Inflammatory bowel disease - anyone know about it?

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My GP and basically my entire family are pushing me to see a gastroenterologist to get investigated. I have 2 close family members with Crohn's and I also have 2 autoimmune disease myself which is making my GP push me to consider a referral.

TMI btw! Sorry....!

I've had diarrhoea on and off for a few years which was diagnosed as IBS. Over the last 3 months, it has increased. It is usually yellow, a little mucousy and blimmin' loads of it. It burns like acid as it comes out and my bottom area is very sore. I've tried lots of prescribed creams. It varies from soft to watery but often, it is just loads of softish poo that's bright yellow. I get woken up in the night by urges and I've had a couple of times where I haven't made it to the toilet. I've read and some people seem to go about 20 times a day and I probably 'only' go between 5 and 8 times which is making me doubt my diagnosis.

I've lost weight because I can't tolerate much food. I am quite overweight though, so I'm not fussed. I can't tolerate anything more than a toddler's portion of food or I vomit. I've been vomiting most mornings too. I am definitely not pregnant. I've had liver, kidney and full blood count come back clear. I'm on a lot of drugs for my autoimmune conditions and most of them cause nausea/stomach pain but I've been on them all for years and my specialist rheumatologist does not believe I am suddenly not tolerating these meds!

I've had some more bloods and a stool test. To be honest, the pain is the worst thing. I get terrible, terrible stomach pains. God, writing this down makes me think I'm an idiot and should just agree to see a specialist but I've been poked and prodded so many times, I've just had enough.

Plus, I'm on methotrexate and certolizumab which are both used for Crohn's disease, so it would be unlikely to suddenly develop it when I'm already on meds that treat the disease, right???

I have recently been diagnosed with crohn's, as a result my sister has been investigated and diagnosed and my dad is now getting looked at too.

As far as I am aware, you can't prevent it, only manage it so the meds you are on may have managed any flare ups (if you do indeed have it).

With regards to getting messed around with, the invest isn't as bad as it sounds - a colonoscopy and ct scan is what I had. You are sedated for the colonoscopy so it is fine (I actually slept through mine! my sister was awake though and she said it was ok).

I have no idea re the poo as me and my sister are different - I just have mucous. The stomach pains are the only thing we both had, I was thought to have a 'grumbling appendix' for years and it was only when they finally went to take it out that they realised how inflamed everything was.

I am in for a bowel resection in Feb, as my crohn's had been missed for so many years I have the associated complications of fistulas and a stricture - that is why I would urge you to just bite the bullet and get the invest done asap. For the sake of a bit of fiddling now you could possibly save/delay the need for surgery in the future.

You definitely need to find out why your bowels are doing what they're doing though, as that's no way to live and must be awful for you.

Good luck with everything xx

Thank you do much for your kind reply. I will agree to the referral but from what I've read, most people have much much much worse diarrhoea than me, so I feel like a massive drama llama.

Oops I name changed and did it wrong!

Ha! I don't know how to name change yet, I'd cock it up worse! I think the diarrhoea thing can be overstated, I've never been bad with it - rarely had it other than when ill with stomach bugs etc - just normal really. I never had blood or anything like that, just a bit mucousy - so your bowels sound worse than mine and I'm a bone fide confirmed chroney.

There's no harm in getting checked out, it is probably scarier thinking what it might be in the long run - at least if you go and get fiddled with you get an answer one way or another.

I wanted to name change because I was a little overly descriptive.

Thank you again for your reply. You're right, a camera going up or down is definitely a lot less worse than leaving something potentially unpleasant brewing.

I have Crohns but wasn't diagnosed until 2 years ago when I was 44. I've had problems on & off for nearly 29 years though but Drs just kept telling me it was IBS cos the tests weren't showing anything. I don't suffer with diarrhoea much, I tend to have pain & vomiting. I also have some complications - a bowel to bowel fistula & a stricture but so far I've avoided surgery. The worst part about the tests was the disgusting stuff they make you drink but the actual tests aren't too bad. I really think you should take the referral & see what's going on in there, it may not be as bad as you think & medication is really good now. Good luck.

I also don't go to the loo at lot, probably twice on a normal day & maybe 4 or 5 times if I've eaten something my Crohns doesn't like.

DH has Crohn's and two others in the family have Ulcerative Colitis, he's not bad at all and one family member has only had one attack in 20 years! Go and get it checked because fistulas are not pleasant and if you can get it under control and avoid that it would be much better. Also he read research that probiotics may help and it may be coincidence but he seemed to heal his first two (pre-diagnosis) attacks just with Yakults and the like (he though it was food poisoning)! I'm definitely not advocating it instead of medication but could be a useful aid.

Questions, what you describe doesn't suggest you can't have it, and clearly the Metho etc aren't controlling whatever you do have. So deffo not a 'drama llama'!Good that you will have it checked out as maybe some other treatment would help. Having one AI condition does make it more likely too.

I read something recently on Crohn's and UC and there was a chart of 'frequency', and maybe 3 or 4 'levels'. From what I recall, you wouldn't be in the lowest category, though by no means are you in worst either of course. Like others say, you do need to get it checked. As do I, incidentally. Your thread - and talk of complications - has made me realise this too, at last. Rather weirdly, I am under gastro care for AI liver disease, and have other AI stuff too (and mother had UC and other AI stuff), and NOBODY has asked me recently about bowel habit. I had colonoscopy about a decade ago - it was okay experience, not the worst procedure I've ever had ..... All the best, OP.

Thank you guys. I'm really fortunate that I have private health insurance, so I can get myself seen pretty quickly. If I didn't have a family history, I'd probably ignore it tbh.

I was looking on patient.co.uk and it said that diarrhoea more than 8 times a day is severe and that more than 3 counts as diarrhoea, so I feel a bit less drama llama-ish now.

I have ulcerative proctitis.. Which is the same as ulcerative colitis but it's confined to the first 6 inches of the bowel, rather then up further which is much worse.
I get the urge to go suddenly without warning and pass huge amounts of mucous which looks like pus and lots of bright red blood. I rarely get diarrhea but in flare I can go up to 8 times a day, it's very sore and I get awful cramps too.
There are lots of variations with so many symptoms so I def think you should be tested.