Life Lately | Early September Madness

Oh hey, hi, hello.

It seems my ‘updates’ have been falling under my month review for the last couple months, but this is something else; a significant update.

I had a routine surgical check up with my surgeon in late August which we had planned in my care as just a way to better monitor my wound situation. When I last spoke, my wound was no longer being packed or dressed at all, it was much smaller than I could feel and it was doing well. But then I had a rough week or so with discharge and discomfort so this appointment was well timed.

Upon examination, the wound was sore and particular areas which were touched made me recoil. He couldn’t really guarantee that the area wasn’t developing an sinus tract so he booked me in for another EUA for the middle of September. That came with its own issues – needing time off work, impact on my recovery so far, it needing dressing daily again, and basically going back two steps. But a healed wound is what I wanted more than that, and a EUA was big step towards that goal. So I consented and set about preparing myself; including notifying my employer and moving some of my schedule around to make it as easy and as smooth as possible.

We had a small consult pencilled in for a week prior to the procedure date and that was a couple days ago. It turned out that despite the increased discomfort I’d had over the previous week and weekend, was most likely muscle spasms and my wound was much smaller again, and the EUA was cancelled. YAY for no more surgery eh?

The same day as this consult, I had my routine GI clinic appointment. Turns out that my previous consultant has left and I have a new one – good to know as I sit down to what I assumed was to be a Vedolizumab funding review appointment, as per the routine of last September – but it was not.

It has been a while since I’ve seen any GI doctor for my IBD in a clinic setting. I’ve always been more comfortable at Peterborough having the CNS – aka IBD nurses – take on my clinical care. I expect to see a consultant once a year when my medication is due for funding renewal, like it was this month.

I did not expect to come away from that appointment feeling unsure and really confused with my care. I learnt that when my perianal wound heals completely, I am likely to have my Vedolizumab discontinued as I am in a good clinical picture – Calprotectin was 7.5 and CRP was 13. Even my LFTs were coming down! So we are finally heading into a good space of being stable for longer than six weeks. I explained that despite my bi-monthly infusion, I had increased fatigue and joint pain – so bad that I can’t sleep and it hurts to walk up and down stairs. This was sort of dismissed at that point. I also gave mention to the hardness behind my stoma – likely early blockages or twisted bowel – and he scolded me for not mentioning this to my SCN or the surgeon. He wanted to go ahead and give an explanation as to why Vedolziumab would be discontinued.

My previous introductions onto Vedolizumab were when I was either flaring or post op from my stoma surgery. The likelihood is that I had Crohns in my stump and that is why they have continued my Vedolizumab. It was never mentioned at all previously that was the reasoning behind keeping me on it, nor was it explained when I consented to my Protectomy that this would happen.

I asked what about my small bowel – as I know I have involvement there, see admission in Good Hope in August 2017 – but my last MRI shows very mild activity there, which has now been controlled well by Vedolizumab, resulting in a Calprotectin of 7.5. He mentioned that this scan did reveal a stricture in my duodenum and that this could be managed without the need for Vedolizumab.

Imagine my face.

Imagine the shock or confusion I revealed when this was told to me. I tried my best to ask more questions and find out their own reasoning as to why this was never said before or why it was now my option, but instead I got given a rambled explanation to possibly try antibiotic treatment for 3 months once Vedolizumab has ended to keep my gut balanced. As soon as he said ‘Metronidazole‘ I shook my head and just wanted to get out there. He reasoned that if I could manage taking them for a week, I could do a month and then the next two months would be the same. No acknowledge that this would be 3 times a day when this antibiotic will flush fluid from my system which is dangerous with a stoma, especially an ileostomy.

I left the appointment with the intent of another appointment in three months to assess my wound then and take treatment options from there. I had my routine pre infusions bloods done and I was just shook at the outcome of that appointment.

Since, I’ve been able to look at it with new eyes – yes, what he is suggesting is logical and I understand where this information is coming from. But I have concerns –What if my IBD flares suddenly after coming off Vedolizumab? [It has done previously, within six week or so but I did have my colon and rectum so…] What if I choose the antibiotics and can not tolerate them? Do we have another treatment plan? Do we have a flare up plan? What are we doing with my duodenum stricture? [he said nothing about how this would present or be resolved] Are we basing a current decision on a scan from OVER TWELVE MONTHS AGO? Can we not repeat this? Does ONE calprotectin test indicate everything when I have a stoma? 

As you can imagine, it’s been abit of a challenging week. I’ve been busy with another aspect of my health so juggling that and my other commitments has been hard. What I am going to do is have a very frank conversation with my IBD nurses and see if I get a new MRI done and possible a scope through my stoma – an ileoscopy – to ensure that this is the right path forward for me. Plus, I want a flare up plan in place that can be activated if I do require medication in the future.

Until next time,