Incredibly dodgy bowels- need some hand holding

[Johnstonbananas]

Hi all, my first op here so hope I've done it right

For the past 7 months I have had diarrohea every single day without fail, some days it is 5 times a day other days it's up to 15 times again. I have nausea, vomiting, aching limbs, sore muscles, acid reflux and extreme tiredness.

I went to see my gp 7 months ago when it started and he sent a stool sample off for a virus- came back clear. 2 weeks later another sample sent off for calprotectin- came bag negative. He referred me to the gastro specialist and I finally have an appointment this week- 7 months later!!

In between the time I have been to see 5 other doctors, - trip to a & e and I have been told so many different things, colitis, crohns, virus, ibs, nothing wrong at all.

My blood test results from a few weeks ago show
Vitamin b12 definicency
Folic acid definicency
High platelet levels
Inflammation
And an internal virus

I have been waiting for so long on the gastro appointment I have started to loose hope and am starting to worry they will think I am wasting their time.

Just hoping someone else has been through this and can give me some advice/ some hand holding/ an idea of questions to ask at the gastro appointment

Are you taking supplements now for the deficiencies? I have had a folate deficiency and had diarrhea for over a month before I started taking vitamins and eating more in my diet. Any chance you might be coeliac?

They have tested for coeliac-nothing showed and had to cut all gluten things out but that didn't help. Yes I am taking supplements for the folate deficiency and the iron definicency. Still waiting on the b12 injections though.

Thank you so much for your reply.

Gosh - 7 months is a long time to wait, that's crap. I got seen within 2 weeks as it was an urgent 2 week wait referral.

Do you have any blood in the stools?

I hope they would want to a gastroscopy and colonoscopy to see what's actually happening in there, hopefully it won't take months to get that scheduled.

Oh dear, you poor thing

My bowels are often ... Unpredictable. Everything on the Bristol chart, from one extreme to another

I was advised by GP to follow a FODMAP diet while waiting for results for crohns, coeliac & ovarian cancer

Tests thankfully came back negative, and symptoms vastly improved

Is this something that GP has suggested?

It's very counter intuitive as a 'healthy' way of eating, but has worked for me

Hope you feel better soon

Thanks for the replies.

No one has suggested the FODMAP thing. Once they referred me they basically washed their hands of me.

There is blood in the stools but not every time. Maybe just once in the day.

When you say blood is this red blood or black blood like coffee grounds!?

FODMAP diet is sensible to consider after talking to gastroenterologist- anxiety can cause IBS too, donyounsuffer with anxiety!? Definitely time to see the consultant!! Make sure you see the consultant too .... perhaps when you go to the clinic ask that you're definitely seeing the consultant, if not tell them you'll wait for the consultant - good luck!

You poor thing.

I find that I have very varied reactions to different foods. Gluten and eggs bung me up completely, but dairy and, rather randomly, ginger give me diarrhea which is sometimes bloody (mainly with ginger).

I have a family member who gets this with dairy and onions.

I've had fairly basic tests, which didn't show anything. He had everything going, and again, nothing showed up. We worked it out by a process of elimination.

If I eat simple meat, veg, rice, fruit, fish etc, and use lactose free dairy products, I am fine.

I will definitely ask about the FODMAP thing and do some research myself. At the minute only bread and jelly are the only things that don't make it worse.

The blood is red in colour. In the toilet bowl and on the wipe (has to stop with toilet roll a long time ago- sorry for the tmi)

I will make sure they are a constulant at the appointment. I am at that point where I am wondering if I have gone mad and maybe this is all normal.

I would say I have never had anxiety but this is certainly making me feel anxious.

Again thanks so much for the replies. It really means a lot

FODMAP has a 75% rate of success as long as you stick to it. They ought to refer you to an NHS dietitian to work on it with you.

Have you had any diagnostic tests at all? Your story sounds scarily similar to mine, and I had stage 3 bowel cancer.

They fobbed me off for 7 months with IBS until they were so fed up with me that they referred me just to shut me up.

Hope yours isn't and that you get some answers, but if you don't, insist on a scan or some other procedure (mine was spotted during a barium enema and confirmed with a Ct scan)

The only tests I have had so far are blood tests, nothing else. I am just really hoping that the gastro constultant will ask for some tests and rush them along because I'm not sure how much longer I can continue with all of this

Your GP needs to get their bloody finger out & start your B12 loading dose as a matter of urgency, it is negligent for them to do otherwise!!!

They also need to treat the folate etc too

Please have a read of this website ... HERE

On the "useful links page" you will see "Pat Kormics Facebook Support Group"

Please join that group & they will help you understand what is a pretty complicated treatment protocol. B12 works with other vitamins & minerals, so its very important to get the correct balance of Cofactors so that you have the best chance of fully recovering.

Also ask to be tested for the MFTHR gene defect. This means that your body cannot process Folic Acid into Folate as is normal, so treatment with this can be different

Left untreat, or inadequately treat, B12 & Folate deficiency are serious disabling & even deadly conditions (pernicious means deadly) getting the treatment right could well mean you make a full recovery.

Unfortunately too often doctors, including consultants don't have a clue & you end up with inadequate treatment or in too many cases, no treatment at all.

My DD spent years living & going to school with the diarrhoea you describe, fobbed off with IBS - eventually allergies to soy & Cochinael were diagnosed & we already had worked out for ourselves that she was intolerant to a lot of stuff. She got more ill over the years, Anxiety, phobias, body wide pains, constant headaches, raging insomnia, 2 hours was a good night & so much more. She ended up in a wheelchair & that was on a good day.

It took me 7 months, but thanks to info from the group I mention above, I managed to persuade our GP to follow NICE guidelines & trial her on B12 injections & gave her all the cofactors as per the group admin/files instructions. She was sleeping normally after 1 jab & after 18 months of being unable to stand, she walking again after 6 injections.

All of her allergies have gone, no IBS, she doesn't need the FODMAP diet any more, pain is 90% better, headaches gone & so much more.

Her B12 was supposedly in range too, but according to research it was low for a young teen & I knew we had PA in the family.

I also have it, but my treatment is complicated by an adrenal issue I am under investigations for, meaning I can't take the every other day injections that I need as it depletes my potassium too much & low potassium is bad. But the weekly jabs do help somewhat, though thanks to 14 years misdiagnosed, I won't make a full recovery.

Please join the group & demand your GP treats you NOW!!

Is the infection Heliobacter Pylori?

This is a common cause of gastritis & would cause malabsorption too

Oh & you need to see a Haemotlogist - they are the experts in blood chemistry

By way of reassurance, I also get regular bleeding, which is bright red, its caused by a combination of internal haemorrhoids & tearing. No cancer, symptoms all caused by H.Pylori/Gastritis & PA

If you eat a lot of hot chillies they cause the symptoms you are describing, also lack of fibre. Poo hardens & gets processed in the colon, so yours isn't spending enough time in there to get processed properly, it's passing through your system too quickly. Try eat more fibre and cut out hot chillies if you eat them. The colour is a good determination of what's going on inside too. What colour is it? Compare it to the Bristol stool chart on google, take a look. Light brown - medium brown is good. Anything verging on very dark brown/ blackish isn't so healthy. Not very helpful info as I'm not a doctor, but hope this has helped a little.

Just read that you have mentioned blood. Firstly they need to rule out that it isn't bowel cancer. I hate the bloody c word That is worse case scenario, it probably isn't as there are hundreds of things it could be before that is even considered, so please try not to worry. Before cancer is even though of it could be piles, haemorrhoids etc, as this would cause bleeding also. Is your blood the colour of black tar? I hope they get to the bottom of this as the symptoms ur describing need urgent medical attention.

I meant is your poo the colour of black tar? **

They have tested for coeliac-nothing showed and had to cut all gluten things out but that didn't help. Just to check, you did eat gluten until the test? It won't have given an accurate result if you didn't.
It takes several weeks for a difference to show once you stop eating gluten.
And

So sorry. I developed bowel problems after the birth of my second child a year ago. I've had loads of tests but still haven't got to the bottom of it. Exclusion diets haven't worked for me either. It's so miserable and soul destroying

Wow loads of replies so I will try and answer all the questions.

They told me to stop eating gluten for a few weeks before the test and I did this. But perhaps I need to do it for longer just in case.

My doctor- this is the bit that enrages me so much- told me my b12 levels were fine in January. I saw another doctor in March about the diarrohea- he was outraged, but said it was a waste of time sending me for injections because my body won't absorb them at the minute!!! I have begged and begged for them but no joy. I was just told to buy a multi vitamin containing folic acid- apparently that's enough!

I don't eat chilli at all, literally haven't eaten anything with flavour for over 7 months- I'm also not a big fan of spicy food in general haha.

My poo ranges in colour, it was black tar once and they said I had internal bleeding in a & e. They did nothing for that and said it was normal. My poo is mainly brown, it was orange a few days ago, haven't eaten anything orange so unsure why.

They have checked for general gastritis but not helobacter pylori. I will ask the GP to check for this if I can ever get an appointment. Is anyone else's gp like this? They don't take advanced bookings, only on the day at 8. But they turn their phones off at 7:59 if they have no appointements!

Miserable is the word Simmi!

No no they told you the wrong thing, you should have kept eating gluten. The test can't pick up a reaction to gluten if you haven't had any!
Ask them to retest. You will need to eat gluten for 6 weeks, at 2 meals a day.
I'm for you that they've been so useless for you.

Your doctor is shite!! You are meant to load up on gluten foods ahead of the celiac test, not cut it out!!. Even mine got that right. The test isn't reliable anyway, so make sure you mention it to the Gastro doctor, they can check with cameras, ask them about checking for PA too. They can check both with a camera/tissue sample.

Though you still urgently need the B12 injections, whether its shown up as the hereditary form of PA or not, none of the B12 related tests are reliable. Positive is positive, negative has a 40% change of been wrong.

You do already have a diagnosis that covers most of your symptoms though & that is the B12 & Folate deficiencies, plus the gastric infection, which I'm guessing is H.Pylori which would cause Gastritis.

Yes you must keep eating gluten for testing and even if negative it doesn't mean that cutting it out won't help. I have to cut it out completely or the diarrhea returns. Even tiny amounts in stuff (e.g. soy sauce) can make me ill. It could be a different trigger for you. Try the FODMAP diet for a while (obviously not in the run up to a celiac teat) and see if it helps before reintroducing one food at a time.