J-pouch day one: My journey to here

It's official!

After 2 years and 3 surgeries, I've had my stoma reversed and have no symptoms of Ulcerative Colitis left in my body!

15th December actually marks 2 years EXACTLY to when I was first diagnosed with UC back in 2013. I was admitted to this same hospital on the night of 15th December, suffering with horrible symptoms of a then-unknown illness that I'd hidden from friends and family for 8 months out of embarrassment. Despite bleeding and having diarrhoea up to 20 times per day, going off to uni meant I'd (crazily) hidden my symptoms from everybody under some seriously naive belief that this was something 'minor' that would 'get better'. Looking back, I had led myself dangerously into denial. 

By the time my parents took me into A&E, I weighed just over 6st, was severely dehydrated, deficient in 4 minerals and with a HB score of 6. I was diagnosed with Ulcerative Colitis (pan colitis) via flexi sigmoidoscopy. Over the next two weeks, my lovely gastroenterologist battled to save my colon with prednisolone, then Ciclosporine. When both of these failed and I had a huge bleed on New Year's Day 2014, I had an emergency open surgery to create an ileostomy and remove 90% of my large bowel (not the rectum, which they left).

I spent time in the high dependency unit, and it took me nearly 6 months to fully recover. During this time, I had to drop out of university.

In hospital before op1

After op1

Once I'd finally recovered, I restarted university in September 2014. During that time, I decided I didn't want my stoma to be permanent and looked into J pouches. If you have UC, making a 'pouch' out of your small bowel can be an option, and it seemed something I'd be interested in.

To avoid taking more time off uni, I waited until the next summer holidays (9th June 2015) to have the next surgery, which involved removing my final piece of diseased rectum, making a pouch, and making a loop stoma. This was done via keyhole surgery. Between ops 1 and 2, I still had bleeding and urgency from the UC in my rectal 'stump' that I treated with enemas.

The second surgery seemed to go well at first, but 6 days post-op I suffered a life-threatening haemorrhage requiring several blood transfusions when an inner stitch split. I'll be honest and say that this was one of the scariest experiences of my life. At the time, I didn't care if I ended up with a permanent stoma (as they thought may have to be the case at one point) as long as I pulled through. Fortunately, this rare complication only happens in 2/100 people having surgery - but UNfortunately I happened to be one of them!

On the MASSIVE plus side though, once you have your rectum removed, you are technically 'cured' of Ulcerative Colitis as none of the disease remains in your body. This was one huge milestone, and really marked a new chapter in feeling properly better (than I had in years). Even when I had the diseased rectum between ops 1-2, the regular flares would make me unwell - it was a real relief to see them finally go.

Coming out of op2 looking well

7 days later, when it all got a bit scary

After recovering over summer, I went back to second year of uni this September. In August, I had a barium pouch enema ('pouchogram') to check that the pouch had no holes - it didn't!!

So that leads me to here - nearly 2 years later, having had my stoma reversed and pouch connected! It's been an absolutely momentous journey, full of ups and down (but mainly ups!) and I'm really optimistic for the future!

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So far, there's very little to report on pouch life. I woke up with quite a bit of pain in the stoma site and I'm currently on a morphine PCA. All the surgery was done via the stoma site, which is currently packed and dressed. I feel a lot, LOT better on day 1 than after the 2 previous ops and I've been up and about walking to the toilet for a wee!

I woke up already starving hungry so have munched steadily on bland stuff all day. I've had lots of gas coming through the pouch (including a champion minute-long fart!) but nothing else so far. I don't have a catheter in this time, and the waterworks all seem to be normal (if a little slow earlier today).

Right now I haven't needed the PCA since late this afternoon, and should be off it/onto oral meds tomorrow. It also made me pretty confused this morning, which I really don't like about morphine, even if it works great for pain.

I'm pretty tired now, so I'll update more tomorrow and give more thoughts then :) For now, it's my first night in a long time that I won't be waking up to check whether my bag is full - although I probably still will, out of habit!