Well, the post where I told you it might be dairy causing me all the grief which is here might as well be scrapped. Or, I should finally accept that things don’t go to plan and I have a tendency to speak too soon.
After I hit publish on Saturday I went to bed. The next day I woke up and spent the next 24 hours feeling awful. I didn’t leave the bathroom much and cried pretty much all day. The four day work week I had planned wasn’t looking doable and I’d decided to not bother with any new foods as I had had enough. I was still thinking about not eating at all.
Things did calm down though and I managed to get to work. I even managed a meeting at New Scotland Yard – somewhere I don’t know the layout of and was having visions of never finding a loo if I needed it. Even with things calmer though, my brain wasn’t feeling as calm. There’s been real low points, which is to be expected with any illness and recovery. What amazes me though is how it comes and goes without any real warning. A big black cloud parked on top of my head at the beginning of this week and I’m not sure if it’s leaving anytime soon. The symptoms I experience now are in some ways worse than the symptoms I had before diagnosis and even during treatment. This is hard to swallow at times. At times I’ve wished I’d not bothered with surgery. I sometimes wish I’d not bothered with treatment full stop. Mr Surgeon understands the frustration though. He saw just how frustrated I was today when he commented on how well I look. I told him people tell me that a lot lately, which is nice to hear, but I don’t feel well. Sometimes I wish I looked how I feel, just so people would get it.
So today I saw Mr Surgeon. He wanted to have a chat about the scans I’ve had recently. A SeHCAT scan – general description here and a small bowel meal x ray too – which is this. If I’m honest, I was expecting to be told “Scans are all OK – it’s diet and time that will sort this out”. Honestly, if I had heard those words I think I would have knocked Mr Surgeon out. Because I’ve had enough.
Hearing “You have a bile salt malabsorption” was like being told I’ve won the lottery. We both grinned. Because finally, we had a reason. Mr Surgeon was horrified at the caveman diet I’m existing on. He wants me well and he wants me living a full life. So do I. He wants me eating my veggies too.
Mr Surgeon wants to speak to my Oncologist and why this has happened. It could be because of radiotherapy or it could be due to the surgery I had. I’m not really surprised.
I’ve been prescribed some medication which fingers crossed sorts me out. My body isn’t disposing of bile like the body should. Instead it’s being taken into the large bowel and I’m getting rid of bile by going to the toilet. It hurts. You know when you’re sick and you get to the point of only puking bile? It stings doesn’t it? It makes your teeth feel funny. It feels like chemicals. Well imagine how it feels to pass bile through your backside. There are often tears.
So, fingers crossed this magic glue like drink that I have to have four times a day will sort things out. If it works it means I might not have to live in my bedroom forever. I might be able to go to work and and go out to site without being worried about where the nearest toilet it. I might get my life back. I might be allowed to eat some food I actually like. And GASP! I might be able to socialise.
It’s not going to work overnight, but I should see a difference in about 3 weeks. Which would be just lovely because I have my birthday in April.
Maybe with this special drink and being a bit careful with foods, things might be about to change (I’m tempting fate again aren’t I? Maybe I should delete the blog…)
I might even be allowed some dairy. I’m not ready to be THAT trendy.