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Codiene, Jpouch and doctors with funny names

I saw a new dr on Thursday, a registrar on the team of fabulous medics who have been looking after me. As you may know, my surgeon is called Mr Brown, we do laugh that he has an appropriate name for a bum doctor… Well, the new one was called Dr Liu. Dr Loo?! Are they kidding?

When they become a doctor do they choose the funniest name they can think of that relates to their speciality? Did I mention my friend’s dad (he has an ostomy too) whose doctor is Mr Butt!

Or is it like Harry Potter’s sorting hat? When you start medical school do they match your name to the most appropriate category?

Anyway Dr Liu was very nice, he talked through my camera test which showed a very small amount of inflammation but not enough to be causing me so many problems. The Coeliac test hasn’t come back yet but all other blood tests are normal. This is great to know there’s nothing majorly wrong but a little annoying as it means there is no easy treatment.

I am going to the toilet around 15 times a day, sometimes as many as 20, I have talked before about how it is normal for someone with a pouch to go multiple times a day but this is very excessive. Since the op I take Imodium every day to slow the output.

The doctors have added in two more drugs to slow everything down. The first is fybogel which thickens the stool and therefore makes the passage through the body slower.

The other new drug is codiene. Though it’s used as a painkiller, a side effect of codiene is constipation and so I’ve been put on quite a bit of it. I’m now taking 4 Imodium, 2 fybogel and 8 codiene a day. I wasn’t sure at all about taking so much of a string painkiller but after 2 days it seems to be working!

On Friday I went to the toilet just 7 times in 24 hours and then amazingly I slept through the night last night!!!!

Woooohoooooo!!!

I can’t describe how good it feels to have had a proper nights sleep after so long of waking at least a couple times a night.

The only issue is that codiene are strong painkillers. I’m feeling very sleepy and foggy headed and so the codiene isn’t going to work long term for me as I don’t feel able to drive or do much at all when I’ve had the tablets.

The plan is to try this combo for 6 weeks then go back and see the team. If things aren’t settled by then, we will reevaluate.

Thanks so much for the lovely messages

Sam xx

Pouchitis. Suspected.

No confirmation as yet through my blood tests if my inflammation markers are up and obviously I’ve not had the camera test yet but man, I’m feeling pretty dreadful. I’m on the loo 10-20 times a day and I’m so drained and exhausted.

Just so it’s clear, I haven’t been admitted to hospital, I had a few messages worrying that I was inside again. I’m being treated as an outpatient but my doctor is pushing it through as an urgent case and so fingers crossed it will be sorted soon.

I think the tiredness is the worst part. I’m up several times a night and so I’m so exhausted. I also feel like this is a big step backwards in my recovery, mentally I’m feeling a little battered. I’m trying to push through physically and emotionally but to be honest I feel pretty damn rough.

The thing that floods back as soon as I start to feel ill is guilt. I know I shouldn’t feel bad, but my illness is such a burden on those around me and I fear the day that everyone has had enough. I worry my friends and family will get sick of me being sick.

I know the feeling as I have had enough of it. Because that’s the other feeling. Self pity. Such an ugly feeling and one I generally despise but right now I feel sorry for myself. Poor me, poor my arse…

Sorry this post is such a bummer. I actually do know that I’m a lucky cow and have loads of lovely things in my life. I’m still on a high from our amazing wedding renewal and we have a honeymoon booked! An actual honeymoon with just me and Timm, no kids, no work! So I need to concentrate on getting better because in three weeks come hell or high water, I WILL be off to Lanzarote with my boy!

I think the emotional and mental side of living with a chronic illness is often overlooked. On the outside I may have painted my face with makeup and a smile, but inside it is a struggle. Logically I know I need to just buckle down and get through this dip in my recovery. I need to count my blessings and try and find the positives in life. And I do that. But sometimes you just need to lay in a dark room under a duvet and cry like a baby. Perhaps today is one of those days.

I’ll leave you with a laugh with this photo that my mother put on Facebook past night of my hen night… I thought Id escaped without any reaaaallllly embarrassing photos but it seems she was saving them up for now!!! Here’s me looking more than slightly squiffy…

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Love Sam x