Worried it’s not IBS

[Thirdtimeluckyy3]

I’m in a deep state of panic. For as long as I can remember I’d have a dodgey tummy, in that I’d be prone to diahorrea .

however, this has worsened in the last 10 months. I notice last year I was getting it more frequently. It could last 4/5 days go for a week come back again but then could be ok for 3-4 weeks and get another bout.

I had a pain in my side too. GP initial thought was gluten intolerance, blood test negative but I’d all but cut it out by the time I had my blood test. He put me on Colofac which did nothing.

I tried the FODMAP diet which seemed to help as I went 11 weeks without an episode but for the last three months I’ve had the same old pattern again, bad for a few days then ok for a week or two.

the cramping before and after is so bad, I had a colonoscopy two years ago which was clear but that was due to haemorrhoids. I ended up in a&e two weeks ago, they sent me off with another referral for a colonoscopy and buscopan. The did a chest x ray, perhaps to check my kidneys/liver and lungs I think.

I’ve now convinced myself it’s some sort of cancer but my only symptoms are running to the toilet and extremely painful cramps, lower abdomen and very like period pain.
my diet is now very limited as I follow FODMAPS stage 1 so I don’t think it’s dietary. Today I had gluten free brown bread and an egg and I’m in agony hours later.

Anyone with IBS who has similar symptoms?

Have you had the colonoscopy? That will answer your questions.

She said she had a colonoscopy 2 years ago. @Thirdtimeluckyy3 I am a Coeliac and there are many other foods I cannot tolerate that upset my guts.. That you improved on the FODmap diet to answer your question. I was advised to follow it, but it feels like too much on top of a GF diet. Have the medics flagged Crohn's or Colitis? I would ask if these conditions could be a possibility.

I totally understand what you are going through. My story is very similar to yours. I’ve had IBS for decades but the last few years have been awful, virtually daily issues. I had a colonoscopy 4 years ago and lots of other tests but nothing found, however, because I have daily issues I have convinced myself it’s something much worse which obviously starts off the vicious cycle of anxiety and symptoms, I never feel free.
I am low fodmap and would probably be much worse without it but it’s not helping so much now. Fwiw, I suddenly, last year just could no longer tolerate eggs. Every time I try now my guts are in turmoil.
You mention period pain like discomfort. Do you have any gynae issues? I have had gynae problems for years and a few years ago my sister was diagnosed with endometriosis after being told for many years it was IBS. I am looking to explore that avenue as I am convinced it’s not just IBS.

Thanks for the responses, I appreciate everyone taking the time.

Yes had colonoscopy just under two years ago and all was fine but that was in relation to haemorrhoids causing bleeding but assume they’d have seen any colitis/inflammation when that was done.

Interesting point about gynae issues, I’ve got mild PCOS and had lots of scans etc while trying to get pregnant so assume endometriosis would have been caught with that.

My biggest fear is some sort of cancer, like kidney, pancreatic or liver as I find it hard to accept that this can be IBS and I’ve to just get on with it. I’m extremely anxious at the best of times but my GP seems to think that as my symptoms are while unpleasant, they’re stable in that I’d have started to get other symptoms along with this. It’s just the frequency of it now. Naturally I’ve started imagining other symptoms when in a real panic!

I’m just so over it all, I feel like I can’t relax and finding going to work even more stressful incase I need the toilet.

In order to feel ‘safe’ at work I’ve taken to not eating anything aside from 4 rice cakes, all day until I go home and then even today I couldn’t relax as I got a twinge but thankfully it didn’t amount to anything.

in the past when I’ve had flares the tummy pains never seemed as intense or lasted this long, I’m a nervous wreck. I’m back at the doctor next week to push for an endoscope but that’s likely an 18 month - 2 year wait after I see a gastroenterologist.

What makes it bearable for everyone?

If you’re worried about other potential organ issues I’d advise to get a private abdo ultrasound which looks at the organs - pancreas, liver, intestines, spleen etc - they’re not expensive (£150 or so but I appreciate this is out of some people’s budget). I had one in central London a few months ago for weird abdo symptoms/back ache in odd place.
im also about to start cbt for health anxiety. It has gone mega since having covid!

I totally understand everything you say. Even though I’ve had IBS for a long time I live in constant fear it’s something else which hasn’t been picked up, despite numerous tests.
For me, it’s because my symptoms are almost daily and I just can not seem to get them under control like many people with IBS do, that’s leads me down the path of thinking and fearing it’s something else.
One thing that does seem help but I have to be careful as it can obviously be quite constipating is if I take half of a Imodium tablet every other day. It has to be the one with simethicone, that does seem to settle things but I hate taking medication regularly and often my body gets used to things and stops working.

This one. They are soft tablets and you can halve them.

I also do the thing where I don’t eat when I’m working or have somewhere to go for fear of upsetting my tummy but it’s counterproductive because when I get home and eat I bloat like crazy because I’ve hardly eaten, then end up in pain and full of gas. It’s a horrible vicious cycle.

I get something similar and I've narrowed it down to saturated fats .I've been to the dietician and she says that some people who've had gallstones retain the problems digesting fat.