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

Why I will always be grateful to the NHS for the way they handled Christmas

Far too often, we hear about how winter is a terrible time for our NHS. Stories of long A&E waiting times, bed shortages and poor staffing have been known to flood the media around Christmas, striking fear into patients who have to go into hospital over the festive period. As early as November, major publications warned of a 'winter crisis' on its way.

It's true that our health services become more stretched at Christmas. Whether it's a rise in festive-related accidents or admissions from over-indulgence, or because vulnerable people are more likely to become ill in the cold winter weather, hospitals do become busier at Christmas. Added to this, staffing can be short over Christmas, and these things combined have the potential to lead to problems.

However, as someone who spent Christmas Eve, Christmas Day, Boxing Day, New Year's Eve and New Year's Day in hospital back in 2013/14 - and had major emergency surgery on 2nd January - I can only praise the NHS for the care and kindness they showed to me during that time. Nurses and doctors work incredibly hard over the Christmas period, sacrificing days with their own families to care for their patients. While lots of us are cosying in with our Christmas dinner and Downton Abbey special on Christmas day, plenty of surgeons, consultants, doctors, nurses, dieticians, physiotherapists, porters, cleaners and others are working around the clock, saving people's lives and making them comfortable on some of the hardest days of the year to be in hospital.

When I was admitted to A&E on the evening of December 16th 2013 and diagnosed the next day with severe Ulcerative Colitis, I still held out hope that I'd be home for Christmas. As I was given my first dose of intravenous Prednisolone through a cannula, I was told by a lovely gastroenterologist that in most cases, a whiff of this drug under a patient's nose was enough to send their IBD into remission. As I'd never heard of IBD or Ulcerative Colitis before, I spent my days googling the condition, and soon came to realise just how serious it was, but had hope that the drugs they were giving me would work.

When after a few days the steroid treatment did nothing, being prescribed intravenous Ciclosporine dashed any hopes that I'd be going home for Christmas. When given via infusion as it was to me, treatment with this immunosuppressant requires constant supervision in hospital. I remember crying as I was told I wouldn't be going home for Christmas. Christmas Day in hospital sounded completely miserable. I remember saying to my mum that 'Christmas isn't happening this year, I'm not celebrating it', but thank goodness she put her foot down and said that festivities were going ahead, whether I was in hospital or not. When my mum and dad turned up on the 25th in head-dresses and santa hats and handed me my own one to wear, I knew I wasn't going to escape the Christmas spirit even if part of me wanted to.

Every single person working at the hospital did their utmost to keep Christmas 'festive'. The ward sister decorated Ward F21 with garlands, lights and even a Christmas tree. The Salvation Army did their rounds on Christmas Eve and sang us all carols (me and my dad broke down together over 'It Came Upon a Midnight Clear'). Porters whistled and sang Christmas carols as they wheeled me down for my daily X-ray, checking for signs of toxic megacolon. We all got a Christmas present in the morning - soap and a sponge - and even a Christmas dinner (although I was on a pretty limited diet at the time).

The nurses, particularly, handled Christmas with the utmost kindness and sensitivity. Although I'm sure on the inside there's plenty of other places they'd rather have spent their Christmas day, each nurse made such an effort to be smiley, helpful and make the day special. They worked tirelessly to keep us all well cared for, even though staffing was a bit short. They made the best of what first seemed like the worst Christmas ever - and for that I'll always be grateful.

One New Year's Day, instead of spending time relaxing with her family, my amazing consultant surgeon spent her afternoon sat talking me through stoma and J-pouch surgery, letting me ask any questions I needed and explaining things over again if I didn't understand. At this point, it hadn't been confirmed that I'd need the operation - that only became clear at about 11pm that night when I had the massive bleed out that made surgery the only option. The next day when I needed rushing into theatre, my surgeon and her team were there, removing my colon and saving my life.

Afterwards, I was so ill that I was admitted to the High Dependency Unit, where I was provided with round-the-clock-care. For the first week and a half of January, I was moved to a surgical ward where I was cared for until I was discharged. There I was introduced to stoma nurses, who spent the start of their January teaching me how to care for myself and get my dignity back before I went home.

While our NHS may not be perfect, I cannot thank them enough for the way they handled Christmas 2013, and every treatment I've had since. I have nothing but praise for the way that my condition has been treated over the years. The NHS didn't just save my life in 2013, they also saved Christmas, for me and all my worried family and friends. Their professionalism, dedication and kindness made a horrible time bearable. If the NHS was struggling that winter, I just didn't see it. I will forever be impressed with the care I received that meant I saw it through to 2014.

This Christmas, too, I hope that through negative press and politicians' warnings, we can remember just how amazing our NHS really is - and give credit to the medical professionals and hospital staff who give up their festive period so that we might see another one.

J pouch day 6

It's been a bit of a tough few days, so I haven't really been on here to update!

Nothing serious has happened at all, but I am in quite a bit of pain from the surgery in several areas. The stoma site wound hurts a lot more than I imagined it would, particularly when I'm changing the dressing. I'm also getting cramps in the pouch, in my stomach/abdo muscles, and a LOT of butt burn. It's obviously early days and I'm sure all of these things are going to improve, but when they're all at once they're quite uncomfortable.

Although I don't have accidents when I sleep, for the past few nights I've woken up several times to use the loo, which has disrupted my sleep quite a bit. I'm sure this will also improve. I think I need to accept that late night snacking is not a good thing - at least not while it's such early days! I'm still currently going to the loo about 8-10 times a day, but this will no doubt decrease over the next few weeks and months. I've had no leaks or accidents though, and it's possible to hold off going to the toilet for up to half an hour or even a bit more if I need it.

However, it's now starting to dawn on me that I really no longer have the stoma bag - and it's actually such a liberating feeling. The other day I came out of the toilet and had a momentary panic that my bag was hanging out/not tucked into my leggings - then realising with a smile that I don't have to think about that anymore. At moments when I've had the most awful butt burn, I've had a second of longing for my stoma back - but no more than a second. I know that what I'm experiencing now will improve, and I'm really happy that I went through with the reversal.

I'm eating a mix of bland things - and I'm already gradually adding to my diet. I've now tried carrots, broccoli and soft-boiled cabbage, all of which down pretty easily. This was the platter of snacks I ate the other night - all went down a treat:

I'm currently resting most of the time and putting my feet up - I'm catching up on lots of daytime telly! I finished off the last of my Christmas shopping online today, which my dad is kindly going in to pick up for me. In the next few days I'm hoping to start some holiday reading for the next uni term - at least I can do that with my feet up.

On Monday I'll be giving my pouch its first 'outing' as me, my parents, my best mate and her parents are going round the corner to the pub for a meal. It's pretty much in sight of the house, so not exactly a monster milestone, but it's definitely a start somewhere.

J pouch day 3

I've been discharged and sent home today! :)

Last night, I dropped my phone down the toilet (it survived), accidentally ripped a cannula out of my hand as I pulled on my dressing gown and had a pretty bad nights sleep. I woke up in a pretty bad mood, but when I was told I'd be discharged today it definitely cheered me up!

As my bowel has started working, the surgeon decided I was well enough to go home today - finally got back at around 6pm. I've had an easy evening in front of the TV eating some tea and chilling out!

Back home!

My pouch is working pretty frequently - sometimes partially formed, sometimes liquid. There's still a lot of gas. I'm still quite bloated and my stomach is puffed up, which is pretty uncomfortable by apparently normal. In the past 24 hours, I'd say I'd gone to the toilet roughly 8-10 times, which sounds a lot but isn't as bad as I thought it would be!

Whenever I go, I have total control. I don't have to rush. I haven't had any accidents, not even sleeping. Although I do feel the need to go poop come on pretty quickly, I can hold it in when I need. For example, the hospital is 30 minutes drive away from home - I needed the toilet when I left, but decided to hold it in. I had no problem holding it all the way home!

I do have 'butt burn' pretty bad. This is because poo without a colon is very acidic - so my bum feels a bit like a ring of fire. I'm currently using Andrex wet wipes rather than loo roll, dabbing not wiping, and applying lots of Sudocrem/Bepanthen nappy rash cream afterwards, which is keeping the burn under control!

My scar is pretty neat, and it's sewn diagonally.

I do have some scar pain, and also pain from the bloating, but I'd actually say that the bloat is more bothering me right now. Under my ribcage feels really tight and sore. This is apparently normal but right now it's making me feel a bit miserable.

I'm eating small meals regularly, and sticking to bland things like white rice, crumpets and cheese, white bread sandwiches. I'm not going to try to add to my diet until the bloating has settled down. I'm still taking paracetamol and oxycodone when required.

It's definitely nice to be back in my own bed tonight!!