Voices of IBD (4) - Clare's Story.

Welcome to PART 4 of the Inflammatory Bowel Disease series, where we talk to people from all walks of life with this condition; to give everyone a platform to share their story, and help to raise awareness.

This week we talk to Clare about her battle with Indeterminate Colitis and Multiple Sclerosis.

What is your name and age?

Hi my name is Clare Mee, I am 50 years old and I live in Nottingham with my husband and Boxer dog, Cooper.

What is your occupation?

I am a Senior Optical Consultant. I was an Assistant Manager, but had to drop to a senior role after my surgery issues. I have been there for 24 years.

What form of IBD have you got?

Originally they said Crohn's Disease, but changed it to Indeterminate Colitis 10 years ago. I have also been diagnosed with early Multiple Sclerosis.

How old were you when you were diagnosed?

I was about 20 years old.

About the disease...

I started with pain in the lower right side of my abdomen and was being sick. I was admitted to hospital and started with diarrhoea. I had various tests, barium meal, enema, a sigmoidoscopy and eventually a colonoscopy.

I was very unwell but did recover from that flare. I went through my twenties and thirties with many flares and admissions and managed to avoid surgery at that time.

I was put onto Azathioprine which kept me in remission for 14 years. I was taken off that drug, and things went downhill from there. I started to flare and no medications would help. I became so ill I had an emergency total colectomy last year, and was in hospital for 3 months with complications. I had a proctectomy last November and now have a persistent perineal sinus that I am awaiting further surgery for.

What were your main symptoms that led to your diagnosis?

I had pain and bloody stool that was very loose or pure blood. I also lost weight.

How did you feel when you got diagnosed?

I was a little scared but wasn’t really told much about it at the time, so I was very fed up when I was always unwell with flares. I was scared of the tests, I had never been in hospital before so it was a worrying time. It took a while to decide if it was Crohn's or Colitis and they still are not absolutely sure.

What support did you get during and after your diagnosis?

None really back then. I was given the details of the Crohns and Colitis UK group, so I joined that and received some information and a newsletter. Other than that it was very poor, I am sure nowadays things are better.

Do you take medication , if so, what?

I have been on various. At first they gave me Prednisolone regularly, then Olsalazine. I went onto Azathioprine. The last flare before surgery I was on Mesalazine granules, but they didn’t help. Since surgery I am only on Loperamide to thicken my output.

What are your experiences with hospitals?

I found my Gastro team fine, but they still didn’t really know how ill we feel. I struggled to show them this. I felt they didn’t really believe how ill I was. I was treated well when I had the surgery. I find colorectal surgeons and their team much more sympathetic.

Have you had many stays in hospital, or colonoscopies? Do you have an IBD nurse?

Over the years I have had quite a few hospital stays. When I first went in, before diagnosis, I was there ten days at a time. About 3 times in 3 months until they settled my symptoms. I have also had quite a few colonoscopies, probably about  8-10, as they use them to monitor for cancer every three years.

I also had an IBD nurse from the beginning, which was good because you could ring straight through to them without seeing the GP for a referral.

What seems to affect your IBD the most? What triggers it?

Stress did trigger my flares, but other than that I cant say what else did. No food in particular caused  them.

Do you currently, or have in the past, struggled with mental health? If so, what?

After the diagnosis I started to suffer with anxiety, I had panic attacks regularly where I would be physically sick. I was put on anti-depressants and it settled. When I became very ill this last time, I had the anxiety back but also some depression, as I thought I was dying. They increased my medication and I am now having my second lot of counselling. I have some PTSD because of the trauma of the surgery and hospital stay. I was tube fed and I had rectal stump blow out which caused pelvic sepsis, so I can see why they say post traumatic stress.

Do you get support and medication for your mental health?

Sorry I appear to have answered that one previously. I have counselings and anti-depressants.

Do you feel like you get the right support?

I would like to say yes, but there are times when people forget that I am still suffering in many ways. Because I look OK, they assume I am OK. I don’t want lots of sympathy but I need to rest when I can without coming across as lazy.

What do you do to give yourself a break or relax?

I like to read or watch a good film. I also like to go out with my friends to the local.

What lifestyle/diet/changes have you made to cope with your IBD?

I tried to avoid fatty foods pasta (I used to bloat very badly) and I cut down on milk. Even though I was told it had nothing to do with flares, I had read that it could.

What advice would you give to someone who may think they are experiencing early signs?

Make sure you get checked out by the GP, and don’t take no for an answer. Find out as much as you can and make a list as things happen, it’s easy to forget.

What advice would you give to the friends and family of those with IBD?

Please support them, it is a very distressing disease and having to explain yourself is an added burden.  They may not look ill all the time, but can have other symptoms that may not be seen. If they feel they need a rest, please let them. Sometimes that can help a lot. As long as you also find out as much as possible so you can support to the fullest, that would mean a lot. They may need surgery at some point and this could be very scary, so don’t dismiss any fears they may have.

If there is one thing that keeps you motivated and focused through it all, what would that be?

I am not on my own, there are plenty of people who have this disease and have also had the surgery and it is up to us to educate people.

What is your favourite quote?

My favourite quote I happen to find on Google, I am not sure who wrote it originally but I think it sums up my life with IBD.

“You never know how strong you are until being strong is the only choice you have”.

Thank you Clare for sharing your story here on BecxBlogs. If you are affected by Crohn's or Colitis; please go to the Crohn's & Colitis UK website for further support and information.

You can find Clare on her blog that she made, named after her stoma. She made her stoma into a character to lighten the stigma around having one. 

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