The third instalment of the PoPSTER study questions is all about the choice that were available and/or given to me regarding my treatments. Don’t worry if you read the last instalment this one isn’t as long!!
Did you think there was enough choices to treat your Ulcerative Colitis?
I never really felt like there was an awful lit of choice when it came to available treatments. Especially when it came to immuno suppressants unlike today.
How did you feel about having a choice of treatments?
I was told pretty early on that it was incurable so all I really focused on was going into remission and staying there which didn’t happen for long or often. So having a choice or not didn’t really have an impact overall on my life with Ulcerative Colitis.
Were you involved in making the decision about your treatment?
Not really because a lot of the treatments available the choice to go on them was taken away as I was so young and they didn’t know how it would affect my still developing/growing adolescent body. I was only ever given brief overviews and I’m not sure really how much information my parents were given either.
What support did you want when considering treatment options?
I would have liked more support around decision making in my teens so as I was transferred to the adult teams I could make an informed choice. For instance asking about relevant information and not just following the advice given by the medical teams I was under. I had no control over the disease as it was and having the support to take control of the treatment options would have given me some much needed independence that all teenagers and young adults crave.
I found it very daunting going from SHO’s writing up notes from the Dr’s round so when I was less fatigued or spacey I could look back on; to just being expected to remember what was said and understand all the medical jargon that was being spouted out of mouths from people I didn’t know or trust.
Who did you involve in helping you make a decision?
So I didn’t really involve many people when it came to choosing the treatments when I was able too. I obviously included my parents but when they became panicky about the infliximab I decided they might always think the worst when it came to other stronger medications and as a parent now I can understand but as a teenager I thought they were being over protective. I actually included my ex boyfriend in a lot of my decisions as he saw me from a different perspective not just as a sick child but as a poorly adult. Don’t get me wrong he only was a sounding board but he enabled me to hear my thoughts out loud and would echo back the important bits which is exactly what 00Steve does and it is really helpful.