To panic what the hell is wrong with my insides? TMI

[mystomachhatesme]

Have had a funny tummy for months and months if not years, used to be only occasionally but now near constant diarrhoea . I’m mid thirties, no other illnesses .

GP said it was probably stress causing IBS but asked me to do bloods, and samples just on the off chance it wasn’t - phoned and said to their surprise samples have come back saying signs of bleeding and bloods saying I’m anaemic (folate not iron) . I’ve lost a stone in weight since Jan 1st and zero appetite . Hospital said they’re taking me in for a camera next week .

There’s a pattern of constipated for a couple of days, then running to the toilet for a couple of weeks (day and night, most mornings but am woken up at times at 12/1am), then back to bunged up again .

It’s ruling my life as I can’t go out without knowing where the nearest toilet is . Scared to eat as I’m doubled over afterwards . Scared to go to cafes and out for coffee etc .

I’ve had it for years and years that if I eat a meal I’m in the toilet for 3 hours or so after, worse with fish, vegetables (of any sort), fruit, bread, dairy, wheat, sugar - anything that isn’t very, very bland . CMPA as a child and told I’m maybe intolerant to red meat protein as well . Tested for coeliac disease a long time ago and told they didn’t think it was that .

I’m mortified this morning as got up, went to loo 4 times or so, sat down to do some work, then stood up to go to loo at 12, coughed and didn’t make it . I’ve only done that once before years ago when I had a bug, thankfully was home alone but absolutely horrified . Was meant to be going out for lunch but the thought of that happening in town has put me right off leaving the house at all .

Silently panicking that I’m going to go in for tests and come out told I’ve got cancer or something similar, if it is cancer I’ve left it long enough that they won’t be able to do much .

I don’t really want to tell anyone in r/l that this is all going on, family know I’m getting tests but not why .

Google crones disease

If you are to do FODMAP, don't do it alone - speak to a proper dietician (not a nutritionist). I always recommend Sophie at City Dieticians - you can speak to her or one of her colleagues on the phone or video call etc. FODMAP is an exclusion diet, and it's very restrictive. The reintroduction phase is complicated and you'll want proper support if you identify foods that are causing your symptoms.

It may be they will want you to have your test results first so they can properly help you.

I'm sorry things are so bad.

Definitely get the Crohn's/UC tests etc first, and all the other suggestions people have made. But if you come to the end of the doctor's investigations without an answer, consider a bacteria/parasite issue? Either a nasty one (giardia, h. pylori etc) or possibly just a really out of whack gut flora.
I had similar symptoms to you, which were just steadily getting worse, and eventually two months of very high quality probiotics sorted me out completely. I'd had my gut flora wiped out by two long courses of antibiotics, and it started a downward spiral.
However, I'm not saying it's the answer, just that it is worth considering. Even if it's a different problem, getting your gut flora in top nick must surely be important with most gut issues.

I know it’s worrying OP but try not to panic, my mother went through a very similar experience.
She always had what she thought was IBS for years and then one year everything got worse and she suddenly lost a lot of weight and couldn’t eat or drink anything without it causing extreme stomach pain and terrible bouts of diarrhoea.
She had blood/stool samples taken and was seen very quickly for a colonoscopy and endoscopy.
It turned out she had Crohns and her colon was full of ulcers, she did have to had an operation to remove some of it and she has to administer a specific medicine to herself but she is so much better, she gained her weight back and she has been able to reintroduce certain foods that previously flared up her condition.
I know it’s never ideal to be diagnosed with a medical condition but could also be suffering from an IBD and they are manageable and treatable, cancer is always the first thing people think of as it often has so many similar symptoms to less serious conditions. I do hope your tests go well and you are able to remain somewhat stress free in them meantime, I know it’s not easy but stress also makes these things worse, sending you lots of well wishes!

It took me 2 years to figure out I was allergic to sugar free drinks. Basically any soft drink with artificial sweetener.

Your symptoms are exactly the same as dn, who turned out to be gluten intolerant. Try cutting out all wheat.

I’d put money on it being a food intolerance.

It sounds like an inflammatory condition to me OP, especially as its gone on for years, please do push so they can diagnose and treat you accordingly though, there are so many other gut / bowel illnesses than cancer although that's always the first one our minds go to. Also as an ibs sufferer I've had the misfortune of not making it to the toilet in time 😢 I know how mortyfying that can be 😞 Good luck and sending you 💐

Are you having both an gastroscopy and colonoscopy? It's not fun but in my limited experience very thorough, so at least they should be able to give you a good idea of what's going on as. result. My tip: opt for the sedative every time!

@mystomachhatesme

Cut out dairy before/switched to soya .

All I ate yesterday was chicken noodle soup, bread with butter on, then plain chicken with a few peppers/mushrooms and a wrap . Then a bit of bread and butter this morning and apple juice .

Will definitely keep a food diary .

GP did say possible Crohns/UC and said they might take biopsies and stuff to check . I did ask re ammonium but they said better to find out what it is first .

Hopefully its stopped for the day now, although I'm wary of eating anything at all just in case .

Not eating enough can actually cause diarrhea. I would try and keep regular meal times and avoid caffeine.

My DD who is 26 had symptoms like this and has been diagnosed with Ulcerative Colitis, maybe the DR needs to refer you for a colonoscopy to find out what is going on.

@mystomachhatesme don't cut out any food groups without a doctors guidance - not only is it medically a bad idea when you have the symptoms you do, but it can really screw up potential test results and leave you undiagnosed for much much longer!

Oh I really feel for you OP, digestive issues are horrendous. I have suffered with IBS on and off for years, and during some bad flare ups I’ve had awful diarrhoea at times. I hated how it affected my social life, as like you I didn’t want to go anywhere new if I didn’t know there was a toilet nearby and it ruled my life. I was scared about getting diarrhoea at other peoples houses etc.

I agree that a gastroscopy and colonoscopy is something you should push for if you haven’t had those already. With mine it showed I had inflammation but nothing severe. It turned out that mine was brought on by anxiety and stress - my main stress being my stomach issues! It was a vicious cycle, my stomach was causing me stress and the stress was causing diarrhoea. I also had bad acid reflux. I was prescribed amitriptyline, 20mg per night, which the consultant said would hopefully relax my insides a bit more! It did help.

During bad flare ups I also took a LOT of Imodium if I knew I had to go out somewhere, I’m sure medical professionals wouldn’t recommend that though. I also stuck to a really plain diet and avoided caffeine and alcohol.

I hope you get some answers and help soon. It’s hard not to automatically think of cancer but there’s many other things it’s much more likely to be than that. Good luck

Ah I'm sorry OP - my sister has Crohn's and went through an almost identical experience before she was diagnosed. She was so upset at losing so much weight, at being scared to go out - she really struggled, and then getting a hefty diagnosis like Crohn's on top was a lot for her. Thankfully, she is doing much, much better now she has treatment for it and she is mostly healthy, happy and can keep weight on.

Could be IBS or ulcerative colitis.
UC - symptoms often abate if eat white bread, pasta etc. and stewed veg, fish, chicken.
Hope it's sorted soon.

Really hoping it’s nothing serious

Hi op, I just wanted to say i had a fairly similar panic years ago, similar to you I had diarrhea and anaemia except mine wasn't painful. I'd also lost a lot of weight. I convinced myself it was cancer and tortured myself over it while I waited for a colonoscopy and gastroscopy. It turned out to be a combination of IBS plus a very rare condition that in many people is debilitating, in me just makes me prone to anaemia and I find it hard to gain weight. It's all very manageable. There's such a long list of things it could be, there's really no reason to assume something like cancer. I agree a dietician will be great for helping you manage it and they may suggest low FODMAP for a period. Obviously do make sure you get diagnosis too!

My friend done a hair sample allergy test from the internet and what she was intolerant to was unreal!!

Hers was more reflux related but it might help you xx

Hi OP. Lots of babies who have CMPA also have allergies to soya. I notice you said you switched. I appreciate you’re not a baby but wondered if that may be something to try eliminating after you’ve had your tests? I’m really sorry you’re going through this it sounds miserable. X

@DarkChocolateMint I'm afraid your friend was ripped off - those hair tests and the York finger prick tests are complete bunkum.

www.nhs.uk/conditions/food-allergy/diagnosis/#:~:text=hair%20analysis%20%E2%80%93%20claims%20to%20detect,swelling%20of%20white%20blood%20cells%22

Demand a referral to gastro and a colonoscopy imo.

They’re definitely doing a colonoscopy, someone phoned last week asking if I was able to come in within the next fortnight to get it done . Said I should hear a date/pick up laxatives within 7-14 days or so .

Finally stopped at half 9 last night, by that time horrendously drained and had nightmares all night . Rang 111 at half 8 or so and they said no immodium, I asked if I could even take codeine but said constipating effect not guaranteed and said as they don’t know whats wrong probably better out than in …

Hopefully they do the colonoscopy soon .

I do get issues with reflux funnily enough, constantly - especially after biscuits and bread - but normally just chug gaviscon all night !!

Still in the same boat this afternoon . God knows where it’s coming from as all I’ve had is ice lolly’s .

Sorry to hear you’re suffering OP and hope the scope helps them identify or rule out conditions.

I was diagnosed with ulcerative colitis as a teenager (although have a j-pouch now). I was severely anaemic, practically collapsing and needed 4 pints blood. Lost tons of weight as was barely eating due to the pain of having to ‘go’ - this had been happening for months before my mum took me to hospital.

That was nearly 30 years ago and I still have issues with different foods and have iron deficiency which is controlled with daily iron tablets. My tolerance to food has changed as I’ve got older. For me legumes, soya, lentils, anything too fibrous is a no go. I’ve tried fodmap, non gluten it’s so trial and error even now.

Hope you get answers soon

OP my DH was very similar to you, suddenly got ill like this and went downhill over a period of a few months. GP was useless. Private doc suggested FODMAPs turned out our (healthy we thought) veggie diet was full of them. Anxiety also contributing. He saw dietician. Cut out fodmaps. Counselling and pills for anxiety and had made a pretty much full recovery now, though it's been gradual probably 18 months all in. Has been able to reintroduce most foods but not onions or many fruits which are the worst culprits. He had scopes, x rays, ct scans all showed absolutely nothing but like you was losing weight like mad.

Also don't feel bad about the accident. He had a few of those too, it must be horrible but it's part of life for lots of people, you're not alone. Hope you feel better soon.

Not a solution, but I would massively recommend buying a radar key. You can literally buy them on Amazon and they are a life saver for me (IBS-D) in terms of not worrying as much and being able to get out and about. It's not the answer to everything or every many things, but it does give some comfort.

Hope the hospital appointments can help you!