Questioning diagnosis.

[soontobejamie]

At the start of the year, I was given a colonoscopy and diagnosed with IBS. At first, I accepted the diagnosis and went on my merry way.. Tried to alter my diet. Tried antispasmodics (even though they were coated in lactose - I did inform the doctor I am intolerant).. I stay reasonably active as my job keeps me on my feet for up to forty hours per week.

Anyway, I keep having flare ups of severe pain. Not quite like an IBS pain. It's much more aggressive, around my navel and lower abdomen.. Very persistent. I have used deep heat and hot water bottles as I can't take ibuprofen and paracetamol. I'm not sure what else I can do.

There's no history of IBS in my family but there is IBD and bowel cancer. I don't believe I have cancer at all - I don't bleed that much when passing motion. I just wonder if I may have IBD/Chron's instead?

Any words of advice? Opinions? Shall I just see the doctor on Monday if I'm still in pain? It'll be day five by then.

Thank you

[Hidden]

Hi,

Pretty sure the colonoscopy would have picked up any signs of cancer so I think you shouldn't concern yourself about that.

I had a colonoscopy in April this year and when nothing was discovered my consultant sent me for an MRI proctogram (a week ago). This can identify other problems such as intussusception (when part of the bowel telescopes into itself) and milder versions of Crohn's amongst other things. Haven't had the results yet, but I think it was a very good procedure to be done. Might be worth asking for one of these and, if you do, make sure it's the MRI version you get rather than the one done with X-ray as that doesn't give such good diagnostics.

In the meantime, have you done the low FODMAP diet to try and identify all your food triggers? It's worked wonders for loads of people on here, myself included?

Rosie

[soontobejamie in reply to Hidden]

Hi Rosie,

Thankfully, cancer never really crossed my mind as a possibility. My colonoscopy was actually clear and that's when they decided I had IBS. That's the only imaging test done though.

I have tried the low-FODMAP diet to no real avail. All I learnt is that garlic does not like me at all! :') Well, garlic and onion. I have changed my diet to eliminate lactose, gluten (as I appear to be intolerant to that too) and other irritants. I was hoping it would help with my constant tiredness as well.. But nope!

I'll be sure to ask my doctor about the MRI version. I can't help feeling that something isn't right.

Hopefully you'll find some answers from your procedure.

Thank you

[Hidden in reply to soontobejamie]

As far as FODMAPs goes, you say you don't tolerate the onion family and gluten, but it may well be that it's the fructans in these which are giving you issues and it might be an idea to look at that whole food group. People often think they have gluten intolerance when it's actually a much wider base than that.

If you don't already have it, the app from Monash Uni (where FODMAPs was developed) is a really easy way of finding out just what your food has in it.

[soontobejamie in reply to Hidden]

Monash Uni rings a bell for some reason. I have currently got the Food Maestro app (run by gastroentorologists in the NHS). Maybe I need to try something new?

Sounds like I need to do more reading on fructans too. That'll give me something to do on my day off!

You're a star

[Hidden in reply to soontobejamie]

The NHS version of FODMAPs is a very watered-down version of Monash's, which is a shame as it makes a lot of people think it doesn't work.

Link to the app is at:

med.monash.edu.au/cecs/gast...

I never had much joy with gastroenterologists and it wasn't until my GP sent me to a colorectal consultant that proper investigations started to take place. My GP has also now referred me to a neurosurgeon as it's quite possible my bowel/digestive probs are down to some of my spinal nerves being squeezed. In the meantime I manage my symptoms just by diet - don't fall for the many IBS-type 'remedies' out there, they're mostly snake oil!

[Hidden in reply to Hidden]

Hi Rosie

I bought the low FODMAP book and found it very confusing so actually gave up with it - I know what I should have done is researched the internet but didn't. My doctor made me an appointment with a Dietician (after nagging from me!); I met the Dietician and she said that my diet looked quite good to her. She said that I would hear in about 6 months' time for an appointment with another Dietician who was about to be trained in FODMAPs. I phoned 7 months later and asked why I hadn't heard and was told that the funding had been removed and the service was no longer available! No-one bothered to contacted me to inform me.

It seems to me that this is something that IBS sufferers have to deal with themselves. I will look at FODMAPs again - thank you.

[Hidden in reply to Hidden]

Hi,

Did you buy the Patsy Catsos book? If you did, I suggest you read it from beginning to end rather than dipping into it piecemeal. If you still have probs with it, please come back to me and I'll do my best to help you with FODMAPs - it's the very best thing out there for so many people. The first few weeks are really tough whilst you try to identify your food triggers, but it's soooo worth it in the end.

Sorry, but not surprised that you were let down by the NHS on this although, as I said in my post, the original Monash version is much, much better.

[Hidden in reply to Hidden]

Hi Rosie, I did buy the Patsy Catsos book and read pretty much most of it. I'll see if I can find it (I've put it away somewhere and can't remember where) and have another read.

Also, thanks for responding and providing such a positive vibe where diet is concerned.

I'll make note of your ID and message you to let you know how I get on.

Thanks very much.

[Hidden in reply to Hidden]

Good please do that and feel free to ask me anything at any time.

Aside from the book, the app from Monash is also an absolute must plus there's a lot of info on the website, here's the link:

med.monash.edu.au/cecs/gast...

Fingers crossed for you!

[Hidden in reply to Hidden]

Thanks very much Rosie and really appreciate your help.

[soontobejamie in reply to Hidden]

I'll never understand why things can't just be universally consistent.

Thank you for the link. I'll see if it helps at all. And I'll try to speak to my GP soon. I don't feel as rotten this morning so I'm not sure what it was.. It just didn't feel like my typical IBS issues.

And don't worry, no remedies here. I learnt after attempting the antispasmodic - it's all about the diet!