Surgical Review – 12.12.16

This is my surgical review for both my surgeries I had done this year. I had my Right Hemicolectomy in May and my Subtotal Colectomy in August. The second surgery superseded the first by giving me my ileostomy.

I was sort of expecting to be on the way to being discharged at this appointment but I knew deep down that this probably wasn’t possible. It’s only been three months post-op and it seems whenever my surgery is discussed with me at the hospital, they added on additional weeks to my recovery because of already having Crohn’s disease. Apparently, this type of surgery would mean recovery in 4 months, but with my wonderful chronic illness I am looking at 6 months, maybe longer. Excellent!

Firstly we discussed the outcome from my appointment in Nottingham at the Queens Medical Centre in September. You can read about that appointment here. I explained how disheartened I felt leaving there because I was feeling so well since having my ileostomy. He stated that despite respecting other medical professionals, they were not there during the summer and had not had any input into my surgical options or given any opinions, so it wasn’t for them to butt in and question my medical care.

He was quite pleased at my surgical incision and how well it has been healing these past four months – thank goodness for glue instead of staples! – and how well I was coping with having the ileostomy. I explained to him that I had made my peace with needing to have an ostomy way back January when we first met and discussed all possible surgical options. So needing this ileostomy wasn’t a complete shock but more of a lifestyle change and a definite good choice.

What is concerning is how my blood work doesn’t seem to settling. I have been having my blood taken for my pre-Vedolizumab checks a couple days prior to an infusion. At my last appointment for my Vedolizumab I was told my bloods weren’t great but not a cause for concern. He looked over those particular bloods – especially my CRP, platelets and albumin – and concluded I needed some more testing done. This would be more bloods today, a faecal calprotein test and to schedule an MRI. One problem; it was going to have to be an in-depth Small Bowel Study and it needed to be done at another hospital for a top Gastro consultant to review. This would be probably likely to happen in the first couple weeks of 2017, with a follow up with himself in 3 months and my own consultant in January.

Why all this additional testing so soon after surgery?

Well;

1. I was very unwell when they removed my colon and maybe my small bowel was hiding some low levels of inflammation.
2. The Vedolizumab hasn’t kicked in yet and maybe it won’t.
3. My rectal stump is inflamed – doubtful – but worth checking.

Basically, it feels like everyone who was involved in the build-up to my subtotal colectomy is showing signs of guilt and double-double checking their work before letting me get discharged.

I’ve had several conversations in the past couple months with my IBD nurse and my consultant – who were both on annual leave when I came in for my subtotal colectomy admission – as they’ve expressed guilt at the fact that my disease should have been better managed and maybe I wouldn’t have lost my colon. I also felt this same way today, when he said he wanted to make sure everything was okay before progressing to the next step. Which is? Discharging me? Or something else? That whole prospect scares me, it has multiple connotations and we won’t know more until my bloods, calprotein test and my MRI are completed. So, I sit here and wait.

The good part of this appointment is that my surgeon has some pull with other departments and other consultants to get me seen, so my MRI might be quicker than I anticipate. It also means it might get reported on sooner meaning I know what is going on.

It has also meant that I’ve got to slow down on the ‘going back to work’ front. He advised that whilst exercising would be good for my body and my mental health, returning to employment is something I should delay whilst these tests are being completeld. Just so I am not stressing myself out more, adding pressure to my daily routine or agrevating my still quite new ileostomy. But he did end my appointment by letting me know he is proud of how well I have coped and how well I am managing this stoma; he has had a lot of positive feedback from both my IBD nurse and stoma nurse these last couple months. This makes me feel all squishy inside and makes me want to keep pushing on through all of this.

I know that all of 2016 has happened the way it was meant to happen. It is no ones fault and no one is to blame.

Edit, update: I’ve had confirmation of my blood work being abit raised and / or lower than the ranges needed. I’ve also had my scan booked for the middle of January. It seems its most likely down to an ‘active rectal stump’ but the scan will confirm any suspicious and blood work will confirm inflammation levels. Fingers crossed! xox