It's been four months since I last posted, but although my blogging has been quiet, I afraid the same can't be said for the Crohn 's!
I took the course of prednisolone which helped clear up the Erythema which was good, and at the beginning of March I went for another colonoscopy and gastroscopy. I was rather surprised to see that what was left of my colon had a long ulcer measured at 15cm long just down from the anastomosis (the join between the ileum and the sigmoid. ) There were also a couple of small ulcers at this join. I was surprised just how much ulceration there was, as although I had a feeling I was flaring I was hardly feeling any pain.
Ten days later I had an appointment at the GI clinic and saw my nemesis of a GI consultant. We'll call him Mr Smith in order to keep within slander laws. He rather bluntly told me that there was no cure for crohns and hence no wonder drug. (Like I didn't know). He suggested I just carry on, without any medication and see how I get on. Before I could argue a case he changed the subject and asked if I would contribute to his research project. Of course I agreed because if I can contribute in anyway towards research into crohns and colitis then I will. By the time I got home I was fuming! The research was on people with colitis who were in remission. As far as I could see, all the info pointed to the fact I wasn't in remission. Immediately, I got in contact with my GI nurse, stating that I wasn't happy with being left without any form of treatment at all, and I was worried my condition may quickly deteriorate. She replied the next day. She agreed and said the rest of the GI team agreed that I wasn't in remission, and I would be restarting humira.
Well I've been on humira for twelve weeks now, which is how long it can take to see results with a biologic drug such as this. Unfortunately I haven't seen any real results so far. Two weeks ago my Erythema nodosum returned, and I am now beginning to experience abdominal pain again. I went tho the GI clinic last week, with all my fingers and toes crossed that I wouldn't see Mr Smith again!
I feel very blessed as it was not Mr Smith! It was in fact a consultant I had never seen before. we'll call him Mr Jones. He spent time ensuring he knew my full history of crohns. He seemed very surprised that I'd never had any drug but mesalalisine and occasional prednisolone before trying the humira. He said that my crohns was aggressive, and having had a pyoderma gangrenosum before and regular Erythema nodosum, these should sound alarm bells for what is happening in the gut. He wanted me to start an immunosuppressive in combination with the humira, and wants it started as soon as possible as he didn't want the disease to spiral out of control. Finally a GI consultant that seems to be on the same wavelength as me!
I started mercaptopurin three days ago. It can take four weeks before it s effects are seen, so here's hoping! It works by reducing my white blood cell count, which should stop my body from attacking itself in the form of ulcers and inflammation. I have to be careful that my white blood cell count doesn't drop too much though as this might leave me liable to infections I can't fight off. For this reason I need weekly blood tests to begin with.
I just need to sit tight now. However my Erythema nodosum are beginning to come out on both legs and one in particular, I am worried may develop into a pyoderma. I would like not to have to take any more prednisolone, bit I may need to while I wait for the other two drugs to have an effect, or I'm going end up having to take time off work!
