Again, it has been such a long time since my last post and although nothing huge has been happening I guess things have developed over the last couple of months.
Firstly! I don't know if I've mentioned it before but a couple of months ago I popped back to see my consultant as I found an ulcer on Margaret. I was changing the bag one day, when I spotted a small flat red mark on her, I took a photo (for evidence) but wasn't overly worried. Stomas aren't the toughest things and the smallest bump can make them bleed or cut so I assumed that was probably what has happened. Upon the next bag change, however, the little flat red mark had evolved in to a slightly larger, darker dip in to the flesh with a white-ish centre. It didn't hurt or bleed or produce any other weird or wonderful liquids so I really wasn't sure what to think. As ulceration and active Crohn's has always been on my insides, I had never really seen what it looks like up close, I decided to take to Google to see if I could identify the little thing. BIG MISTAKE! Not only was the list of possibilities huge but the photos were graphic and not particularly pleasant - whatever you do, never ever Goggle Image 'Crohn's Ulcer'...
About a week on, the mark had yet to improve so I took the plunge and contacted my IBD Nurse, sending her my photographic evidence. I'm always a bit apprehensive when contacting my Dr's as in the past it has always lead to more tests, appointments, developments or medication changes - most of the time, things have gotten worse. I have gotten pretty darn great at knowing my body and knowing when things weren't okay, I don't think I have ever received a piece of news that I hadn't already considered and thought was probable. As expected, the IBD Nurse contacted my consultant and I was booked in the following week to be seen.
My appointment day arrived and I went in as usual, my consultant had a new trainee IBD male nurse with her, I introduced myself before talking through my little discovery and removing the bag to show them what it looked like. I always find it really bizarre, that with this kind of disease you meet someone for a matter of minutes before whipping out a private part of your body. 'Hi my names Gabi, now have a look at the intestine sticking out of my stomach'... but I guess they are incredibly used to it and it's pretty impossible for me to be embarrassed anymore.
My thoughts were confirmed and Margaret, the little bugger, had grown an ulcer. This was not the greatest news. Margaret was placed where she was so that all active Crohn's (ulcers) were below her, thus giving that diseased part of the bowel a chance to heal. This discovery showed that there in fact Crohn's above Margaret (and on top of her) meaning that the disease had moved places/spread and my current medication wasn't doing its job properly. Luckily, from the ulcer we could see, and the minimal stomach cramps I was getting, it was easy to assume that the flare up wasn't severe and easily solvable. It was this appointment that lead to the disastrous MRI scan that I wrote about in my last blog post.
A couple of weeks ago I went back to go over all my test results. The good news is that it doesn't seem to be a huge flare and the little ulcer on Marge has disappeared, the bad news is that my Humira injections have been put up to every week again. This isn't a huge deal but is a bit of a faff and nobody likes sticking needles in their stomachs! The other repercussion, which although not mentioned by the Dr's I feel is very true, is that the likelihood of me having Margaret reversed has gone even lower. If my body and the medication I am on can't hold off the Crohn's with Margaret it sure as hell won't be able to do it without. I know I've already been told that it's probably not going to happen but every bit of news like this just makes that all the more real.
On the next post, I'll tell you all about the story of my wobbly joints....