Bowel issues and at a loss what to do

[CurtainTwitch]

I don't really know what to do anymore. I'm at a loss and could really do with some help...

For over a year I've been shitting myself on average twice a week. Different times of day, I've kept a food diary, mood diary etc and I can't find any triggers.

I went to the GP early 2019. I've done poo tests which showed the high end of normal for inflammation markers & calproctine (sp?) and a few other things. GP said they were still within the norm. I've had an X-ray which showed impaction so was prescribed a laxative to clear out. No change since I've done that.

I've lost weight (I don't know how much as I'm fat anyway and didn't know my weight to begin with IYSWIM?)

Within mins of waking up I'm on the toilet with tummy pains and really loose poo for at least an hour after waking up. I've now stopped eating anything spicy or even just flavoured! Anything high in fat I've cut out. I've also stopped eating dinner as I'm finding that helps lessen the morning issue. I woke up at 4:50 this morning from tummy pains and ran to the loo & I only made it in time!

It's also impacting on my mental well being as I've always got wipes, spare clothes etc on me. I leave for work early as when I've had an accident on the way to work it can take 30
Mins to sort myself out and I don't want to be late for work.

Please help me. What can I do? It feels like the GP isn't listening.

My whole life feels like it's centred around shitting myself!!!!!

Sorry for the rant

You need to get a second opinion asap, I would be worried it was something serious.

Yes definitely second opinion but also full blood tests for everything including Addison’s disease and other rare autoimmune conditions.

You have to keep going back. Otherwise the gp assunes you are cured.

@melissasummerfield thanks for replying!

I've seen 2 different GPs. One GP a few times and the other once about this issue (it's the only issue I've been to the GP with for about 3 years! Before that was a dislocated coccyx whilst heavily pregnant)

So should I go back to the GP again? The last GP wasn't keen on listening to me. Or at least that was my impression

@Fairylea funnily enough I've been tested for Addisons a few times my cortisol levels where out?

I’d start by changing your diet. Cutting out gluten and dairy as a minimum. And read ‘the plant paradox’ which will give you lots of ideas to think about.

@endofthelinefinally You're right. I'm just scared of being made to feel like a pest again

@custardt I'm already vegan but I'll try gluten as well. Thank you!

Sounds like when I'm having a flair up of IBS d but I had loads of tests to get to that diagnosis. I take loperamide on a regular basis. It's horrible in a flair up as the anxiety of not making it to the toilet makes it worse so you are stuck in a viscous cycle.

I would definitely go back to the gp and push for further investigation.

You could ask for a coeliac blood screen....you still need to be eating gluten to get an accurate result.

You need a referral to a colorectal surgeon who will assess you for crohn's, diverticular disease and bowel cancer. You can demand this from your GP and given the symptoms you describe, if they refuse, demand to see the practice manager. Good luck OP. I hope you get some answers.

You know this isn't normal. Don't waste time messing about with your diet. Go back to your GP again. And again. And again. Tell them how much this is impacting your life and ask to be referred to hospital.

Read the plant paradox. Vegan could be part of the problem.

@inwood but can IBS be constant for a year? I shit myself on average twice a week! I don't have anxiety or depression. And I wouldn't say I have anxiety about shitting myself as I always have stuff with me etc?

If your cortisol levels were low in a 9am cortisol blood test please, please ask for a referral to an endocrinologist and have proper tests (including an Sst) for addisons. Before I was properly diagnosed I was having similar symptoms to you - which I assumed was Ibs- and lost 2.5 stone in weight. 3 years on from my diagnosis I don’t have any stomach issues at all and yes I’ve put on weight but that’s a small price to pay (treatment for Addison’s is steroids to replace the cortisol).

@custardt even if I've been vegan for 4 years???

Have you been referred to a gastroenterologist? If not you need a referral now. Go in with a list of symptoms, including weight loss and how long it has been going on. Ask if they need to consider 2 week wait path.

If yes you need to ask what are the possibilities eg IBD and what tests they are going to do to discover what is causing this.

Crohn's?

@Fairylea I had to do a few blood test where I stayed overnight? Last time they tested was 4 years ish ago & they said they were fine and it would've been exasperated by breastfeeding?

@motherofsoupdragons there's a few family members with crohns?

You don’t tend to show elevated calprotectin levels with irritable bowel but you do with inflammatory bowel ( crohns, ulcerative colitis etc). You need a referral to gastroenterology for a colonoscopy. Are your blood tests normal or showing raised white cells?

Your GP is useless

Breastfeeding will have nothing to do with cortisol levels. Maybe you had elevated prolactin instead? Which is another type of hormone issue an endocrinologist can deal with (I have issues with this as well as Addison’s). Definitely push for a referral to an endocrinologist and ask for a second opinion all round - different GP etc.

Also, Crohn’s is an autoimmune condition - same as Addison’s, hypothyroidism, diabetes, etc etc. If you have one in the family you are likely to have others - not necessarily the same thing. My mum has crohns. I have Addison’s, hypothyroidism, anaemia, prolactinoma and asthma.

A family history of Crohn's, morning urgency and (unexpected?) weightless. I would put money on it being IBD on that alone.

Request repeat bloods and faecal calprotectin from the GP and a referral for a colonoscopy/to gastroenterologist. GPs are crap at recognising IBD (pun intended).