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

Oops sorry for the 3 same replies! Internet said failed to post, so I tried again & again..

Hi Johnston, just wanted to say that I've had similar symptoms - I've been diagnosed with ulcerative colitis, which is a form of inflammatory bowel disease, like Crohns but affects a different part of the digestive tract.

Before diagnosis, I did all types of diets and food exclusions you can think of, nothing seemed to work. In the end, I just stopped eating because most of the time I hadn't even finished before I had to go. I was lucky that my GP knew exactly what I had and referred me to a sigmoidoscopy so from my first seeing him to the sigmoidoscopy was only about 3 weeks. (The diets I tried before seeing the GP, I had the symptoms for about 2 months before I plucked up the courage to go - stupid, I know).

I am shocked that it took 7 months for you to see a specialist but not at all at their lack of knowledge/difficulty in being diagnosed. While I'm not saying you have IBD, a quick look at any IBD forum and you will see very similar stories to yours, some people wait for years to be diagnosed, sometimes after repeated misdiagnosis

The good thing is you are seeing a specialist and, hopefully, things will improve from there. Try to write down everything you want to tell him/her so you don't forget anything important (exhaustion makes the mind foggy).

If you're taking anything for the pain, stay away from iboprufen as it can make the bleeding worse.

Good luck

Good luck with the gastro specialist this week - let us know how you get on.
sounds stupid but write down everything everything from the last 7 months so that you dont forget anything.
hopefully your specialist flags how poor your GP service has been - they deserve more than a slap on the hand.

I'm sorry you're having such a hard time, OP and I hope you get it sorted soon.

I just wanted to express a word of caution regarding B12; I know many people self treat with injections and supplements but please be careful.
I was rushed through A&E after an anaphylactic reaction to B12 supplements - my blood test levels has been low enough to require the injections, but my GP was useless and prescribed tablets. The A&E doc said that probably saved my life - if I'd been injected, I would have died.

A lot of people think B12 can't be dangerous as it's a vitamin and in breakfast cereal, but it needs careful medical supervision.

Hi Johnston I have had similar problems to you, coming up for 2 1/2 years now, I have had diarrhoea every day apart from 2 in all this time, anything from 5 times to 25 times a day, very regularly I have to resort to incotinence pants as it comes on so quick, screaming in agony from cramps. In the first 7 months I was regularly at the g.p. who dismissed it as IBS, I went from 8st 4 to 5st 10, ended up being admitted to ICU over christmas with dangerously low potassium due to the diarrhoea going into heart failure, my parents were told it could go either way. At this point consultants took notice! I had cameras up and down and they found it to be colitis, (not confirmed which type as due to how sick I was they couldn't prep me properly.) I've tried various steroids but nothing has helped greatly as yet, I have a new consultant due to moving who is starting fresh and I have more tests happening, a ct this week. Through my own diets I have worked out I cannot tolerate gluten or dairy. It's very tricky! Raw foods aren't great with IBD's so avoid them.

Please don't sit back and wait, keep pushing the g.p., ring the consultants secretary and emphasise how bad it is, ring for cancellations. Ask for regular bloods to check salts and minerals.

Push the g.p. for the B12 injections, they should be done carefully but can make a huge difference.

You must be experience the fatigue/ 'brain fog' so write a list of questions for the gastro to ask when you go, I often get my list out! If you're diagnosed with an IBD ask for details of the IBD nurse, they are a good port of call when having a flare up.

If you need any help or just to chat to someone in a similar position let me know! I hope you get some answers soon.

Thank you all so much for the replies. They all mean a lot. I have some questions written down and all of the symptoms and issues I have had written down.

Any idea of any specific questions I should ask?

Everything you're worried about basically!!! Don't hold back, wrote all your worries down. Ask for dietician referral if consultant thinks it's needed. You could ask about bowel research in your area as there are many research centres (let me know if you're near Nottingham):
Ask for an MRI or eua (explore under anaesthetic) if they're not sure
Good luck!!!

Thank you all again for the replies. I've never been more nervous for an appointment in my life. I feel like I have been waiting for this for so long I just hope this doctor doesn't ignore my cries for help like the other ones do. I'm sure they won't but I'm so disillusioned with everything.

You lovely people have really given me a great push to attack the GP again after this appointment too so I am incredibly grateful.

I will update when I have some news from the appointment

Good luck OP

Good luck, and do update.

Hi all
Just back from the appointment with the gastro. Wasn't the longest of appointments and he basically just asked me questions. I told him my symptoms and he said oh well there isn't much I can do about that right now- fair enough but could phrase it better.

He is sending me for a colonoscopy and a camera down the throat too. He said it could take months for the appointment for that as he didn't mark me as urgent. He also said it could just be ibs (just was his word) but he needs to rule other things out.

No offer of help or advice to help while I'm waiting for the test though which I asked for.

That's very disappointing. Wheels set in motion but so slowly. I hope some of the knowledgeable people will be back to suggest ways of getting more help sooner.

hi not sure where you stay but where i live its supposed to be 18weeks referral to treatment. i would find out of your local health board what there targets are and then right to the hospital who will be performing your scopes

Can you go private OP? How frustrating!

I would love to go private but I really can't afford it. I tried to go private before but the price of the colonoscopy was too expensive sadly.

Redken- how can I find out these targets? I did a bit of googling but no luck.

Just an update for anyone who may be interested.

Just got a phone call from the hospital to say that my scopes will be happening on Monday- they must have had a cancellation! She asked me if this was ok and I screamed yesssss hahah.

So happy I'm not waiting the proposed I was told before

Great news OP. Good luck. I had one in January and it was absolutely fine.
Keep us updated as to how you get on 💐

gaah - good luck!
And the targets should be available frm local healthboard website.

Thank you Simmi and Redken I'm off to hospital for the scopes as we speak. Bowel prep was awful!

I went to doctors a year ago as had blood in my poo. Did tests and conclusion it was IBS and b12 deficient.
I still suffer severe diarrheoa daily. I just live with it now. Followed FODMAP for 6 months and concluded onions and garlic cause cramps but nothing stops the diarrheoa. GP not interested.
I get one jab of b12 every 8 weeks at doctors so have taken matters into my own hands and started self injecting.
Symptoms were extreme fatigue , pain all over my body, anxiety, nerve damage in hands, depressive thoughts, dry skin. Since injecting every other day I'm like a different person, no pain or tiredness!

Just finished and honestly it was the most traumatising thing of my life. They couldn't find a vein, it took 4 nurses and 1 doctor. Then the sedation didn't work but they went ahead anyway.

The throat one was awful. Honestly I have never felt so bad in my life. The colon one was ok. But very painful as he moved. He took some biopsies and that caused lots of bleeding.

Results show I have nothing wrong with my bowels so back the start all over again. Thanks all for your support

My colonoscopy looked normal but the biopsy results that came back showed I actually had microscopic colitis - just because it all looked normal at the appointment doesn't necessarily mean that the final result will be "nothing wrong".

The nothing wrong words were from the nurse who gave me the feedback- i got quite upset about it because having all of these symptoms non stop for months doesn't mean there is nothing wrong. I was quite deflated after it actually because- I wanted answers and the sedation didn't work so I am still in agony

What is microscopic colitis Stormtreader? Thanks for replying. Did you get your results from your GP or your gastro? The hospital seemed to think I should have already booked a follow up appointment with my GI but he never mentioned it.

They're ruled out the nasties (bowel cancer and the most aggressive inflammatory bowel diseases) which is a good thing but the biopsies will be looking for coeliac disease and/or miscroscopic colitis, so it's not all be ruled out yet. To be honest, ulcerative colitis and Crohn's does normally show in the faecal calproctein test.

Do you have a follow up with your GI? You do need one for advice on treatment and biopsy results.

In general (although this isn't true for everyone) microscopic colitis is a less aggressive inflammatory bowel disease. This info is good; www.crohnsandcolitis.org.uk/about-inflammatory-bowel-disease/publications/microscopic-colitis

In a nutshell, unlike Crohn's, it isn't visible to the human eye during colonoscopy (or signmoidoscopy) but will be only seen under the microscope.