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! 

Sunday, 4 September 2016

The Knees Strike Back

With three days to go until my surgery the past two weeks have been pretty awful, which is why I've not been updated the blog at all.

Around 12 days ago my knees started to swell up, as they've done many times before. My swelling joints are linked to the Crohn's. When my tummy is swollen, some of my joints like to join in and swell up too - share that inflammation around. I had thought it was weird that for the past two months, through everything my knees had been okay. It seems, they were in fact, lulling me in to a false sense of security until I thought I'd gotten away with it, before  BAM, they make their presence known. Once all the nasty swollen bit is cut out, I've been told my knees won't swell up anymore, which is great but doesn't help the situation I'm in right now.

After my knees had swelled up enough that they were getting pretty sore and very stiff I rang the flare clinic. In the past, this is what I've been told to do, it allows me to speak directly with a nurse from the rheumatology department who can then advise what I do next. I didn't hear back from them on the Friday and unfortunately it was then Bank Holiday weekend, meaning I wouldn't hear anything until at least the Tuesday. By Sunday morning my knees were huge, I think the biggest they have ever been. My left knee especially, which is normally the 'good' knee, was incredibly painful. I was being kept awake at night and was no longer able to really walk or even roll over in bed. I really wasn't sure what to do, with my op still 10 days away I was very worried that the state of my knees and inability to move would impact on my surgery. Without too many gory details, during the surgery they do need to move your body in to different positions to gain access to all the right areas. The fact my legs couldn't bend at all, was really worrying me. My Mum had spoken to a Pre-op nurse the week before who suggested I speak to the surgeon, which in reality is pretty impossible to do. We decided on Sunday morning to ring 111 for some advice after a truly horrendous night. It's always tricky with this service as they are not medical professionals on the other end of the phone and are just following a computer system which after lots of questions gives them the advice to give. This of course means that most of what they ask you is irrelevant and if you aren't then 'norm', its quite hard for them to do anything. In the end he sent me to an Out of Hours Dr service at the local hospital, I was in absolute agony and had to be wheel chaired in.

The Dr I saw was really lovely and tried his best to help but of course, the whole situation I'm in is so complicated, it's very difficult for anyone to come in and able to do something. He gave me some more strong painkillers, and told me what worsening symptoms to look out for. The next couple of days were awful and I felt very, very poorly, with my temperature spiking at 39. My Dad got really worried and contacted my surgeon who asked for me to go in to hospital later in the week to see the surgical and medical team. I panicked at this, really concerned the op would be postponed or that they'd admit me there and then, I hate staying in hospital so couldn't imaging anything worse. I spent the next three days in a constant state of anxiety as well as feeling very unwell. Although the swelling in my knees was starting to go down and weren't so painful, I felt like I was getting more and more unwell.

So Friday I travelled up to the hospital, with my Mum, where I saw a member of my surgeon's team, another Gastro consultant and the pre-op nurses. We were there for hours but I was seen by pretty much everyone there was to see. The good news is, I am fit enough for surgery. My knees have continued to go down on their own a bit and I'm able to at least walk better. The surgical team decided that because of this, from their perspective, surgery is okay to go. The consultant I saw is not my normal Dr and I've never met him before but he was fantastic. After listening to me speak, he asked whether I was a Dr myself, because of how well I articulated what was happening and pronounced everything, ha! I obviously thought this was brilliant!
He also showed me the report from my MRI, which I've never seen before. This showed that I have in his words, "a big abscess", or ball of infection. Although thats not great, in a way it was a relief to actually know why I'm feeling so poorly and in so much pain. Due to the amount of pain I'm in and how unwell I am, he prescribed me some antibiotics to try and get the infection under some control before the op. The abscess will be cut out during the operation as it's in the same area as the bad bit of bowel.

I've now been on the antibiotics for 48hours and they've definitely made a big difference to how I'm feeling, although still sick I don't feel nearly as awful as I did. This hopefully means I'll go in to the op in a better state than I might have done a few days ago.

So the surgery is just three sleeps away! I won't really be allowed to eat from Monday night, apart from something light before 7am on Tuesday, which will suck but my appetite isn't huge so I won't suffer too much. I obviously won't eat Wednesday and probably not Thursday so it's a good few days of no food at all. Mentally I think I'm as ready for the op as I can be. The next couple of days, I'll be taking it very easy and finalising everything Chroma wise before having a couple weeks off!
For now I'm just relieved the op is going ahead as planned and I'm not feeling so dreadful.

Onwards & upwards