It’s always abit weird to see how another hospital organise their clinics. This was our second visit to see Dr Moran – head of Digestive Disorders, specialising in clinical trials for IBD – to discuss my case. Since we last came in January, I’ve had two surgeries, three admissions, two MRI and a CT scan and a colonoscopy. Explaining the last six months was going to be fun.
I took him through the last couple of weeks and explained where Good Hope had got me to – a failed right hemicolectomy in May which resulted in a reoccurrence of my Crohn’s disease and the removal of my colon and the creating of my permanent ileostomy. My reoccurrence came from a combination of not continuing with Vedolizumab and the stress of surgery on my digestive system. I never really recovered from my first surgery, thus explaining all my subsequent issues and admissions.
I was careful to stress how much I appreciated him looking at my case and taking an interest. The options from our first meeting were no longer valid. My ileostomy rules me out for taking part in any clinical trial; meaning that those doing the research would be unable to accurately measure my BMs seen as I don’t do that anymore. However, I could still qualify for the new biological drug – Ustekinumab. I explained that I was restarting Vedolizumab at the end of the month. This was to help me achieve remission; our – my IBD team and I – new primary goal. He stressed that the option was still there, if Vedo failed to work or even start to work, I had an open appointment to come back in and discuss starting Ustekinumab. He would discharge me from his clinic but write to Dr Andrew to make sure I have regular checks of my calprotectin from my ileostomy output and an annual MRI to track my disease.
In theory, I understand and appreciate all of what he said and suggested. He did say he hoped this surgery was going to “curative” – as in removing the colon would keep my disease in check, but as I had colonic Crohn’s and have small bowel Crohn’s, he is cautious. I hope it is too. Dealing with a stoma on a daily basis for the rest of my days is enough at the moment. I couldn’t deal with more problems happening with my disease at this point. In a couple months, a year, or even longer into the future; maybe I will be better equipped to deal. But right now; my surgical scar and my actual stoma is enough. I also need to gain back all the weight I lost. I’m also battling mentally with the enormity of how my body has changed and is different to those ‘healthy people’ out there.
I was hoping to be discharged from his care but I didn’t leave feeling as positive as I had liked. His skepticism has lingered with me.