Reflections on having a J-pouch - 1 month post op!

Hello! I'm back, after what seems like a long while since I last updated anything. I've got really bad at keeping a record of things lately, mainly because now I'm back at uni I'm in at the deep end with assignments and other stuff to do that I just haven't had time to sit down and write a decent post. So as it's now been a few days over a month since I got my stoma reversed and had my J-pouch connected, I thought I'd reflect on everything that's happened so far and how I've felt on the way here.

So how is a pouch, 1 month in? For me, it's pretty good. I'd say I'm about 7/10 satisfied so far. To say that pre-takedown I thought I wouldn't be able to make it out of the bathroom for the first month, it's been a pretty pleasant surprise.

Having a pouch is not like going back to before you were ill, but it's pretty close as it gets. And honestly, I'm happy with that. A pouch isn't a colon, and doesn't function like one. If you go into this operation wanting things to go 'back to how they once were', realistically this just isn't going to happen. However, having a J-pouch very quickly becomes a new normal. It's not what you once had, granted, but it's still pretty good, and a million times more preferable than having UC.

In the very beginning (first week or so), I was going to the toilet about 12-15 times in a 24 hour period, with a lot of 'butt burning' and difficulty emptying the pouch completely. I sometimes couldn't tell if it was really fully 'empty' or not, and sometimes I needed the loo again right after I'd just left the bathroom. Fortunately, at this stage I was pretty much confined to the house, so a toilet was always readily available and I could take as long as I needed without anybody judging me! 

I quickly got into a steady routine using flushable wet wipes/nappy rash cream after every bowel movement, which tamed the butt burn completely. Slowly, the toilet visits decreased, and after a first week of continual straining/painful emptying, almost overnight I seemed to get the hang of it and toilet trips became suddenly quick and easy. When emptying a pouch, it's sometimes easier to bend forward or lift your knees up rather than sit normally - this allows you to empty it fully.

By about 2 weeks, my stoma site had also pretty much healed. My stoma site was stitched closed with dissolvable stitches, which pretty much came out on their own except for a few persistent ones that I quickly pulled off myself by about day 14 (they came away very easily, showing they were ready to go. Don't pull them if they're still painful/well-stuck. In fact, I probably shouldn't be encouraging anyone to 'pull' them at all - just see your GP). A month on, it's formed quite a neat scar that I'm pretty proud of.

My scar now

Right from the beginning, I've always had control of my pouch. Even 2 days after surgery, I was able to make the 40 minute drive from hospital to home without an accident, even though I started needing the toilet on the way. Although it's uncomfortable at first, the feeling of a 'full' pouch is something you quickly get used to and learn to put out of your mind. I'm now going several hours 'holding it in' without any leaks whatsoever, meaning I'm never caught short for a toilet! Even with the bag, I found my day planned around 'emptying' times in case it blew up under my clothes - but with the pouch I don't go to places wondering if there's a loo or not, cause I'm able to hold it in.

I started going out and seeing friends really soon after the surgery. My energy levels really bounced back, and I felt like myself again much more quickly than after any other surgery I've had. I even started driving at 2 weeks post-op without any issues or pain. I went back to university on 11th Jan, and everything is going well - I'm going to all my lectures and able to sit through every one without leaving to go to the toilet. 

It's also very liberating not to have a stoma bag anymore. Although I felt confident with it by the end, I wasn't sad to see it go. It is pretty nice not to have to change a bag each day, or carry stoma equipment with me. I've finally been able to wear low-slung jeans for the first time in 2 years - a small victory! - and can now wear my tight skirts without the need to wear spanx. Petty little things I know, but it's a refreshing change after two years.

So, what's my gripes (if any?)

I've had some very minor functional problems with the pouch, for starters. On a couple of occasions, I've seen drops of bright red blood mixed in with my stool. My surgeon was aware of this previously but it's happened again just yesterday, so I'm waiting until Monday to speak to him again. It's a little scary to see something like this and I'm not sure what's caused it, but I have a few ideas. I feel well in myself though, so it doesn't seem to be anything serious.

A trivial thing, but BM's have the tendency to be very loud! This is still something I'm getting used to, even now, and I'm a bit reluctant to sound off in a public toilet. I'm hoping I'll get over my embarrassment about this in time. When I say loud, I really do mean fanfare pitch. Laughable, colossal farting noises. In public this can be awkward.

I also take a while in the toilet at times, and I've already gone through the embarrassment of drunk girls hammering on the toilet door in a club screaming 'Oi, you've taken bleeping ages in there!'. You know what, I don't care. They can train their bladders and WAIT for another few minutes while I get myself properly sorted. You learn to tune out to that sort of rubbish pretty quickly. I've shot the odd evil glare when leaving the cubicle, but can't be bothered to explain myself - what's it got to do with them anyway?

I've also had some night leaking. This is probably my pet hate about the pouch if I had to pick the single 1 thing that bothers me the most. It's only ever confined to my underwear but it does make me feel a bit gross and embarrassed. Sometimes I can link it to eating late, but on a few occasions I've eaten early and it's still happened. I've since been doing daily Kegel exercises - 30 a day - to try and strengthen my sphincter muscles and avoid this. Taking a couple of loperamide before bed also helps, but I'm really trying to stay away from being loperamide-dependent in the long-term. I've downloaded the NHS 'Squeezy' App for Kegel exercises (£2.99 from the App Store) to help motivate me - it reminds me 3x a day when I need to 'squeeze' - and I love it!

I also had my 'mushroom episode', where after eating some mushrooms I had painful pouch cramps and spasms/watery diarrhoea and night leakage for several days in a row. I'm going to steer clear of mushrooms for a good while, as I've figured they're not worth the fuss. Even people with 'normal' bowels often have intolerances to a few things, so if I never eat mushrooms again, it's not the end of the world.

Some good 'pouch friendly' student meals!

All in all though, I am extremely happy with my pouch. If this is an option to you, on my part, I'd say take it. There's some horror stories online, but so far I'm delighted with the way my pouch has worked and wouldn't change it, even with the slight problems I've had. I'm now down to 5-6 bowel motions a day, less if I take loperamide. I've drank alcohol and eaten lots of various foods, with mushrooms being my only issue. Butt burn has subsided to a happy minimum, but I do still occasionally use the wet wipes and cream!

It's not perfect yet - and I've settled for the fact that my pouch will never be a colon. But generally, I'm so pleased with it that I'd even be happy to live just as I am now, forever. In some ways, I do feel like before I was ill - emptying the pouch is becoming just a normal part of my routine and not something I think about, just as the stoma bag did eventually. I'm finally starting to consider myself as being 'healthy', not 'sick'. Just this little bleeding problem to sort in the next few days and I'll be very happy.

In very happy non-pouch related news... I've been accepted to start training as a volunteer for St John's Ambulance! I start my training soon and then I'll be out at events providing first aid. I'm also being assessed to work as a ward volunteer at Great Ormond Street Hospital (more on this as it develops!)

Here's to another healthy month ahead - and I'll try and keep my posts more prompt next month! Happy reading :)

Me today!

3 1/2 weeks - back to uni

If you'd asked me a month ago whether I thought 4 weeks off would be long enough to recover, I would probably have pulled a very worried face! Now, heading back to uni, I feel really healthy.

The pouch hasn't been flawless, however. For anyone considering a pouch/in the early days, sometimes things can start off great, then seem to go downhill, which I've learned. For the past week or so, my loo visits have increased slightly, and I keep getting cramping in the pouch area (painless, just waves of pressure). This means I'm going to the loo more often, and can't wait as long. Speaking to other pouchies, this often happens in the first few weeks, and it can take up to a month or more to settle down, so I'm not too worried. My surgeon has offered to see me back in clinic if I do have more problems.

I've also had spots of pouch bleeding, which again my surgeon told me not to worry about. I'm still on a learning curve with what to eat and I think I've maybe rushed in to eating things too quickly - as was shown with what I like to call 'the mushroom episode'!

Mushrooms went down a dream with my ileostomy. I scoffed at the guidelines that told me not to eat them. So when I tried them with my pouch earlier this week, I expected a similarly flawless process of digestion.

BIG MISTAKE.

I got what I think was a partial obstruction - waves of pain, night leakage several nights in a row - this lasted for a few days. On the second night I woke up in serious pain, went to the loo, and out came a load of WHOLE mushrooms. Seriously I don't know whether to laugh or cry.

Since then the cramping has continued, which I reckon is my pouch giving me the message that it does NOT want mushrooms again. 

Whenever I've had the night leakage, a normal pad has been enough to stop it. It's literally tiny, and with a few Kegel exercises over the next few weeks I figure it'll stop altogether.

Other than that I feel fab. My scar has totally healed up and it's pretty neat. I'm totally med free, and not even taking loperamide.

In other news since new year I've kept going out and about and feeling better. In myself I feel okay, which is the main thing. Even though things aren't 'normal' yet, I'm still able to go about a pretty active routine!

Out and about with a pout this week