Post-op monitoring experience?

[Pigeon]

Hi - I'm new to forums but not new to Crohns having been diagnosed over 9 years ago. I think I had the condition for 10 years before that but was fobbed off with an IBS diagnosis and no follow up until I lost 3 stone in one really bad flare-up and forced the issue with my GP.

Since then I've been up and down but my flare-ups were managed through prednisolone and I moved onto aza after being advised that pentasa wasn't as effective as had been thought!

The last year has been tough/interesting(!) as I was diagnosed with breast cancer and had to come off aza due to the immune suppressing effects of chemo. Fantastically my stomach was great during chemo but as soon as I came off that, it went into overdrive and I had emergency surgery this February to deal with a partial blockage, fistulas, lesions adhering to an ovary and goodness knows what! No-one has been able to advise me how much of that was already there pre chemo but being masked by the aza but I'm sure I had some of those problems already.

Part of the reason no-one could tell me was that I've never had any scans/internal exams other than the colonoscopy when I was diagnosed and a CT scan when it was clear something was very wrong just before my op. Now I'm out of the other side of this I am concerned that my consultant doesn't seem to be considering ongoing scanning. I'm not on any crohns meds having given up on Metronidazole at 50 days after the side effects got too much.

What is your experience of post-op monitoring? I've seen studies that suggest endoscopy or maybe ultrasound at 6 months or a year are a good way of predicting how the disease will develop but no idea what's normal in practice.

 

[David]

Each doctor is going to be different regarding scans. I have yet to see any sort of consensus.

However, you having fistulizing Crohn's disease and not being on any medication is very concerning to me. At the very least, you may want to bring up the idea of Methotrexate though I would be much more inclined towards Remicade if they didn't feel it was a risk with the breast cancer.

I wish you well.

 

[24601]

I believe that at my hospital that the post-op monitoring protocol is MRE 3 months after resection and once a year thereafter unless more frequent imaging is indicated. That's based on my experience with small bowel disease and we don't do scopes for me but obviously for others scopes would also be used.

I think that since your plan is to go without medication that I would want to err on the side of more frequent imaging.

The papers I've seen on preventing post-op recurrence of Crohn's do talk about there not being a consensus on how or how often it would be best to monitor for disease recurrence.