Life with Steroid Resistant Ulcerative Colitis (PoPSTER)

So recently I was asked along with other Ulcerative Colitis warriors as we most definitely are warriors to provide an insider perspective on the PoPSTER study based out of Sheffield University. The study will be branched out further to other ulcerative colitis patients who have found their disease to be resistant to steroids. I thought it might be interesting to share the answers I wrote for the questions so I could offer more input than just looking at the questions. This is broken down into 4 main sections with subsections so it will more than likely be multiple posts.

What was your personal experience with Ulcerative Colitis?

I started to get sick around the age of 10 but wasn’t officially diagnosed until my early teens. For years it was passed off as Irritable Bowel Syndrome as I had chronic constipation. I tried many different medications over the years but nothing really seemed to show signs of remission. How much of the constipation taking the top layer of the ulcers as it passed through my bowel and then became inflamed again prevented my body from going into remission I don’t know (heck it might not even be plausible but I’m not a Dr!) Whilst on the prednisolone I developed an eating disorder to try and combat the weight gain and just looked even sicker – although at the time all I saw was what the Body Dysmorphia Disorder told me I saw.

Even though the staff at my local hospital did everything they could to help me they didn’t have the paediatric Inflammatory Bowel Disease knowledge there is out there now over 20 years later! So I was sent to Leeds General Infirmary for 10 days for scopes, scans, reviews and new medications. It is also the first time surgery was mentioned but at the age of 14 and only three medications in I felt it was too soon plus I was so young I didn’t know what was going on.

After another 7 years of admissions I finally accepted having a J pouch which I was told didn’t need the stoma to heal (that is my biggest medical regret) 4 years after that my pouch began to fail and really flared whilst I was pregnant with Ra-Ra but because I was only under the care of the maternity departments nobody knew what it was other than dum dum dum scar tissue from previous surgeries. When I was 28 I had decided when I was offered more steroids that my only option was to have it all removed and have a permanent ileostomy formed. This to me meant the ulcerative colitis had nowhere to return too either which was the ideal situation.

How has this affected you?

This affected me far more with the social and academic aspects of my life than anything else and I’m sure I can’t be alone with feeling that. I feel like I missed out on the different situations in life where you learn the skills to interact with people in a socially acceptable way; this was magnified in myself with having Borderline Personality Disorder. I often feel like I am quite immature and trust far too easily. The trust comes from being surrounded by adults who were literally there to try and alleviate my suffering and with that I often find myself being too open with people because the medical staff needed transparency and I tend to be more open with people than they tend to like. Which if I’m honest I often think that is more their problem than mine because they can sometimes lack empathy. I have a deep intense hatred of the way I look and the sole cause of that is the steroids I took. They obviously made me gain weight which when in high school meant I got bullied and then I developed an eating disorder which I still battle with to this day as I also developed Body Dysmorphic Disorder.

Surprisingly I do have some positives that have come out from living with Ulcerative Colitis for such a long time and through my formative years and that is the fact I am very empathetic and sympathetic, I try not to judge people before I have gotten to know them and I am more aware of when my body is telling me to rest!

Did you look for more information about it after you were diagnosed?

I did try to look for information but in the late 90’s and early 00’s there wasn’t much on the internet like that although I did manage to find an American forum that I spoke to people about the disease although they were all adults but we still had the same disease. There was very little based in the UK at the time and if there was it was very well publicised or in cities I didn’t have access too. It is a positive of social media that there are so many groups and blogs nowadays that can shed some light on almost every aspect of inflammatory bowel disease and allow people to feel less alone and isolated.

How do you think it will affect you in the future?

Well it has affected me in the biggest way it could by leaving me with a permanent ileostomy and although my quality of life has improved monumentally and I chose to have my stoma my life will never be the same. I will always have what if’s with regards to my education and what will be’s with future fitness as the steroids haven’t been kind to my Hypermobility and family life. Saying that hopefully I will be able to keep advocating for those going for surgery, being sick at a young age and pregnancy; even if it is just through this blog.

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