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

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 am passed being shocked by how ill informed doctors are with B12 deficiency, but I am so angry at the absolute shite they have told you B12 deficiency is life threatening & disabling (my back if f'ed at my neck & lumber spine & so much other damage that will never heal too)

My B12 levels were at least in the NHS normal range, though barely & probably not when I was kept in hospital after DDs birth. But if a doctor has recognised you have a deficiency then it needs to be treat NOW!!!

What sort of Mickey Mouse uni did they get their bloody degree at!! He's right you won't be able to absorb B12, but from anything you eat, including the supplements he/she suggested - THATS WHY THEY GIVE IT AS INJECTIONS!!! To bypass the gut & get into your body at cell level where it is needed!

They are NEGLIGENT!!!

They told you to cut out gluten before the test ? This is the opposite of the correct advice. Please tell the consultant that this is the advice you were given - that's outrageous.

Jump up and down for b12 injections. You will feel like a different woman

you can have a blood test for h.pylori -
with these symptoms you should have been referred a lot faster - are they aware of the blood? sorry if i have missed it

I gave up with my GP as I needed to fight for my DDs treatment & was too ill to manage. The group I have linked to in my earlier post & the Pernicious Anaemia Society helped my buy B12 from Germany & I began self injecting. Its much easier than I ever guessed it would be & it meant I was much more alert & could handle the reams of letters to DDs doctors & the info I had to trawl through & digest to get help for her. Many of us do SI due to uneducated doctors.

Though my GP did come round in the end & my kidney specialist also recognised me as deficient, so told my GP to treat me as he at least knew that the "normal range" for B12 varied around the country & I was definitely deficient, though he refused the loading dose in favour of monthly jabs. The Facebook group linked to on the website I posted earlier has 10,000+ members, all have had to fight for treatment, most because of borderline results & doctors not understanding or following NICE Guidelines,

but you have a diagnosis!!! Shockingly Negligent!!!

In the mean time, Google "Golden Milk" for a recipe,

it is a pleasant warm drink made with turmeric, black pepper, honey & almond or coconut milk. Turmeric has been proven to be as effective as some drugs for helping inflammation etc & it was a huge help to my DD when her bowel problems were at their worst. It calmed both the diarrhoea & pain for her. It was the only thing that helped her at the time

Sorry to keep adding separate replies, my blood is boiling here at your doctors negligence

Be aware, if you have taken a multi vitamin it will skew any future B12 test results, as the NHS serum B12 test only measures what is in your blood, NOT what your body can use at cellular level. B12 supplement WILL get into your blood, but will lack the needed attachments to carry through cell walls into the cells where it is needed to do its job. This is why cobalamin injections are needed, as it can get into the cells.

Black tar poo can be a sign of internal bleeding, so I don't understand why the didn't do anything. You must be at your wits end. I feel for you. As for the orange poo, that's not on any stool chart! So it's baffling. But browns is very good. When did you start to notice the changes in your poos/bowel movement etc? Did you just go to the toilet one day and it was normal, then the next days it was blood & black etc? You really need to push this with the doctors as they aren't God like they sometimes seem to think they are and they do get things wrong. Do you eat fibre? Natural bran form Holland & Barrett is an excellent source for this. I mentioned to cut out the chillies because I had them religiously, and I mean with everything. And I was getting your symptoms minus the blood, and I was getting terrible cramps. I stopped eating them so much and my poo has improved dramatically. Damn chillies, love hot food! I wouldn't settle for them fobbing you off with supplements.

I am so glad that you are all agreeing about the GP. I thought it was wrong at the time about the b12 injections and gluten tests but I just went ahead with the test because you imagine they know what they are talking about.

What makes it worse is that all 6 of the doctors I have seen at the surgery said the same thing about the b12 injections!!! So I honestly thought they were correct I mean why would 6 different GPs be incorrect! I am moving doctors surgery soon because if it all. It has driven me mad

So this is why my back is killing me lately? Unable to move basically? Without falling or anything. Just got up from the car and that was it. Gone in a flash.

They know about the blood in the stools, I've told them all. There was even blood in the samples that I sent off.

Sorry for not identifying each person's reply- I see so many people do that in bold but unsure how to do it

I will definitely be joining the Facebook group and trying the Golden Milk.

In all honestly I have lost faith in the NHS because of everything but I can't afford to go private. I just want some form of help. I feel like I am going insane. And have had to take time off work which obviously isn't good for anyone

Sorry Kitty my reply took so long to type I didn't see yours.

Yes one day I was fine, normal poo, no pain. Even that morning I was all good. Then it all started in the afternoon, I hadn't even eaten anything as I hadn't had time as work was busy. Well I had had a cereal bar for breakfast as always.

The a & e doctor said yes you have internal bleeding and did some blood tests and then sent me home and to report to my GP if there was any change in stool. He said as I was already referred to the gastro he couldn't do anything. I literally broke down and he said "sorry, nothing I can do".

I used to eat very fibre rich food, but when all this happened I stopped because I felt like it was making it worse and the GP (why did I believe them all!) agreed that i should stop for a while in the hopes that maybe I had eaten too much fibre and that was the cause.

I would keep your diet as simple as possible: try a week eating clean, with just fish, meat, simple soups and cooked vegetables. Drink herbal teas, esp peppermint.

Cut out dairy and gluten. Don't eat salads, steer clear of onions and pulses. Chew every mouthful 30 or 40 times. Take heaps of probiotics. Bio kult (on Amazon) is the best non refridgerated version.

That won't cure you, probably, but it may help you work out what's triggering your bowels to react.

Lastly, keep a food diary (or photograph every meal)
I hope it's more food and diet related than anything else.

I think you have seriously failed by your GP surgery. They need reporting to have left you this length of time with your symptoms!! You should be been referred as urgent for further investigations. It's a disgrace. I hope you get answers soon x

Oh, and find another GP practice!

Do you have a Reviv or similar health/beauty clinic near you that do vitamin infusions ??

You can have a B12 injection done there & it costs about £30, they have the back up incase of a very rare allergic reaction & from then onwards it is safe & easy to SI. Deliveries from Germany are quick too & you get all the needles, sharps box etc free from a needle exchange. (Red pack with 1ml diabetic needles)

Your GPs surgery still needs to learn though, if you have DCs this could affect them too & unfortunately injecting our DCs could see them taken away from us for child abuse, crazy situation. So its important to educate your surgery, even if you give up & SI

Put everything in writing from here onwards, via email if possible & copy in the practice manager, include print offs of NICE guidelines, Nequas Alert & BSCH guidelines, all of which say treat immediately without delay with injections!

I'm going to try & dig up the patient UK page for you - GPs use this & it says very clearly to inject!

Oh & orange poo, green poo, beige poo, I have seen them all - gastritis means your digestive tract is inflamed & so cant digest food barely at all, so it passes through & comes out whatever colour it went in. I have had black stools too, this is bleeding, but gastritis can do that too. The infection, such as H.Pylori, causes the inflammation

Most foods have proven to set my bowels off for now. But I am definitely going to ask about the FODMAP thing. I am just so desperate for any relief right now. The pain in unbearable.

I've food all fruit and veg makes it worse and the only thing that helps any is eggs and bread it helps to settle the stomach for a while.

I will have a look to see if there is someone near me that does the vitamin infusions. I am a bit apprehension if buying them and doing them myself but will give anything a go at this point.

Going to bring everything that has been said up with the gastro tomorrow. Really hoping he/she is more useful than anyone at the GP surgery. I am in the processes of moving from there so that's a bonus!

• found not food!

This is the NHS website that GP use, it clearly states that you should be treat urgently with injections!

Print this off & send to your Practice manager & GP, with a letter saying

Dear xxx

I am very concerned about the delays in further investigations & lack of treatment for a diagnosed B12 deficiency & Folate Deficiency. I understand that as a busy surgery, sometimes things can go amiss, but my understanding is that all relevant guidelines indicate a need for urgency of treatment in order to prevent further/permanent disability or even in some cases death.

I am also deeply concerned as reading this contradicts advice already given that I take a supplement containing Folic Acid, WITHOUT correctly treating the B12 deficiency too.

I hope you can there for understand why I am so worried & ask you to reconsider giving me a loading dose of B12 injections with adequate follow up maintenance dose, plus a folate prescription as a matter of urgency.

As per the Patients Charter I am trying to help you, to help my own treatment & I include a print out of the NHS website that you will use with the relevant areas highlighted for your ease. This print out echoes NICE guidelines, a Nequas Alert & BSCH guidelines.

I ask that you take this matter very seriously & treat me as a matter of utmost urgency to avoid any further deterioration or irreparable dissability/damage

Yours Sincerely

Xx

This is the link - highlight the "Management" section

NHS B12 LINK

Also note, it says that taking folic acid now when you have a B12 deficiency is dangerous!!!

This form might help you with appointments & getting proper treatment too - if you have nuro symptoms its every other day injection until no further improvement

The flow chart, is the treatment path that doctors must take & is from NICE guidelines, print off, highlight & include that with your letter too!

Good luck!

& thats not because I don't think you are capable of putting a letter together, but I know how much I struggle cognitively when I need B12 jabs, so you must feel bloody awful

Good luck OP this all sounds dreadful.

Rockinhippy sorry for what you went through, I'll keep all the info you gave in mind.

How are your periods? Do you think you could have something gyno going on? Have you had a smear recently?

The reason for asking is that my friend's sadly serious gyno issue first showed itself with terrible diarrhoea

Rockinhippy- thank you so much for the letter. My mind is constantly fuzzy so it's great to have it done for me. I'm on it!

Periods have been fine. Same as always which to be honest isn't fine. I have dysmenorrhea. Had a smear a few months ago and it was fine

Johnstonbananas you don't have to reply to every comment Bless you! We are here for you tho, trying to figure out what it is for u as the Doctors don't seem to be doing a very good job of that at the mo. I hope you get to the bottom of this as it can't be nice for you, not knowing what is the cause etc. I can imagine it is very worrying. Please keep us updated. I'm sure there will be a simple explanation as to the cause. Don't google it. Google says the worst outcome. I made that mistake loads of times, worried myself sick because of it. I had a headache, google said brain tumour. Good luck with it all anyway. You will get your results in the end, I just wish they would get a shifty on about it.