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!

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

J pouch day 16

Just over 2 weeks post-reversal surgery, and everything is still going great. I'm so happy with the progress I've made so far.

This surgery and recovery has really been a welcome surprise. After op 1 and 2, it took months and months to even feel vaguely like my normal self again. When I came home from uni and had this final surgery, I was worried that a month wouldn't be enough time off before I had to go back. Now, it's seeming like plenty of time as I already feel so much better!

The J-pouch function isn't perfect yet, but it's already at a manageable stage that allows me to have a normal routine. I can hold off going to the toilet for a long time if I want to. When you need the loo with a pouch, it doesn't feel like it did with a colon - it's more like a feeling of pressure in the pouch, and if it's really full then you'll start getting a slight stomach ache as well. Even when the pouch isn't connected (when you have the loop ileostomy), it partially functions and fills up with mucus - this gives you some idea of how it feels to empty a pouch. You still get the same sensations of pressure/stomach ache when it needs emptying, even before takedown.

Yesterday, I went into town to meet a friend and do some sale shopping, and when I was in one shop (really far from a toilet) I started needing the loo. Instead of dashing off to the nearest bathroom though, I was able to distract myself by looking round the shop and the feeling soon subsided. I didn't actually need the loo again until hours later.

I've eaten a lot of different vegetables now, all of which have been fine for the pouch. I also ate a couple of mushrooms the other night, but they were very well cooked and soft.

My scar has completely healed over now. The other day, I was worried I had an infection, as the stitch sites were weeping a cloudy yellow fluid - but as the dissolving stitches gradually fell out (sometimes helped with a little bit of a pull from me - a bit of an ouch), each little hole healed over very quickly. My stomach has now returned to its normal shape - it was slightly swollen for over a week after surgery.

The biggest issue for me right now is night time toilet visits. I'm currently getting up twice a night to go to the loo - it was 4x at first! - which is a bit irritating. Once a night I could handle, but two is quite disruptive to sleep. Fortunately though, as I got used to eating my dinner early/not overeating, the frequency went down. I had the tiniest of night time leaks (I mean so, so tiny) the other night after I'd eaten raw carrots and cucumber on a buffet at about 9.45pm and then gone to bed at 11pm (come on, that was sort of asking for it).

I'm starting to learn that a big part of J-pouch life is keeping an organised routine. Skipping meals or not drinking enough worsens pouch function, but keeping hydrated and eating little and often really helps to keep things regular.

I'm off to a friend's house to celebrate NYE tonight - in the meantime, wishing all my readers a very happy New Year and hoping that 2016 brings good health to all of us.

J pouch days 7-11

Merry Christmas and a Happy New Year to all my readers! Here's hoping you've had a healthy and happy festive season.

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.

Merry Christmas!

And here's a little something for Christmas...

On the twelfth day of Christmas my doctors gave to me...

12 'yummy' Fortisips
11 nasty cannulas
10 Clexane injections
9 blood transfusions
8 weeks of moonface
7 rounds of morphine
6 Bristol stool charts
5 awesome scars!
4 CT scans
3 operations
2 weeks of ciclosporine
and one IBD-free body!

Merry Christmas everyone <3