I always think it is great to gain different peoples stories with IBD – knowing it can affect different people different ways. It’s a great way of seeing the greater picture on how it can affect each person differently. Richard, author of GutlessDick, contacted me on a support group for those with IBD on social media wanting to collaborate. See my interview with Richard here. Here is a snapshot of the journey he has had so far…
Q1) Tell me about yourself. What’s your name, where do you come from and what do you do for a living?
I’m Richard, age 36. I’m originally from Peterborough but now live near Bristol. I’m a manager in children’s services for a local authority.
Q2) What were you diagnosed with and when?
I was diagnosed with ulcerative colitis in May 2005.
Q3) How long had you been suffering before you got your diagnosis?
I’d been diagnosed with IBS about a year before. Then I had about 3 months of rectal bleeding, finally went to he GP and as referred for a colonoscopy. The diagnosis came straight after that.
Q4) How did you feel when you were diagnosed? Had you heard about ulcerative colitis before?
Nope! I also didn’t get any information, so I thought that the suppositories I was given would clear it up! So I was blissfully ignorant of how serious it could be – and this was before there was so much information and support available online.
Q4) What treatments have you been on, and are you on any at the moment?
So right now I just take loperamide. I started off on mesalasine suppositories, then when I started my first big flare had prednisolone enemas for a few days before I was admitted to hospital. There I had IV steroids, cyclosporin – all of which failed so I had surgery. After I had my ileo-anal pouch formed I had infliximab and Humeria, and have also had methotrexate for arthritis.
Q5) When did you have your bowel surgery?
So I had my first surgery in August 2005 – so just 3 months after my diagnosis. It was an emergency sub-total colectomy which gave me an ileostomy.
Q6) How has having a stoma changed your life?
When I woke up from that first operation, even though I was pretty groggy and on lots of pain killers I felt somehow better. If the surgeons hadn’t been able to do that procedure I’d be dead, so that is what I’ve held on to when things have been tough – my stoma saved my life.
Q7) Is there anything you want to do but can’t due to your condition?
I do get fatigue sometimes, and whilst I’ve had an unhealed wound for the last two years that has slowed me down, there isn’t really anything I can’t do, or won’t be able to when the wound is healed.
Q8) Will you require any further surgery?
Hopefully not! I had my internal pouch, rectum and anus removed in January 2016. So unless any abscess or fistulas develop I should be all done now.
Q9) Do you believe we will have a cure?
Maybe one day – but right now we don’t even know the cause, so I think a cure is a long way off. There are new treatments coming along though which can only be a good thing.
Q10) Do you get involved in any support groups?
I coordinated my local Crohn’s & Colitis UK group for a year, and I’m a member of several online support groups. I think there is great support available online, but I do think you can’t beat meeting some other people with the condition and finding that you are not alone.
Q11) What is one piece of advice you’d give to someone who is newly diagnosed?
That everyone’s journey is unique. It is good to connect with others, but your journey will not be the same as anyone else.
Q12) What one thing would you like the world to know about IBD?
I think the most important thing is for people to realise it is an incurable chronic condition, with lots of symptoms. It is not just pain and toilet trips.
To follow Richards story, head over to his blog here!