Craig and I haven't discussed the meeting at all. Usually we would have a little chat about it in the car on the way home. I just didn't know what to say. It was brought up last night about the men in our lives not talking about it and it coming across as them not grieving as we think they should be so now i'm starting to understand that's it's just a mans way of dealing with it all and not that he isn't thinking of them.
There weren't as many people that I didn't know at the meeting as I thought there were going to be. I do find it hard though when i've socialised with someone from the group outside of the meetings and then they tell their story.
This picture was taken at the support meeting last night. The members of the Swindon Sands group have sewn their babies' names onto it and as you can see, it's heartbreakingly full.
It's really nice to know that people from the group would like to come and visit me in hospital when I have my op. I really have met friends for life. Everyone at the meeting is so lovely and not one of the families in that room deserve what has happened to them. Someone described it as a "shitty journey" and I think that sums it up so well. Everyone has a completely different story to tell and each and every one of them is equally as heartbreaking.
My op is going to be quite routine but major surgery due to them opening me fully back up again. I'm not happy with the Ileostomy bag, but at the same time, I know how to deal with it and i'm so used to it that it is as normal as anything else would be. After surgery it could take my bowel up to a year before it gets used to working again. Thankfully because it will have only been 5 months since i'd had it done, the bowel won't forget too much of what it is supposed to do. It's quite daunting to know that for a while I may have to be very close to the bathroom as accidents may happen frequently. There are lots of things that will change and even though I don't particularly want to keep the bag for the rest of my life, perhaps it would be easier.
My scar is starting to heal properly although it is quite red and raised in some places. Hopefully the surgeon will cut the scar out and will just have one new scar to heal rather than this one as well. The stoma scars will also be quite big. Probably 2" maybe more for each one. The skin around the stoma's are quite scarred already because of where the stitches were originally. When they pull the intestine through the stomach muscle and out of the abdomen, they stitch around it. I originally thought it was because the skin around the stoma needs to heal but it's only cosmetic. The stitches give the stoma the shape. When I had my stitches out, my stoma's had shrunk so much that the skin round it had ripped where the stitches pulled when the stoma's shrunk and now they have left white scars around. I had 8 stitches around each stoma. I have no idea what the scars will be like there, will the surgeon cut some of the skin away?
This picture of my scar was taken on 01/12 and it looks the same today. The bit above the belly button is quite raised and that itches and sometimes hurts. The worst bit is the pelvic area which isn't in the picture. Clothes especially jeans rub on it and it sometimes can be quite sore even when i'm lying in bed. The left hand side of my abdomen is sore to touch sometimes - it can be quite painful if I knock against something.
Not a particularly nice picture above but this is what my stomas look like now. You can just about see the little scars from the stitches and you can see the marks from the ileostomy bag. It is probably only 20 minutes or less every other day that there isn't something stuck to that area of the skin so the marks are quite obvious (although not in this photo). The small dark red marks on the skin directly around the stoma, is where the acid has started to burn the skin. It's very very sore to touch but obviously it has to be cleaned. Glue and plastic from the bag when it starts to deteriorate stick to the skin and the burnt area. I don't have a picture of the skin from when it was badly burnt and to be honest I hope it will never get to the point where I have that again.
It's been a bit of a disjointed blog entry today but to be honest that's how i'm feeling.
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