Options and Preferences with Treatments – PoPSTER

So a couple of months ago I wrote a post based on some questions from the PoPSTER study into steroid resistant Ulcerative Colitis. Here is the next instalment on treatment types I have had and then looking at the options and preferences I was given or have. This was interesting for me as most of the treatments I was given I was classed as a child so I have the added intrigue that is hindsight added into my answers.

Please can you tell me a bit about the treatment you have had for UC?

I had tried a range of medications over the years such as:

  • mesalazine
  • azathioprine
  • infliximab
  • methotrexate
  • steroids
  • low residue diet
  • low FODMAP diet
  • NG feeds
  • syrup of figs
  • fibrogel
  • senna
  • movicol
  • kleenprep
  • piccolax
  • enemas
  • steroid foam enema
  • sulfasalazine suppositories
  • iron infusions
  • blood transfusions

The laxative side of things was because I had chronic constipation and as it would pass through my large bowel it would just aggravate the ulcers as they began to heal and cause me excruciating pain plus excessive bleeding.

What treatment options did you discuss and what did you think of the options?

Being ill from the age of 10 and up the treatment options weren’t really discussed with me at least and were more just dished out I was just told they were trying xyz. I felt a lot of my treatments were out of my control but ultimately I just wanted to be well again and be another normal teenager.

Did you feel fully informed about your options? E.G risks/benefits and why?

When I started azathioprine for example I knew I needed regular blood tests (and have the scars to prove it!) and that there was a risk to my bones or my white blood cells; but I didn’t know about the risk with being in the sun. The infliximab was probably the first I was actually informed about and was given a print off that scared my parents to death more than me with the ‘catch a cold and you could die’ etc. However I only had one dose of that as it caused my joints to lock up and I was unable to move for a week. So then I moved on to the methotrexate which I didn’t care or want to know the risks as it was as of 2007 my last hope.

Did you feel like you had enough support when considering treatment options?

My last GI Dr Hancock tried really hard to ensure I was fully informed about my treatments and distraction techniques. The distraction techniques were because when you are in chronic pain your brain can suddenly go ‘ha ha nope you can’t feel well here have a dose of cramps’. It can also do this after several surgeries or so the pain team said. But in all honesty I would have just ran with anything he suggested because he was gorgeous!

Did you look for alternatives to the treatments your doctors discussed with you?

I didn’t look for alternatives per se as I smoked and when I was 18 there was a study I had read about the links between smoking and pain relief in UC patients. Whether it worked or not it became a psychological crutch I used whenever I was in pain. Obviously the cons outweighed the pros health wise with smoking. I also drank a lot much to my GP’s dismay as a couple of times I had damaged my liver and learnt I only had to cut back to reverse the damage. These not very helpful vices were my alternative treatments in lieu of actual other options. In fact when I was 14 my paediatric consultant told me to smoke weed for the pain and possible constipation relief; which still to an extent shocks me looking back but with all the information on cannabis helping a wide variety of medical conditions he was ahead of his time!

How did you decide on what treatments to have?

I didn’t really have a logical thought process it was just a case of have I tried it before? no? Well then let’s give it a shot. Or I was of an age where they took my treatments into their own hands.

What about Steroids? How did you know when they had stopped working?

When it came to the steroids I had a very psychosomatic relationship with them. They stopped working quite early on but I tricked myself that they did because of the way they made me feel emotionally. I used to beg and cry to my GI and GP for them on a regular basis but because they also knew how atrocious I was when it came to actually taking medication I was only ever prescribed a week at a time.

What things about the treatments helped you make a decision on what treatment to have?

As most of my treatments were picked for me I never really thought about what would make me pick one treatment over another. But in hindsight I would have liked to research the success rates, risk factors and side effects but the availability on information wasn’t available then as it is now.

What is the most important thing to you when you chose a treatment?

Hope. That it gave me even just a shred of hope that I would go into remission was enough and why I held out before choosing the surgical route. I was told surgery was the cure for UC and if you know anything about my story of getting my ileostomy you know that just isn’t true.

How have your preferences for different treatments changed over time?

I would frequently tell medical staff that I was a shocking patient that did nothing to help myself because I would be fairly consistent with taking medication for three weeks then it would all fall apart. I just would forget to take them even when using doset boxes – although they at least allowed me to see how many doses I forgot! I generally remembered to attend infusion treatments so having something scheduled would have probably been more up my street. I despised injecting myself and even when my ex mother in law trained to do it we struggled to remember which was pretty bad since it was methotrexate! When I was offered steroids or antibiotics for the Pouchitis I literally took the short course of anitbiotics and went with the surgery as I couldn’t face going back on steroids again.

So hopefully this recap has been interesting or of some use to someone! How has your age or your willingness to research affected your treatment choices?

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