Thursday, 9 February 2017

Bye bye surgeon

Hey everyone!

So for my first post of 2017, I thought it was about time I posted an update. I am now five months post op, which is pretty hard to believe! So much has happened in that time, but the op feels like five minutes ago.
I can now do pretty much everything I could before - I can sit comfortably on any chair, swim, drive and get back to exercising. Aside from maybe riding a bike, I'm back to normal, although that would be a pretty abnormal event for me at the best of times.

I had a follow up appointment with my surgical team last week and ended up seeing my actual surgeon, the top dog, who I've not really seen since I was discharged from hospital in September. He took a look at all the wounds/scars and said he was really happy with how everything was going. Although my tail end wound hasn't 100% healed yet, he discharged me from his team, which is a very good sign. It means I am out of the woods and there isn't much that could now go wrong. I won't be seeing the team again and have no need for another appointment. It was odd saying bye to him, he's done the most incredible job and completely changed my life, a thank you doesn't seem enough. He told me to stay away from surgeons and that I've been a model & brilliant patient, I said I would hopefully not be seeing him again too soon... in the nicest possible way of course. Obviously, I am never one to speak too soon or ever get my hopes up but if my surgeon thinks it's okay to discharge me, it must be good, I just need to trust him.

All my other wound sites are now just scars and are already fading, which is brilliant. It took me a while to adjust to the new Margaret, the stoma is further up the digestive track so there are some minor differences to how she behaves. I've also had a small infection under the skin, under the stoma which is annoying and persistent but nothing awful and compared to everything else I've put up with, is a walk in the park.

A few weeks ago I went away for a mini trip with three of my closest friends to the Cotswold's which was so relaxing and the first time I had been away since the op. Tomorrow I am headed to Spain for a five day winter sun break and a breather following a very busy couple of months with Chroma. I'm a little nervous as I'll have to put a new dressing on my tail end wound every day, which isn't the easiest thing to do, but my nurse has given me the go ahead, so I'm just going to go and enjoy myself as much as possible.

After years of wanting to but never finding the right group or time, as well as being poorly a lot, I have finally taken up ballroom and latin dancing, which I am loving so much. After 18 months of not being able to exercise and spending most of my spare time on the sofa as well as this 5 month surgery recovery, it's safe to say my legs don't know what's hit them. My fitness levels are on the floor and my weak knee muscles, especially, really ache after an hour of dancing. It does, however, feel amazing to be able to exercise again and do something I really love.

The rest of the year is looking brilliant, with lots of exciting things coming up. I'm finding it really hard to believe it's all okay and that going forward I should remain healthy. I've spent far too long anticipating bad news, which has often then come. I think it's going to take me a while to fully get my head around the fact I'm doing alright and no longer need to be on high alert.


Friday, 30 December 2016

Goodbye 2016

2016 has been a downright crappy year, the vast majority of it has been taken up with pain, worry and general awfulness. In fact, I reckon it has been the worst year of my life with the surgery and recovery the hardest thing I've ever had to deal with. I am so, so happy to see the back of 2016 and can't wait to see what 2017 brings.

Rather than look back on it with too much horror I think it's important to highlight the good bits too!

1. Adele
On April 1st Mum and I headed to Birmingham to see Adele. Five months before I had spent hours and hours over the course of four days trying to get tickets. On my very last attempt I managed to get my hands on some and Dad surprised Mum with them on Christmas Day. We stayed up in Birmingham for a night and had 24 hours of total relaxation. I had just had a pretty tough few months in Cardiff and really needed the little trip. We ate, chilled by the pool and really had the best time. It felt like we had been away for days. Adele was, obviously, incredible and it felt so amazing to be able to hear her sing live.

2. Rome
In May I headed to Rome for the first time with my friend Emily. It was such an amazing long weekend, we ate, laughed and walked ALOT and had such an incredible time. Rome was stunning and quickly became my favourite city I've ever been to. My knees had been playing up before I went but somehow (I think through sheer determination) I had the best, pain free time. It is definitely a huge highlight of my 2016.

3. Swan Lake
June kicked off with Dad and I heading to London to see Swan Lake at The Royal Albert Hall. Neither of us had been to the ballet before and ever since the release of Billy Elliot when I was 11, I have wanted to see it for myself. Although it was boiling and our seats were quite high up, it was absolutely beautiful and such a lovely day.

4. Coldplay
June continued being great with a last minute decision to see Coldplay at Wembley with my brother, Daniel. I'd seen a few of my friends go and the videos looked brilliant, I had a quick look online and was shocked to find tickets still available. I went for it and four days later was there having the best evening. Standing amongst thousands of people in a sold out stadium, with everyone happy and dancing despite the rain was so great. The whole place felt so unified and positive it was such a love filled evening to be a part of.

5. Beyonce
I rounded off June with the final move out of Cardiff. I packed up my final bits and pieces & cleaned the house before heading to see Beyonce at The Principality Stadium with my friend Phoebe. We danced all night and I got to live out a child hood dream of seeing Crazy In Love live.

6. Cornwall
In July I headed to Cornwall with my wonderful family. By this point I had been starting to feel poorly for a few weeks and I knew that surgery was going to happen at some point, I had no idea it would be so soon. Th holiday was really lovely, Cornwall is beautiful and it was a proper relaxing, chill out holiday. I suffered with being very tired & achey and I just couldn't keep up on walks. It really went downhill from this week but at the time it was fantastic.

7. Becky surprise!
My best & one of my oldest friends, Becky, surprised me a couple weeks ago. She's been away travelling and living in Australia for years with only two short trips back and I've missed her a huge amount! I hadn't been expecting her to come home for another week when there she was on my doorstep. To say I was shocked would be an understatement! I was shaking and just couldn't believe my eyes. She's been an incredible friend ever since we were 11 and even from the other side of the world has always been there for me. Having her arrive during a really tough time was exactly the boost I needed.

8. Chroma
Somehow throughout everything I have managed to keep Chroma going. Who knows how. At times, when I was unable to stand for more than 10 minutes and couldn't sit down at all, I didn't think I'd be able to do it. Most people are advised to take 3-4 months off of work following my surgery. I had two whole weeks off before trying to get bits and pieces done and doing as much as I could. In some respects it was all probably too soon but in many ways I think it kept me going. All the stress and hard-work paid off when in December, super blogger Zoella mentioned her Chroma 2017 Diary in her Top Gifts for Under £20 video (HERE). It sparked the biggest few weeks of sales since Chroma began - it was absolutely insane but totally amazing. I've also had a great year supplying some amazing brands, from Ralph Lauren and Soap and Glory to Boots and Max Factor - it has been a constant positive and a great distraction when everything else has felt rubbish.

9. Christmas
Christmas has always been my favourite time of year and this one was no exception. It kicked off with 24 hours of catching up with my closest friends over Christmas Eve Eve & Christmas Eve. Some of my friends I've not seen in months and there have been a lot of social events I've missed out on, so it felt great to organise and catch up with my favourite people. The following days of Christmas have also been lovely, full of food, family and game playing!

I am now heading in to it full of positivity and plan to have as much fun as I can. After a year of not being able to do much & 9 years of living with active Crohn's Disease, I want to fill this year with days out, trips away and general loveliness. The New Year puts to rest months of ill health and I am very ready to put it behind me.

My wound has healed massively and I am now barely needing a dressing on it, no nurses are coming in, instead I head down to the GP to see the loveliest nurse who is keeping an eye on everything. I can drive and sit down just like anyone else. I no longer want to be seen as 'the poorly one' or someone who needs looking after, I am so ready to get on with my life and leave the surgery and recovery in the past.

Going through such a horrendous time has definitely shown me who isn't around when the going gets tough, but more importantly it has highlighted the incredibly kind and wonderful people I do have around me. It's these people I'm taking forward with me and surrounding myself with in 2017, it's these people that matter and I feel incredibly lucky to have them.

 I already have some exciting plans and things booked in for the year and below are some of my 'resolutions' for 2017:

- See more live Sport.
I've already got tickets for the World Cup of Gymnastics and the Athletics & Paralthetics World Championships which I'm so excited about.

- Learn Ballroom & Latin dancing.
Something I've been meaning to do for years and now I have two working knees and bags more energy I think it's about time I did it.

- More weekends away.
I plan to enjoy some more long weekends. I've booked trips to Edinburgh and Malaga, with some of my closest friends, and I can't wait!

- Move out.
Although I attempted this last year, I think 2017 might be the year I successfully move out of my parents house. I've needed and relief on my parents a lot this year, there was no way I could have lived anywhere else. Now that I'm back on my feet and feeling good, I can start making plans to move out. (Although not too far away...)

- Say yes more.
When I was 17 this was my one and only resolution and I had the most amount of fun. I've since gotten used to planning and working out the things I can do around being tired and weeks at a time of illness. This no longer has to be a consideration so I'm determined to embrace it and fully enjoy myself.

So here is to the year ahead. Despite it's great times I am cheerfully waving goodbye to 2016 and happy to see the back of it.
I hope you all have a brilliant New Year!

Friday, 11 November 2016

10 weeks post op.

Hi Guys, 

So, things still seem to be on the up! I met with my surgeon around two weeks ago who had a look at the bottom end wound and was pretty happy with how it was going. Obviously, in an ideal world it would have healed straight away and wouldn't have opened up at all but considering it has, things are okay. A suction type dressing was briefly mentioned but dismissed, as he thinks the packing & dressing methods the district nurses are using, are working so far and will hopefully continue to work. Since I've seen him the wound has again got smaller and is definitely less uncomfortable! Fingers crossed as every week goes by, it'll continue to shrink and eventually heal completely. I'm due to go back and see him in a few weeks time, so hopefully it'll be even more healed then!

My tummy wound is now dressing free, which is a big relief. I developed some sort of allergy or reaction to the dressing and fluid leaking out of the wound. It caused the skin between the wound & Margaret to break down and get very, very angry looking. The skin was raw and oozy, which was as nasty as it sounds! Luckily, now that I'm dressing free and the tummy wound has healed to the surface, the surrounding skin is also starting to heal. I have such sensitive skin, I'm surprised it's lasted this long without playing up! I think in an ideal world they would have kept the dressing on a little longer so I'm a bit paranoid about it, but so far (touch wood), it's looking okay. My tummy is something I have been worried about a lot, an area around the top of the wound (nearest the bit that has just healed) is still a bit tender under the skin, which bothers me. My logical mind tells me that it's normal healing, after all, my insides have to heal like my surface wound does. My muscles have been cut apart and stretched, the nerves have been messed up, it's going to take time to heal and settle down. My illogical, anxious mind, however, keeps flagging this up as a worry. I get hung up that something has gone wrong under the skin, even though I know this isn't likely to be the case. The fact you can't see what is going on, on the inside, bothers me. Consistently, my worries have become reality and things which the Dr's have said should help me, haven't. I feel used to things going wrong but have become paranoid that this will always be the case. I am, however, doing my best to let my logical mind win and week to week, as things heal more, my anxiety is lessening and I'm less on edge, waiting for something bad to happen. 

I have also kept up my walking! My record so far is 10,000 steps in a day, the most I've done in three and a half months. I've been in to town with Mum a few times, each time finding it a little easier and less exhausting. I've managed to go to a fireworks display, perch on cushioned benches for lunch out and even made it to the cinema (sat in the VIP very comfy seats thanks to my lovely Dad). I can definitely feel myself getting stronger and my stamina is increasing. Every 'normal' thing I get to do, makes me feel better. I'm still not able to drive and the daily visit from the nurses is a constant reminder than I am still not fully 'better' but things are on the up and every week brings with it new, small victories. 

My energy levels are also still increasing. Just yesterday it got to 10pm and I realised, I wasn't that tired, I can't explain how unheard of that is for me. I'm used to waking up tired so it feels so bizarre to feel I can do more in my day. 

The past few weeks have also had some very exciting things happen! One of my oldest and best friends, Becky, surprised me early from travelling! She's been gone for two and a half years with only two short trips back in that time. I haven't seen her since Christmas so having her back for a few months is going to be so great. I answered the door expecting my brother or the UPS man only to see Bex! It was such an amazing surprise which really boosted my mood. I've continued to have amazing friends visit, (Cara & Em, I love you) and went out past 7pm to celebrate a friends birthday.

Hopefully things continue to get better and this annoying wound continues to heal!
Gabi x 

Wednesday, 19 October 2016

The odds are in my favour.

Hi everyone,

10 days on from my last post I can hesitantly say that things are starting to feel like they are going in the right direction. The day my last post went up I managed to go on my longest walk yet with my parents and dogs, afterwards I was exhausted and I inched along holding on to my Mum's arm all the way round, but I did it. I spent the rest of the day on the sofa but felt tired, in a good way. The previous two days had been really dreadful and my mood had been very low, so it was a relief to have a bit of a calmer more productive day. From the following day, onwards, things seemed to take a turn for the good. I had a much better nights sleep, which you can never underestimate and day by day I woke up feeling a little better. Although I know there is still a long way to go, it is a relief to see things start to go well. I think in general I am a positive person, when I have some light or hope or goodness to hold on to, I really focus on that. I am definitely motivated by good news and have learnt I need constant reassurance (mainly from the nurses) that things are getting better. It keeps me going.

Over the past week it feels like underneath the awkward walking, uncomfortable dressings, open wounds, sore muscles and zero stamina/fitness levels, I have a little bubble of energy just under the surface. My mind feels sharper, my thoughts feel clearer and I have way more oomf to do small, basic tasks. Things like having a shower, changing Margaret or doing a bit of Chroma do not feel like a big task I have to gear myself up for, something which I realise has been the case for as long as I can remember. I realised this morning, I did not wake up tired and I honestly couldn't tell you when that last happened. It sounds so, so silly and to many this is taken for granted, for me, that is huge.

I have been living at below par, pretty much every day for around 9 years but especially for the last 4. On good days I have been able to complete one or two tasks in the day, for example going on a dog walk and getting some work done, but I wouldn't then be able to see my friends or go to a gym class as well. On bad days I wake up feeling no less tired or rested than when I went to bed, & feel like I'm dragging myself through the day until bed time. My life has been a juggling act of what activities, tasks or events I can manage to do, things other people take for granted. I think it's become so normal for me to be like this, I've lost sight of how abnormal that is for your typical 25 year old. I look at other peoples day and think it's crazy how busy they seem, when actually that is probably pretty normal. Over the years most people haven't understood the chronic fatigue I've lived with, and I get it, I appear fine and not visibly 'unwell', sometimes I'm not even having other Crohn's symptoms. One of the most common and frustrating questions I've had ever since being diagnosed, aged 16, is "Are you better?" - there has never really been a 'better', not in the way most people would like to see.

Over the past three to four years my Crohn's has never been 100% under control, I have lived with constant inflammation, taking high daily doses of intense medication and had the on/off issues with my arthritic knees, all of which has really taken it's toll. Even when things have felt like they were going well, it never lasted long. In nine years I've only ever gone 1 year without a full on Crohn's flare and every flare has pressed pause on my life. Never knowing when a flare is going to happen has meant plans have had to be postponed, holidays have been canceled and I've missed out on a lot of things. This surgery I hope, will have put an end to all of this.

Last week I saw a member of my consultant's team, he explained that looking at my Crohn's Disease and the way it has often gone for other patients with similar disease to mine, I have a 95%-98% chance of the Disease never flaring again. Of course, he said "never say never" and I am far too realistic to believe this completely, after all, under 10% of Crohn's Disease patients have perianal disease and I was one of those lucky few but it feels pretty amazing to have such great odds. He said some would say more like 90% but he's pretty confident - I like his style. He explained that often with cases like mine, the Crohn's can be absolutely awful in one particular area but once that is removed, it rarely then moves on to another part of the digestive system, especially after the length of time I have had the disease. This is similar to new Crohn's findings which seem to identify two types of the disease, one which can be managed by medication and another which often fails to do so, and requires surgery. It's still early days with that research, but it does seem to make sense for me.
When the Dr told me the odds, I felt really emotional and nearly cried, it took me by surprise. To hear that I might never have a flare again, or at least not for a very long time is mind blowing.  I am staying off of all the medication, require no blood tests (which for me is un heard of) and if I remain flare free, my knees should also behave themselves. I am cautiously optimistic that I'll be in the 95%.
This news makes everything I have gone through, with this surgery, worth it. For me, living with a bag for the rest of my life is well worth not living with the symptoms and medication of the Crohn's Disease.

Six weeks on and I can already feel the benefits of not living with active Crohn's. Despite still recovering from surgery & having a way to go in recovery yet, I am waking up and feeling well, for the first time in years. Over the past week, I have started to feel better, my walks are getting longer and my wounds are starting to heal. My tummy wound is well on it's way. I see a different nurse every day, so when one comes in who hasn't seen it in a week, they've really noticed the difference. The hole is pretty much filled up and they reckon it's not long until it is back to normal. The tail end wound is also starting to make baby improvement steps. It's now around 3cm in length, not 4cm and is definitely not as deep. They're using less dressings to fill in the gap and it feels a lot less raw and uncomfortable for me, which is all good news. I'm praying by January it is more or less resolved, but I don't want to get my hopes up too much. Of course, there are still little setbacks, some areas of skin around the wound are starting to get sore and area in particular has split a little. There is also an area below the main wound where the skin hasn't quite healed. Although I can't see it, I'm told it's a little more then surface but should just heal up and doesn't need a dressing on it. I'm hoping things continue to improve and nothing else deteriorates.

I am seeing my surgeon on Friday, so hopefully I'll have a full update from him. Half of me is scared of him telling me bad news, especially when I feel things have started to improve but the other part of me, I know, will be relieved to have the expert take a look and (hopefully) put my mind at rest.

Here is hoping my next post brings more positive news!

Sunday, 9 October 2016

Not entirely to plan...

Update time! 
The good news is the little hole in my tummy wound which had opened up, is slowly healing. It's being covered with dressings and looking more filled in than it did before so fingers crossed that's on its way to healing properly. The bad news is, as is apparently common & I knew might happen, the bottom/tail end wound has opened up. Initially the nurses thought the opening was 2cm X 1cm and about 0.5cm in depth. After seeing a member of my surgical team, it turns out it's actually 4cm X 1cm and more like 3cm deep. It's basically where the wound hasn't sealed together, and come apart. It sounds awful but luckily feels more uncomfortable and sore rather than actual pain. Then again, I have a high pain threshold and have experienced a lot, lot worse in the past few weeks, so I think I'm just used to it.

It was Mum who first noticed it and once the nurse took a look and confirmed, she packed it with a special dressing. When she arrived she didn't quite know what she was walking in to and so didn't have all of the right stuff. This meant that for the first 48 hours it didn't have the right dressing on. On Wednesday, a different nurse came back to the house armed with all of the right bits and packed the wound. Packing basically means filling the wound (space) with special sterile dressings that are soaked in things which help the wound heal. As I'm sure you can imagine having dressings packed into an open wound isn't the most comfortable thing to experience. To stop them falling out, I've also had a big plaster like dressing stuck over the top and then tapped in place. It feels very weird and not all that great. The packing only lasts about 24hours before all the fluid the wound is producing leaks through, and that is as pleasant as it sounds. 

I contacted my surgeon at the first sign of things going wrong and the reaction from his whole team was amazing. I had a response within 24hours and was organised to see a member of his team for the following morning. This meant that Mum & I headed up to my hospital for 8:30am on Thursday morning. It wasn't an official outpatients appointment which meant I had to meet him on the ward I stayed in after the op. Going back felt bizarre and I got really paranoid that they were going to decide I would need to stay in & I wouldn't be able to leave. Whilst Mum and I were waiting, the bottom wound leaked through the dressing followed five minutes later by Margaret leaking. I felt like some kind of gross liquid was coming out at all angles, definitely not my most attractive moment. Leaks with Margaret are normally really, really rare, it's just because she's had a face lift and is new & improved that she's taking a while to settle down. I managed to do a quick patch up with some tape to get through the appointment before having to change the bag after it. I didn't have a lot of bits with me to change it nicely but the ward has a Stoma Nurse office in it so there was a cupboard full for me to pick from. I guess if you're going to have a leak, the best place to have one is 5 meters from an office of experts and all the ostomy supplies I could dream of. Having to change it also meant one of the stoma nurses could have a quick look, make sure everything was alright and help me re cut a new template for my bag. Silver lining to every leak eh! 

The Dr I saw was brilliant, he's someone I saw the week before my surgery, the morning of the op and pretty much every day in the hospital following it. He was also in the operating theatre assisting/observing my main surgeon. He knows my case really well which is reassuring and I trust him. The first thing he did was let me know the results of all the tests on my removed bowel. I 100% have Crohn's Disease. It sounds ridiculous, nearly 9 years after my first diagnosis, but I do know of people who only find out after having their bowel removed that it's actually Ulcerative Colitis they've had all along. He also confirmed there was no sign or cancer or any other nasties, not that that was ever a concern but it is still reassuring to hear! 

He then thoroughly checked out the wound and a nurse re-packed it for me, noting down everything she used so the district nurses coming in to the house could use the same 'materials'. Luckily the surrounding skin looks really healthy and clean and so he doesn't think there's any sign of infection, although it has been swabbed to make 100% sure. It's been decided that the wound will need packing/dressing every day to try and get it to heal. This means having the district nurses come to the house every day to sort it out for me. The healing time is the depressing part, I'm looking at months not weeks. It can potentially take a really, really long time. I asked if he thought 3-4 months and he said he couldn't really say, it's different for everyone. If this packing method doesn't work there are more drastic wound management things they can use, such as a wound pump, which kind of vacuum packs the wound. Then there's further surgical options which right now I'm not thinking about. The nurses will be keeping an eye on it every day and I'll have regular appointments with my surgeon until it's sorted. 

It is something I always knew might happen, in fact it was more likely to happen, than not. My surgeon warned me from the very start that it is a common issue and that healing the bottom end can be really tricky. Even as I left hospital he reminded me that just because it looks great now doesn't mean in 3-4 weeks time it will be. Sure enough, 3 weeks later, the wound has broken down. The man's a psychic. 
There is always the hope that it won't effect you but the awful state the Crohn's was in that area doesn't make healing easy. I've done everything they've told me to and followed all of the advice, but I guess it's just one of those things that is 100% outside of my control, which I really struggle with. Although I knew it could happen and the Drs at the moment don't seem overly concerned it still feels like a set back. It's sore and makes walking harder, let alone the incredibly irritating dressing stuck in between my bum cheeks. Although it could be worse, the thought of having a dressing there every day for a while is a little daunting. There is also, always the risk that is could get worse, rather than better but  I'm determined to try and stay positive and keep doing the little things I can do to keep healthy; eating well, resting & building up my exercise as much as I can. 

I also had my 25th birthday this week! Mum and Dad had had to go back to work after taking time off when I was in hospital and when I really needed help after getting discharged. I obviously can't really get out the house so spent the day watching TV box sets and good films. Dad had decorated the lounge with banners and balloons which made it a nicer place to sit in all day. A lovely lady I've known since I was in primary school came round and did my nails, which was so, so relaxing, I felt really pampered. One of my neighbours has also been popping in every day, which is lovely of her. Once Mum & Dad were home I opened my gifts, ate cake and got a takeaway Italian, as I still can't sit down so couldn't go out for dinner or anything. It was a very chilled, un-eventful birthday but was still a nice day & I plan on celebrating a bit more once I'm feeling better. One of my gifts was a Fitbit, something I've wanted for a while. I think it's going to be a great motivator whilst recovering and once I'm able to start exercising again will help me track how my fitness improves. At the moment my goal is to do just 1,000 steps a day which so far I have managed to do. In fact today, despite the annoying dressings I managed my longest walk yet!

We'll see what the next week brings...

Thursday, 29 September 2016

Three weeks post op

So I'm three weeks post op, and it's been two weeks since I got to come home. On the one hand recovery feels incredibly slow, like I'm making no progress at all. I almost can't remember life before the operation, which is crazy. I think a lot of this is down to me being so poorly for quite a while before the actual operation took place. It's been months really and they've all blurred in to one long Summer of yuck. 

Despite it feeling like I'm taking one step forwards, two steps back I know that every day and especially every week I am making big improvements. Since my last post I am now able to do a few of the things I couldn't before. 

I can now:
- Lie fully on my left hand side and back comfortably and right hand side, less comfortably. 
The tummy is still a no go. 
- Get from standing to kneeling, slowly, and I've become an expert in picking things up off the floor with my toes/feet and bringing them up within hand reach. Joint hyper-mobility has come in handy! 
- Open car doors and some drawers.
- My posture is a lot better but not perfect. I am able to twist round & reach up much more easily. 
- Sit in a car, kind of. This is still really, really uncomfortable and I have to hold myself off the seat with my hands, but it is still progress. 
- Get in and out of the shower on my own. 

I still can't:
- Sit straight down on my bottom.
- Pick up Toby, although I can hold him for 2minutes if someone puts him in my arms. 
- Sit at a table to eat. 
- Sleep in a bed. I'm still on the sofa which is frustrating but getting in and out of bed is difficult when your stomach muscles don't really work. 

I have also been working really hard on my walking, which sounds ridiculous. It's mad how quickly you can go from a perfectly independent, able bodied person (minus the knee episodes) to someone who celebrates walking down the road and needs to follow it up with a nap. Over the past week I've built up to being able to walk for around 20 minutes, I'm getting faster and able to go further every day... Next stop marathon eh! 

This week I also had my first visit from a lovely friend. This hasn't been due to a lack of people wanting to visit but more me not feeling quite ready. When I'm feeling at my worst and my body is at it's weakest I tend to turn a bit recluse-like and surround myself with just my parents & brothers. My friends, of course, have been wonderful and I think totally get it. I needed to feel a little bit more myself and be in less pain before having people pop in. Seeing my friend Cara twice this week was so great, she bought round the Nandos I've been craving as well as sweets, ice cream and flowers. She really has been such an amazing friend throughout everything. I've got more visits planned for this week, so little by little I'm getting back to some kind of  'social life'.

I've also felt incredibly thankful to have received some really lovely packages. From the most stunning flowers and cards to the best smelling pamper products and a gorgeous watercolour set from a mystery sender. The thoughtfulness and kindest of people has been amazing, and really brightened up a really hard time. 

On Friday night, when things seemed to be going steadily in the right direction for a few days my tummy wound leaked a lot of fluid. This gave me a huge a shock and I really panicked. The wound had appeared to be healing really well so it took me completely by surprise. My parents were away and I rang Mum in floods of tears, I was convinced something awful had happened. Following Mums advice, I rang 111 & had a call back arranged from the out of hours Dr who assured me it was okay and not to panic. My brother, Sean, who was staying with me was brilliant and in the end I did calm down enough to fall asleep. The following day I headed to the out of hours, walk in clinic, with Sean, and a lovely nurse took a look to confirm it wasn't infected, which I was most concerned about. They think I had a little pocket of fluid underneath the wound and being more active had caused it to come through the skin. It's not the end of the world but it did really scare me. Since then I've had two brilliant district nurses come round to keep an eye on all the wounds. Once the scab & waterproof spray stuff had been lifted off my tummy wound, it turned out I have a little 2mm hole in the wound. It's kind of freaky but apparently extremely common and should still heal nicely over the next few days if all goes to plan. The nurses are now monitoring & treating the wound, they don't seem worried at all, so I'm trying to take their lead and relax. Aside from the little hole the rest of the wound is healing really well, it's currently a pink line which although a bit tender still, is very neat and the nurses think it will heal as a super thin white scar, which is such a relief! 
I've also developed two pressure wounds or bed sore type areas from being in the same sort of positions a lot of the time. These are also now being treated so I'll hopefully be a lot more comfortable soon. My four key hole & drain wounds are all great and already fading. The tail end wound is what has caused me a lot of stress despite it actually being fine (touch wood). I think it's because I can't see it and I know it is a notoriously tricky area to heal properly so it constantly plays on my mind. 

Ever since being at home I've had multiple mini crisis or panicked moments. I'm ultra paranoid about infection and wounds not healing. I'm scared of things deteriorating and ending up having to go back to hospital or needing more procedures. There's no reason to think that would happen but every night, especially for the first 10 days, I seemed to find something new to worry about. I think the toll of the past few months, the operation, the hospital stay and now the recovery has taken its toll on my stress levels. I didn't fully realise how debilitating and lengthy the recovery was going to be. Although I am making progress every day, it's going to be months before I'm back to normal. I am, however, making lists and plans for things to enjoy after the new year, once I'm a bit more back to myself. 

It's my birthday next week, which will be spent on the sofa as I still can't easily get out or sit down at all but I plan on celebrating once I'm a bit better. 
In the mean time, let's see what the next week holds!


Sunday, 18 September 2016

Home from hospital!

I guess it's time for an update! 
After 8 long, incredibly painful days in hospital, on Wednesday, at 12:50, I was discharged and driven home by my Dad, exactly to the day and 10minute slot that I was put under the anaesthetic the week before. So much has happened in the past week, most of which I would rather forget forever and big chunks I already have. 

I wanted to try and go through the week for you guys, but everything feels so hard to pin down to exact times, days and feelings. It all feels like quite an overwhelming blur so I've decided to go for a more general post about the whole experience, bear with me. 

On Wednesday 7th September, the morning of the surgery, Mum and I headed to my hospital. The day before had been pretty awful as I hadn't been allowed to eat anything. I just had to drink juice and water to ensure my bowel was clear for the surgery. Luckily due to already having Margaret I didn't need to drink the stomach turning bowel prep, but having had my last meal on Monday (5th) evening, I found it a pretty tough day. 

Before the surgery, I wasn't THAT nervous, aside from a 15 minute wobble in the waiting room, where my heart felt like it was going to burst through my chest and I might burst in to tears at any moment. I met with various surgical people who explained everything, again, and put my Mum and I massively at ease. At 12:45ish I gave Mum the biggest hug and followed the nurse to the operating theatre. 

Before the op!

My surgery lasted 6 hours. Quite a lot longer than the 3-4 average and the 1.5 hours it can ideally take. I woke up with the following:

- 3 key hole wounds, one on the left of my tummy, one on the right and one about two inches above my belly button. 
- A drain sticking out of my left side which collected in to a clear pouch making sure any nasty fluid that built up came out of me. 
- A bag attached over Margaret (where she had always been), on my right. 
- Unfortunately, I also have a roughly 3-4inch line from my bikini line up to about an inch below my belly button. 
- A tail end wound site (A line of stitching where my bum hole used to be).

All the wounds had been painted over in this lilac, waterproof glue. It's safe to say, my tummy looked a complete mess and was hugely swollen. Although disappointed it couldn't all be done key hole, the longer incision was SO much smaller than it could have ended up being. My surgeon has stitched the wound, from the inside. Yup, that's right, from the inside. It blows my mind. I have no staples, clips or visible stitches, just a scabby line which should ultimately be very neat. The recovery nurse commented that it was more like a plastic surgery wound, which is just fantastic. 
One thing that has become incredibly obvious is the amount of time, care and huge thought my surgeon has gone to throughout my op. As well as minimal stitching to prevent obvious scarring, he has lined up the top of my scar with the top of Margaret so neither should ever show. The scar is also cut at a very slight curve that goes around where my bag lies, meaning the sticky bit doesn't go on top of the wound but the actual bag covers most of it. He's also had to re stitch Margaret in place as she has changed shape, but these stitches are not visible either. He has done everything he can to make the healing, ultimate appearance of my tummy and life going forward as positive as possible. I am incredibly lucky to have him and can't thank him enough. 
After the op he explained that key hole had worked for the majority of the operation but when he tried to remove the bottom end (rectum etc) it was "like cement". If you imagine it's supposed to be a very soft, quite supple area, (like the inside of your mouth), then it gives you an idea of what a bleak state I was in. This is the area that needed the longer incision and took him hours to cut away trying to ensure no damage was done to the surrounding areas. He was clearly meticulous. The state he found it in, just proves that there really was no other option than this op. Aside from the length of the operation, which makes recovering from the anaesthetic harder, everything else went to plan. He did an amazing job. 

My battered tummy

Right from the recovery area, after the operation was over, Mum & Dad were there for hours and hours, every single day. Throughout the whole experience Mum was like an anchor. When I felt confused or overwhelmed with the medications, nausea and pain, I felt safer because she was there. She stayed with me overnight on the first night which helped so much & was there for 12+ hours in the early days. 
The nursing staff were also absolutely amazing, three of them especially, went above and beyond and really stood out. I was, as I normally am, the youngest of all the patients they had on the 34 person ward, with most being quite elderly. At various moments, throughout my 8 day stay, having the nurses, my own age,  to talk to, made a big difference. 

The first few days after the operation are a mess in my mind. I remember certain big moments and little insignificant details but can't easily put them in the right order. Some of what I remember is probably not accurate considering the drugs I was on and some of it is just a feeling rather than the memory of an event. I could try to piece it all together but it was a very tough time, I'd honestly rather not. It was the hardest thing I have ever had to go through and at times I felt so out of control and overwhelmed, I honestly couldn't see how I was going to get through the next 30 seconds. I remember pleading with my mum that they just make me unconscious again, because I just didn't think I could do it. The best thing for recovery after an op, regardless of wounds, pain or tubes coming out of you at all angles, is to be sat up and ideally out of bed. This was drummed in to me and took several attempts over several days, with the help of mum and nurses to make it happen. It felt completely impossible but I did it! 
The incredible thing is, despite every hour seeming just as hard as the last, 24 go by and you can see an improvement and by a week you're in a totally different place. For example, on Day 1, I needed help moving my feet a few inches across the bed and by Day 4 I was able to make my way to the bathroom, very slowly, but on my own. The progress has felt incredibly slow but in reality has been so fast. 

It wasn't until Sunday evening, when my catheter was removed and I got over an ability to wee/retention nightmare ordeal, that I started to feel a bit more together and it was by Monday night, once my drain had been removed and the antibiotics had stopped, that I felt a little more like a human being. The combination of the pain itself, pain relief, antibiotics & anaesthetic effects had me feeling sick, a lot of the time. One of the anti sickness made me throw up, every time (apparently it's one of the side effects!...) I tell you, being sick with 6 different wounds in your tummy is not a pleasant experience. 

On Tuesday evening, 8 days since my last meal, once most of these meds had stopped, the sickness disappeared and I was finally allowed to eat & chew something. I had been told that morning that I would be allowed to go home and then at the last minute my blood test came back with a low potassium reading. This can ultimately be very serious for your heart but is also not unheard of with people with an ostomy. It did, however, mean I had to stay in hospital. I was heartbroken & really didn't cope well, I was so desperate to get home. After only consuming liquids for 8 days, Margaret's output was pure water, meaning I wasn't absorbing anything. I knew that all I needed was food to thicken up Margarets output, to then absorb nutrients and my potassium would go back to normal. The Drs also put me on supplements to try and raise it, before re checking.  
I felt horrendous from not eating and was very weak and shaky, my body would shake after standing for 5 minutes, because my muscles were struggling to keep holding me up, I'd lost 11lbs in total. The Drs need to take it slowly, after a bowel op, to make sure everything is working okay, which of course makes complete sense but is hugely frustrating. 
When they did give the 'normal food' go ahead, I asked Mum for a whole Nandos meal (obviously). She wisely said that probably wasn't a great idea and took me down to the hospital restaurant where I nibbled at some soft chips, a few spoonfuls of baked beans and a couple mouthfuls of chicken. It was incredible, I can't tell you how amazing that first tiny mouthful of normal food was. I also ate half a ham sandwich, half a packet of crisps, a banana and some toast. The output, as I knew it would, thickened right up and my potassium levels shot up (almost too far thanks to the extra supplements I was also taking) and I was allowed to go home as long as the potassium was re checked three days later. I arrived back home, very tired, sore & bruised, with arms that resembled a pin cushion. 

At home with Toby

Two days on and I'm happy to report that, in true Gabi style, I'm pretty much back to eating everything I want. I have to chew very well and drink a lot of water, but I'm once again loving all of my food. I feel really fortunate that I had an ostomy for three years before this op. It's one less thing to get my head around or worry about as I already know what to expect. Margaret and I have an understanding, I know what to eat and when & she has rarely let me down in digesting all the foods I love. 
Since coming home my mood is better, I no longer look so unwell and I'm not a shaky mess. Things are starting to feel a little more normal and little by little I'm improving. The first night was horrendous as I couldn't lie comfortably in bed but I'm now set up downstairs on the sofa and have been able to get some sleep. I am still very, very sore and on painkillers throughout the day, I am slow at everything but every day am able to do a little bit more than the last. 

Things I can't do that are very annoying:
Sit down straight on my bottom 
Lie fully on my back, side or tummy 
Pick up Toby 
Bend or squat down 
Open car doors
Open drawers 
Sit at a table to eat 
Straighten properly or twist my back/body/shoulders 
Sit in a car 
Get in and out of the shower 

Things I can do on my own!:
Fully bend my knees 
Get myself from standing to lying on the sofa and back up (80% of the time) 
Walk/shuffle short distances round the ground floor of the house
Go up and down stairs (with someone watching)
Go to the loo
Stand up for 5-8minutes 
Pull my body up the bed or sofa with my arms
Brush my hair 

The surgery has meant that my knees have gone down, fully back to normal, which is amazing. I am now also 100% free of all Crohn's medication for the first time since I was 16. The surgeon chopped out every diseased part so there is currently no need for it. This, of course, may change as Crohn's can spread elsewhere and the surgery was never a cure, but for now I am so relieved to be off the high doses of hardcore and potentially harmful drugs I've been on for years. 

I have Toby and Flynn by my side constantly and my family have all been incredible. I am beyond happy to back to Dads cooking and my brothers have cheered me up a lot. Mum, especially, has been there through everything and I honestly couldn't have gotten through it without her. The recovery process has only just begun and it's going to be months of baby steps but right now I'm just happy to be home. The support, love and messages from people have made it all a lot easier. I can't thank everyone enough for how lovely you've been. Big, life changing events, like this, truly highlight who and what is important and what frankly really doesn't matter. You get to know who really cares and the amazing kindness and thoughtfulness from friends, family and strangers has been unbelievable. This kind of thing is like a catalyst to clear up everything else in your life. It's a fresh start for a lot of things and I'm surrounded by the most brilliant people for it. 

Onwards & upwards!