It’s been six weeks post pouch surgery and since I started on the loperamide last Monday, things have improved massively. Last week I was going to the toilet around 20 times a day and having 2-4 accidents a day which was heart breakingly depressing. Dr Brown said I needed to figure out how much or how little of the meds to take to slow down how often I need to empty my pouch, I started high at 4 tablets which was too much, I ended up with a lot of bloating and terrible stomach pains.
I have brought it down to 1-2 tablets and this seems to be working well for me, I am now going about 5 times a day and accidents are a lot rarer! I have found that most days I am ok in the mornings as my stomach is empty but it gets worse in the evenings and so I’m taking the loperamide at tea time.
It is embarrassing to talk about this, I cringe at the thought of people knowing how it has been but this blog is about honesty and I am going to document the bad times so I can appreciate it when the good times come. There is also a lot of bad press about j pouches, I have seen in many forums people saying they wouldn’t ever have pouch surgery as it’s too much like going back to illness with the recovery.
I still have some discomfort but I am down to just occasional pain relief rather than every 4-6 hours as I have been.
On Sunday I had my first day out. It was tough mentally, I had a little cry as I tried on forty outfits to find something I was comfortable. I’ve lost quite a bit if weight and everything just looked ODD. I’d developed a good wardrobe that worked well with my ileostomy bag but now I’ve lost my way a little. Wearing pyjamas for six weeks does that to a person!
We had a family day out at Cliffhanger, a family activity festival in Sheffield and then on to L’eroica in Bakewell, an Italian bicycle event with music, food, drinks and general loveliness.
It felt weird being out in public and I felt quite self conscious and a bit fearful. I was very glad to have Timm’s hand to hold, which is an odd feeling for someone like me who is usually confident and independent. But it was really lovely. A tiny bit of normality in a family day out and it lifted my spirits hugely.
Even having to use outdoor portaloos was ok. I felt the urge to go and panic washed over me a bit, but is told Timm and he just took my bags and said “go! We’ll find you!” So I set off on walking, fast enough that I wouldn’t shit myself yet nonchalant enough that I didn’t look like I was about to! It was all fine though and it felt like a little victory for me.
It was a big step for me to be out for the day. I felt quite emotional, it just felt so good to feel like a real family after weeks of me being a patient whilst Timm cared for me and the kids. It reminded me why I have gone through the last year, that I wanted to get to a point in my life where it wasn’t all just about illness.
I still have a long way to go,but this first day out felt like a really great first step on that ladder.
Love Sam xx