IBS or IBD?

[PaulineFowlersGrowler]

WARNING, THIS THREAD CONTAINS POO TALK

I've been suffering from diarrhoea (8-10 times a day), stomach cramps after eating, extreme fatigue and joint pain for about 6 months. I put off going to the docs because I am an idiot I thought it was just IBS, but then I started to get occasional blood in my diarrhoea which really freaked me out so I went to the docs. Blood tests came back fine, doc said it's probably just IBS and gave me peppermint oil tablets, which have done sweet F.A except give me minty poos.

After more blood I again returned to the docs last week because I wasn't aware blood was usual for IBS (is it?), they did a fecal calproctin test and I've been told the results are back in and I need to make an non Urgent appointment. I'm assuming that means something is going on down there? They gave me an appointment for next week, but last night I was in a lot of pain which stopped me from sleeping, and this morning I've had more bloody poo. When I go the toilet it feels like the intense, radiating pain you get when you are in labour. I've got lower back pain and pain in my rectum.

I've made an emergency appointment at the docs today, I even took a picture of my bloody poo in case they want to see it .

Does this sound like IBS to you? Doctor has just been so blasé about the whole thing, even asking what did I think it was because obviously I'd googled my symptoms . I can't go on like this, I feel crap, I've got twin babies and a kiddo with special needs and I can't look after them properly because I am so wiped out. I can't even do the walk to school in case I get caught out needing the loo.

[StillRabbit]

I was diagnosed with IBS in February.

I get occasional blood and was told that as it is bright red (fresh blood) it is simply anal fissure or piles. They will only test if it is dark red (old blood).

I haven't had any tests, just been told to live with it 😔

[StillRabbit]

Should have said.. your symptoms sound much like mine but I alternate between diarrhea and constipation and have terrible flatulence 😳. I also can o lay eat small amounts in one sitting. I had a blood test for ovarian cancer but this was okay so they have said its IBS and I should work out for myself what my triggers are and amend my diet accordingly.

[PaulineFowlersGrowler]

Hi Rabbit, thanks for the reply. I've had two internal exams and there was no evidence of piles or fissures, no explanation from the doctor about where the blood is actually coming from though.....
I'm surprised they diagnosed you with IBS without running other tests first, I thought IBS diagnosis was a process of elimination.
I think IBS is a lazy diagnosis Tbh, just what the doctors tell you when they haven't got a clue what's actually going on. Unfortunately I lost two people close to me to cancer after they were both told they were suffering with IBS, so I'm probably a bit paranoid though.

[StillRabbit]

I know what you mean. My grandmother and grandfather both died from bowel cancer but my GP said I'm too young (47) for it to be a concern. I've not had any internal exams but I know I had piles when I was pregnant and had similar blood then...

If you aren't t happy then definitely push for more tests but try not to worry, I'm sure you're aware that symptoms can be made worse by stress.

[Minime85]

IBS should only be diagnosed after other tests have ruled other causes out. I have been diagnosed with it for about 15 years. This was after blood tests and cameras you know where. Push for further tests. It may be IBS and everyone's symptoms and triggers are different. Changing diet has radically improved my life but that isn't everyone's trigger. Hope it goes ok at doctors

[Itscliffmas]

I also diagnosed myself with IBS and self medicated for over six months, (really not my smartest move) by the time I went to the doctors I really wasn't well and was rushed through tests (both camera tests and ct scan) I was diagnosed with Crohn's disease within a month.

My initial blood tests couldn't tell them what was wrong with me just some abnormal levels -can't remember what they were- Your symptoms sound very similar to IBD (fatigue and joint pain being common symptoms) but I think the only way to be sure is the delightful camera test.. It's not the nicest thing in the world but it really isn't that bad so I would push for them to send you for this.

When I was diagnosed the consultant said that I had it quite severe so put me on the strongest medication to to tackle it, (touch wood) it's working for me! I've had times where I've wondered if they misdiagnosed me. -denial- So if it does turn out to be IBD there are many medications you can try to get you into remission. There are some fantastic support groups if you need advice (and talking about bowel movements becomes the norm. We also take the occasional selfies)

[Itscliffmas]

Stillrabbit that's unbelievable that you haven't had any tests. There are so many people that are misdiagnosed with IBS when it turns out they have IBD, meaning years of suffering and possibly damaging their bowel. I don't say this to scare you, its not right that a GP can diagnose you without sending you for tests, when it's possible that you have a chronic illness that can be managed with medication.
Please push for tests also.

[MrsPinotGrigio]

Please please please get a referral to a gastroenterologist. I have Crohns which went undiagnosed for nearly 20 years as the tests I had were 'inconclusive'. I'm now under a different hospital & my consultant really gets annoyed about GPs who diagnose IBS - apparently IBS is an 'exclusion' diagnosis which means everything else should be ruled out before a conclusion of IBS. If you haven't had any tests - blood, faecal calprotectin, colonoscopy or CT scan please push for a referral. Diarrhoea with blood is very common in IBD as is joint pain & I know from experience that leaving it & hoping it will be ok is very dangerous. I was finally diagnosed with Crohns 4 years ago & spent 3 weeks in hospital & have since had over a foot of my bowel removed. I'm now in remission but will be on medication for the rest of my life. I'm not trying to scare anyone but please don't leave this. Hope you get better soon x

[PaulineFowlersGrowler]

It's hard to say if my doctors appointment went well or not . I saw a different doctor and she took the whole business a lot more seriously. My calprotectin results were very high, which means there is inflammation in the bowel. Under the circumstances the doctor wanted to urgently refer me as a suspected cancer case which would mean I would be seen within 2 weeks. This was incredibly scary and I've been close to tears ever since but relieved that at least I'd be seen ASAP and get to the bottom of what's going on with my bottom.
Then later I received a phone call from the doctor very apologetic saying that I do not fit the criteria for a suspected cancer referral as I am under 50 (I'm 31), so she is trying to refer me urgently on another pathway but it could take up to 18 weeks. I can't get my head around that, you put the idea in my head that I could have cancer and need to be seen urgently and then say "whoops, sorry no can do". I know it's not the doctors fault and it's just stupid red tape but I feel like the grim reaper is following me round, I can't wait 18 weeks!
I'm going to have to find the £350 to see a private consultant, they can fit me in for a consultation this Thursday.

[PaulineFowlersGrowler]

Oh and thanks cliff and Pinot for your wise words. I'm glad I kept pushing my doctor, just feel like an idiot for leaving it this long.

Stillrabbit, I echo what everyone else has said, get back to your doctor and demand some tests!

[FuzzyOwl]

Sorry to hear of how worried you are, and understandably so. I suspect it will take longer than a fortnight, but try complaining to the surgery and also to PALS. I have IBS, amongst other things, and use to frequently have blood in my diarrheoa but it is mainly under control now. However, your bleeding does need to be thoroughly checked out and to say you don't meet the criteria for an urgent referral purely on the basis of your age is ridiculous. Cancer is completely indiscriminate of age.

I hope all goes well for you and it turns out your problems are caused by something both minor and easily treated.

[INeedNewShoes]

My GP referred me under the two-week-rule when I first presented with IBD symptoms (bloody diarrhoea and mucus up to 20 times a day). She told me cancer was very very unlikely given my age so try not to worry.

The only way to confirm or rule out IBD is via a colonoscopy (camera investigation) so until you've had one of those no one can say it's IBS.

It's great that the doctor you saw today is being proactive. See that as a good thing rather than cause for concern.

[TJEckleburg]

High fecal ca protectin is not indicative of cancer. It is indicative of some form of inflammatory bowel disease Wether that be Crohn's or ulcerative colitis. And miserable as that will make you, it's not going to kill you whilst you wait for a gastroenterologist appointment. So please stop panicking.

[INeedNewShoes]

If you do have to wait a few weeks to be seen, there are a couple of things you can do which should improve your symptoms in the meantime: cut down caffeine. It's a stimulant so reducing it may reduce toilet trips for you. I did this on the advice of a consultant I saw and it was the one sustainable non-medication thing that made a noticeable difference to me.

[MrsPinotGrigio]

I was referred under the 2 week rule due to my weight loss - I'd lost a stone when I saw my GP (I was less than 9 stone to start with) and the fact that I had been so badly anaemic earlier in the year I'd needed a blood transfusion while on holiday in Florida. My GP was convinced it was IBD & there was almost no chance of cancer but didn't want me to wait as I was struggling so much - the iron tablets I'd been on hadn't helped either as they made me so constipated I ended up with an impaction which made the inflammation worse. You may not be waiting as long as 18 weeks - some hospitals are quicker than others but if you really think you can't wait speak to your GP again & see if they can refer you urgently. I would also complain that you were originally told you'd be referred within the 2 week rule & now you have to wait longer - any stress can make the problems worse & waiting won't help. Good luck, hope you get sorted soon x 🍀🍀

[Simmi1]

Oh good luck OP - hope you get it sorted. It does sound like you need more testing. I've been going through something similar over last 8 months although my symptoms are more like still-rabbits. My tests all came back clear but then I went to a naturopath who did a more detailed stool test and looks like I'm missing some beneficial bacteria and I have candida so now I'm on a special treatment protocol. Poo problems are so horrible so I really sympathise! 😢

[ChiquititaCat]

Hello OP, did you end up finding out the cause?

[PaulineFowlersGrowler]

Gosh, I’d totally forgotten if made this post!

It turns out I had ulcerative colitis. Colonoscopy showed advanced disease. After many years on steroids and trying lots of different immunosuppressants and several surgeries later I now have a permanent ileostomy.