IBS D Hell 23 years

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I’ve had IBS D 23 years on and off
Some years I can’t even go out far
Some years it disappeared
It’s given me travel anxiety and work is a nightmare obviously so I work from home but I need a job outside the house as self employment isn’t making enough to survive on.

Seem a hospital consultant routine exam questions he had I’ve IBS basically live with it ???

I find it’s 90% better when I eat the weightloss meal replacement packs vlcd but obviously that’s unstainable.

Doctors won’t test me for allergies or intolerances so next week I’ve arranged for a nutrionlist app

What do others think about IBS and intolerances allergies

I can’t have cocoa coffe tea as it gives me migraines
I’ve been told don’t do FODMAP or elimination diet as gut bacteria maybe my problem ?

Atm my life is virually reclusive as I can’t go out unless I’m 5 minutes from a toilet 😥

No solutions as I have ibs c. I have got used to it but it does affect my life. There’s no joy in eating out or staying at a hotel for a holiday. I gave up a job that involved overnight stays away as I could not cope having to eat out.

About 20 years ago I had a go at trying to figure out my own food intolerances and it did help.

I’m now trying to feed my gut good bacteria but it’s hard to sustain.

Do you take pre pro biotics?

I’m sorry you suffer too :(

No I don’t a dietitian told me she thinks it’s my gut bacteria playing up but I couldn’t afford her £70 an hour fees so am trying a cheaper professional

Have you found they help ?

Have you had things like a colonoscopy and gastroscope to check for inflammation etc?
Have you tried taking buscopan? I find they often calm my stomach down and stop me needing diarrhoea for a few hours.
A good probiotic would be good to take each day too if you have gut bacteria issues going on. Bioglan is a good one and you can get a pack for about £12 on Amazon. Turmeric tablets are also good to take daily as they are anti inflammatories for the gut.
Foods that seem to trigger me are lactose, anything really fatty/oily like battered things or red meat, too much sugar and too much fibre. I can eat fruit and veg but only in small quantities each day. If I eat something like a fruit salad then i’ll bloat up and end up with bad cramps and diarrhoea later on. Alcohol also doesn’t agree and neither does caffeine.
Anxiety makes my symptoms flare up too which is difficult as I often get anxiety about going outside incase I feel unwell. I have to try deep breathing all the time and keeping myself calm. It’s a horrible illness and I hope you get some further help with it

Also have you had ask the blood test for coeliac disease? And the breath test for gut bacteria? Ask to be referred to a proper gastroenterologist who can get all the proper tests done for you

Have you tried cutting out food groups by trial and error? The hospital were useless with me, but I discovered by food group elimination that I'm lactose intolerant. Avoiding lactose helps me enormously. I also had problems with very fibrous foods, like pepper skins. Self-help was the way forward for me.

Very fibrous foods are a killer for me too. I ate a bunch of grapes a few months ago and was so unwell from the skins and the seeds and the high sugar content. The fruit and veg that don’t seem to bother me are sweet potatoes, green beans, pineapple, blueberries, avocado and mushrooms. I can tolerate things like peppers and tomatoes in very small quantities (ie no more than 2-3 pieces). It’s such a pain and I find it difficult to eat out but there’s not much I can do about it other than try be extra careful

Purplerain101 Thankyou. No consultant said as I’ve had it 10 years at that point if it was serious I’d not be here ... I was left very upset and neglected and last time I went to my GP as I couldn’t even go to the shop 3 minutes walk as needing the toilet he gave me an anxiety leaflet :(

I had late babyloss 3 years ago I told them how ill I was they said it was pregnant sickness !
It was sepsis I nearly died along with my baby my faith in medical profession is sadly o

I will looo into what you’ve said Thankyou x

eurochick No I haven’t as I do meal replacements and they have lactose in them so I thought I was okay as I have virtually no ibs on those ? It’s worth a shot tbh
Thankyou

Purplerain101
Thing is I think it’s relationahio stress with me as in 1999 when I was pregant with my second it went for 5 years it’s started again when I found out my ex was cheating on me when I was pregnant with my 3rd
Then a few years later when I was single it went again for 2 years
Then I moved in with my now husband it’s bewn mainly bad unless I eat meal replacements ?

I know my mum has dairy intolerance so I’m not sure

I can’t eat peppers cauliflower nuts cream full fat milk

The last few years have been terribly stressful so I know it’s also anxiety and food related

Thankyou for your help

Fodmap might work. I'd push for a colonoscopy to look for crohns/ulcerative colitis if I were you.

Bloomed

My ibs d is so bad I can’t travel so I don’t know how I’d get 20 miles to a hospital we have no car and buses aren’t the best even without ibs d

I may go back on meal replacements to have it done

Thing is if it was a medical reason I’m not sure it would disappear a few times for a long period then come back would it ?

You can have flare ups. You'd be given bowel prep to clean yourself out before the procedure anyway.

I don’t want to say it’s “just” anxiety as it does sound like you have food intolerances and some sort of gut issue too like IBS or chronic/celiac disease. You need To get your GP to do a full range of blood tests. The inflammation one can highlight if you have something going on. If it’s raised then they will refer you to a gastroentorologist who can help you further with different medications, tests and help with working out what food intolerances you have.
Could you take Imodium and buscopan before a hospital appointment to stop you needing the toilet for a few hours? Bad anxiety can cause IBS to really spiral out of control. They say your gut is your second brain because when you’re happy and relaxed your gut is also happy and relaxed. But when you’re anxious, stressed, tired, hormonal etc your gut will get distressed and cause you problems.
Could you maybe ask the GP for a referal to a cognitive behavioural therapist who will help retrain your brain to stop feeling so anxious about leaving the house incase you need the toilet. Once you feel calmer in yourself it might help to stop the symptoms a bit

*chrons/celiac disease

Have you tried silicol gel? (Cheaper on amazon than Holland & Barrett) I know people with IBS who swear by it

I don't understand the reasoning to not try FODMAP?

I have ibs d and have had it for years. For me I know my triggers are bread, anything other than cheap white sliced, most fruit and anything greasy.

Have you done an elimination diet?

I use loperamide (Imodium) when I have a flare up and take it for a week or so at s time if I need to. I also do take it preventative your if I'm doing something that makes me anxious eg flying. The thought of not being able to get to a toilet in time brings it on too.

It's awful but you shouldn't be suffering to that extent.

I 2nd fodmapp idea, also try symprove, and on low dose antidepressant that works on bowel. these have made a difference.

that said am currently off work due to severity. but its worth trying the above.

Your symptoms sound very difficult OP, I don't understand why your doctor was so unsympathetic. FODMAP is about both enzymes and gut bacteria so strange that someone has said it isn't worth trying an elimination diet due to bateria issues. It's also evidence based so long as it's based on the resources from Monash university, and has been shown to make a significant difference for lots of people with IBS symptoms. Given the extremeness of your symptoms I think a dietitian would be a good idea too.

Here is the Monash FODMAP website. They have a really helpful app too. It does cost a small amount but has the best database and is regularly updated.

I have IBS-C with sensitivities to lactose, fructose, sorbitol, galactans and oligosaccharides. My symptoms are volume based for most of the FODMAPs, so for example I can eat one piece of bread or a teaspoon of honey, but more than that (or both, no more honey crumpets for me) and about eight hours later I'll have about three hours of stomach cramps. I accidentally ate some peas a few nights ago and the cramps hit in about three hours but lasted 24 hours. I think this is why it took me so long to figure out that some foods were triggering symptoms as there was too much variation. My next step is a dietician with FODMAP training and then back to my GP to talk about further testing and maybe antibiotics.

Thankyou for your replies I appreciate all of them

I have the monash app FODMAP apps the dietitian told me not to do them as guy bacteria maybe messed up ?

I probably do need to go back to see another doctor just makes me anxious after last time it took me from 1995to 2010 to get a hospital appointment begging and crying at Doctors 😰

But I agree FODMAP is best to start xx

My thinking is that if I can show my doctor that I have tried to manage my symptoms, plus have a good food and symptom diary then they are more likely to take me seriously. Having said that I also have silent reflux and when PPIs didn't work the doctor just told me I had to live with it. Like you I think the fact that I'd had it for many years made them take me less seriously which was very frustrating.

Re FODMAPs there are two key stages of digestion, first the enzymes in the upper intestine, and then the bacteria in the lower intestine. So for example with milk if you have lactase in your upper intestine then the lactose gets converted and doesn't pass through to your lower intestine to feed the bacteria there. It's the fermentation in the lower intestine that causes the symptoms. Probiotics can add more 'good' bacteria, and some antibiotics can wipe out all of the bacteria good and bad. I hear that fecal transplants are showing some promise, but not something you want to DIY really!

A lot of the Vlcd don't have gluten in ? Have they ever checked you for coeliac ?

nooka
Yes your right I’ll have my app with the nutrisonlist next week prob do FODMAP I need to lose weight so will have to try do the 2 together
Then I can go forarmed to my doctor as tbh it’s ruinkng my life
Thankyou for you help x

notapizzaeater I’ve been tested for that that’s the only thing they tested me for separately about 4 years ago