3 weeks: Ups and downs

It's now just under 3 weeks since my second operation, and 10 days since I was discharged from hospital. Things are progressing pretty well on some fronts, and not so well on others. I can't help but feel really pleased with my progress in some areas, but really frustrated with certain issues at the same time!

The other night, I went out of the house for the second time since the surgery, but this time to a proper event - a close friend's family garden party. It was a really lovely evening and I had the chance to catch up with some good friends that I hadn't seen for a while. I also had a whole range of different foods at the buffet - it's safe to say that the low fibre diet has gone out of the window, and I'm back to adding in all the naughty things (like veggies with skins). I even had a bit of sweetcorn the other day! Nothing has caused a problem yet, so touch wood I'm hoping that eating is going to be just as varied with the loop stoma as it was with the end one.

I surprised myself with how well I felt at the party, and although I thought I'd have to leave quite early, we stayed as late as anyone else! I was sat down for the majority of it, but that didn't really matter as everyone else still gathered round for a catch up.

Back on form for the party!

So that evening we had a really brilliant time. I'm trying to focus on stuff like that to ignore the stuff that's been going wrong lately - like the loop stoma. After 17 months with the end stoma, I really thought I had the hang of this bag business by now, but apparently not. Nothing really seems to be working to solve my problems, which is frustrating.

Right now, I can't seem to keep a bag on for more than about 6 hours without the thing starting to leak. It's only the tiniest amount, but I can feel it burning the skin. This has happened so many times that around half of the stoma, the skin's now completely burnt away, leaving it totally raw. Where it's raw, it's turned really watery, which makes the bags stick even less - it's a bit of a vicious circle really, as the more it leaks the more the skin gets damaged, and it becomes more watery, which means more leaks. It's also pretty damn painful. In an effort to solve this, I've ordered no end of samples - washers, and paste - both of which have so far done absolutely nothing. Washers won't even stick to the skin that's raw and damaged, and the stoma's so flat to the skin that they don't really work anyway. Paste works a little better, but it's still not quite the answer. I've even used powder on the damaged skin, which is great at first, but doesn't seem to help for very long. I'm getting through so many bags a day that I'm quite worried I'm going to run out and exceed my allowed amount.

Added to this, I'm also having a problem with peeing! It's pretty difficult to pee at all, like it's some sort of partial retention. This is currently the source of a lot of annoyance. I'm hoping it's a temporary thing, and not some damage from scar tissue or something similar. I guess only time will tell. I'm just hoping it doesn't get worse!

My mood right now

These issues together have got me quite down lately. I'm just so sick of changing bags all day long. I think a stoma doesn't have to limit your life, when it's working well. When it's playing up, it can be a real pain in the disused ass. Right now, I wouldn't feel that confident to go anywhere that I couldn't rush home quickly - and it shouldn't be like that. Fortunately, I don't have to go anywhere for a while yet, so I'm hoping things will resolve before then. I've got another visit from my nurse in a few days, when we'll hopefully find a solution to the problems I've had. Until then, I'm just going to stay in the house and chill out.

Day 16: First trip out

Today, I ventured out of the house for the first time since before my surgery. Seen as all I've done since leaving hospital is chill out on the sofa, this was a pretty big achievement!

I needed to pick up some birthday presents, plus some thank you cards for my surgeon and the ward nurses who cared for me. My dad agreed to take me and mum in, drop us off for a couple of hours, then pick us up.

It all went really well! Walking about was a lot more tiring than I thought it would be though, which was scary at first. I'm 20, so to walk for five minutes and feel breathless is a bit of a shock to the system. My legs ached and felt numb, and at one point I even had some pains in my chest. I do think that this is partly because I'm still very anaemic, something that's being treated with iron tablets.

I was quite nervous about the bag side of things - after all, it's been a bit temperamental lately. I had no issues though, and I couldn't help but remember back to my first op, leaving the house for the first time worried that I was going to have an embarrassing problem whilst out. I think sometimes you just have to push yourself and go for it, blow what happens, then when you get through it okay you can look back and realise that there was nothing to worry about!

Still, I was pretty glad when my dad came back to pick us up, and getting into the car I was dozing the way home. I got back and got straight onto my sofa, worn out, but with a great sense of achievement.

As my friend said the other day, I'm like a butterfly waiting to come out of its cocoon!! (This made me smile a lot)

Looking forward to the next outing :)

Day 15: Am I cured of Ulcerative Colitis?

It's occurred to me that since my last surgery to remove the final part of my colon (the 'rectum stump'), I now have no large bowel left at all in my body. Although these operations have been huge in their impact on my life, it's now finally possible to consider the fact that although new issues may come about as a result of surgery, whatever they are, at least they're not Ulcerative Colitis.

Without a colon, there is nothing left in my body to attack, meaning that I no longer suffer from the urgency, abdominal cramps and bloody diarrhea that comes hand in hand with UC. My small bowel, according to my medical team, is extremely healthy, and free from disease.

From a medical perspective, removing the colon is a 'cure' for this disease, the term 'curative' meaning no more symptoms typical of the condition. I now fit that description.

Of course, I know what you're probably thinking. "But isn't IBD 'incurable'?" It's a question that's difficult to answer. For example, Crohn's disease really is incurable, because of its tendency to appear in multiple parts of the body e.g. large/small bowels, stomach, oesophagus, mouth. You can't surgically remove all of these things, meaning that it's impossible to cut out certain parts and guarantee that the disease won't reappear elsewhere. The same goes for people whose diagnosis is complex or uncertain, for example 'Crohn's colitis', where the disease can't be confidently identified as being one or the other.

Some people would also argue that even for patients diagnosed with Ulcerative Colitis, the future is always uncertain because of the possibility that they will be re-diagnosed with Crohn's at a later date. I spent a long time confused about this, so asked my consultant for definitive answers on facts and figures. It's a common myth that Ulcerative Colitis can "turn into" Crohn's disease. This is NOT TRUE. For an absolute fact, from the doctor's own mouth. If a person with UC is diagnosed with Crohn's at a later date, it was ALWAYS Crohn's disease, but at the time of diagnosis, it looked like UC. Bear in mind that the two diseases are extremely similar in their characteristics, and occasionally, even the most experienced medics may confuse one for the other.

For example, at the time of a UC diagnosis that will actually turn out to be Crohn's, the disease may appear only in the colon. However, a decade down the line, disease may turn up in parts of the small intestine too, and then the diagnosis will be reconsidered. Statistically, this misdiagnosis apparently happens in around 10% of cases, a percentage that is decreasing all the time as biopsy techniques/understanding of both diseases improves.

Cured?

But regardless of this, for a person with definitive, clear-cut Ulcerative Colitis, removing the colon is curative of IBD symptoms. Some people consider this to be a real "cure". Others don't. So what's the logic behind this?

People who see colon-removal as a cure may consider the following things:
- They no longer have symptoms of UC. Sure, they may have other issues as a result of surgery, but they're not the same as having UC.
- No part of their body is now affected by the disease. If they were to undergo camera tests or other investigations, no ulceration or inflammation would be found.
- They may feel a great deal healthier than they did when they had UC: in fact, they may feel just as healthy as they did before UC came into their lives.
- It's quite refreshing to finally be able to tell people, "I'm cured". It feels like a life-changing achievement.

However, some people do not see colon removal as a cure, because:
- A 'cure' suggests treatment of a disease that leaves the body in the same condition it was before illness. Without a colon, your body and its function has definitely changed long-term. The condition has been treated, but not 'cured'.
- If you have complications, you may still feel ill after your colon has been removed. Although these aren't strictly UC, UC is the whole reason you were ill in the first place, so in reality it has been the root cause of your current issues.
- Saying you're 'cured' implies that you've got no further issues. This may mean that if you tell them you're 'cured', family members and friends might stop recognising that you still need certain allowances post-colon removal, such as limiting your diet or going to the toilet more often. It may create better understanding to say that you're still affected by disease.
- Although you no longer have intestinal symptoms after your colon has been removed, you may still experience joint pain and tiredness, which are associated with UC.


Personally, I'm not sure what I believe. On the one hand, I'm extremely grateful that I no longer have UC symptoms, and even recovering from surgery I feel ten times better than I ever did with colitis. I no longer have to spend my life looking for toilets, or planning day trips around them. On the other hand, I don't feel that removing one of my major body organs can be considered a real 'cure'. One day, we must hope that sufferers don't have to go through gruelling surgery, but instead that they might pop a few pills and be rid of the disease forever with their intestines intact. We can dream!

I think whatever you believe, being rid of UC symptoms can be a real blessing, and allow you to live a much healthier life than you would have with severe disease. It might not be the best solution, but presently, it's the best one on offer, and I'm grabbing it with both hands!

Day 14: How many stages?

Hello! It's been a few days since my last update, but to be honest there's not been too much to report. At the moment, every day is still a chill-on-the-sofa day. I'm gaining a slow and steady knowledge of daytime TV (Jeremy Kyle is on five times a day now. FIVE?!) while eating lots of good food and doing my best to take it easy. Although the surgeon was pretty sure that my complications were sorted when I left hospital, there's a small chance I could have another bleed if I don't take things slowly. Still, that's a great excuse to be chilling out!

The good news in, I'm in very little pain. The only pain I have is an odd twinge/throb from the bottom area (where my new pouch is), or the odd ache from my incisions, but one of those has healed completely already. My new stoma bag is settling nicely and I seem to have found stuff that works for me, although it's still a learning curve and I'm no way near as confident with it yet as I was with the last one.

I think I've realised by now that the loop and the end stomas are two totally different things! If you're facing going from one to the other, don't be discouraged or upset by the fact that you'll go from feeling like a pro to a rookie overnight. You learnt this before, you'll learn it again!

Me and Rosie competing for sofa space. Gerroff!

--

Now, onto my topic for the day - the actual ins and outs of what I'm having done, for anyone who's reading this and confused, or possibly looking at surgery themselves. Online, I've heard a lot of confusion about the practical side of J-pouch surgery that I wanted to clear up.

By the end of this journey, if all goes to plan, I'll have had three surgeries in total to make my J-pouch. This is the first thing that confuses people, as it's often listen online that pouches require two operations only.

In fact, J pouches can be made in one, two OR three stages, although one is very rare.

A One-Stage Operation - Removing the whole colon, creating the pouch and connecting it all in one go, without the need for a stoma. This is something written about online in medical journals, but in my time blogging and online I've never come across anyone who's had the one-step. It seems that surgeons are very reluctant to bypass the ileostomy. There's good reasons for this - connecting the pouch immediately doesn't give it chance to heal, and increases the risk of complications like sepsis. There's much greater scope for complications with this method. This seemed to be something done in the past, when pouch surgery hadn't been so far developed. Still, there are apparently some people who have had a one-stage operation and have gone on to own successful pouches.

A Two-Stage Operation - 1) Total removal of the colon (proctectomy), pouch creation and temporary loop ileostomy 2) Reversal of the loop ileostomy

This is the option offered to most people who have planned surgery who are relatively healthy at the time (you might not feel that healthy with your IBD, but you're still pretty 'well' as things go). After the first operation, you no longer have Ulcerative Colitis, as you have no colon left for your body to attack.

A Three-Stage Operation - 1) Emergency partial removal of the colon (subtotal colectomy), leaving the rectum intact, with an end ileostomy 2) Rectum removal (proctectomy), pouch creation and loop ileostomy 3) Reversal of the loop ileostomy

This is what I have had done. This is the option offered to emergency surgical patients. The rectum is left intact because this is the most 'fiddly' bit to remove and requires longer under anesthetic, something that a critically ill person cannot handle at that time. The surgeon just wants to whip out the most of that colon and bring you round, to give you the best fighting chance you've got. Unfortunately, this means that between 1-2 you will still suffer symptoms of Ulcerative Colitis in your rectum - bleeding, mucus and urgency, but without the poop!

If you have the two-stage op, you'll only ever experience the loop ileostomy. Loop stomas are usually flat to the skin (often requiring convex bags, as I discovered the hard way), more fluid, and have two openings (only one of which works). When someone said to me that this one would have two openings, I imagined something that looked like a figure of 8, or two stomas sat next to each other - and had visions of endlessly slaving away at cutting bags into 8 shapes... Haha. This didn't happen. It's a regular little circle like any other!

If you have the three-stage, you'll also experience the end ileostomy. Between the two, this is by far the easier to care for - and I'm not saying that as a newbie. It sticks out, it's easier to care for, and generally less active.

My old end ileo, which I had for 17 months. Miss ya, lifesaver!

Imagine stomas as babies for a moment (you have to care for them as such!) - your end is the well-behaved baby that sleeps through the night and doesn't cry, whereas your loop is the terror child that keeps you up and is always spitting out their dummy! Both can be cared for equally well, if you're prepared to suck it up and have that bit more patience!

The waiting time between these surgeries varies from person to person. Typically, between the creation of the pouch and the reversal of the loop ileostomy, you're looking at about a 3-6 month wait. This allows the pouch to fully heal before it's connected. You will also have a 'pouchogram' before your pouch is connected (a CT scan to check for any leaks).

For a 3 stage operation, there's no telling how long you might wait between 1 and 2. As long as your 'rectum stump' (the name given to the tiny bit of large bowel you have left) is controlled and not flaring, you may decide to wait a long time until you go for the next op. This may be because you need a long time to recover, because you don't want more big surgery just yet, or even because it doesn't fit in with your life at the moment. Your rectum can be treated with UC drugs e.g. mesalazines, steroids (usually in an enema or pessary form)

For someone who's had an emergency colectomy, it's actually sometimes quite inconvenient! (Damn you body, why did you have to try and kill me just at this specific time? FFS you could have waited until it suited me) Like me, I'd just started university when I got rushed in to have my colon removed. That meant having the rest of the year out - and it would have been even longer if I'd gone straight for operation 2. Instead, I went back to uni for the year and have had this next surgery in my summer holidays, so I had my end ileostomy for a total of 17 months.

So yes, if you're 3-stage, it's actually quite up to you. Although you have to bear in mind the slight cancer risk of the UC in the remaining rectum, some people keep their rectum stump for years. This particularly applies to women hoping to start families in the near future, as it's the rectum removal part of this surgery that can lead to a decrease in fertility. (I'll be covering this topic soon). Some women keep their end stoma until they've had their babies, then go on to have the two more operations for the pouch.

Having had two of the three now, the worst is over for me, as number 3 is a pretty minor operation in surgical terms (the after-effect is more psychological - the shock of actually using the bathroom like a regular again).

My end ileo, 1 year anniversary of operation 1

So, I hope that's cleared the stages question up. I'll be back to cover lots of other topics over the coming weeks - as always, thank you all for your support!

Day 11: Amazing nurse to the rescue!

Today has been a real duvet day. I've not moved from the sofa but stayed in my pajamas and watched just about every daytime TV show going! My parents and boyfriend have been around to look after me, and life is pretty chilled.

After last nights multiple leaking, my skin was still very sore, and I've been quite self conscious thinking it's going to happen again. So today I rang the helpline and this afternoon the most amazing stoma nurse came to help me :) She was such a lovely understanding lady and pretty much sorted my life out. Turns out I do need convex bags, and the template also needed a re-trim. She also rang Charter Healthcare and sorted out all my orders, making sure every address and GP detail was right. An absolute angel!

I'm quite aching and sore, but my tiny keyhole cuts are already healing. Its a lot different to my big scar the first time round, which was huge compared to this!

Last year, January 2014...

This time!

My pain is more just a general aching and stiffness, rather than actual hurting. It's more discomfort than pain. My weakness and general tiredness is partly down to anaemia - I've been discharged from hospital with iron tablets for that - so right now I'm just getting lots of rest and taking it steady.

Hoping to be back on my feet in a few weeks, but for now I don't feel too guilty about kicking back and taking in the daytime TV! ;)

Day 10: Discharge Day

So this evening, after waiting for my prescriptions in hospital, I was finally DISCHARGED and allowed home! :)

Getting out of hospital was such a wonderful feeling. Getting my two hospital wrist bands cut off felt a bit like Aladdin's genie getting his forever freedom, and now I'm home I can just take it easy chilling in the place I'm most comfortable!

Yes, that might sound a little dramatic - after all I was only in for 9 days, and the care I've received has been outstanding. But I wasn't sleeping well, I was getting restless, and just longing for bed and home.

Getting home was more tiring than I thought. Climbing the stairs makes my legs tremble, and after tea and bath I was really exhausted. And THEN, the stoma leaks started.

For some reason my little loop stoma has decided to wage war on my tiredness and so far today I've changed the thing a grand total of 9 TIMES. 9. With each leak, my hopes were getting that bit more bashed and my skin had begun to break and sting. After an end Stoma for 17 months, I thought the loop would be child's play and underestimated just how different the little bugger really is. It's flat to the skin, it's very watery, and it flows absolutely constantly, meaning you have about 0.5 seconds to whip on a new bag before it starts complaining!

By this 9th bag however, I was feeling pretty demoralised. My skin hurt really badly. I can't get help until tomorrow when the helpline is open. Would I actually have skin left by the morning?

Then I remembered something. 6 months ago, one of our neighbours very tragically lost his wife to bowel cancer. Knowing I had a stoma, he asked if I would take her old unused supplies off his hands, because it hurt too much to see them around the house. I did, but found that they were convex bags (with a curved shape base), and unsuitable for my end stoma, so kept them in my wardrobe hoping to send them to a medical charity.

And tonight it dawned on me - convexity might just solve this new issue. I dashed to put one on and for the first time today, my skin feels protected, itch free and doesn't sting!

I feel like it's our neighbour smiling down from somewhere up there and helping me out, looking after me when I'm at my wits end.

And now, I'm gonna crash out. Night folks!

Bye QMC!

Day 9 post pouch: When things don't go to plan

When I originally started this blog, I had a pretty naive view of what this operation would actually be like. I thought, "My last one was an emergency. It can't get tougher than that, can it?" I imagined this time would be a bit of a breeze - all planned, all to schedule, posting cheery updates every day or so with happy selfies about having my first meal, dealing with the new loop stoma, and pretty much sailing around the hospital ward over the moon that I was a step closer to the J pouch I'm aiming for.

I was wrong. Like, really wrong. This surgery has not only ended up tougher than the last, but my experience with it has been really quite scary. I'm in pain, I've got no energy and the meals I thought I'd be wolfing down I'm eating in tiny, bloating bites as my bowels wake up and slowly get moving again. I've been in hospital for nearly a week more than expected. I've not even felt ready to talk about what's happened with family, let alone blog it.

It's probably important to note here that I'm no longer an example of a 'smooth' J poucher. That's totally okay, but please bear in mind that's what happened here is very rare. People don't get this a lot. Please don't let this put you off. This operation still has a 95% satisfaction rate, and a 90% success rate. Surgeons are extremely highly trained and know what they're doing - you're in brilliant hands.

So what happened?

My actual surgery, Tuesday 9th, went brilliantly. It was short, uncomplicated and all done keyhole thanks to my awesome surgeon. The next day I was buzzing. My post op selfie was surprisingly on point.

The next few days were good. Friends came to visit. Everyone was really happy. My pain levels were pretty low, and I'd even started eating. So when I got a bit more tired towards the weekend, I put it down to needing better sleep and taking it more easy. There was talk of sending me home by the Saturday.

Then by Saturday evening, the bloating started. I'd passed a bit of blood but nothing too major. That's kinda normal anyway. It was only in the early hours of Sunday morning when I woke up with crippling pains and a sense of pressure in my stomach that things began to go wrong. I stumbled out to the loo, and passed out in the cubicle, pulling the call bell. I was bleeding heavily from my bum and new Stoma bag.

The next day was a blur. I was out of it, while examinations and CT scans confirmed an internal stitch had broken, causing massive bleeding. I received several blood transfusions and was pumped full of clotting agents. The scan also found that all the bleeding was coming from between the distal stoma end (between Stoma and bottom) and my bum, and the upper part of my bowel was healthy. This was an important distinction, because had this been different, I may have been looking at pouch removal and a permanent Ileostomy in the next few days.

According to med journals online, this sort of complication happens to 3 in 100 lucky people.

Over the next few days, I was put on complete bowel rest with an NG tube. My catheter was reinserted along with a rectal drain. I had oxygen, saline, wires going pretty much everywhere. These were some pretty bad days.

Since then, I've gradually improved, losing drains and wires one by one. Yesterday I started eating again, although my bowel is still waking up, so my bag is super fluid and I've got a lot of gas pain. My incisions don't really hurt much anymore though, which is a huge plus. My new Stoma is a little tricky to get to grips with due to its much flatter shape - but it's definitely easier than learning from scratch. 

My surgeon and his team have been absolutely amazing and totally dedicated to my care. I owe my life to them this week. Their quick decisions and good judgement meant Ive not only recovered, but I'm bouncing back. I'm now looking at Friday to maybe get home, and I'm being kept in observationally to check that the internal bleeding has well and truly stopped. I'm still passing old blood, but that's just stuff in there that needs to come out, it's nothing fresh. I'm absolutely exhausted and knocked for six, and spent today watching Disney and sleeping.

My lovely post surgery 'beak' aka NG tube

This experience has taught me lots of things. First off, while I'd love the chance at a pouch, if it all goes wrong and I end up with a Stoma for life, I really do not care. Genuinely. Having a Stoma is not a huge deal, and I've lived a perfectly normal life with one. When I was at my weakest, all I wanted was them to save me, bag or no bag. At that point my end goal changed. Sure, I want this pouch. It better bloomin work after all this trouble, but I've accepted that there's a slightly higher chance that it won't after my complications. That's okay. I'm here. Whatever is out there I'm happy, as long as it's living to the full.

And while I'm still going to be the same positive person, I'm stepping down off my soap box a bit. This surgery isn't the be all and end all. Some people would prefer permanent bags - a concept I found weird before, but totally understand now. Some people do not want to take this journey. That is perfectly okay. And while I'm still looking forward to the journey ahead, I know that while I'm strong, I'm not invincible. Sometimes things won't be all smooth and easy - sometimes this journey will be damned hard. But I came here to be honest, and honest I will be! This blog isn't a 'go out there and get a pouch now' blog, it's an honest reflection on pouch surgery, the good AND the bad.

Me and the boyfriend!

Big experiences change us. This has changed me. But this disease will still never beat me. It might try and kill me several times, but I'll be right back there kicking when it does. 

Today, my boyfriend took me in a wheelchair down to the hospital Costa. We got shakes, and sat in the sun in the hospital car park. It was a really small outing, yes. But I loved it. I'm appreciating every moment right now. Here's to many more.

My first outing - to the hospital car park

Day 4 post j pouch - morphine sickness

I've been unusually unresponsive to just about everyone today, which is unlike me, but that's because for the past 24+ hours just a single glimpse of my phone screen was making me really violently sick.

Trusty supply of bowls - my new best mates

What was this? Have my mum and dads dreams finally come true and the hospital have found a way of severing me from my iPhone addiction? (If you're reading this m+d I love you and I'm joking)

It wasn't just the phone making me sick, though. Reading. Eating. Drinking. Turning over in bed. By yesterday evening, unable to keep down any food or fluid and unable to do anything except stare at a fixed spot ahead of me (to stop the feeling that I was riding a boat out in a seriously choppy sea) all I could do is lie there miserably and wonder why this was happening.

The vomiting meant I quickly became dehydrated, so spent most of the day on a drip. This sickness has also left me pretty immobile, meaning I've had to keep the dreaded catheter for another day.

This needs to leave now!

Fortunately, my sick state had a simple solution - apparently my body just does not agree with morphine. This became clear when the sickness stopped completely after a late dose. Once we'd sorted this out, I'm now taking the much kinder oxycodone, feeling really comfortable and I've started eating and drinking again. Score! The phone sickness is also cured (sorry folks)

In other news - I was part of the medical student exams today, as they had to examine my tummy as part of an assessment. I'm a student myself so felt like I should offer some help! :p hopefully I was an acceptable patient model!

This evening I also had a massive (gross) leak from my new pouch. It's not properly connected yet, so nothing more sinister than a bit of fluid (there's too much bodily fluid around for my liking), but still quite scary. If you're reading this and it's happened to you, apparently it's all another bit of new-normal.

Sleep well folks! :)

Back to normality. Whew!

Day 2 post j pouch/loop Stoma

Today marks 2 days since I had my J pouch formed, my rectum removed and a loop Stoma made (to protect the pouch while it heals). It's been a tough ride so far - I said I'd be honest on this blog as I went along.

I've had a lot of bloating and gas pain, which is due to the bowel being handled in surgery. Last night I felt like I was going to burst, and my stomach looked about 9 months pregnant! I've been fortunate enough to have complete keyhole surgery, meaning that although I'm quite sore, it's really nothing compared to the pain of the open scar of my colectomy.

One of just two tiny incisions!

The surgeon made two little cuts above and below my new Stoma bag - then carried out the rest of the surgery through my existing Stoma site and a smaller hole on the other side of my tummy (now where the surgical drain is).

One teeny tiny drain!

I dreaded having another surgical drain, as I have a real phobia around them, but this one is a lot smaller than the one used for my colectomy, and I can't really feel it. It should be coming out today, along with the epidural.

I've experienced a lot of bleeding from the back passage - which is pretty scary but apparently normal.

The only colon I've got left is cuddly

The best part of this whole thing is I no longer have any colon at all. So no colitis. I've just got this cuddly colon, but he's totally healthy! ;)

Hoping to get up and about a bit today, and jog some of that dreaded wind out of my system!

I'm being looked after brilliantly here at the QMC and I'm in great hands. Here's to another update soon.

1 day to go: Operation preparation!

This is really it - tomorrow's the big day! No more countdowns, no more waiting, and no more wondering. All day I've been watching my phone, waiting for any last minute hitches or cancellations, but I've not heard anything so I assume it's all going ahead as planned.

I've spent the day with friends, my boyfriend and my parents, going out and about round town, then a meal in the evening. I wanted to make today as normal as possible, but surprisingly I'm not actually as nervous as I thought I'd be by now. I guess I've had so long to think about this, that by now I just want it over and done with.

I've been drinking my lovely lemony pre-op drinks (hmmm, lovely) - only three more to go! - and had my final meal - a gorgeous all-you-can-eat, all nationalities buffet. Yum!

Tomorrow at 7am, I'll be arriving at the Queen's Medical Centre, getting into my bed, changing into that wonderfully flattering gown, and being put to sleep to make a pouch. It doesn't seem real, to be honest, which is maybe why I'm not actually that nervous. I'm pretty tired though, so I think I'll sleep well tonight.

Because everyone loves the taste of chemical lemons

 

 

Tomorrow, the real journey begins. Bring it on!

4-2 days to go: 12 thoughts on having a stoma

As of tomorrow, this blog's focus is going to turn to what I actually created it for - recording my journey towards a J-pouch, step by step, good times and bad. For me, this is the end of an era. Saying goodbye to my end stoma, and hello to my loop stoma, is something I find exciting, scary, happy, uncertain in equal measures. On Tuesday, when my next op happens, I'm one step closer to the pouch-life that I'm looking forward to - but it'll be a step that also brings a lot of changes, which I'm prepared for.

So, on my last 'end stoma post', I thought I'd go a la Buzzfeed and do one of these thinga-me-jigs. Happy reading!

12 thoughts on having a stoma

1. I've got to have a WHAT?!

Whether your operation is planned beforehand or done in an emergency, and even if you've known for some time that you'll need a stoma, your first reaction is probably going to be one of shock. And seriously, who can blame you? You've just had someone sit you down and tell you that despite all your life spent pooping from your backside, it's now going to be coming out of a hole in your tummy instead. Whether the thought of a stoma upsets you or not, the concept of having a bag and what that actually means is a big thing to get your head round. 'Scuse me?


2. This is the worst thing that's ever happened to me.

For a lot of people, the thought of having a stoma seems like the worst thing in the world. Fears that will turn out to be untrue - but which are perfectly understandable when facing the unknown - might fill your head - 'I'm going to smell horrible', 'It's going to make me ugly', 'It's going to stop me living the life I want to lead', 'It's going to be disgusting', 'People will judge me and/or avoid me'. I can tell you categorically that in a year's time these will all have been shown to be false - but if you're at this stage right now, it's not going to make any difference even if I was the oracle of truth - you still might not believe that things will be okay. And that's okay. You're perfectly entitled to feel rubbish about this.

3. This is the best thing that's ever happened to me.

However, particularly if you've had IBD for a long time, you might feel like now is the right time to have a stoma. For someone who's suffered for years, enduring multiple medications and humiliating accidents (not to mention constantly feeling like you've been hit by a train), having your traitor bowel removed might actually seem like a blessing in disguise.

4. I'm so tired now, I don't care.

When you first get out of surgery, you'll probably feel so drained and exhausted that your stoma will actually be the last thing on your mind. I actually found that this lasted for a few weeks. Getting better, not my stoma, was priority number one. In hospital and at home, I had help from nurses with changing my bag and sorting everything out, so apart from getting used to the feel and look of the bag, I was more focussed on taking my painkillers on time, the pain that happened if I ever forgot, and sleeping in every spare moment I had (when I wasn't wide eyed at 3am on steroids)

5. Wow - I actually feel a bit better now.

 

Even in the first few weeks, it's amazing how much better you'll feel without the stress of a rubbish colon to deal with. Your tiredness has already improved, your pain is disappearing, and your life has actually begun to belong to you, not the toilet. At this point you'll probably drift through the hours wondering how on earth you can lose a major organ and actually feel better as a result. Bodies are weird.

6. But my colon's gone, and I have to wear this bag, and LIFE'S NOT FLIPPIN FAIR

Of course, that's not to say that every day will be sunny. It's common and completely normal to feel a whole range of negative emotions after stoma surgery. These will probably be made worse by the fact that you're tired, in pain, and fed up of being stuck in bed. You might feel angry, like this isn't fair, 'why me?', or simply feel down at such a huge change in your body image. It is even possible to 'grieve' for the colon you've lost - with thoughts that you're different from everyone else, that your body will never be the same. It's important to remember that this is expected after any major surgery, let alone such a life changing one. If you feel like you can't cope, it may help to talk to a loved one, join a support group or talk to your GP. Whatever you do, don't beat yourself up for feeling this way - give yourself a bit of slack after you've gone through such a big ordeal.

7. But maybe there's some pros to having this stoma?

On your good days, you'll begin to realise that having a stoma isn't the hellhole you expected it to be. It's challenging, but nothing you can't handle. You might actually dare to hope that this operation has improved your life, not ruined it. As you gradually get back to normality - whether that's starting back at work or school, getting off your painkillers, going on small trips out - you start to understand that having a stoma doesn't stop you doing these things. In fact, you're back in control, and might actually be able to have a trip out of the house without searching high and low for a toilet.

8. I'm up and down so much, it confuses me

But there's still some bad days, and that's totally fine. Even months down the line when you feel like you're okay with everything, after a tough day at work or feeling generally down for whatever reason, those negative emotions surrounding your stoma may return. It might feel like you've fallen right back to square one again, and by this stage you might think you're being stupid, or should have got used to it all by now. Other days, you'll be super positive and happy, but this isn't one of them. Take a deep breath, sleep on it, and wake up the next day stronger than before, ready to move on.

9. Hmm. I could get used to this bag life.

After all, caring for your stoma is becoming easier by the day. It’s no longer a big deal to change your bag, but another part of the daily routine, like eating breakfast or brushing your teeth. You’ve got used to your new plumbing and how it works, and you’re actually pretty happy. You’re getting back into all the things you used to enjoy, and realising that this stoma hasn’t prevented that, but made life a hell of a lot easier.

10. After all, my stoma did save my life. It's pretty awesome, actually.

In fact, this little bag saved your life! It’s the reason you’re here right now, spending time with your family, enjoying your hobbies, and living on past IBD. For people who were extremely ill when they had their stoma (as most people are), you might finally start to really appreciate the benefits that stoma life can bring. Things could have turned out so much worse, but thanks to this little bag, they didn’t. That’s a very small price to pay.

11. I don't care what you think.

If you’ve had any negative reactions before now (and if you have, fyi they are an a**hole – despite the fact that you no longer use yours), after months down the line you’ll begin to care a lot less about what people think of your stoma. That doesn’t mean you have to share it with everyone – some people prefer to tell only their close circle about their bag – but you’ll start feeling comfortable in your own skin. You have a problem with how my poop smells? How about you sit for a few minutes with the smell of yours? You have a problem that I had to have this life-saving operation and now wear a bag, without which I wouldn’t be here? So the sh*t might come out of my stomach, but at least it’s not coming out of my mouth as well. I didn't get this bag for your approval. Touché.

12. My stoma? Oh yeah, I forgot about that.

As time goes by, although it seemed like such a big thing at the time, memories of your stoma operation will begin to fade. After a year or more, you’ll have achieved so much that this surgery will just be another thing in your past. Something you’ve moved on from, and beaten once and for all. If complications arise, it will be hard – but for a person who is well with a stoma, life really does go on as normal, and it’s miles better than before. When I go about my day, I genuinely forget about my stoma. Even when I go to the toilet, it’s not some big event – emptying my bag is easy and super quick, and changing it is routine. By this stage, you’ll probably be looking back and wishing you-then could see you-now. You’ve got this far, and life’s good!

 

6-5 days to go: Why a stoma beats having severe IBD any day

Instead of covering a stomacare topic, today I decided I wanted to focus on something a bit more broad: what having this stoma has actually meant for me. As I get closer to my next operation, I can't help but think back to my last one, where my emergency stoma was formed and the majority of my colon removed. The thought of surgery terrified me, and a bag repulsed me. I only wish that 19-year old me could have pushed away some of her fears and seen what a fantastic life lay ahead once UC had been banished for good.

Because the real honest truth is, having a stoma bag beats having severe Ulcerative Colitis. Any day. Instead of the fatigue and blood loss that keeps you bed or house bound, removing your crappy colon gives you energy that you never thought you'd get back. Rather than losing weight (or gaining it on steroids), and watching every morsel of food you eat, you're suddenly able to eat masses of salad, corn and whatever else in abundance without ill effects. Instead of leaving the house every day worried you'll have a mortifying accident, a stoma bag very rarely catches you out with an urgent demand for the toilet - 95% of the time (the rest being when I'm ill, usually) I'm able to casually drift into the bathroom as and when it suits me.

Of course, when your doctor first tells you that you're going to have to poop out of a hole in your tummy into a bag, these good points are not going to be the first things on your mind. Instead, you'll probably feel mortified. Devastated. You'll have frets and worries over appearance, smells, 'will anyone every fancy me again?', and the feeling that having a stoma somehow makes you 'gross' or 'different'. I can fully sympathise with this sort of thinking, because I've been there. My first reaction to being told in hospital that I'd need a stoma was a resounding, screaming NO. I begged doctors to keep me on immunosuppressants for an awful, pointless two weeks (that did nothing for my UC, but just made me even sicker). I screamed at a nurse that I'd rather die than have one of THOSE. I cried, and cried, and cried.

To me, a 19 year old who only 2 weeks ago though she had a bad stomach bug, suddenly being told I had this incurable disease - oh and by the way, you now need a poop bag - felt like the end of the world. I thought this little bag would spell the end of my life as I knew it. And it did, sorta. In the best way I could ever have asked for.

My 17 months with my stoma have been some of the best of my life. As I displayed symptoms but wasn't officially diagnosed with UC for a long time, the pain and tiredness I'd suffered for so long had become an unexplained normality. Yet all of a sudden, here I was, pain free, full of energy and able to get on with everything I loved. This year I've gone and completed a full year of university (after having to drop out because of op 1), been abroad twice, been to my first festival, volunteered, camped, wild hiked, been swimming, drinking, theme park rides, out on the town, learning new skills and hobbies, enjoying myself as a 20 year old should be able to.

Of course, I wasn't happy overnight. The down moments persisted for around 9 months or even longer - and one day I'd be feeling great, the next I'd be ridiculously insecure. It took a long time to learn to accept and love my body for what it is - just as beautiful as any other, with a little bag stuck on it. No biggie.

Having a stoma has taught me to throw away my vanity and focus on what's important. We all have body hang ups, but the odd shaped nose and wobbly legs that were always my pet hates have faded into insignificance. It's a healthy nose, a good pair of legs. They're not perfect but they work as they should and that's enough for me. I've accepted my body and myself a lot more, and for that I'd say I'm even more body confident than I used to be pre-ostomy.

So when you're faced with stoma surgery, remember this. It will not be easy. It'll be one of the hardest things you'll ever do. You're allowed to rant, and scream, and shout. You're allowed good and bad days. But when people say 'this op's amazing after a while, just you wait and see how happy you'll be', try holding back that inevitable eye roll. It really does mean a better life. That's no exaggeration, no joke. It can take a while for the mist to clear, but a stoma can mean the start of something completely new. You can do it - one day you will get there.

A bag is a small price to pay to get back the good health you once lost.

8-7 days to go: Clothes and accessories with a stoma

I didn't get a chance to post yesterday, because my best friend and I spent all day going round pet shops looking to get her a pair of guinea pigs! We were driving around for hours, because at this time of year a lot of girls are bought for breeding, and so are pretty hard to find. Eventually, we found a pair of tiny fluffballs and my mate was really happy! They're adorable!

I'm thinking carefully what topics I should cover over the next week or so. If there's anything you'd particularly like me to cover, then please drop me a message over Facebook or leave a message in the comments below!

Today's topics are slightly more female orientated, so I apologise to my male readers - but the accessories bit may still be useful to you.

8 days to go: Clothes with a stoma

Hiding a new bag under your clothes, you might worry that after surgery you'll have to throw away the majority of your wardrobe. Trendy, tight fitting trousers, skirts or dresses might seem impossible - won't tight clothes stop the stoma from working? Will my bag show through my clothes? And if it doesn't when it's empty, what happens when it starts to get full?

The worry that you'll be stuck in clothes resembling tents for the rest of your post-op life is a big concern to a lot of people. Even though what you can and can't wear might seem a trivial concern after life-saving surgery, it's more important than you might first think. What we wear is a big part of our image and individuality, and the thought that we might have to completely change our image post-stoma is a very real worry. "This illness has robbed me of so many good times - and now, just to top it all off, it's going to force me into baggy, unattractive clothes that will make me feel even more insecure about my new body than I already do. Fan-flippin-tastic."

The truth is, once you've got the hang of it, dressing with a stoma doesn't have to be baggy, oversized or frumpy. Yes, there are some things that don't work as well as they used to, but not many. Most of your current clothes will be just fine to wear post surgery, including crop tops, tight skirts and dresses.

Showing my scar but hiding my bag in crop top and high-waisted shorts

Things I've found that really don't work post-surgery are: (and this isn't the same for everyone)

- Low-rise or super low jeans - in fact, I only wear high waisted jeans: these are usually too low for me to tuck in my whole bag, leaving a bit of the bag sticking out of the top. Personally, this makes me feel self-conscious and I prefer to have the whole thing tucked in.

- Low rise leggings - same reason.

- Tight fitting skirts or shorts that are LIGHT in colour e.g. beige or white - even if you're wearing support pants, you can sometimes see the outline of your bag in a straight, tight skirt that isn't a dark colour.

Everything, and I mean EVERYTHING else, works a treat!

There's actually only one set-in-stone rule to remember when dressing with your stoma: Never wear bottoms with a waistband that sits directly over your stoma, because this will cause stoma irritation/damage and possible bag leakage. However, other material can sit over the stoma e.g. tight skirts, the leg of a jean - just NOT the waistband. This does not cause a leak.

Bag? What bag, my Gucci?

There's different ways to deal with your bag when getting dressed, particularly into trousers or jeans. Some people prefer to tuck their bag into their jeans/tights/leggings (like me), or other people prefer to let their bag hang over the waistband of their jeans but then wear a long top to cover it. 

For looser clothes like leggings (which have become my best friend, they're so ridiculously easy and comfy), you won't need to wear any support underwear. However, for tighter clothes e.g. tight dresses or skirts, wearing support underwear can help to disguise the shape of a bag completely. See more in my next section on accessories!

While at first you might feel more comfortable in baggy, concealing clothes, try on new things one at a time and see how you get on with them. This is how I discovered that I now preferred high waisted jeans - for some people, the top of their bag sticking out of their jeans doesn't bother them, but for me, I found it irritating so went high-waisted all the way. Remember that modern ostomy appliances are designed for maximum discretion and a slim fit, meaning that pretty much anything you wear is good to go.

You could even try wearing clothes around the house at first, before testing them out in the great outdoors. Point I'm trying to make is, there's so many clothes you can wear with your stoma bag, even the ones you'd least expect. Don't rule them out just because you've had your op, because there's still chance to look glam with a bag in tow.

7 days to go: Accessories with a stoma

To make life generally easier post-stoma, there's a whole range of accessories out there to help with all aspects of life. I'm going to split these into categories: clothing, medical and other.

Clothing

1) Support underwear

Suitable for both men and women, support underwear is worn either on its own or over a pair of regular pants/boxers. There's a great range of styles and colours at www.comfizz.com, all of which are absolutely fantastic. I've got quite a few and absolutely love them, as they allow me to wear the dresses that I wouldn't otherwise be able to. They also come in varying degrees of tummy support - low level, for everyday wear, or high level, to prevent hernias when exercising.

They are quite pricey, so it's also worth looking in high street stores - their versions of support underwear are just as good. Primark does some fantastic ones!

You can get up to six pairs of support pants per year free on prescription via your stoma healthcare company.

2) Waistbands

Waistbands are a strip of material that literally covers the waist. They can either be stretchy and tight-fitted (see more on www.comfizz.com), or loose and more comfortable but less supportive (try www.nukunuku.co.uk). These can be great if you don't fancy stuffing yourself into support pants - which can cause indigestion and other gassy issues if worn every day.

3) Stoma bag covers

Covers made to fit your bag come in a variety of styles and shapes and can be found at www.stomawise.co.uk. Several people on the Crohn's and Colitis UK forum also make and sell them online. They don't do anything in the way of support, but they do cover a see-through bag, for people who are not comfortable with seeing inside. They're also quite trendy and some come complete with funny slogans ('my other bag is a Gucci!')

4) Intimate waistbands

More for the ladies again, sorry blokes - there's lots of products out there to cover your bag once you get back into intimate activity with your partner. Try the beautiful lacy waistbands from www.ostomysecrets.co.uk, or search 'waspies' in any good lingerie/corset store. You'll soon find what I'm talking about, and they work a treat! They can also really help to boost your confidence.

5) Swim band

Also provided by www.ostomysecrets.co.uk, the swim band is made of swimming costume type material and can be worn for extra support under trunks or a swimming costume.

Medical

When you start wearing a stoma bag, you'll realise that there are lots of different companies that make ostomy bags and accessories, e.g. Coloplast, Hollister, Convatec, Pelican etc etc... Your hospital will usually give you a certain brand that they prefer, but you are entitled to change brands at any time (just talk to your stoma nurse). Different companies make bags in different styles and shapes, and most companies offer samples of their products free online, so you can try lots of different things free of charge and see what works best for you.

As well as just your bag, there's lots of other useful medical accessories out there, for example...

- Mouldable rings. These are ring shapes pieces, with a marzipan-like appearance and texture, which fit like a 'collar' around your stoma before you put your bag on. These help to prevent leakage and skin irritation, and can make your bag last for longer. I use Coloplast's brava rings, and they work brilliantly.

- Extender tape. This is sometimes called 'banana' or 'half moon' tape. It's pieces of tape in a curved, banana-like shape that stick over the existing flange of your bag. They provide longer wearability, extra security and are more waterproof. I use Coloplast's brava range, which again are fantastic.

- Scented drops. These are put into the bag to limit and eliminate odour. They come in a variety of scents and are often handbag size.

- Travel bag. Some healthcare companies provide a free travel wallet for ostomy supplies, but if yours does not, buy yourself a small make-up bag and make yourself a little emergency kit of a spare bag, bin bag, any accessories, wipes and dry wipes. Take this out and about with you. This has saved my skin several times!

Other

- Seatbelt protector

Found on www.stomawise.co.uk, this fits onto any regular car seatbelt and works to protect your stoma from the belt with two small cushions sewn into a strip of material that velcros around the lapbelt - these cushions sit either side of your stoma and keep the actual belt away from the skin.

All of these items have been really useful to me, and have made life a lot easier!