Is it IBS?

[greendinosaur]

Hello, I'm a little new to this. I'm wondering if anyone has had symptoms like mine? I went to the doctor last year for bleeding, sometimes it was a small amount and sometimes a lot! Ended up having a colonoscopy where they saw nothing wrong and said if the biopsies don't show anything I'd have to have further tests. The biopsies showed nothing, but they signed me off and didn't do any more tests and just said it's probably IBS. But I've read that bleeding isn't a direct symptom of IBS? They looked for fissures and haemorrhoids and said I don't have any.

I've also had bloating, stomach pains, constipation and diarrhoea. I tried a food diary but nothing seems an obvious trigger but for the last month or so my symptoms have almost disappeared for seemingly no reason.

I can't help but wonder whether this is IBS or if there's something else going on? I've got Crohn's in my family and another family member has also had symptoms just like mine and been given no diagnosis at all. Any advice would be appreciated! Thank you.

[Linley]

Are you male or female?

[greendinosaur in reply to Linley]

Female

[Linley in reply to greendinosaur]

OK, just a thought do you have any probs with your periods? Us ladies have all our bits in the same place. When I had probs with bleeding it turned out to be a Gynae prob. If you have chrons in your family did your GP eliminate that? 🤔

[greendinosaur in reply to Linley]

Thanks for replying to my post! No there's no issues there at all, as far as I know at least. I assume it was eliminated by the colonoscopy but I guess they didn't explicitly say. Before the colonoscopy the GP said it was colitis and then after they did the colonoscopy they said it wasn't.

[Linley in reply to greendinosaur]

Gynae probs wouldn't be picked up via colonoscopy but if you have no probs in that area that's fine, wish you well in your search for a diagnosis 😁

[Andann]

Did you rule out haemmeroids/piles? My experience is that you would definitely know if you had that due to anal pain. They do come and go and cure themselves.

[Andann]

There's a few other things mentioned on internet sites which you would have thought would at least have been mentioned. What sort of follow up do you get where you are? Here in NZ we get an email from the hospital staff, private provider or the specialist which is copied to our GP. Really helpful as we often forget what we've been told or think of more questions and it also means the GP might follow up if concerned there should be more tests, etc. I would check with GP.

[greendinosaur in reply to Andann]

After the colonoscopy there was a letter saying it's probably IBS. I've tried following up with the GP and they said they'd refer me back to gastroenterology in January but haven't done the referral still, so I'll be massively down the waiting list. I've been chasing them though so I'm hoping they'll do it soon. The GP's reaction has basically been that my symptoms are odd but fingers crossed it's ok. I'm thinking of trying to pay for a second opinion but since my symptoms aren't that bad at the moment I don't know how much help it will be now or whether to wait if they get worse.

[BabsyWabsy]

This happened to my son. Sudden unexpected abdo pain and bleeding, no cause found. He had tests and a colonoscopy. His GP thought it could have been an infection. He has been OK since. PS. He does suffer from anxiety, which may also have been a factor.

[greendinosaur in reply to BabsyWabsy]

That's interesting, thank you. I wonder if it could be something like that.

[BlackIsleGirl]

I had intermittent bleeding from my back passage which has stopped now I have my ibs pretty much under control. I don't know if it's a direct symptom or if its a side effect of so much time either straining or having the runs!

It was all down to diet for me and I'd absolutely recommend pushing for an appointment with an ibs trained medical dietician. Even with their help it's a lot of hard work and guess work to find your triggers but for me it's been worth it. I still have bad days and flare-ups don't get me wrong but generally, day to day, I'm pretty good!

I'd go back and ask for more support and a dietician appointment if I were you. And don't give up, GPs are pretty bad for dismissing ibs.

[greendinosaur in reply to BlackIsleGirl]

Yes that could be a good point! Thank you. It feels like one of those things where you see it and assume it's something horrendous but it's reassuring to know other people have had that too!

Thank you, that's a good idea. I'll definitely go back. I wish they weren't so dismissive but seems like everyone has to fight to get much from them at the moment. Thanks again.

[BlackIsleGirl in reply to greendinosaur]

It's so easy to just assume the worst and 99% of the time it's really minor but just in case it's the 1% you are best to check.

Don't be afraid to push your GP for more help. A gastroenterology appointment should really be standard as should one with a dietician but I think the medical profession hate things they can't fix so they ignore it.

Best of luck. Hope you feel better soon x

[greendinosaur in reply to BlackIsleGirl]

Yes, I will do thank you. It should be. I find it ridiculous that I've never spoken to anyone in gastroenterology aside from the actual colonoscopy, but that's hardly the time to have a big discussion about it all.

They probably do. Thank you very much! Hope everything is alright with you x

[BlackIsleGirl in reply to greendinosaur]

In my experience consultants are a strange lot and can be happy to have the strangest conversation at the strangest times! Though I wouldn't be having an in depth conversation when they're about to poke me with gods know what.

I'm in a good phase thanks. Stress levels down, sticking with my diet and getting some extra exercise. Long may it last!

[greendinosaur in reply to BlackIsleGirl]

Haha yeah not then!

Aw that's good! Glad to hear it. Hope it does last!

[Fernsmum]

Hello I was diagnosed , some years ago by having an Endascopy ,seems they found nothing positive so call it it inconclusive and tell you it IBS , then your on your own , till you find this group and then you learn much more , hope you feel better soon .

[greendinosaur in reply to Fernsmum]

Thanks for replying to my post! Completely agree. I'm so pleased I found this, thank you. It is making me feel a lot better about it all.

[Fernsmum in reply to greendinosaur]

Yes that's what I felt when I joined , not too long ago ,it's just nice to be able to chat about it all and feel understood ,there always seems to be someone who knows or has suggestions or just to listen . Take care

[Andann]

Infection was one of the suggestions online ..... seems like that might be it. Diagnosing oneself seems to be pretty common these days!!! I had to do that when the gastroenterology team wanted to remove my gallbladder, when I was sure my symptoms were from IBS. Eventually after 4 visits to see them they agreed ....and thankfully suggested a colonoscopy in response to some symptoms I hadnt mentioned to my GP. Polyps were removed , whew. And checked a year later.

Its not easy to say for sure, I do understand. I also am coming to the conclusion that anxiety and stress cause quite a lot of IBS style symptoms and then the symptoms cause more anxiety. I am getting back into mindfulness, enjoyable activities , exercise and yoga now. And trying not to think about covid too much.

[greendinosaur in reply to Andann]

Could be. Although ironically I've not been so good this morning so maybe it's back. Oh no, lucky they agreed with you! So glad they did sort it properly for you in the end.

Yes I definitely agree with that. I've always had upset stomach's my whole life if I've been worried, but that was without any pains or anything like that growing up. Sounds like a vicious circle! That sounds good glad it is helping for you. Thanks so much for all your help, I really appreciate it.

[Ishallwearmidnight]

Do you still get intermittent bleeding or has it stopped? Some infections can give you bloody diarrhoea (like Shiga-toxin producing E. coli). If the infection has resolved it might still have changed your gut flora or the way your gut processes things (see post-infectious IBS). Either way I would think bacterial and viral infections would need to be ruled out for anyone with diarrhoea. With me I gave a stool sample which was tested for bacteria and viruses, I had been tested for worms and other parasites on previous occasions.

The other thing to consider re Chrons is that it can occur anywhere along the gastrointestinal tract, and a colonoscopy only looks at the bottom part. If it was your small intestine for example you'd need an endoscopy, or better yet (though I wasn't offered this and don't know anyone who has had it in UK) a pill-cam - literally a pill containing a camera that takes pictures as it goes down your gastrointestinal tract.

I've had bleeding as well, though in my case I do have internal and external haemhorroids, which for most bleeds is probably the cause. I did once have much more profuse bleeding which I think came from a perforation or something, as my stomach was very sore and it happened suddenly, took about 15 days to resolve and still not sure what caused it, but it was years ago and hasn't happened since. Fresh very red blood either comes from close to your anus or has passed through your system very fast, while if it is from higher up / has taken longer to pass through it gives tarry black coloured stools that smell strongly of iron. With my one-off thing/ possible perforation I had both the tarry black stools and fresh blood, whereas when my haemhorroids are bleeding I just have fresh blood.

[greendinosaur in reply to Ishallwearmidnight]

I thought it stopped but it has started again, so I guess it's continuing to be intermittent. That's interesting thank you. I've done a few samples over the last year but I am not sure entirely what they were looking for but I would guess they must have covered that if that's how they find infections?

That's interesting I didn't know that. I thought a colonoscopy was the large and small intestine and a sigmoidoscopy was the lower intestine? (I had that before a few years ago which was for haemorrhoids) I've heard of someone having the pill cam but yes never been offered it.

I didn't know that about the bleeding! That's so helpful. It's usually fresh although comes with stomach pains.

Thanks so much for your reply, it's so helpful especially how much detail you've given. Really appreciate it.

[Ishallwearmidnight in reply to greendinosaur]

If they gave you a regular stool pot without a special kit, it is likely they did test for at least bacteria and possibly viruses as well. The tests for faecal ocult blood (FIT) and faecal calprotectin come with their own special sample collection kits and instructions, so you'd know if you had done those.

A sigmoidoscopy covers the rectum and lower part of the large intestine, then colonoscopy covers all of the large intestine (both going from the anus) and as far as I'm aware endoscopy is from the other end, covering from the mouth up to the end of the small intestine (I think).

[greendinosaur in reply to Ishallwearmidnight]

The first time I did a regular one as well as a fit one but the second time they took a sample it was just the regular one.

I see, that makes sense! I have heard of it going from the other end although it sounds even more awful to me. Thanks so much for helping!