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?

sam cleasby ulcerative colitis ibd ileostomy surgery

 

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

3 replies
  1. Jennie Carter
    Jennie Carter says:

    When I read the bit about the way you were made to feel in A&E, I was so bloody angry and upset for you. You must have been so scared anyway, and to be treated like that was inexcusable. xx

    Reply
  2. Suzanne Wheeler (Sue)
    Suzanne Wheeler (Sue) says:

    Hi Sam

    Its me again! This is exactly what happened to me which I will never get over how my GP treated me. Around 2004 – 2005 I was telling my GP I had a lot of bleeding coming from the back passage and I was worried it was cancer. She told me it was just a little pile and didn’t even examine me. I mentioned again to her for the second time but being frightened of having a colonoscopy I didn’t make too much of it. But I explained the discomfort and sometimes after visiting the loo I could hardly stand and over the years it just got worse although the bleeding slowed down the discomfort after using the loo was awful so I was buying more and more Loperimide and going to different chemists so I wouldn’t be questioned. My GP told me that if it was cancer I would be losing weight drastically and the stools would be more black which in my case I felt I was ok. Then in 2012 many years on I had the most dreadful constipation and abdominal pains. I live alone and was very frightened. I had 4 days laying in bed not being able to move and everytime I tried to go to the loo I was screaming with pain. I had a fever too and could not hold my head up. Eventually I after 4 days I managed to go and just cried. Then one day with all the TV advertising and feeling very depressed I told another GP I felt I had cancer. This GP took me seriously and asked if I had bleeding and I said yes, now and then but years ago was a lot more. She immediately referred me to a consultant and I had a sigmoidoscopy which found it hadn’t been a pile but it was a polyp in my rectum which had turned cancerous. It was in a place where I was told that I would have most of my rectum removed and would have to have a colostomy bag all my life. I was lucky as I had a operation where my surgeon was able to use a robot and saved my bottom and I awoke to an ileostomy bag which after 7 weeks he reversed but going to the toilet since hasn’t been easy and I panic and I swing from constipation which is painful to the opposite and I am scared now to leave my home and be to far away from the toilet. I was in a bad way and refused chemo which was strongly recommended but I have regular checks and CT scans. 3 and a half years on I am still terrified and I don’t think I can class myself as having IBD but it was negligence and I can’t forgive that GP for not listening to me as it ruined my life. If I had been referred to a consultant the polyp would have been removed easily and I would not be the way I am today. I have not left my home for days after pints of Movicol literally I am too scared and I have to cancel appointments and things I enjoy. To add insult to injury in 2013 I had a very small lump in my breast which was cancer. This was caught early and I am cured. The fear I cannot describe caused by the rectal cancer and how I was treated by that GP. I didn’t know anything about polyps in the bowel and rectum that turn cancerous.

    Reply
  3. Ariane
    Ariane says:

    Thank you for posting this! This is exactly why I’m pushing so hard to get a new workup – after pretty run of the mill IBS symptoms my entire life (since childhood), I started suddenly having excruciating rectal pain, bleeding, and mucus in early 2013. It took me 2 years to even get a gastro specialist appointment because I did not want to go back to my old doctor from 8 years ago, and when I did find someone to take me, he gave me the 3rd degree about why I wanted to see him. I haven’t been able to eat any fruit/veg/fibre for over a year, and have been doing a gluten challenge to get Celiac testing, and am now a week and a half from getting my scopes done FINALLY. Nervous, embarrassed, been made to feel crazy by nearly every medical professional I’ve seen… But I KNOW people (doctors) can make mistakes, and I have been brushed off far too many times with no adequate explanation for what’s going on – I know this is not just IBS or hemorrhoids anymore! Grateful for people like you who have the guts to write about all of this. <3

    Reply

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