'You're just in the unlucky 5%' - Falling the wrong side of the stats

Hello all!

It's been a while since I last posted here (again). This time I'm not going to make any more promises to keep writing this on a regular, because every time I do, something inevitably gets in the way (work, uni, future life plans, being ill). I find that I come back to my blog when I'm inspired to say something, and sometimes those days are few and far between, so please do bear with me!

I've now had a fully functioning J-pouch for around 15 months, 3 months of which were absolute, life-changing bliss, the other 12 a constant battle against my new arch-nemesis, pouchitis. 'You haven't got a colon anymore? That's great, so no more Ulcerative Colitis, right?' These days, I'm asked this question and immediately get a sinking feeling in my chest. Things have hardly been easy since the reversal, but I am finally starting to accept that there is no 'quick fix' for IBD. Not even chopping the stupid colon right out.

Me, when someone tells me my IBD is 'cured' post-surgery

For those of you who don't know my story, I was diagnosed with severe Ulcerative Colitis back in December 2013 when I was 19 years old. 2 weeks later, having only heard of IBD 14 days before, I was in theatre having an emergency operation to remove the majority of my large bowel.

I lived with a stoma for nearly 2 years - and during this time decided to have a 'J-pouch' created, a surgically-made reservoir of small intestine that is 'sewn' to your bottom internally, so you don't have to wear a stoma bag. (See here for more info: https://www.verywell.com/j-pouch-1942973)
In December 2015, I had my ileostomy reversed and my J-pouch 'connected'. Woohoo, butt poops again! (Little wins.)

The problem with a J-pouch is, it's not some simple quick fix. J-pouches can develop lots of problems of their own. One of the biggest of which is POUCHITIS, in my opinion a stupid name for a condition that someone probably made up when they were bored ("Oh, so it's a pouch? And it's inflamed? Well that'll be pouch-itis, obviously").

Pouchitis is basically like IBD for your small bowel. You get bleeding, diarrhoea, painful cramps, fatigue, nausea. They don't really know what causes pouchitis, and other than antibiotics, there's no real treatments. If antibiotics don't work (as they haven't for me), you're in the 'unlucky percentage' that need to seek other treatments. For me, that'll be a clinical trial drug - watch this space, I do plan to write about that when it begins.

This is where I come on to the topic of this post - 'unlucky percentages'. Now, I'm not a superstitious person. I love black cats. I walk under ladders. I smashed my hand mirror (in hospital being treated for UC actually - perhaps actually the source of my problems) and I'm not freaking about it or anything. But I am beginning to feel that statistics have it in for me.

I think getting UC itself was pretty unlucky to be honest, but that's not really where this starts. When I was diagnosed, I first met my gastroenterologist and listened in horror as he explained to me what IBD was. I has just been admitted to hospital via A&E - my own fault, to be honest. I'd ignored my worsening symptoms for 12 months out of embarrassment, and by the time I was admitted, my colitis was at a life-threatening stage, affecting my entire colon rectum to cecum. I was told all about UC, what it was, how it was treated. I was assured that after a dose of steroids, most people made it into remission (although I'd still have the disease for life, of course). Nevertheless I was optimistic when I began the steroids.

That was, until 3 days later, when my symptoms remained completely unchanged. Nothing, whatsoever, was different. Somewhat flustered, my medical team switched me to 'rescue therapy' Ciclosporin. 'This works in a large percentage of patients', I was assured. This was around the 20th December - and I held out hopes I'd go home for Christmas.

Yet here I am, on Christmas Day 2013, waiting for the promised 'remission' in my santa hat, Ciclosporin still pumping into my arm.

This continued for days and days. New Year's Eve arrived. At this point, my symptoms had slowed, but were still very much there (I remember arguing with the gastroenterologist that my bleeding had stopped, so that was good, even though I was going to the loo about 20x per day. I argued that I'd rather live with this than go for a bag.) By this stage, they'd started to tentatively explain stoma bags to me. I angrily refused visits from the stoma nurse at first. This wasn't going to happen to me. Most patients responded to Ciclosporin, right?

Yet here's me, on January 3rd 2014, in HDU recovering from my emergency colectomy. My colon started bleeding uncontrollably on New Year's Day, and I was in theatre on the 2nd.

My thumb might be up, but I'm not chuffed

According to the CCFA, about 23-45% of UC patients will need surgery at some point in their lives. This is significant, but it's not that many. And I certainly doubt that so many need surgery 2 weeks post-diagnosis. I'd already felt a little cheated by the stats at this point, but little did I know what was still to come.

In June 2015, I had my second operation to remove my rectum and create the J-pouch, along with a 'loop stoma' to divert the stool for a few months and allow the pouch to heal. Sure, it's a big op, but it was planned, I was well, and ready to go. There are risks of complications from this operation, but not massively significant. Things all went brilliantly - until 7 days post-op, I had a major, life-threatening bleed - an internal stitch had split (no fault of my surgeon whatsoever, just to clarify). I needed blood transfusions, clotting agents, and an extra week in the hospital. (At the time, I blogged about this: http://thisgirlsgotguts.blogspot.co.uk/2015/06/day-9-post-pouch-when-things-don-go-to.html)

I was later told that this particular complication happens to 3% of patients. T-h-r-e-e.

Nope.

Thinking it was all a bit of a joke by this stage, I went on to have my pouch reversal and things were going swimmingly until 3 months in, I got my first bout of pouchitis. Not so unlucky this time - up to 50% of new pouchies get a bout of it in their first year. I took some antibiotics and thought nothing of it. Until it came back. And I took a second course, and it came back again.

By the 9th course of antibiotics a year later, having tried several different types of them (Metronidazole, Ciprofloxacin, Co-Amoxiclav), and finally being diagnosed with chronic pouchitis, I've found out this happens to about 10% of people. Seriously, by this stage, I gave up with the stats. Maybe it was that smashed mirror, after all.

Now, next Friday, I start on a clinical trial of Alicaforsen, what will be the first drug in the world specifically designed to treat pouchitis. I'm optimistic, and I'm trying to ignore the nagging voice in my head about stats. Surely, I'm due for some luck this time. If it works, it truly will be life-changing. However, it's a blind study, which actually means there's a 50/50 chance I'll be given the real drug, or just a placebo. Time for fate to smile on me, let's hope.

I don't mean to whinge with this blog - although it's a pretty big whinge! It's something I've found amusing (somewhat dark sense of humour) throughout my treatment, and I thought I'd share it. Perhaps it's something that others can relate to, 'being on the wrong side of the stats'. Or maybe it's just the nature of the beast that is IBD!

While I can't promise super regular updates, I will be blogging about my experience with Alicaforsen and how it goes - a clinical trial is totally new territory for me, and should hopefully inspire some writing.

Best wishes to you all! x

11 month follow up - and amazing news!

Hey everyone!

I'm aware it's been a bit longer than the 2 weeks I promised since I last posted, but I wanted to wait until my follow-up appointment today so I'd have something fresh to write about. Today has been a day of extreme highs and extreme lows, so with that in mind I'm not quite sure how I'm feeling!

So today I had a follow-up with my gastroenterologist to discuss how things were coming along. I finished my last course of antibiotics about 2 weeks ago and I've since been taking VSL3 probiotics religiously, twice a day morning and night. So far, no reappearance of pouchitis, so that's a bonus, fingers crossed! However, I'm well aware that the effectiveness of VSL3 is disputed by doctors. Trials have shown effectiveness in some areas but weakness in others. While it's working for me though, I've got no complaints as right now it's given me my life back again!

We discussed my new diagnosis of chronic pouchitis and I wanted to ask about options for the future. Seen as I already didn't respond to Metronidazole, if Ciprofloxacin stops working, then we have a dilemma. This is a possibility, with antibiotic resistance in mind. Cipro also isn't ideal, because it raises the chance of contracting C. Diff (which as you can imagine, I could do without!)

If these antibiotics fail, then there options left are Infliximab infusions (not a fan), or a new clinical trial for a drug specifically developed to treat chronic pouchitis. We're not down that road yet so I don't want to say too much. I do feel quite sad that my pouch is not even a year old and we've already reached the chronic stage, but 'beggars can't be choosers' and I'm marginally far happier with pouch than with bag.

So all in all, I don't feel great about this, but I'm aware that it's far from the end of the road. That's my low for the day.

My high? I've just found out I've got an interview to apply to study Medicine - in other words, yes, I'm trying to become a doctor! For those of you who read my blogs in the past, this may come as a surprise (I study English currently). I've never spoken about these plans too much - they've been on my mind for years - but I was never sure I'd ever get close, never mind get an interview.

Right back in 2013, when I was first diagnosed, I'd only just started at university. At 18, I had no idea what I wanted to do with my life. I enjoyed English, so to me that was enough to do a degree in it. And don't get me wrong, I still love it. But after my initial diagnosis and emergency surgery, and being so inspired by the amazing work of my own medical team, I started to think differently.

I'd always worked in caring roles since my early teens, being big on volunteering, and I loved science (just hated maths). But experiencing serious illness myself, seeing how my medical team acted so professionally and treated me with such dignity, as well as my renewed fascination with Biology as I researched the causes of my disease, the thought first came into my mind. At the time I thought it was impossible - I'd just started English at uni, and had no recent science qualifications. So I put the idea out of my mind.

But over the past 3 years, I kept researching. Since then I've volunteered and worked in hospitals, hospices, disability services and university societies related to healthcare. I'm a trained first-aider, currently work at a hospital and I spent summer in and out of various hospitals trying out different specialties.

In September, I sat a 7 hour entrance exam that was quite possibly the hardest thing I've sat in my whole life. Convinced I hadn't made it, once again I tried to put it out of my mind.

But then, just a few weeks ago - I discovered I PASSED, with enough to gain an interview! I really can't believe it. What started off as a dream a few years back is now very close to becoming a reality.

If I can be half the doctor that my consultants were to me, I'll be very happy. In future, if I get a place, I will always try my best to remember what it was like to be a patient - and bear that in mind as I treat others.

I would not consider my illness a positive experience, by any means. But IBD over these past few years has given me many opportunities that I would never have encountered before. Working with CCUK I've gained work experience, better knowledge and continuous support through my condition. Being in hospital and chatting to people online I've spoken to HUNDREDS of people I would never have met if it wasn't for IBD - some of these have become close friends. Having IBD and the seriousness of my situation has given me positivity, determination and strength I didn't know I had. Most of all, it's inspired me to consider things in life that I hadn't before, and despite all the lows, I don't regret the last few years. They've well and truly shaped me as a person!

I'll keep this updated with other things but also more news as my application develops!

9 months post J-pouch: Dealing with the 'new normal'

Hello everyone! I'm back, after a long stint out from keeping up with my blog, and this time I really intend to stay. It's been a rough couple of months, but I'm now feeling much more positive and hope to get back to updating things here every 1-2 weeks or so, as and when I have the time. I've no doubt lost some of my old readers - and I'm sorry for disappearing without a trace - but hopefully this blog can once again start being helpful to others and get back on track where things left off.

So, what's happened in the past few months to make me quit writing? Truth be told, life with a J-pouch for the past 6 months has been anything but smooth. In the past 6 months my emotions regarding my illness have been all over the place. Ever since my diagnosis, I've always been a big 'talker', wanting to share my story everywhere in the hope that it might help someone else in the same position. For years I've been into blogging, campaigning and spreading the word about IBD.

But about 6 months ago, when my J-pouch problems started, my inspiration just dried up. I had no incentive to write anymore. I no longer felt like I could put a smile on my face, or a positive spin on things. My health was just crap. No buttering it up or making it seem better. It was just downright, all round rubbish, and I felt too upset to write about it or share it anymore.

No major emergencies have happened in these 6 months - but instead it's been one, long, continuous drag of ongoing problems that slowly wore down all the positivity I had left. After being initially diagnosed with pouchitis in March following a perfect first 3 months, I thought it was something I'd quickly be able to solve. After 4 weeks on Metronidazole, with plenty of side effects but no improvement in symptoms, I started to feel slightly less upbeat. Then I started a 4 week course of Ciprofloxacin, which seemed to clear things up, until I came off the course and a week later the symptoms came back again, just as intense and just as painful.

I spent a couple of on-off nights in hospital during this time, one time being admitted to a random hospital I did not know through A&E unexpectedly, which was a really frightening experience. It was down here in London where I'm studying, so I had no immediate friends or family around who could help. I spent a night being prodded and poked and had many tests - including scans and being given fluids - none of which gave any definitive answers.

I went back onto Ciprofloxacin again, this time for 6 weeks, then immediately after finishing the course started onto a powerful prescription probiotic, VSL3. This helped a lot, and I finally thought I'd seen the end of my problems. In the meantime, I had a scope of the pouch which confirmed moderate inflammation. However, a few weeks ago, after accidentally skipping some doses of VSL3, the pouchitis is back again and I'm on yet another course of Ciprofloxacin. I narrowly missed being prescribed steroids this time, which I'm very keen to avoid.

My disease is now classed as 'chronic' pouchitis, as I've been on antibiotics more than 25% of a year. I'm not sure where treatment will go from here. I'll continue on the Ciprofloxacin as long as it is needed - but if that stops working, which it may well do - I'll have to look at other options. The next option is a different antibiotic; then back to standard IBD treatments: 5-ASAs, steroids and ultimately, immunosuppressants. We're a long way off that stage yet, but it's a possibility in the future. The final straw, if all else fails, is going back to an ileostomy, something I really don't want to think about unless I have to.

Pouchitis, I've learned, is very much like Ulcerative Colitis, although the treatment is very different. The symptoms involve stomach pain and cramping; feeling feverish, tired and sick; diarrhoea and urgency; even soiling the bed at night. When this had been going on for months at a time, it was just soul destroying.

I think it was particularly hard because I always saw my reversal surgery as 'the end' of all my problems. Yet since my reversal, I've continued to be sick. I finally realised the hard truth that there is no 'cure' for this condition, not even after all the surgery and treatment I've had done. This took a long time for me to get my head around and cope with. I'm still not 100% there, but I'm finally accepting this and learning how to adapt my life to cope with things.

Don't get me wrong, these past few months haven't been 'bad' in lots of other ways. I've been doing work experience most of summer; I've gone into my final year of university and am in the process of applying for postgraduate study; I've been away on holiday and I've turned 22. I've met a wonderful new person in my life and enjoying all that has to offer. There's plenty to be positive about.

So, what finally made me come back? I've become a lot more accepting of my situation, and feel ready to talk about things again. I've also met a few inspirational people with IBD in the past few months - some of whom were in a very low place with their own condition - and this inspired me to get back to writing. I know my blog was very helpful to pre/post surgery readers alike, and I want to get back to providing that. I think there's lots that I can talk about, and I've got lots more ideas for articles, rather than just rambling about mundane life details :D

Thank you for reading - and look forward to getting things back on track!

Me and my best mate at my 22nd birthday party :)

Even after it's over, it's not over

I've always tried to be very positive about my condition and my journey, right from being diagnosed. That's not to say I haven't had bad days - I've had plenty - but on the whole I've tried to pull as many good things as possible out of my illness. Without having had UC, I would not be half as strong, determined or confident as I am today; I wouldn't have met so many people who have become amazing friends to me; I wouldn't have had some of the opportunities I've had in terms of work experience or spreading awareness.

Most days, I can handle everything that happened, dismiss it almost, like it was a bad thing that happened and now everything's back to normal and life goes on. Except it doesn't. Right now, I'm probably feeling the lowest I've felt about my condition for a long time, years even, and I've come back to my blog in order to vent some of those feelings here.

I've started to experience complications with my J-pouch that are having an impact on my quality of life. Not anything like UC - don't get me wrong, I don't regret the surgery I've had for one second - but I guess in my head I always assumed that having a J-pouch would be a 'fix all'. I'd be back to 'normal', albeit 'new normal', and getting on with 21 year old life like anyone else. Mostly, I do. But right now, after having experienced my first bout of pouchitis that's dragged on for a few months, on my second 30-day course of antibiotics (that apart from giving me irritating side effects doesn't really seem to be working), I'm pretty fed up. For the past week I've had stomach cramps, pouch cramps, frequent trips to the toilet and feeling really fatigued. I feel kinda breathless climbing stairs and things - wondering whether that is due to the steady bleeding I've been having intermittently since takedown - so soon I'll be going for a blood test. Once these antibiotics are finished, I will start a course of probiotic medication that I have to take indefinitely.

None of this is really a big deal. To say I had an emergency colectomy and landed in HDU, followed by a routine J-pouch construction that led to a massive hemorrhage - both occasions that were touch and go - this should be nothing. Except, it isn't nothing. After all that happened, all the crap that I got through, I at least wanted the end goal to be a disease-free life - but it's not. Here I am, having had three operations and I'm still sick. I'm still being affected by this thing and sometimes, just sometimes, I'm fed up of it.

I don't like the fact that I'm 21 and have spent the last 3 years of my life bouncing in and out of hospital. I don't like the fact that pouch surgery has left me with a 30-50% chance of infertility. Or that my body will never function in the same way it used to again. I don't like having to watch my diet, or stop eating at a certain time before bed if I don't want to spend the whole night on the bog. I want to be able to get a full night's sleep without loading up on Loperamide and feeling bloated the next morning. I don't like that everyone around me thinks I'm 'cured' now - that I'm back to normal - because I'm not. But on the flip side, I don't want people to define me by my illness. I just want one day where I have the health of an average 21 year old girl.

Obviously this is ranting about nothing - and no amount of ranting can take these things away. Lots of people have worse situations, and in terms of IBD I'm actually doing very well - I no longer have 'active' disease, and my quality of life is greatly improved since when I had UC. But sometimes, everything that's happened overwhelms me and I don't feel so positive anymore. I think everyone has a breaking point and sometimes I tip over mine.

I think overall I have a deep-rooted worry that this isn't over. Every time I become dehydrated, I have to go to A&E for rehydration - every medical problem isn't a quick 'hop to the GP and it'll get fixed', it's a 'let's go for loads of tests/spend a night in hospital' kind of problem. This has happened on my 21st birthday. At Christmases and New Years. Nights before important university days. On friends' birthdays. I've lost count of the times I've had to go to A&E for one thing or another. And yet I constantly feel like I'm being a nuisance, like I'm wasting people's time - so I often leave it as long as possible before I seek help (not wise) because I don't want to be a hassle. And also, I don't want the hassle. I'm sick of being poked and prodded and treated. If this pouchitis doesn't clear up on these antibiotics, I don't know what the next step will be, and that scares me.

I feel myself wanting to apologise for writing something so out of sync with my usual upbeatness. But also, I think it's important to recognise that this is the nature of IBD. Some days, you're fine. Some days you don't feel sick, you look well, you can participate in things like anyone else. And then other days, you feel horrendous, can't do things as normal and wonder what on earth you did this time to get back into this situation.

I will be fine - and I'm sure things will clear up in their own time. I'm working at full-stretch at the moment, working full time and preparing to apply for further study after graduating from my current degree, so I'm aware I'm exhausted and not my usual self. But while I do not regret getting my pouch, and wouldn't trade it for anything, I have to accept that right now I'm not feeling up to speed. Hopefully, in not too long, it'll get better.

Pouchitis!

Hello everyone!

I haven't been active on this blog for several months now - and to be honest, that's because there's never much to report anymore. Life in my 6 months with a J pouch has been absolutely fantastic, and health-wise I almost feel like before I got ill with IBD. Most of the time, the pouch behaves perfectly and I find myself needing the loo about 4-5x per 24 hours, never with any urgency and able to hold off for hours at a time if needed. I eat whatever I want (with the one exception of mushrooms) and don't even really consider myself to be ill anymore. 

However, there have been a couple of blips here and there, and this is one of them - I've come down with what is my first confirmed (but probably 2nd) bout of pouchitis. I'm now on a 7-day course of Ciprofloxacin.

Pouchitis isn't quite like UC, but it's not far off. There's no urgency like there is with IBD, but lots of painful cramping, greatly increased frequency, feeling hot and sick and generally very unwell. Fortunately, this condition can usually be treated with antibiotics, either Cipro or Flagyl.

A couple of months ago, back down in London, I had a similar episode of symptoms and went to the walk in centre - who didn't really know what do do with me - so turfed me to A&E. They ended up keeping me in overnight while they ran some tests, but couldn't find much and sent me home. The symptoms seemed to go away on their own. My gastroenterologist said that mild cases of pouchitis can and do go away without antibiotics, and thought that was probably what had happened.

This time, the symptoms just wouldn't shift, and I'm actually meant to be going to Glastonbury Festival tomorrow, so after a restless night with 7 trips to the toilet and minimal sleep I finally bit the bullet and got an emergency prescription of the Cipro.

I've only taken 2 tablets and already things are calming down. I'm not too worried at the moment, as pouchitis is pretty common - some 60% of pouchies will have at least one bout in the first year post surgery - and it's only a minor blip considering how good life is with a pouch. It's a very small price to pay for a usually normal lifestyle.

In other news, I've just passed my second year of uni and now filling my summer with work experience. I've got lots planned - this summer is very busy - but I'm very happy at the moment and everything is going well!

I'll try and drop a few updates over the next few months - I realise the blog has gone pretty dormant recently. Catch up again soon!

11 weeks post-Jpouch: Being ill is a distant memory!

Hello everyone!

Since my last blog post over a month ago now, so many things have happened. I've started a new part time job, as well as getting involved with volunteering at Great Ormond Street Hospital, University College Hospital and St John's Ambulance. I'm enjoying my degree and approaching the end of term (and exams - yikes!) with a mix of fear and excitement. I go out a lot with friends, and I've even been back on the dating scene.

I'm back to hiking of course - one of my greatest loves!

Life with my pouch is so good that most days I forget I've even had any surgery. My UC and all those years of treatment is starting to feel like a distant memory. I don't even really talk about it anymore - it's less and less a part of my life as each day goes by. I feel completely, absolutely, brilliantly healthy and normal for the first time in about three years.

There's just a couple of things I can't eat - mushrooms and oranges are the only things I've had to blacklist - but other than that, life is absurdly and wonderfully normal. I very occasionally have some minimal night leakage, but I don't really care - depending on what/what time I've eaten I can kinda tell if this is gonna happen. If I then take Loperamide before bed, it always stops it. I go to the loo 4-5 times per day, if that. I don't take any medication at all - only Loperamide if I'm staying over at a friend's house or going away. Even if I need the loo, I can hold it for hours if I need to - 6 hours, or more?

I never go out thinking about where a toilet will be, because chances are, I won't need it. I never have 'butt burn' anymore, even eating spicy things, and don't need to carry any special creams/wipes around with me. I wear tight fitting clothes without the need for any spandex (like I did in my stoma days) and I'm back to wearing low-slung jeans.

I can't tell you how happy I am with making the decision to go ahead and have a J-pouch made. When I first had my colon removed as an emergency back in January 2014, it seemed like the end of the world. Now, it feels like I've gone back to before having UC at all, which is a complete miracle. I don't consider myself to have IBD - I don't consider myself to be 'ill' at all. I don't have to adapt my life in any way to having a pouch - I go about my day just the same as every other healthy person my age.

Surgery is an option that terrifies so many people, and I understand I've been very fortunate in my outcome. Everybody is different, but for me, J-pouch life is absolutely fantastic. The internet is absolutely full of J-pouch 'scare stories', and there's lots of people I've spoken to who've been put off having the reversal surgery and stick with a stoma for life. Yes - this surgery is not for everyone. The operations to get to this stage are pretty huge, and I still don't forget the really scary experience I had when I bled out after op 2. J-pouches don't always work, and I suppose you're taking a bit of a gamble, but the odds are quite considerably in your favour - 95% of pouchies are satisfied with their pouch, and only 10% of pouches ever fail, most of these immediately after surgery. At the time, I just wasn't ready to live with a stoma for the rest of my life, and wanted to give pouch life a shot. And I'm just so glad I did.

Life is back to normal - and sweet as strawberries, lol!

I'll still be updating my blog from time to time, but to tell the truth, there really isn't much more to report. I'm back to normal, and absolutely loving life. Things really could not be better. If someone had asked me this time whether I'd ever forget about having UC, I'd have given them an angry 'NO WAY', as the disease (or something related to it) was on my mind pretty much every day. Now, it's all becoming a distant memory, and life's moving on.

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!