It has already been six weeks since I was last in clinic to see my consultant.
What’s happened since then?
- My colonoscopy has been performed and the outcome known by medical and surgical teams at Good Hope as well as the specialist consultant in Nottingham.
- I have finished up my course of steroids.
- I’ve been having considerable pain when eating and whilst moving my bowels. This has now resulted in bloating and considerably more fatigue.
I went into clinic wanting to know why my MRI from October 2015 and the colonoscopy from last month didn’t quite match up. I was under the impression the reason for Vedolizumab from October onwards was because my disease was active in all the same areas as noted in the MRI results.
It turns out, no. My MRI did show active disease but it was surrounding my ileum. The scan interestingly showed “the bowel fistulation demonstrated in 2014 ha[d] gone, which implies [I] have had a partial response at least to Methotrexate.”
Kudos to my consultant and his wrath of treatment plans in the past eighteen months. My scope was done for two reasons; 1) check the rectum for disease and 2) clarify my disease stage and location. The scope agreed with my MRI.
Good, two test results confirming where I am at. Excellent.
Having said that, he did explain – as he has done on almost every other appointment for six months – he has now exhausted all medical avenues. I am to face surgery. Something I knew all too well having already met my surgeon in January and will again next week. But he now specified that this is the right time to have surgery. And a limited bowel resection is best for me now.
- I’m medication free. Most importantly, I am STEROID FREE. Being free from Prednisone helps me tremendously. Steroids have a tendency to affect the bowel wall and lining, disrupting the progress of post op recovery. So as painful as my abdomen gets, I must only take painkillers.
- I’ve had a good eight weeks already of rest and low stress. Admittedly, its not been stress free – ESA application, financial worries of being unemployed, the steroid withdrawal and waiting for surgery to be confirmed – but I am rested. I haven’t caused myself any more damage and I am at optimum health to survive and recover from a major abdominal surgery right now.
- The waiting time isn’t too bad. The height of IBD related admissions and emergency surgeries has come and gone. I just have the upcoming Junior Doctors strikes to content with…
We did discuss surgery, in the limited capacity my consultant knows about. As it stands, resection gives the best recovery. It is almost always done laparoscopically, recovering time is about 8 weeks and it gives the best length between surgeries. He said following this type of surgery, I could be looking at 5-10 good years of remission, providing I heal well and tolerate the new drugs well.
Medication after surgery would be low dose; looking at Azathioprine with Allopurinol first as it is lowest for toxicity for my blood. Failing that, Methotrexate which we know I tolerate well and can manage on long term. Another possibility is antibiotics straight after surgery for three months. It would Metronidazole to boot, a drug I haven’t had a brilliant interaction with in the past. But it is positive news! It means surgery can be good and provide me with the means to help me get back to life. And that is my ultimate goal. As much as the waiting around and wondering what is going to happen sucks for me at the moment; I have to think of the long term goal of this. Surgery is a small part of the big plan for me. And I am happy to finally be on that road.
I feel as if I am finally ready for it too.
Sounds super cheesy and not at all as sarcastic as I am known to be, but it feels as if its all clicking into place. I was gutted and heartbroken when I lost my job. And I was so frustrated when my colonoscopy didn’t highlight my colon as a concern. But I know its all just meant to be. I’ve made my peace with it.
Now! Lets see what that surgical appointment on Monday has to say…