Charlotte Guinea talks about her experiences with this ‘invisible disease’

How were you diagnosed with Ulcerative Colitis, and what were your symptoms?

I was on a college trip in the US during March 2008 when I began to experience crippling stomach pains and regular trips to the bathroom. At the time I just thought I had an upset stomach from the jet lag until near the end of the trip when I began passing large amounts of mucus and blood, which was when I realised that it could be something more sinister than an ‘upset stomach’.

I arrived back home over a week later and told my Mum. At first she panicked and told me that I needed to go to the GP urgently. The GP saw me within a week and assumed from my symptoms that I was suffering from some sort of inflammatory bowel disease. She put me on a drug called Asacol to help with the inflammation and bleeding while I waited for my referral to the local hospital.

The consultant ordered many tests including a full blood count, abdominal x-ray and a semi-flexology and a ‘colonoscopy’, which is where they insert a flexible tube into your bottom to look at your intestines (it isn’t glamorous).

My results confirmed that I had ulcerative colitis, which was eventually formally diagnosed in November 2008. I had recently turned 17 years old.

What have you been told about your prognosis?

I am now 26 years old and I have had a temporary ileostomy bag  for a few years. I had my large intestine and appendix removed due to a rupturing colon in March 2013, I have had over 10 surgeries, and I have been on many chemotherapy, immunosuppressants and steroid tablets throughout the last 9 years to try and aid my ulcerative colitis. I will be having my ileostomy made permanent in the future - I have tried to have my bag reversed and a j-pouch formed, but my ulcerative colitis soon became ‘Pouchitis’, which is inflammation of the pouch which caused me to visit the bathroom many times a day.

I will eventually have more bowel taken away along with my rectum to live with a permanent ileostomy because it gives me the best quality of life. I do not see life with a bag as a misfortunate thing, I feel that it has been life-saving and life-changing in a positive way.

How did you cope?

I have coped with my ulcerative colitis by discussing it with family and friends. I didn’t talk about my illness until I was given my ileostomy as I was young and embarrassed. I very much relied on Crohn’s & Colitis UK’s Facebook forum in my early diagnosis days and as time has gone on I have been very involved with the charity as I have wanted to give back and help others who might be feeling isolated due to the disease. My mission and tag line is to ‘break the taboo on poo’, as everyone has to go to the bathroom and we should talk about our bowel habits if we notice changes. Overall my coping method has been putting my emotions into helping others going through the same thing.

What treatment have you had?

  • Aminosalicylates e.g. Asacol, pentasa
  • Immunosuppressants e.g. Azathioprine
  • Corticosteroids e.g. prednisolone (high dosages)
  • Chemotherapy drug Methotrexate

Unfortunately, infliximab and biologic drugs were not available for me to try during 2011-2013 as they weren’t advanced like they now today and in my case they probably wouldn’t have worked.

Have you been given any information on clinical trials for new ulcerative colitis therapies and would you take part?
I am not aware of any new drugs or therapies out there now but I am always willing to take part and try out new medication to stop me from having to have more surgery. A huge misconception is that once you have surgery you are ‘cured’ and unfortunately in my case I still have active disease and suffer with symptoms.

What do you find the most difficult aspect of the condition?

I find that the most difficult aspect of the condition is the daily fatigue of feeling constantly exhausted and how that becomes a strange stigma especially when people around you and close to you don’t understand how exhausted you feel. There are days when just taking a shower is exhausting and uses up your energy.

There is also the difficulty of living with an ‘invisible illness’ and growing up from such a young age with a lot of stigma and criticism, which I am now pleased to say isn’t as common as it was 10 years ago as the public are beginning to understand such conditions better thanks to the likes of social media campaigns. Although it is still an area where more awareness is needed.

Has it had a significant impact on your lifestyle?

I had to leave university due to the disease as I couldn’t physically keep up with everyone else my age with the studying and partying. I got to a point where I had permanent brain fog from all the medication. I have had to be signed off work several times due to surgeries or severe flare ups from the condition. Overall it does affect my lifestyle but I don’t let it – I make sure I rest when I need to rest and I now listen to and respect my body which I probably didn’t do much as a young adult and teenager as I constantly wanted to be doing the same things as my peers. I have worked full-time for the last five years – it isn’t easy going but I pressure myself into having a happy work-life balance.

Do you think the depth and quality of information offered to patients is adequate?

I cannot comment on what may or may not be given to a newly diagnosed patient today but 10 years ago I was given a folder with some sheets in which were by Crohn’s and Colitis UK and I found out about support groups and their patient information sheets which were excellent.

I didn’t feel that hospitals at the time were doing enough for young patients like myself in supporting us with our diagnosis – it was very hush, hush.

What message would you give patients newly diagnosed with the condition?
Do not feel embarrassed because you are ‘different’ – there are many of us living with Ulcerative Colitis or Crohn’s disease, and you can reach out to others in the same situation through social media forums. You soon begin to realise that you aren’t alone. As they say, ‘Your illness does not define you as a person, your strength and courage do’.

What is your greatest hope/fear for the future?

I don’t have any personal fears anymore – everything that could go wrong has gone wrong. But I wouldn’t be where I am now if I hadn’t tried certain treatments and surgeries; it has to be onward and upward from here on out.

My greatest hope for the future is that we find a cure and we break the taboo on this invisible illness and as a nation we openly speak about our bowels without there being a huge taboo, because at the end of the day it is life and death (and in my case it was a ‘bag or a box’).