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.
One girl's gutsy journey from Ulcerative Colitis, to an ostomy bag, to a J pouch. Happy reading!
Thursday, 31 December 2015
Saturday, 26 December 2015
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).
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.
--
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.
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!
--
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.
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.
--
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!
--
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.
Friday, 25 December 2015
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
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
Sunday, 20 December 2015
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.
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.
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.
Thursday, 17 December 2015
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!
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!!
Wednesday, 16 December 2015
J pouch day 2
Today is the second day with my connected J-pouch. It's already been pretty exciting as at 4.30 am this morning I had my first 'poop' from down below in nearly 2 years (oh, the simple pleasures!)
I've been a few more times since - it's very liquid now, but I have total control and no leakage. This is pretty normal in these very early days.
At the moment I'm really quite bloated, but that's largely cause of the morphine pump I'm on. I really don't like morphine - it makes me dizzy and sick, and yesterday had me projectile vomiting. I should be changing onto oxycodone/contin sometime today, which I tolerate much better!
The stoma site hurts more than expected, but I guess it's quite a deep wound after all! At the moment it's covered just with one dressing - I haven't actually seen the wound yet cause it hasn't been changed. From what's been said, I think it's been left slightly open - they have to do this in case it gets infected (quite a high chance where a stoma has been reversed)
I've been on a few drips overnight as I'm quite dehydrated from the anaesthetic, but this morning my blood pressure is back up from a low! I'm really starving and pretty much having to limit myself from going overboard and eating too much too soon.
Here's my finished tum - op 1 scar down the middle, op 2 with the little keyhole scar above the dressing (and another below), and op 3! My stomachs still pretty puffy with air from the surgery/bowels waking up.
Today I'm hoping to eat a little more and for the bowels to properly get working - I may even be home within the next few days!
Tuesday, 15 December 2015
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.
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.
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!
----
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!
Monday, 14 December 2015
Takedown tomorrow!
After nearly 2 years, what will be 3 operations and countless memories in between...
This time tomorrow I will be bag free!
Thank you to everyone who has supported me throughout my journey at This Girls Got Guts. Tomorrow will mark an exciting new chapter in life that I can't wait to start.
I've been drinking my pre-op carbohydrate drinks, and came back from London on the train today. After a lovely meal this evening with family, I'm laid chilled out with the TV winding down for an early start tomorrow.
The past 2 years have been full of happy memories - and there's been nothing I can't do with my stoma. Although I'll be glad to wave it goodbye, I'm safe in the knowledge that if for any reason I ever needed one again, life still doesn't need to have any limits.
Right now, I'm trying to keep an open mind regarding J pouch function - I know the beginning might be tricky. But I'm ready to take on whatever I'm given.
Fingers crossed for the next few days!
Friday, 11 December 2015
3 days until takedown: A total bag of nerves
This takedown has been coming for about 2 years now - so you think I'd be prepared and raring to go. I'd always envisaged that I'd be updating my blog regularly the week before, posting loads of updates, and feeling really excited about finally losing my stoma bag. But right now, I couldn't be feeling more different.
I've been absolutely consumed with anxiety the past few days - over surgery, possible complications, and the prospect of having a working J pouch. After my last surgery, when I suffered the huge bleed, I'm pretty terrified of going back under the knife. I'm worried for the pain, the recovery time and whether I'll be well enough to get back to uni in January, and what it'll be like to not have a stoma.
At the moment my anxiety is affecting my sleep, my appetite and my general health. I feel breathless, sick with hunger but sick when I eat, shaky and unable to get a good night's rest. I really didn't think I'd be like this, and I wish I could snap out of it somehow.
I know that I've wanted this reversal for a long time. And any time I freak out, I remind myself that I've come this far - this is the smallest of the three, and there's less chance of complications.
I'm going to Devon for the weekend to see family and take my mind off what's ahead. I'll be back on Monday, psyched up, ready to go and ready to write about this step by step.
Thank you for all your continual support!
I've been absolutely consumed with anxiety the past few days - over surgery, possible complications, and the prospect of having a working J pouch. After my last surgery, when I suffered the huge bleed, I'm pretty terrified of going back under the knife. I'm worried for the pain, the recovery time and whether I'll be well enough to get back to uni in January, and what it'll be like to not have a stoma.
At the moment my anxiety is affecting my sleep, my appetite and my general health. I feel breathless, sick with hunger but sick when I eat, shaky and unable to get a good night's rest. I really didn't think I'd be like this, and I wish I could snap out of it somehow.
I know that I've wanted this reversal for a long time. And any time I freak out, I remind myself that I've come this far - this is the smallest of the three, and there's less chance of complications.
I'm going to Devon for the weekend to see family and take my mind off what's ahead. I'll be back on Monday, psyched up, ready to go and ready to write about this step by step.
Thank you for all your continual support!
Friday, 4 December 2015
My last ever order of stoma supplies - and tips on ordering your own!
Note: In this post I'll be covering the UK system of ordering stoma supplies. I'm not sure how it works elsewhere - my apologies!
Today, what will be my last order of stoma supplies (hopefully ever) has just been posted out to me. It's a bit of a landmark. To say I've been ordering these things, month in, month out, for 2 years now, it's going to be weird not to have to do it anymore!
Ordering stoma supplies has not always been trouble free. I'd actually say it's one of the biggest inconveniences of having a stoma. Over the past few years I've had my fair share of 'last minute' moments - including forgetting to order on time, the GP not signing through my prescription, and once even a dash to A&E because I actually ran out altogether (yes, I felt pretty shame-faced on that day). So I've put together a whole list of tips and advice that you might find useful when ordering your own!
So - you've just woken up from your operation, and now you've got a new stoma to take care of. In hospital, you're provided with all the equipment you need in pretty much everlasting quantities, but what happens when you leave?
Coming home from hospital after surgery 1
When you've had stoma surgery, your hospital will assign you a stoma nurse. As well as teaching you how to change and deal with your new plumbing, he or she will also make arrangements for supplies to be delivered to you when you leave hospital. Your hospital will probably have a preferred 'brand' of stoma bags that they like to give to patients (more on brands in a moment), and that's the type of bag you'll wake up with. You'll get sent home with more bags the same as this.
Think of ostomy bags a bit like chocolate bars for a second (it's a stretch, I'll grant). Chocolate bars are made by lots of different companies: Nestle, Cadbury, Lindt etc.
Ostomy bags are much the same (unfortunately, that's pretty much where the similarities end, but never mind. Forget that weird comparison, it's late).
Lots of companies make their own 'brands' of bags. Just a few are: Coloplast, Pelican, Bullen, Convatec (and loads more). A bag's a bag, right? Well, you'd be wrong there. Bags from different companies can vary widely - in the material they're made of, their shape and their size.
You'll also get put in touch with a supplies delivery company, e.g. Charter Healthcare (the company I have always used). They don't actually make the bags, just deliver them. A company like Charter is usually able to deliver you bags from any brand that you choose.
Today, what will be my last order of stoma supplies (hopefully ever) has just been posted out to me. It's a bit of a landmark. To say I've been ordering these things, month in, month out, for 2 years now, it's going to be weird not to have to do it anymore!
Ordering stoma supplies has not always been trouble free. I'd actually say it's one of the biggest inconveniences of having a stoma. Over the past few years I've had my fair share of 'last minute' moments - including forgetting to order on time, the GP not signing through my prescription, and once even a dash to A&E because I actually ran out altogether (yes, I felt pretty shame-faced on that day). So I've put together a whole list of tips and advice that you might find useful when ordering your own!
So - you've just woken up from your operation, and now you've got a new stoma to take care of. In hospital, you're provided with all the equipment you need in pretty much everlasting quantities, but what happens when you leave?
Coming home from hospital after surgery 1
When you've had stoma surgery, your hospital will assign you a stoma nurse. As well as teaching you how to change and deal with your new plumbing, he or she will also make arrangements for supplies to be delivered to you when you leave hospital. Your hospital will probably have a preferred 'brand' of stoma bags that they like to give to patients (more on brands in a moment), and that's the type of bag you'll wake up with. You'll get sent home with more bags the same as this.
Think of ostomy bags a bit like chocolate bars for a second (it's a stretch, I'll grant). Chocolate bars are made by lots of different companies: Nestle, Cadbury, Lindt etc.
Ostomy bags are much the same (unfortunately, that's pretty much where the similarities end, but never mind. Forget that weird comparison, it's late).
Lots of companies make their own 'brands' of bags. Just a few are: Coloplast, Pelican, Bullen, Convatec (and loads more). A bag's a bag, right? Well, you'd be wrong there. Bags from different companies can vary widely - in the material they're made of, their shape and their size.
You'll also get put in touch with a supplies delivery company, e.g. Charter Healthcare (the company I have always used). They don't actually make the bags, just deliver them. A company like Charter is usually able to deliver you bags from any brand that you choose.
I have always used Coloplast Sensura 1-pieces - they're brilliant!
Although you'll get sent home from hospital with one brand of bag, that doesn't mean you have to stick to it if you start having issues. Different brands cater for different ages, needs and body shapes. Now's your time to shop around. ALL of the major ostomy brands are willing to deliver samples to you absolutely FREE (yep, I said free) - just google their website and request samples (there's usually a form to fill out including type of stoma/address/op date). Try any bags you like. You've got this new stoma - you may as well treat it to some presents to welcome it into the world.
There's also a whole load of 'extras' out there to sample - you think of it, it probably exists somewhere. Paste and mouldable rings for extra security, one or two piece bags, little packets of gel that 'thicken' your output, special 'aloe vera' extender strips. Hell, there's even these cute little spray bottles that supposedly you spray into your bag and make it smell like peppermint and grapefruit. YES, these things do exist, and YES, I've sampled them.
If you actually like any of these items, you can add it to your monthly order. Stoma supplies, on average, are ordered once a month. A typical order (without any fancy extras) usually consists of:
- Stoma bags
- Adhesive remover spray
- Disposable bags
- Dry wipes
- Wet wipes
After this, extras can be added on if needed/desired.
As of late 2014, all stoma orders need to be signed off by a GP before the delivery company will send anything out. This is where it can get complicated, but this is how the system is MEANT to work:
1) You order the supplies you need for the month, 2 weeks in advance of when you will need them, either online or over the phone with your healthcare company. E.g. "Hello, I'd like to order 30 Coloplast medium sized bags, 2 bottles of adhesive remover etc"
2) Your job is now done! The healthcare company will fax your order through to your GP surgery.
3) The GP checks your order and signs it off. This can take up to 14 days. (after about 9 days, your healthcare company will start sending them casual reminders by fax) The surgery then faxes the signed prescription back to your healthcare company.
4) The healthcare company delivers the supplies to you by courier service.
If this works all to plan, you're good to go. However, some of the issues I've encountered over the years have been:
- You register with a new GP and because you're a new patient they forget to sign your prescription/don't register that this is something you need every month
- I've ordered less than 2 weeks in advance
To be fair, it's usually my fault and the latter. Saying that though, if you do make a mistake and forget to order, it is always worth ringing your healthcare company and pleading your case - more often than not, they are willing to send an emergency sample order to tide you over until the actual delivery comes through e.g. a couple of spare bags.
In the case of the first problem, I ordered well in advance, but the new GP I'd signed up to was actually really awful (I ended up transferring elsewhere) and just completely forgot to sign the prescription, despite multiple reminders both from me - getting gradually more tearful - and from Charter healthcare. (They also had this awful receptionist who used to shout out your personal medical details across the room - OH SO YOU USE A STOMA BAG DO YOU, WELL MY SON HAS A SKIN CONDITION AS WELL SO I UNDERSTAND EMBARRASSING DISEASES. In front of a queue of 7 people. No, really.)
Unfortunately, stoma supplies cannot be 'bought' from pharmacies - the only way to get them last minute is a visit to A&E, where you sit looking completely well and healthy and feeling pretty awkward.
To avoid this issue, make sure your new GP knows that this is an urgent thing. Write a letter. Phone call. Even make an appointment and talk it through in person.
So, how much is an 'acceptable' amount to order? In the first couple of months after your surgery, your GP will probably allow you to order more supplies/order more frequently, allowing for mistakes and changing your bag more regularly. After about 3 months, though, they'll expecting you to be ordering one lot per month, and a reasonable amount of supplies (so not excessive). If the GP thinks you're ordering too many things, they will knock things off your order (usually without telling you) before putting the prescription through.
Quite often, if they do this, you probably don't need whatever it is they've taken off - but if you're really worrying and you're adamant that it's something you need, the best place to go is back to your stoma nurse. Explain that your order is getting refused, and tell your nurse why you need that amount of that particular item. If you have a legitimate reason, then the stoma nurse is able to get in touch with your GP, explain, and the prescription will most likely be accepted in future.
Don't worry about running out of bags. Delivery companies deal with this sort of thing all the time, and can be really helpful in sorting out issues. If you're ever really desperate, they will not refuse to send you emergency stock. A good delivery company understands just how sensitive an issue supplies can be - and most of all, they want you to keep on using them!
They can also recommend new products to you. When I was having issues with my loop stoma, the advice I was given from my healthcare company was amazing - with small adjustments of wearing a belt/using paste not rings, my quality of life and comfort improved in huge bounds.
Although you'll get sent home from hospital with one brand of bag, that doesn't mean you have to stick to it if you start having issues. Different brands cater for different ages, needs and body shapes. Now's your time to shop around. ALL of the major ostomy brands are willing to deliver samples to you absolutely FREE (yep, I said free) - just google their website and request samples (there's usually a form to fill out including type of stoma/address/op date). Try any bags you like. You've got this new stoma - you may as well treat it to some presents to welcome it into the world.
There's also a whole load of 'extras' out there to sample - you think of it, it probably exists somewhere. Paste and mouldable rings for extra security, one or two piece bags, little packets of gel that 'thicken' your output, special 'aloe vera' extender strips. Hell, there's even these cute little spray bottles that supposedly you spray into your bag and make it smell like peppermint and grapefruit. YES, these things do exist, and YES, I've sampled them.
If you actually like any of these items, you can add it to your monthly order. Stoma supplies, on average, are ordered once a month. A typical order (without any fancy extras) usually consists of:
- Stoma bags
- Adhesive remover spray
- Disposable bags
- Dry wipes
- Wet wipes
After this, extras can be added on if needed/desired.
As of late 2014, all stoma orders need to be signed off by a GP before the delivery company will send anything out. This is where it can get complicated, but this is how the system is MEANT to work:
1) You order the supplies you need for the month, 2 weeks in advance of when you will need them, either online or over the phone with your healthcare company. E.g. "Hello, I'd like to order 30 Coloplast medium sized bags, 2 bottles of adhesive remover etc"
2) Your job is now done! The healthcare company will fax your order through to your GP surgery.
3) The GP checks your order and signs it off. This can take up to 14 days. (after about 9 days, your healthcare company will start sending them casual reminders by fax) The surgery then faxes the signed prescription back to your healthcare company.
4) The healthcare company delivers the supplies to you by courier service.
If this works all to plan, you're good to go. However, some of the issues I've encountered over the years have been:
- You register with a new GP and because you're a new patient they forget to sign your prescription/don't register that this is something you need every month
- I've ordered less than 2 weeks in advance
To be fair, it's usually my fault and the latter. Saying that though, if you do make a mistake and forget to order, it is always worth ringing your healthcare company and pleading your case - more often than not, they are willing to send an emergency sample order to tide you over until the actual delivery comes through e.g. a couple of spare bags.
In the case of the first problem, I ordered well in advance, but the new GP I'd signed up to was actually really awful (I ended up transferring elsewhere) and just completely forgot to sign the prescription, despite multiple reminders both from me - getting gradually more tearful - and from Charter healthcare. (They also had this awful receptionist who used to shout out your personal medical details across the room - OH SO YOU USE A STOMA BAG DO YOU, WELL MY SON HAS A SKIN CONDITION AS WELL SO I UNDERSTAND EMBARRASSING DISEASES. In front of a queue of 7 people. No, really.)
Unfortunately, stoma supplies cannot be 'bought' from pharmacies - the only way to get them last minute is a visit to A&E, where you sit looking completely well and healthy and feeling pretty awkward.
To avoid this issue, make sure your new GP knows that this is an urgent thing. Write a letter. Phone call. Even make an appointment and talk it through in person.
So, how much is an 'acceptable' amount to order? In the first couple of months after your surgery, your GP will probably allow you to order more supplies/order more frequently, allowing for mistakes and changing your bag more regularly. After about 3 months, though, they'll expecting you to be ordering one lot per month, and a reasonable amount of supplies (so not excessive). If the GP thinks you're ordering too many things, they will knock things off your order (usually without telling you) before putting the prescription through.
Quite often, if they do this, you probably don't need whatever it is they've taken off - but if you're really worrying and you're adamant that it's something you need, the best place to go is back to your stoma nurse. Explain that your order is getting refused, and tell your nurse why you need that amount of that particular item. If you have a legitimate reason, then the stoma nurse is able to get in touch with your GP, explain, and the prescription will most likely be accepted in future.
Don't worry about running out of bags. Delivery companies deal with this sort of thing all the time, and can be really helpful in sorting out issues. If you're ever really desperate, they will not refuse to send you emergency stock. A good delivery company understands just how sensitive an issue supplies can be - and most of all, they want you to keep on using them!
They can also recommend new products to you. When I was having issues with my loop stoma, the advice I was given from my healthcare company was amazing - with small adjustments of wearing a belt/using paste not rings, my quality of life and comfort improved in huge bounds.
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