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The Flu Jab Saga (How I ended up crying snot bubbles in public)

After years of complex health issues, multiple surgeries, too many medications to name and months in hospital, I thought getting a flu jab would be a simple, fuss free event.  It started when a nurse in hospital clinic asked in passing whether I had had my flu jab this year.  I said I had never had one and she was surprised and asked me to see my GP and arrange one.

My immune system is shagged and I catch everything going.  I caught flu a few years back and spent a week in hospital.  Anyway, I pondered this and asked on my Facebook page whether other people with IBD had  flu jabs.  The answer was a resounding YES! And so I called the GP and asked the receptionist if she could check with a doctor if I should have one.  She said she would check and call back.  She did not call back.

So when I was seeing a GP recently, regarding my pouchitis, I asked her and she thought I should have one.  She said she would check with another doctor and let me know.  Last week I got a phone call from the surgery asking me to attend this week for my flu jab! Result!

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Today I trundled along to the GP surgery for my 10.15am appointment.  As I was called through, the health care assistant looked at the screen and asked why I was having this.  I replied that I have Ulcerative Colitis and have had my colon removed, that I had a rubbish immune system and that it had been recommended by doctors.

She shook her head, stood up and left the room.  She returned and said “Well, you shouldn’t be having this but seeing as you are here, we will do it but only this one time!”  I was quite surprised and asked her why I had been called in my the surgery for this appointment, if I didn’t need the shot?  She said she didn’t know.

I asked if I shouldn’t be having this because it was bad for me, she said I wasn’t on the list of reasons to give the shot.  She appeared a little angry with me but I wanted to be clear on whether I should or shouldn’t have it and so I questioned again why I had been called in for this appointment.  She said it wasn’t the doctors here that had asked for it, I said it was, and tried to explain about seeing the GP.  She rolled her eyes and stood up, asking if I wanted to have the jab or not.

She was quite aggressive.  I said to her “Look, I’m not sure why, but I feel like you’re being a bit weird with me and I am just trying to ask what the confusion is.”

“I am not being weird!” she said loudly.  She was actually being aggressive, but I didn’t want to use the word ‘aggressive’.  She then took the cap off the needle and stood over me, saying “are you having this or not”.  I looked away and said “fine”.

She then span round and walked out, holding the needle.  I was a bit shaken and so stood up and put my coat back on, I didn’t want this woman to inject me with anything!  Then a nurse came back in and asked if I was having the jab.  I explained that the other woman had been quite aggressive and I was just trying to understand what the problem was and whether I was supposed to be having the flu jab or not.  She was friendlier and said that the other woman was a healthcare assistant and trained to just read the basic instructions on the screen.

sam cleasby blogger

I decided to have the shot and took off my coat.  She gave the needle and it was over.  I started to cry and was embarrassed so said “Look, Im sorry if I am being over sensitive”, she said that she would speak to the assistant about it all.  I was really crying as I left the room.  Big snot bubble weeping.

I stood in the reception in floods of tears.  I know I am being over sensitive, I know that usually I wouldn’t be so upset by this, but I am in a delicate place right now, I am just out of hospital and preparing for major surgery and this did bother me.  I felt really silly to be honest that I was so upset but you know that damn straw that breaks the camel’s back? Well this was mine today.

Perhaps this woman was having a bad day, maybe she didn’t know how to deal with the situation, but today really sucked and I walked out of there feeling upset, embarrassed and unsure of whether I should have even had the jab!  Surely part of being a healthcare assistant means dealing with people who may be in sensitive or emotional states.  I obviously annoyed her by questioning why I had been called in but she didn’t once speak kindly or apologise.  She was mean and aggressive and really needs to consider how her actions affect the very people she is meant to be helping.

The NHS recommends this;

The injected flu vaccine is offered free of charge on the NHS to anyone with a serious long-term health condition. That includes these types of illnesses:

This list of conditions isn’t definitive. It’s always an issue of clinical judgement.

Your GP can assess you individually to take into account the risk of flu exacerbating any underlying illness you may have, as well as your risk of serious illness from flu itself.  The vaccine should always be offered in such cases, even if you are not technically in one of the risk groups above.

Don’t be put off by my experience though, if you think you should be having the flu jab, get in touch with your GP.

Sam x

Why aren’t doctors diagnosing IBD?

A few months after the birth of my second child, I began to notice blood in the toilet after I had opened by bowels, I ignored it for a while and then found I was going to the loo more and more.  One morning I woke to a lot of blood and mucus in my pants, I ran to the toilet and it was like a massacre! I went to A&E convinced that something terrible was happening, I honestly thought I was dying.  Doctors really brushed me off, suggesting I had piles and with an irritated tone told me that this was neither an accident nor an emergency and that I should see my GP.

I left shame faced and embarrassed, visited the GP who agreed that it was “just piles” and told me to use over the counter treatments.  The next day I collapsed at home.  I was taken in an ambulance to hospital where after admitting me and doing some tests, they diagnosed me with Ulcerative Colitis.

Around 300,000 people in the UK suffer from Crohn’s or Ulcerative Colitis and figures suggest the disease is on the increase. According to the Health and Social Care Information Centre, the number of 16- to 29-year-olds receiving hospital treatment for the condition has risen 300% in the past 10 years, to almost 20,000.

So why is it that doctors are struggling to diagnose IBD?

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I suppose GP’s and doctors see a lot of abdo pain and diarrhoea and they can’t assume it is always down to Inflammatory Bowel Disease.  IBS (Irritable Bowel Syndrome) is very common with some stats suggesting 15-25% of the population having some symptoms, this along with stomach bugs, food poisoning and problems like haemorrhoids could be throwing them off course, but it is the patient that suffers when they don’t get diagnosed quickly.  It is a problem I hear a lot, many people get in touch and tell me that they were very ill before they got the correct diagnosis.

The difficulty also lies in the embarrassment factor, people don’t like to see their doctors when it comes to matters of the bum, especially if that bum has diarrhoea, incontinence, blood and mucus loss.  It takes a lot to speak out about these problems and then if you either aren’t believed or are misdiagnosed then it takes courage to go back and ask for a second opinion!

Treatment for IBD sometimes requires a trial and error approach, depending on the severity of the flare up and how the patient responds, it can take some time to get the balance of medication right.  For 20% of Colitis patients and 60-75% of Crohns patients, surgery will become necessary and sometimes when either symptoms have been ignored or the patient has been misdiagnosed, the disease has progressed so far by the time of diagnosis that surgery is the only option.

That is why I work hard to #StopPooBeingTaboo to ensure that people are aware of the symptoms and have the courage and strength to speak out and get the best treatment for them as soon as possible.  When I was diagnosed, I had never heard of Ulcerative Colitis and it was an absolute shock.  If I had known more then perhaps I would have spoken out sooner and been more confident in asking for a second or third opinion when my condition was brushed off twice!

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I truly believe that the more we all speak out, the easier we make it for those who follow in our path.  Believe it or not, I do feel embarrassed sometimes when I tell you all about my incontinence accidents, or when I explain in detail about my surgeries! I do feel that hot faced shame when I think about everyone reading my words, but I do it to make a difference.  I wish I could have read the truth from someone else when I was diagnosed and so I hope that some good can come from my illness.

Crohns and Colitis UK are a national charity who offer tons of support and advice, if you have been diagnosed they should be a port of call to educate yourself and for any support you need.  They say “IBD symptoms vary from person to person – and usually over time. IBD is a chronic (long term) disease and if you have IBD you will probably have periods of good health (remission) and then relapses or ‘flare-ups’ when the symptoms get worse.

The main symptoms are:

  • abdominal pain
  • diarrhoea (sometimes mixed with blood, especially in Ulcerative Colitis)
  • tiredness and fatigue
  • loss of appetite
  • weight loss
  • abscesses and fistulas (in Crohn’s)
  • swollen joints, mouth ulcers and eye problems”

If you are having any of these symptoms and are concerned, you should see your GP.  If you are have a few of these symptoms and not being heard, then ask for a send opinion, print out info from CCUK and take control of your own health.

Doctors are only human and are not infallible, this isn’t about slating them but about accepting that perhaps diagnosis rates aren’t as good as they can be and so as patients we must be our own advocates, make sure we are informed, educated and brave enough to speak out.

 

Sam x

I’m (sheepishly) back

Hello you lovely lot.

Firstly thank you all so much for all the wonderful messages I received after my last post (Going Dark), it means so much to know that there are so many people thinking of me.  I felt a little embarrassed after hitting send, I worried that I came across mardy and miserable.  But I felt mardy and miserable at the time, so it did the job!

I’m not really feeling much better, I am thoroughly exhausted and still having the aching joints, dry eyes and skin.  The blood tests results didn’t show any remarkable inflammation markers and the Rheumatoid Arthritis test came back negative which is great news as I was really unhappy at the thought of more steroids and a RA diagnosis might have pushed me too far!  I’m having some more tests to check my iron stores, Vit B 12 and Vit D levels as well as thyroid tests and coeliac disease tests.

Someone suggested that perhaps the exhaustion was just part and parcel of life now and the joint pain could be due to all the steroids I’ve had to take in my life.  I know fatigue can play a huge role in the life of IBD patients and this makes me sad.

Emotionally, I suppose I’m not quite right.  I feel ever so sad and quite anxious.  I don’t know how to react to these feelings, people ask me how I’m doing and my instinct is to say ‘fine’.  I smile, I laugh, I join in.  But inside I am struggling.  I don’t really know what else I can say.  I’m trying to get back to business as usual.

Anyway, I just wanted to update you all and thank you for your kindness over the past week.

 

Sam xxx

Hospital check up

I had my four week check at the hospital yesterday with my awesome surgeon Mr Brown. Everything is looking good!

At some point I need to learn when it’s not ok to make inappropriate comments though. He needed to *ahem* examine me and so a nurse was present. She was asking me to assume the usual lay on you left side, knees up position when I said “yep I’ve been here before!”
“Oh” she replied sympathetically “have you had problems and had to come in after surgery?”
“Nah I’ve just had years of this so I’m used to literally being in this position”

Anyway, Mr Brown was happy that everything seemed ok with my pouch. But when we discussed my bowel habits (actually is it still correct to say bowel habits? You know what with me missing my large bowel…) he wasn’t happy with the amount of times I’m going.

It’s currently around 15 times a day, it’s very sudden and urgent and I’m having continence issues. I’m having to wear pads to deal with that and it makes me feel like absolute shit (excuse the pun) My confidence is very low and I feel embarrassed and really fucking sad about it.

Anyhoooo Mr Brown asked how much loperamide I was taking, the answer is I’m not because no one told me I should be or prescribed anything. He wasn’t happy about that and said I should have been taking it. So he prescribed that and was hopeful that it would solve a lot of the issues I’m having, which would be AMAZING!

He then asked if I knew someone who runs a certain shop in Sheffield, I said I didn’t think so but that I did run this blog so perhaps they had read something here. He said they had told him that and so he’d better do a good job incase I wrote anything mean about him. I assured him I had only put lovely things about him!

It was a bit weird to know people are talking about this place and that it’s got back to my surgeon!! But it’s all good and I can hand on heart say, without any persuasion from him, that Mr Brown has been fantastic from the beginning. He always comes across really caring and like you are important, I’ve never felt like just a name on a sheet and his care has been amazing.

Going from 8 years at Rotherham hospital to asking to be moved to Sheffield my care had improved so much. Both the Hallamshire and Northern General (with the exception of bitch nurse from last year!) have been awesome and I can’t thank them enough.

You know you have a good doctor when both nurses and other patients have nothing but good words to say about them. When I speak to other IBD patients in Sheffield, everyone gushes about him and one nurse in hospital said “Ohhh he’s like a fine wine, he’s just getting better with age!”

So Mr Brown, if you happen across my little blog (because let’s face it, most people would DEFINITELY google themselves if they heard they’d been blogged about!!) you are doing an awesome job and I thank you from the bottom (fnarrr!) of my heart for your care over the last year.

I have to say loperamide isn’t the instant cure I was (stupidly) hoping for, it made me feel quite queasy last night and there was no impact on the amount of times I’m going to the loo. But obviously it’s something that’s going to take time to get in my system.

I had a pint of Orange juice yesterday as I was craving for it but it was not good. At least I’m assuming it was the juice! It passed thru my system in about an hour and left me on the loo about 10 times in an hour. OJ is now on my pouch kill list…

But I have to keep reminding myself that it’s early days. I’ll keep plodding on and I’m sure things will get better soon.

Love Sam x