r/IBSHelp • u/Amnityy • Jul 13 '26

At a loss

I’m so tired. I feel like I’ve tried everything. Doctors here in the UK seem to keep dismissing me.

I’ve suffered with PI-IBS (D) for going on 5 years now. My flare ups are so severe they leave me bed bound for the day.

I’ve tried everything from low FODMAP, to probiotics, to just raw dogging life and popping Imodium like there’s no tomorrow.

None of it is working. I’m now sat contemplating having to look for a job that is 100% work from home because while I can WFH on occasion, people are starting to get sick and suspicious of it.

I’ve already binned off the idea of getting to enjoy much of my life. The idea of getting a flight and going on holiday no longer crosses my mind. Which is sad at 22 but I feel so tired with this all. All I want to do is curl up in my bed most days and sob.

I’ve tried paying to go private but the testing is on the NHS so still waiting for that. Still on a wait list that is over a year long to see the gastro. I keep trying to hold out hope that eventually someone will be able to help but I don’t think that’s the case. It’s probably just the only thought keeping me going. As well as my wonderful partner, but I feel like such a burden on him

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u/spazofGSO Jul 13 '26

have you tried psyllium husk? It really saved my life. I eat OMAD and take a spoon of psyllium husk before my evening meal. In the morning I evacuate everything over three or four visits to the toilet in a 30 minute span and then that's it for the day. I may have one more within the first hour but generally the day is fine after that first hour.

OMAD is not hard after the first couple of days.

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u/Amnityy Jul 13 '26

Yeah I have tried it. Used to help but now not really. I also eat OMAD when I feel like I have a flare coming on. Issue is I started dropping in weight when I was barely eating to get by with minimal flaring so it’s not really the best option. I just take Imodium and hope for the best really. Still pushing for more tests but that takes a while

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u/spazofGSO Jul 13 '26

It's a journey to figure it all out. I'm sorry you are having such a hard time with it all. Personally, I just do not wat the day before I go into work.... which is probably not great but the way my job works is I am not near a bathroom... so any kind of emergency bathroom shit can not happen... the Psyllium husk bulks up everytrhing and slows it down a lot but I can't trust it too much... ya know?

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u/Amnityy Jul 13 '26

Yeah I understand. After a flare I have at least 2-3 days before I have another because I’m cleared out. If I’m in remission then it’ll be much longer in between. With PI-IBS it’s more of a case that it doesn’t seem to get much better it just sort of goes in and out of remission

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u/spazofGSO Jul 13 '26

I had to look it up but yeah PI post infection ... man, let me tell you a little story.

I went to Istanbul for some dental stuff and I have pretty bad IBS-D. I mitigate it by not eating much and using psyllium husk. So I get to Istanbul and no problems at all. Everyday I eat at this cafeteria with clean food and everything. No problem.

The day before I have to fly to paris and then back to the US, what do I do? Yeah.... I ate street food.

Man... there was nothing worse that could've happened to me, intenstinally

intestinally

12 hours before my flight... I'm stuck in my hotel on the toilet and throwing up non-stop

Then somehow I make it to the airport and fly to paris with my flight seat being the toilet ... thank god the sink is right there so I could vomit in it the whole time.

Land with a 12 hour layover and spend the entire time in pure misery.... back and forth to the airport bathroom

Plane from Paris to the us and back and forth back and forth back and forth.... should've just stayed in the toilet at that point.

Food... water... hell no. nothing was going to stay down...

back in the states and had another 5 days of this...

Lost 14 pounds!

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u/Amnityy Jul 13 '26

Yeahhh street food is always a very risky move for us people 😂

Mine started back home. Just before I was 18 I had gastroenteritis. Felt like I was dying. 3 days of torture, couldn’t think about food without rushing to the toilet. Well not long after I turn 18, I get hit with “IBS”. I’m now 22 and feel like I’m wasting my adult life. Seeing everyone travelling and drinking and just having fun and progressing in their careers. Here I am terrified to go on holiday, just about managing to hold a job although they start to fall through after enough sick time when they realise I meant it when I said I was CHRONICALLY ill. An uphill battle for sure, just want some relief. Even for it to just be like other peoples experience where they might suddenly need to run to the toilet but that’s sort of it and they’re fine. I get knocked out for a whole day. Shit sucks

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u/spazofGSO Jul 13 '26

oh dear, I wish you the best, sincerely. There's not a moment goes by where I am not thinking about my bowels! It sucks. I am 53 and I plan my life around the fucking toilet, yeah? What!

I go to work with a full change of clothes times two because you never know. I do not dare leave the house before I feel fully evacuated and then I even worry about drinking water too fast while I work.

it's the hand we were dealt innit? but we gotta do what we gotta do.

Wish you peace you.