Less than two weeks after my J pouch reversal surgery, and things really could not be going better. I'm amazed and thrilled with my progress. So much has happened in this past week that I've kept forgetting to update! Unlike the previous surgeries, where it took me months to feel like my normal self, I already feel fantastic (and it's only day 11).
Feeling fab!
I accept that I can't speak for everyone with a J-pouch. Some people really struggle in the first few weeks, going to the toilet multiple times a day and worrying they've made the wrong decision. But for me, the pouch is already fantastic. I am so, so happy with my choice.
In the first week (up until about day 7), I was worried. I was going to the loo a lot, getting up around 4 times a night (really!), and the butt burn was excruciating! I felt really miserable around that time. The broken nights of sleep didn't help. I'd been eating a pretty bland diet, cutting out all spicy or fibrous things, yet still my bum felt like it was on fire, and the pouch was really hard to empty. It felt like I was constantly constipated! I'd get belly ache, and at some times it felt like I'd sat on a cactus (a horrible spiky feeling down there!) For that short time, I worried I'd made the wrong choice.
Then, almost overnight, things started to show an improvement. By day 8-9, I'd suddenly got to grips with the pouch emptying. It's not like going for a 'normal' number 2 - it's very hard to describe. With a rectum, you've got lots of muscles working all round, whereas with a pouch it's just a ring of muscle at the bottom that's doing all the work. I've found that bending right over helps, or standing up when I think I've finished, waiting 30 seconds and trying again. Initially, I'd be in the bathroom for up to 10 minutes at a time, straining a lot and not knowing when the pouch was empty - but very quickly I've adapted, and it now takes less than a minute to empty the pouch satisfactorily.
The night trips have slowed down, too. With a combination of eating earlier, but also more general improvement, I now go 1-2 times per night. If it gets to 1, I'll be happy - I always had to get up once per night with an ostomy bag.
I've not had one single accident, though. Not even at the beginning. If I need the toilet at night, the pouch wakes me up. I've not even had minor leakage. By using wet wipes rather than loo paper and applying Bepanthen (regular nappy rash cream available at any pharmacy) after every bowel movement, the butt burn is well under control. A friend of mine from the US also very kindly sent me some Calmoseptine to try, a type of nappy rash cream that is not available in the UK - apparently this is the very best remedy for bad butt burn.
By day 8-9, the frequency has decreased massively too. I'm going to the loo now about 6 times per day, which is around the average for a J-poucher - yet it's been less than 2 weeks, so I'm likely to see this decrease even further.
So, to put this into perspective, here's a list of the things that have improved by day 11:
- Frequency: Started off by going to the loo 20 times per day initially, gradually decreasing - now at around 6x per 24 hours.
- Butt burn: Started off as very painful - now minimal, and well-controlled with cream application
- Diet: Started off with a bland diet e.g. plain fish and meats, mashed potato. I've now eaten: cabbage, green beans, salad, stuffing, tomatoes - all with no bad effects
- Night time: Started off getting up 4x per night - now down to 1-2
And here are some things I'd still like to improve further:
- Frequency: Even less!
- Itching: Rather than butt burn, I get a lot of itching down there, which is pretty annoying. If this could shift, that'd be great.
- Diet: Add more things into my diet, including problem foods eg. mushrooms, which I plan to do soon
- Night time: Once a night (or even none - I can dream!) would be perfect.
The stoma scar is still healing - I saw the practice nurse on 23rd December, who checked it over for infection (it was fine) and gave me new dressings, as the old ones seemed to be irritating the skin and wound. It's quite large and bumpy, and will take a few weeks to heal, but it's already closing rapidly.
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Out and About
As things have started to get better, I've gone out and about. My first trip out was on 21st December to a fish restaurant in town, seeing some friends where we exchanged secret santa presents. As it was my very first trip, my dad drove me to the door of the restaurant, then picked me straight up at the end. It tired me out, but it was so nice to get out, dress up and feel like my normal self again. My pouch was still a bit hard to empty at this stage, so I was feeling quite frustrated, but going out made me feel so much more human! Eating pasta at the restaurant proved a brilliant choice - pasta is great for slowing everything down - and it was tasty too.
At the meal!
Seafood pasta - yum!
On the evening of 21st, we also had some family friends round and went to the local pub for some food. I really was tired by this stage, but the pub is only round the corner, so we were able to come back to the house straight after where we chilled out.
On the evening of 23rd, I braved it again as my parents and I went to a gathering at a friend's house, then around 9.30pm my parents drove me to another friend's house to catch the end of a Christmas party. I'm strictly off alcohol, but still enjoyed chatting to people and catching up. As it was quite late and I felt confident, I ended up staying overnight without any problems!
On Christmas Eve, we went to a gathering at another family friend's house in the evening, which was lovely. I even drove my parents there and back (it's only 5 minutes away in the car, but it was still a small achievement).
On Christmas Day, I enjoyed a Christmas Dinner with nearly all the trimmings!
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I know it's early days, but already I am so happy with my choice. So many scare stories online try to put people off trying a pouch - to the point where some people are too afraid by what they've read to consider a stoma reversal. Some bad stories say 'it's like having UC again, you might be incontinent, it's safer to have a bag' - yet personally, it's more like before UC, I'm totally continent and already getting back into enjoying life. Admittedly, I've had a smooth ride so far - no pouchitis or other issues yet - but for now, I'm loving my pouch.
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