- This topic has 32 replies, 23 voices, and was last updated 6 years ago by dannybgoode.
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IBS diagnosed sufferers unite!
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GolfChickFree Member
Let me first start off by saying I’m not seeking an internet diagnosis! I have the first hospital appointment on the 2nd of January to try to figure out what the hell is going on.
I want to compare my symptoms to those of you with a medical diagnosis of IBS (I’ve always thought of myself as suffering with it but this is a whole different ballgame, hence after people who know for sure) I’m hoping by comparing I can reassure myself for now that it’s nothing more sinister, as crohns and ulcerative colitis are prevalent in my family.
I’m also interested to see how people cope with it on a daily basis. How people keep it in check and don’t resent food as I currently do!
brackFree MemberI was having lots of bloating last year..which totally came out of nowhere.
Twinned with painful testicles I obviously went to the gp and requested I be referred for bloods/ testicular scan.
Fortunately for me I have a medical friend at the hospital..and I had my abdomen scanned as well. Two small umbilical hernias were found.
I’ve since had these repaired – and hey presto, symptoms gone.
Now I’m not saying this is a likely cause for anyone else BUT in the myriad of causes and symptoms that people go through.. I hadn’t even given any thought to it being caused by a hernia.
I’m in the medical profession and was surprised that my symptoms so similar to IBS were caused by a previously undiagnosed hernia.
What I’m trying to say is that our bodies are weird and wonderful things and it pays ( to have medical friends) but also to keep an open mind about possibilities and causes.
Good luck OP
GolfChickFree MemberCheers for that it’s a really fair point and I think is what most people have said when I’ve then gone on to mention the blood.
Ming the MercilessFree MemberWell my symptoms are:
The early morning “rush” repeatedly.
Poo the same consistency as a normal person on picolax and more acidic than xenomorph blood (when I’m having a bad phase).
Farts that make Union Carbide issue a denial it was them.
Sore abdomen and an arse like a Sarlaac Pit from er repeated actions.It’s massively aggravated by stress, gluten, A1 protein in normal milk, onion, garlic and other FODMAP’s. Self diagnosed after decades of NHS saying you’ve got IBS, live with it.
Had a bad flare up this year but blood and stool tests showed nothing so it’s just a bad phase (phew) which is currently subsiding but Xmas won’t help. Though the worst can be mitigated by preloading with immodium.
GolfChickFree MemberHow long does a bad phase tend to last you? Does it wake you up during the night? If so do you tend to have to lie on your back and as still as possible to avoid repeated trips?
thegreatapeFree MemberHow long does a bad phase tend to last you?
It passes quickly.
dorsetknobFree MemberHad similar symptoms about 17 years ago, lots of visits to Doc’s cameras up and down, diagnosis was IBS.
Had to find out myself what triggered it off and found a good book by Dr Stewart (I think) called no more IBS, followed a strict diet for a couple of months and it was gluten. Thought at the time my days were numbered but now avoiding gluten I live a normal life but miss my amazing farts I was famed for.HounsFull MemberSuffering a bout of it currently. Shall give full response later
shintonFree MemberDo you keep a food diary GC that you can trace back to your symptoms? I’m coeliac but also find that caffeine sets me off as does processed meat, particularly chorizo.
mikeysFull MemberIt certainly isn’t much of a fun thing to have and from my experience it is diagnosed by having ruled everything else out of the question (as far as possible on an nhs budget). It did help me to a certain extent to start to believe it was nothing life threatening to me.
I find mine is stress triggered, but one person’s stress is not the same as anyone else’s. It is also self stress generating which can cause a bad spiral downwards. The worry of an attack of symptoms can make even something that should be fun like mountain biking a real stress. Which is why I like a nice trail centre with good facilities.
I also find a couple of days of red meat dinners can make me worse especially with red wine. I had stopped drinking coffee and milk for about ten years before realising they actually had no effect and life was more fun enjoying them!
I hope you get something sorted out OK and if it is IBS that you can find a way of not letting it rule your life.
dannybgoodeFull MemberHaving suffered from chronic ulcerative colitis I gaze upon ibs sufferers with envy :).
Bowel removal ended up being the only option. Was pretty grim for 2 years – couldn’t be more than a few yards from a toilet 24/7.
GolfChickFree MemberYeah my uncle is in the same boat dannybgoode, has had to have a lot removed and he only just pulled through so definitely not something anyone would choose to have!
xoraFull MemberI was diagnosed as a teenager at school. But mine has never been as serious as some people I know. Basically once I was old enough to work out what my triggers were (beef, milk, spices) I could avoid them with no real effect on my life. I can go out for a nice steak if I want, but trying to do that 2 nights in a row is bad, etc etc.
perditusFree MemberIt may be worth checking for a hiatus hernia – it gives rise to all sorts of odd symptoms – I have to dose up with Imodium before going for a ride.
rikleggeFull MemberAnother ulcerative colitis sufferer here, although I’m very lucky in that it’s mild and very well controlled by medication. I started with very similar symptoms to what the OP describe and was pretty worried until diagnosed. Now I’m on the meds, as long as I avoid certain foods then I don’t really suffer any other issues.
ahsatFull MemberLactose intolerant and IBS suffer here. Ended up being admitted to hospital earlier this year being tested for all sorts of things, with no results. Gave up lactose for a week and felt so much better (I was even getting pain all down one leg). I have slowly worked out what causes me flare ups (beer isnt great) and 90% of the time I can function without problems. This time of year isn’t great with all the mixed fruit, alcohol, eating at funny times and generally rich food. It varies a lot between people (both my Mum and I are the same, and our symptoms and triggers vary).
If I look back to how poorly I was at the start of the year and how I am now, it is unrecognisable. With some trial and error you can feel a lot better.
bigblackshedFull Member10 years ago I was diagnosed with IBS. A fair few tests, different remedies and drugs, it was complicated by being on SSRIs at the time for stress. Mine is stress related, along with certain foods, citrus fruits, whole grains, oats, over cooked veg?.
The SSRI were helping with some of the symptoms, but mebeverine has settled things down. I still get the odd bloating attack, followed by a “loose” few days. Nothing that stops me from functioning normally. I can still fart like a world champion, in the past bad enough to make a born-again-Christian swear.
The coming festivities will have a detrimental effect and I shall be banished from the house by Boxing Day. Time to ride on my own.
Severe sufferers have my sympathy. Mine can be unpleasant but manageable.
GolfChickFree MemberNot sure my symptoms really match with IBS, there’s obviously some overlap but it seems the main features aren’t quite the same. I really hope they find something when they investigate. I know my diet is a bit funny as I dont eat much veg etc. but I literally eat the same thing I always have and I would of thought if it was diet related then this would of surfaced a lot sooner. A normal life is pretty impossible currently, on an okay day I can do all the same activities as before but just being cautious and making sure facilities are close by but on an off day like today I can’t leave the house at all. All I’ve done today is walk the dog and that wasn’t incident free 😳 I have to be careful about standing up currently because as soon as I do the head rush is almost bad enough to knock me off my feet 😥
doggycamFree MemberI suffered from IBS and bloating due shift work and stress.
I read a lot on it and discovered fermented foods like sauerkraut.
I ferment my own and make live yogurt.Since eating them I have no symptoms, no pulsing pain or bloat.
Your guts effect everything including your mood.
Try it, and be prepared to get well.
GolfChickFree MemberA fair few people have mentioned yoghurt and the probiotic type drinks, however, the smell alone is enough to make me wrench. I hate the stuff and anyone eating it in our office is immediately banished.
gordimhorFull MemberI was diagnosed over 20 years ago. Like many others stress was a factor. At the time of the diagnosis I couldn’t do anything at all as I had to be within 30 seconds of a toilet. The pain from constantly moving my bowels was considerable and any relief only lasted a few minutes.
I was put on Colpermin for a couple of months cut out fizzy drinks and cut alcohol by two thirds. Importantly I dealt with the cause of the stress too. I have made sure to eat plenty of fibre ever since and have had roughly a dozen short term flare ups (less than 24hrs)in the last 20 years.sheckFull MemberI was diagnosed with Crohns disease 18 months ago. Ulceration in the ileum led to repeated blockages, which would start with gas before causing nausea, fever and extreme cramps. After 6 hours or so the pressure would break through and I would have another 6 hours of food poisoning type symptoms and bleeding. This happened every 6 weeks for a year or so before diagnosis. Have been on immuno-suppresents since and only had one big flare… typically in the Pyrenees on hols this summer. Kept a diary of everything in and out for a year… no real indication what causes it, other than tiredness, which can be caused by stress. Have cut out beer, beef and ibuprofen entirely, and think this has helped. Mentally it’s quite exhausting, and I can get very paranoid about sleep, knowing tiredness makes me worse… I wish I never had to make judgement calls about riding – because it calms me down, but also tires me out!
Sorry to vent a bit… not actually written down any of my thoughts about this before
tofu21Full MemberAll bowel things have the same sort of symptoms, which really complicates things.
Everyone has their own story and what suits one may not suit the other..
I’ve had Crohn’s for the past 14 years and had an emergency bowel resection.
I think that many of the problems that I have been having have been a mixture of Crohn’s, IBS and bile salt malabsorption. I’ve recently started to tackle the latter two with diet and some drugs. Low FODMAP is working for me
tofu21Full MemberAll bowel things have the same sort of symptoms, which really complicates things.
Everyone has their own story and what suits one may not suit the other..
I’ve had Crohn’s for the past 14 years and had an emergency bowel resection.
I think that many of the problems that I have been having have been a mixture of Crohn’s, IBS and bile salt malabsorption. I’ve recently started to tackle the latter two with diet and some drugs. Low FODMAP is working for me
I got an eBike early this year that has helped me keep riding when I have had problems. It’s really worked a treat!
One of the biggest things that I have a problem with is the apparent randomness of it all.
Good luck with it all and I hope you find something that helps.
bear-ukFree Member40 odd years of Crohn’s, best thing I ever did was a change of career and be stress free.
19nine78Full MemberArtificial sweeteners are the trigger for me, which thanks to the sugar tax and our lord and saviour Jamie Oliver are now in **** everything…
Worth looking at excluding them, my symptoms were primarily worse in the morning.
Aquatint yourself with their names and check the ingredient list on everything 🙂
bombermanFree MemberI was diagnosed with UC in 2008, 2 months later i was having an emergency colectomy. Had a bag for 3 years and then a bowel resection with internal pouch anastomosis. Now i take 8 loperamide a day and need to empty my pouch about the same number of times. Drinking red wine now which is pretty much the only thing that really messes me up (lol). Obviously i’d rather be pooping twice a day but i’m pain free and i just deal with the inconvenience. One thing i do remember is that i started with hives when I exercised, broke out in a blotchy itchy rash on my chest. And then followed consistently bad mouth ulcers for a period of a few months. So if you have any of these symptoms it could be Crohn’s or UC. It’s not a glamorous subject and for that reason I think you’ll find there are a lot more people affected than we realise so props for bringing this up and please keep us updated!
HounsFull MemberRelated to that app, you can also get a card to present to anyone explaining if you’re stuck in an emergency, you can also get a radar key to access disabled loo’s
dannybgoodeFull Member@bomberman – yeah I still a normal ileostomy and given how ill I was (nearly killed me at one point) and having to go to the toilet 30 or 40 times day and night I haven’t looked back.
Indeed there are benefits – the hottest curry going doesn’t cause ring sting, don’t have to bare cheek contact with scabby public toilets etc :).
Had mine 5 1/2 years now and replumbing not an option really.
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