In the next few weeks, I’ll be coming up to my 16-year anniversary with my J-pouch.
I really do consider myself someone who’s had a good outcome with my J-pouch. To make sure I’m giving a balanced account of my experience, I want to share three things where I still struggle with my J-pouch.
When I was thinking about these, I realised there was a common theme running through all three of them. And that theme is control, or a lack of control.
Public Transport
The first one is traveling on public transport. There’s been a few occasions (typically for work) where I’ve had to go somewhere by train or by bus. I really don’t enjoy traveling in that way. That’s because of the control element. When you’re on public transport, you’re traveling to someone else’s schedule. If you need to pull over at a motorway services and use the facilities, that’s not within your power. You are on a set schedule. You have to go where the train, or where the bus is going. Every time something comes up that’s got an element of public transport, it causes me some stress.
I think the other thing with taking your own vehicle on an outing is that it’s almost like a home from home., We have vans in our family. When my eldest daughter was diagnosed with UC, we sold our car and bought a van. In fact we have two vans (we also have a camper van), in which both have got camping toilets in. So there’s a a bit of a safety net now and I’ve come to depend on that safety net. It’s almost become a crutch that I lean on. It does an amazing job and it’s opened up so many options for days out for travel where toilets now are not an issue. Maybe I’ve become a little bit soft to that and I’ve just gotten used to that.
Seated Events
The second thing is seated events. By seated events I mean an environment where you go to something where everyone is seated and it’s socially a rule that you remain seated. Times I’ve experienced this are when there’s a church service running, or carol service, or a wedding. Whatever it is, everyone sits down, the service starts, and then you’re expected to remain seated. If you do get up, all eyes look at you and it’s a bit out of place.
The reality is my pouch is completely trained and able to sit in those environments and hold for that amount of time. I think it’s the mental side of that environment where that control is taken away. That option is taken away just to move around freely and therefore it causes me some anxiety. Now typically what happens when I get anxious in my head is that my tummy tightens up and then the very thing that I’m worrying about causes the thing to happen. So it’s kind of like a self-fulfilling loop. What I try and do now is just enjoy the experience. So if I’m going to a service, if I’m going to an event, I just try and sit and enjoy it.
Trigger Foods
And the third thing that still catches me out even after all these years is what I would call unknown trigger foods. On the whole my diet is open and varied and I enjoy food. I probably enjoy food too much these days. Especially after Christmas I need to go on a diet! However, every now and then a food will come along that you think is perfectly fine and for whatever reason it really can upset my digestive system. My pouch will go from being quite dependable to being an absolute nightmare for 24 hours.
I experienced this just a couple of weeks ago. We opened a box of chocolate chip cookies the other week. I’ve not had a problem eating chocolate chip cookies in the past. They weren’t particularly big. So I took a handful of these biscuits, dipping them in a cup of tea, and the next day I had the most horrendous day and really struggled.
Now I’ve had biscuits before. I’ve had chocolate biscuits before. I went into this packet of biscuits not expecting to have a problem. Boy was I wrong. Even after 16 years, (and I’m quite experienced now living with my J pouch), that caught me off guard.
J-Pouch: Front and Centre
It’s these kind of events that just bring the J pouch front and center again and can make me think, oh, okay, I need to think about this. I need to manage this. I hope you found some value in this or you can share it with someone that can find some value.
If you prefer to watch the video version of this blog you can do so below. You can also visit the Pouch Heals Youtube Channel to see more videos covering a range of topics all based around the journey from UC – J-Pouch.