2019-10-30

IBD, the NHS and me – my story of how I need to second guess if I need medical help

I found this post in my drafts folder, I am not sure why I did not post it at the time. This is an account of what happened in January 2018 and why it is important to not second guess yourself if you need medical attention. I am publishing it now as I am working with Crohns and Colitis UK to raise awareness of the conditions and how difficult it is to try and get a diagnosis and be taken seriously by the medical professionals.

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1st January 2018

Its 1st January and it’s 2am and my mind is racing. I am over thinking everything again. I had a great evening and maybe I’ve just over done the NYE party, I didn’t drink though and I didn’t eat any trigger foods, but I have a new pain that I have never had before. My stomach had a stabbing pain close to my belly button. It hurts when I move even the slightest and I can’t even stand the waistband of my PJs on my skin.

I did the thing everyone knows not to do, I googled my symptoms and now I’m over thinking my life and living with IBD.

This is when being single sucks the most. You have no one there to tell you to stop over thinking, to provide comfort and reasurance. So I do the next best thing and try and talk to people in a Crohns and Colitis Facebook group. Moments later my inbox is pinging and notifications are coming through telling me to GET TO A&E RIGHT NOW. That reassurance I was looking for has now vanished and the anxiety is rising.

It’s 2.30am and I am reading what my symptoms could be. Seriously, stop googling things!

What if I am making it up and I’m just making myself worse? I have lost count of the amount of times over the last few months that the doctors have told me that I am fine and nothing is wrong. But everything in my body is screaming that something is not right.

What if I’m not over thinking things and I actually am really ill?

What if I don’t get treatment and it gets worse?

What if I need to stay in hospital again for days at a time, what is Nathan going to think?

Is this what my life is going to be like from now on? Will I have to second guess every weird and wonderful thing my body does? Can someone just give me a user guide to IBD and let me know what is normal?

I eventually sleep. I wake dripping with sweat, migraine like symptoms forming and more pain. I shut myself off from the world and sleep as much as I can. I don’t eat or drink for the fear it will make things worse.

2nd January

My pain is growing and I’m now worried as to what’s going on. I’m still being told by Facebook people I should have gone to hospital before now. I ring my doctor, who because they are so busy with everyone saving up their coughs and colds over Christmas, I eventually get a phone consult at 5.30pm.  My doctor does little to alleviate my anxiety by agreeing it could be a number of things but as the wait time at the local hospital is 9 hours, he thinks I should self medicate with morphine and ring back in the morning.

I take the morphine and instantly my body goes into spasm and shock. The pain is worse than before and I feel sick. It feels like my chest is about to explode.

Is this a panic attack? Is this a reaction? Should this be happening? Do not Google.

The pain subsides enough for me to drink a cup of tea and have some toast, though I am so dehydrated it feels like I am eating cardboard. Immediately I need the bathroom and what I have eaten and drank is expelled from my body with the most horrendous stomach cramps.

3rd January

Eventually I fall asleep but due to pain I can’t stay asleep for more than an hour at at time. Everything hurts. I am counting down the hours till 8am when I can ring my doctor back. I lie in the darkened room with waves of sweat pouring over me. This can’t be normal?

Bruising from blood tests

Suddenly this wave of sickness hits. I’m never sick. But now I am. Between being sick, passing out on the bathroom floor, being sick again, I manage to call my doctor who said that I need an ambulance right now. They dispatch an ambulance to me and I wait.

I am shivering and sweating. I cannot walk. My vision has gone, my head hurts, everything hurts. An hour later I get a phone call from the ambulance service to see if I actually do need an ambulance or if I can drive myself. After a quick chat they agree I do need one and that one will be dispatched to me with blue lights when it can.

When it can.  Let that sink in… when it can.

Due to my high levels of attendance it is questioned if I really do need medical assistance. I later learned that this would be the case even if I had a car accident, due to my high levels of admissions I am not taken seriously and my calls are not prioritised.

Eventually an ambulance arrived but the two paramedics refused to come into the house as I had cats, as they were more dog people. I have to walk myself to the ambulance. This may not seem like a big deal but when you have no feeling in your right thigh, stomach cramps that are doubling you over, shivering and also can hardly see due to visual migraines, it’s pretty hard.

I was buckled in and given gas and air and then taken to the hospital. The paramedics waited with me for a further hour in an open loading bay type hallway, in freezing January weather, to hand me over to the A&E team. By the time I got seen by  doctor it was 11.45am. Almost four hours since my original call.

I had blood work done, and then left in a corridor for over 13 hours while debates between medical, surgical and gastro teams argued over who should treat me and where I should be.  I was told, and I quote “your blood work has come back and it’s worrying, it’s actually deranged. If you had not had your appendix out already we would be taking you for surgery, but now we just have to work out what’s going on”.

Due to the NHS crisis, none of the department’s wanted me as they were all at capacity. The only way for me to get a bed on one of the wards I need is if someone gets discharged or they die. So I was told I was in for a long wait.

At 11.55pm a bed did become available on a medical ward. From experiance I already know I am not a medical paitent and if I present to that ward I will be ignored and sent home shortly after. I begged for another bed, I said I would wait but the staff didn’t listen.

4th January

10am ward rounds and I am told I’m fine to go home. I knew this was coming. I ask to see gastro doctors, surgical doctors, to be moved wards, to at least be examined, to at least be given appropriate pain medication. I am told that I am being a bed blocker, but, they agree something is wrong but it’s not a medical issue and therefore I cannot be treated on that ward. I am refused a second opinion, and without my consent, when my clinical observations are scoring that I need intervention and medical assistance, I am sent home.

Medical notes

At home I ring 111 the non emergency number to ask for advice. I am called back by a consultant doctor who agrees that with my symptoms I need medical help within 2 hours and they ask me to go to another hospital to be triaged by an out of hours doctor.

My friend drives me to another hospital in a nearby city, hoping I will get taken seriously. I sit and I wait for an assessment to be told that he is really the wrong person to be speaking to and even though I am ill and in pain, he’s not concerned that anything will change overnight and sends me home.

5th January

8am I ring my doctor and I am told that a message will get sent to him to ring me back when he can. He does at 8.30pm from home as he was concerned about me. With my symptoms growing, the nausea, the headaches, the shivers, the temperatures, and everything else he said I do need to see a specialist at the hospital but doing the a&e route or ambulance is not going to get me to the right people. He suggested I try and stay hydrated, don’t worry about food, just keep drinking what I can, stay resting in bed and he will see me in his office on Monday at 10am. Obviously if things get worse I will need to call for help, but try and medicate at home and hold out till he makes a plan on on Monday.

6th January

I wake up with a headache that feels like my brain is trying to escape my skull. The pressure is so intense I cannot move. I text one of my friends who drives over to come and check on me. When she arrives she immediately calls an ambulance who take me back to my local A&E. This time I am seen quicker as I have developed markers for sepsis or possibly meningitis. The hospital is still full, so I have to wait 17 hours for a bed. I am left in a hallway yet again, but at least I have one of my friends keeping me company and helping advocate my care needs.  I am eventually admitted to a ward where I have to wait till the following day to see a doctor. All this time and the only pain killers I am given is paracetamol.

7th January

The morning ward rounds bring little news. There is signs of both infection and inflammation but they do not know why. The doctors are hesitant to give me any more scans or tests due to radiation risks and believe that not much will have changed since the previous ones 5 months ago. I am fed various pain killers and advised that they will conduct daily blood tests and I can go home once my inflammatory levels start to decrease.

11th January

I am finally allowed to return home. I still have no answers as to what is going on but the doctors agree that the treatment they are providing can easily be done at home, helped and assisted by my 12 year old son, or friends who I should call on to take care of me as I am becoming a burden  to the NHS.  My inflammatory markers on the day of discharge were higher than when I was admitted, but this fact is overlooked and I am told that I should not try to understand medical records without adequate training.  I am exhausted but leave the hospital and head home. I find out on returning home that one of my cats has been hit by a car and killed while I was in hospital. The guilt overwhelms me as I blame myself for not being home. I cry myself to sleep wishing that I had answers and wondering how I can continue like this.

Medication

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I would love to hear your thoughts on this. Have you been treated this way by medical professionals? Have your care needs been down played because you are a woman or because of your previous medical history? Please share your thoughts, comments and opinions below or on facebook.

Love, hugs and restful sleep

V x

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