2C0982063539%2C0091955351&tag=mumsnetforu03-21&qid=1632139328&sr=8-1

And these

www.amazon.co.uk/Alflorex%C2%AE-PrecisionBiotics%C2%AE-abdominal-unpredictable-movements/dp/B013PC4UI2/ref=mp_s_a_1_1?dchild=1&crid=3FED4Z6FPY1Q4&keywords=alflorex&sprefix=alflo&srpt=NUTRITIONAL_SUPPLEMENT&qsid=259-7436171-6642260&sres=B013PC4UI2%2CB07BWJBK5R%2CB07NCYSG23%2CB085L7YZY6%2CB07CMKN85F%2CB0086VZ3G6%2CB004SGO4DG%2CB00VEILW04%2CB07T811PFT%2CB08DHZ3LMT%2CB0041M9NVU%2CB08GQ4KFR1%2CB08NW8PTYN%2CB071Y1DHLY&tag=mumsnetforu03-21&qid=1632139455&sr=8-1

I have some foods that I know for certain trigger it off and I just avoid them completely, but sometimes random foods seem to become trigger foods too. For example, white bread used to make me very unwell so I completely avoided it and only ate brown bread. After a few months brown bread started making me unwell too, and I tried white bread again and it was fine! It’s been like that with other foods too where I’ll be able to eat them with no problems whatsoever, then one day it randomly becomes a trigger food! I used to love apples but they are a trigger food now too. Honestly, during a flare up I’m not sure whether it’s the food itself that’s triggering it or whether my stomach is just upset and therefore anything I eat will cause problems. Sorry, that was my mistake, I should have made that more clear in my original post!

Thank you very much for the advice, I will definitely check out the documentary and book! I will ask again for another calprotectin test as I just gave a sample so I could hand it back the following day and it wasn’t actually a flare up sample. Thanks for the help

I know wet wipes are more practical but they could be irritating your skin. Have you tried witch hazel gel? You can also get numbing sprays. (I had a birth injury and fissures urgh)
I know you’re not coeliac - but I would 100% cut out gluten anyway. You can still be intolerant of it and not coeliac. I’m the opposite-it causes me constipation and hideous acid reflux, acid coming out of my nose. I would remove all cereal grains tbh.

Interestingly enough, I didn’t have any problems until I had a bug/stomach upset/food poisoning! I had eaten salmon which tasted a bit dodgy (although it was fully cooked and wasn’t out of date) and spent the next 36 hours behind violently sick and having diarrhoea. I wasn’t sure if it was food poisoning or a stomach bug but the IBS started after that and has continued on/off since.

Have you tried cutting out dairy? This changed things almost overnight for me.

Probably all things you’ve tried before but just incase..

• keep a food/ symptoms diary. My dietitian asked for exact times and amounts, so had to weigh everything as well for 3 months.
• cut out a food group for at least 3 weeks (maybe it was 3 months?) and track symptoms (take vitamins if you’re worried about lacking)
• exercise & stress reduction.
• cut back on alcohol.

My dietitian asked for all this when I was first referred, they also advise to have a healthy weight/ bmi but that’s not an issue for you

Having a bad stomach is horrible, definitely push for further investigation if its unmanageable! I followed all the advise my fo gave me, but turns out it was the opposite of what I needed to do, so glad I pushed for referrals.

Try a couple of months of high strength probiotics - I use this one every few months and it helps a lot, my BIL who is a clinical dietician recommended. www.amazon.co.uk/Alflorex%C2%AE-PrecisionBiotics%C2%AE-abdominal-unpredictable-movements/dp/B013PC4UI2/ref=mp_s_a_1_3?dchild=1&crid=1FDLXXTHGNOKB&keywords=alflorex+probiotic&sprefix=alflorex&tag=mumsnetforu03-21&qid=1632140044&sr=8-3
Be ultra strict with your diet during flare ups.

Hey OP, I've had lifelong digestive issues and was brushed off (like so many women) saying it was all in my head, anxiety, no physical problems, no allergies etc. I had enough finally when I had a really embarrassing (to me, no witnesses) incident losing control of my bowels only a few seconds run from home - I have always had to plan routes to know there are loos along the way - and finally told my psych doctor it is not in my head, I have a problem, and was referred to an endocrinologist.

It was private so battery of tests plus consultations £1000s but in addition to a FODMAP diet I try very hard to follow, he told me he thought I might have SIBO though I didn't quite test positive based on the breath test I think and also saw indications that I personally do actually have sensitivities to other foods I would not have known about (eggs, mushrooms - those I hate so avoid anyway - etc). I was making choices I thought were good like scrambled eggs on toast before a long run, already avoiding dairy by instinct so no butter, but not knowing the toast and the eggs were also bad. I was even told to have fewer bananas - the other thing I thought was 'safe' especially for running. Having to often stop on a half marathon for example, for a portaloo and spending a lot of time worrying I wouldn't make it to one. For that distance I really shouldn't need to stop to have an emergency during the race, it's 2h! I'd also go three times before the race and have people banging on the portaloo doors, very embarassing. I ran a personal best race yesterday, zero stops, ate gluten free toast with almond butter (no legumes) beforehand instead. No stops, no cramping, no diarrhoea. It can really suck and be restrictive and going out to eat I almost always end up with steak and chips (tbh I like this so not the worst ever) but so many foods are eliminated. You'd think I'd be thinner but I guess not the volumes I eat

I would 100% agree, no gluten/dairy and obvious FODMAP triggers, when you do anything like if you have an activity like I do such as long runs I would for your peace of mind plan where there are public toilets every so often, etc, and all of that of course, like PPs have said. Is it an option for you do more extensive private testing to find out what trigger foods you have in addition so there are fewer surprises?

I really sympathise and empathise.