On going pain and bowel issues

[akg89]

Hi all, just wondered if anyone else has this experience.

I have had continuous pain and digestive problems for 5 years. In this time I have had gall bladder removed and appendix. I have had colonoscopy which found tubular adenoma but the remaining polyps were never removed(2019).

I am 31 and always told I'm not in the right age group for screening but have since learnt that on my notes I am to be monitored due to adenoma and colonoscopies every 5 years. I developed had notes from previous investigations despite multiple requests.

I had a baby last june and whilst pregnant I had no symptoms at all however they have all returned with a vengeance in the last few months.

My flare ups consist of; excruciatingly painful cramps in lower abdomen, frequent urgent diarrhoea and nausea. Usually for a few days then it eases off; leaves me exhausted then I'm back to normal - always with a low level abdominal pain.

This time was different. I've had 2 weeks of diarrhoea, 3 weeks of gradually worsening pain and the last 4 days no bowel movement at all. I feel horrendous and the pain is coming in waves and reducing me to tears.

I have an urgent gastroenterology referral but gp has sent me to a and e today as the pain is severe... I went, I waited, I discharged myself after a nurse told me I was stable and that a and e was full to capacity.

What do others do during severe flare ups when waiting for referral and diagnosis?

I've reached my peak for pain levels and quite frankly don't have the energy left to carry on with day to day life feeling this way.

Any one able to share experiences?

If your pain is that bad you should return to a&e - your doctor sent you there for a reason. I really hope you feel better soon!

I have had this for a few years. Eventually i was vomiting instead of emptying the bowel. Had to be hospitalised for 5 days. Turned out my bowel was not emptied out. Placed on medication to ensure it emptied each day. They diagnosed it as lazy bowel syndrome. Have not had any problems since.

I'm sorry for your suffering and the difficulties you're experiencing, op, but you need to go back to a&e. If they turn you away, speak urgently to gp or return later.

Thanks everyone. I know a and e was where I needed to be and probably still do but it was just so so busy and the triage nurse considered me stable despite me gripping my stomach and sweating with the pain.

I've had a rough night but gp is calling back ASAP.

I honestly think I'll be left like this until I hear back from my referral ☹

Update - test being sent out for me to send to lab to screen for blood in bowel movements. Antibiotics prescribed for whatever infection I have, gp will call me Monday when he's had results.

In the meantime any further severe bouts of pain or vomiting go to a and e.

I just want to be fixed 😪 ove had flare ups for 5 years and this is by far the worst. No appetite; need to go to the loo but nothing there to pass because I can't eat. Force food down and the pain shoots back up to unbearable ☹

Sorry its a moaning post I'm just massively feeling sorry for myself.

Oh bless you that sounds absolutely awful. I Have ulcerative colitis and when ever I get flares that sound like yours I’m off to hospital and they admit me. No chance will I suffer at home and neither should you. Keep pushing and pushing for answers. If you can’t cope please go to A&E .

I'm back in the wait for a clinician from 111. I really can't cope now.
Thank you for your reply.
I think given the pandemic and the business in a and e i have got to be persistent.

From your symptoms it’s likely to be a Bowel issue. I have similar issues and I have the ulcerative colitis but I’ve also had my gallbladder removed and never been right since. Hopefully they sort a plan for you. It’s not right to be going many times and the urgency to go is awful. I get admitted when I’ve been going 4 times a day so that’s saying something. I hope they don’t fob you off.

Triaged by a nurse in a and e who told me I have a nasty urine infection and to take more pain killers.... and wait for out of hours gp.

Didn't let me tell her about pain in my side, flare up and change in bowel habits or that I've now started to vomit.

I'm so fed up of this 😭

Endometriosis of the bowel. I’d put money on it.

I have it too and the fact that pregnancy got rid of the symptoms makes it scream out.

Did they actually test your urine or just fob you off with that? I've seen them try the "it's just a UTI" default response to what was actually a bowel obstruction and emergency case.

Are you still in a&e? Triage is just to prioritise who needs to be seen most urgently and manage the queue of patients safely, it's not the conclusion (unless you leave in response).

You really do have to advocate for yourself in a&e to be heard and you do have to repeat yourself for everybody who comes to look at you because zero information gets passed on.

@Createdjustforthis

Endometriosis of the bowel. I’d put money on it.

I have it too and the fact that pregnancy got rid of the symptoms makes it scream out.

I was going to suggest this also!!! ^

the triage nurse considered me stable despite me gripping my stomach and sweating with the pain.

For future reference, a triage nurse telling you that you're stable just means they don't need to take you to resus or take immediate action to preserve your life. It doesn't mean they wouldn't have treated you if you had stayed to wait your turn. They would have.

When they triage you they're working out how urgently they need to get to you, so they triage you then come back to you in priority order.

After triage you get assessed more fully, sent/booked for tests, given IV fluids and pain relief if needed, admitted if necessary.

I am constantly told you need to see your gp and the gp sends me here!

I'm sitting this one out as I've reached a whole new level of pain today and will see what the doctor says.

She dipped mg urine because I told her I'm on antibiotics for that but this pain is stomach/bowel and then didn't get to say any more. So will see what they say next.

Thanks for responses I dont feel like I'm going mad now.

I was also going to suggest endometriosis, you might find some further information here:

www.endometriosis-uk.org/understanding-endometriosis

They have a helpline that might be useful. I hope you get some answers soon.

Endometriosis is a really interesting point and not something that I've had mentioned before.

Reading it makes alot of sense and describes my symptoms.

I've been so convinced I have crohns or colitis but that suggestion has really made me wonder.

Let's see what the specialist says. I have a phone consultation on 8th Aug to chase up.

Last night I was referred to surgical reg team who think the localised right side pain is most likely a stone left from GB stuck in bile duct, planned to operate last night but then decided that wouldn't be sensible given the bowel inflammation and kidney pain.

So I'm back on oromorph for pain management and keeping a close eye on temperature as my infection markers in bloods were also high.

The doctor said basically this is protocol as I am due to be under a specialist the emergency surgical team would rather not intervene whilst stable but did stress that I must return with persistent pain, fever or vomiting.

So this whole episode is by no means over and I'm still in pain limbo but edging ever so closer to a diagnosis and treatment at long last.

Thank you for all the responses they really helped.

You sound like me. I've been told to speak to my GP about bile acid malabsorption . About 1 in 10 people who've had their gallbladder removed have it. It means you can't absorb fat properly so attacks are related to the amount of fat you eat. Easy check is to go low fat if they stop on a low fat diet that's probably what you have.

Hello I know this post is really old but would you be able to message me if possible I’ve just found out the poly op I’ve had removed is an adenoma and I’m freaking out