Tuesday, 23 August 2016

The Date

Hey everyone,

On Monday morning, as promised by my surgeon, his secretary emailed me with my surgery date, 7th September 2016. Just two weeks tomorrow. I'm really, really relieved to finally have a date which I can work towards. The only downside of that particular day, is it's on a Wednesday, the same day as The Bake Off, so I'll definitely be missing an episode but I guess you can't win them all.

The anxiety of not knowing has gone and been replaced with a two week wait for it to happen and the overwhelming thought of the whole surgery itself and the recovery and life afterwards. I think really it's too overwhelming to even contemplate. The moment it enters my head, my heart feels like it drops out of my body and I feel a little bit sick. It's a big surgery with a fair few uncertainties in regards to the op and recovery. No one can know exactly what is going to happen, which bothers me 'cos I don't really do the whole 'lets wait and see, go with the flow' thing so well. The rest of my life after the op is also way too big to think about. Even now, three years on from having Margaret put in place I still have the same one day at a time attitude. As I may have said before, aside from having kids and other medical issues, there are very few things in life which are 100% forever, with absolutely no going back or way to opt out if you change your mind. Of course there could be a medical breakthrough in 30 years time which allows me to grow a new large bowel but as it stands, this is forever and no new Crohn's treatment or cure which comes out will be an option. It'll be too late for my poor old colon. It's pretty big when you think about it too much and makes me feel weirdly claustrophobic.

All in all, I'm very glad it's happening soon. I think I'd drive myself mad if I had to wait any longer. I've already had too long to think about it and I'm already itching to be getting through recovery and back to functioning like a 'normal' person. I still have a bunch of questions about the actual op but as I understand, it should be a bit like this.

I go in to hospital on the morning of the operation or potentially (although unlikely I think) the afternoon before. I get all set up, do all the things you do before an op, chat to all the right people, sign a consent form and get taken to surgery. When I wake up I will have around 5 different tubes sticking out of me.

- a catheter (so they can look at your wee, weird)
- a tube in my arm for fluids
- potentially a tube through my nose in to my stomach, to stop me feeling sick. (I didn't have one of these last time so although listed, I don't know if I will) 
- a drain in my side/groin (to make sure all the nasty fluid comes out of my body rather than collecting inside it)
- a tube providing pain relief (for this there are two options, a patient controlled morphine drip and an epidural in my back. I'm not sure how I feel about an epidural, especially if it has to be there for more than a day. A patient controlled drip is much more up my control freak street, so I'm going to ask if I can go for that one)

I'll have various wounds as well as Margaret still being there. Both me and my surgeon are hoping it'll be done key hole, which would leave me with 2-3 little coin shaped scars rather than the two other more invasive options, one of which would leave a scar from my belly button down to my bikini line (not by any means the end of the world, but not something I'd opt for). I'll also have a wound where yes, as many have asked and I'm sure more have wanted to but felt they couldn't, they'll sew up my bum-hole. There will be nothing there for it to connect to so it will be sewn closed, the people in the business call it a Barbie Butt. This bit does make my toes curl a little and it is the wound which apparently can have a really hard time healing, fab news all round.

Once the surgery is complete (4ish hours later) I will be taken to post op, where they keep a very close eye on you straight after surgery one-on-one, for a while before either going to straight to the ward or High Dependency Unit, depending on how I do. Considering I am a non smoking, young, 'fairly' fit and otherwise healthy 24 year old with no other medical issues to worry about, I should go straight to the ward. There I will stay for aprox 7-10 days until they send me on my merry way and I can return home. There are so many variables on this but I hope it all goes swimmingly and to plan. Once home it's around a 6-8 recovery with some people taking many more months to fully heal.

I found this pretty good diagram of what exactly my anatomy will look like after the surgery. I know for many, it's hard to quite imagine whats being cut out of where so I thought this might help. On the left is a 'normal' person and me currently (minus Margaret who is sticking out my tummy right before my large bowel or the big chunky, pale pink, brain looking bit starts, even though both my small and large bowel are intact and sitting there). On the right is what I will then look like.

Talk about losing some inches off your waist eh! In fact, a silver lining is, I'll lose a couple pounds just from having that bit cut out (around 4lbs according to Google). A pretty drastic way to get down to my goal weight but I won't be complaining.

My constant, cuddly companion Toby

So the next two weeks are going to suck a bit, luckily I have lots of films & box sets ready to watch, my gorgeous dogs to keep me company whilst friends and family are at work and I'm still running Chroma Stationery, which is keeping me distracted with new product launches.
The countdown begins!


Sunday, 21 August 2016

Finally a bit more news.

Hey everyone,

I had planned to write this post on Friday eve but really there wasn't much to update at all. We then had a mad hour on Saturday morning and I finally have a bit more news. 

I spent all of last week waiting to hear a date. I knew my notes had been on my surgeons desk for a week already and thought that at any minute I would have a phone call or email with a surgery date. By Monday afternoon I hadn't heard anything, so I emailed his secretary to see if she had any news. I was gutted when she didn't. My notes were still there and she wasn't sure when he would next be in as he was incredibly busy & on call. I did have a bit of a wobble that although my health hadn't gotten any better the urgency and momentum behind my surgery had gone flat. I emailed some of the nurses but they were either not able to help or didn't respond. I felt pretty helpless and had no one left to ask for information. 

The rest of the week went by & on Thursday I decided to give it another go and emailed again. My surgeon's secretary got back to me straight away, which was fab, but again my notes were on his desk, although she thought he'd be in that afternoon. Friday I heard nothing. 

On Saturday morning as I was catching up on the Olympics, I got a package come through the post. The package contained a letter booking me in for a 'capsule endoscopy' at my OLD hospital. The one I am no longer under the care of. It's safe to say, I couldn't believe my eyes. I literally, did not know what to think. The capsule endoscopy appointment I had booked at my NEW hospital had already been cancelled as they no longer deemed it necessary, & here I had been booked in at my OLD hospital for one. The package also came with some bowel prep, which I don't need to take with an existing ileostomy & really wouldn't do me much good if I did. 
My parents and I were dumbfounded with what the hell was going on. Eventually we decided to try and get in touch directly with my surgeon who 5 minutes late confirmed that he had booked a date for my surgery 'as soon as possible' but he was going to be away for the coming week. I should hear on Monday, from his secretary, exactly when that date it, but I'm assuming it's soon. What my old hospital is doing booking me into procedures when they no longer run my care/treatment is beyond me and I've lost the energy to try and work it out. 

So finally I have some kind of progress. Although not ideal, delays aren't necessarily an issue. If Drs had looked at my notes & test results, decided I'm not as ill as they first thought & delayed things. Then that's absolutely fine. What's scary is having delays when my health is no different, my notes haven't been looked at & I was previously being treated with a level of urgency, which then seemingly stopped. I really felt like I'd slipped through the net and no one was able to help. Evidently this hasn't happened, but the lack of communication meant I was left in the dark, which is scary. My surgeon is brilliant and got back to us on his weekend, it's just such a shame that we felt that was the only option we had left to get any kind of news. 

I've learnt from the past that, unfortunately, you do have to get in touch or remind the teams behind the medics that you are there to get results. I now 100% manage my own care and treatment, I never leave it to others to just handle it, just because they say they will. They all probably think I'm a complete nightmare, but there have been enough times when there have been delays, admin errors and miscommunications that I now don't worry if I'm annoying, I follow every last thing up until it's done. It's definitely caused a huge lack of trust. Fortunately, none of this has anything to do with the actual care I receive. The majority of Dr's, surgeons, nurses & health care assistants I have had contact with have provided excellent treatment and care. I really do trust the judgment of my surgeon, new consultant and old consultant and have complete confidence in them. It's just such a shame that behind the scenes, things don't always run so smoothly. I'm sure this is not always the case and that there are brilliant people, working very hard, over stretched jobs, behind the medics, perhaps I've just been unfortunate. 

The stress and anxiety of waiting for that phone call, has definitely taken it's toll. I'm sleeping really poorly, with me sat wide awake most nights until 3 or 4am. The emotional roller coaster of having to go through this kind of surgery and life changing process is hard enough, let alone with the worry of getting your voice heard in the system. I've also had to deal with other seriously stressful stuff, the death of Harry dog & a housing deposit dispute from my old Cardiff house, which really haven't helped. Finally, this weekend, with a date set and questions answered, I feel I can take a breath and focus on getting through the surgery itself. 

Flowers from my Dad 

The week hasn't all been doom and gloom. Some incredible friends and wonderful family have really been there for me. Emily & Cara sent gifts, flowers, chocolate & activities to keep me entertained in hospital and I got out the house for an evening to see Cara & Wyn, who took the time to check in before heading on their holiday, which was so nice. I don't think they realise how much I appreciate it. My parents are also, as always, amazing. 
The Olympics has also kept me distracted and entertained, I've watched coverage pretty much 24/7 and loved every minute of it. The inspirational come back stories, showing sportspeople fight injury and illness to get back to Olympic level fit, has really spurred me on, to recover fully and quickly from this surgery. The likes of Siobhan-Marie O'Connor who won a silver medal in the swimming, despite having Ulcerative Colitis is incredible. I've found it so motivating and it has really boosted my mood each day. really don't know what I'm going to do with myself now that it's over. 

Hopefully, the ball is now rolling (a little faster) and I can get this surgery over and done with. 
Will of course, update soon. 

Tuesday, 9 August 2016

The Waiting Game

Hey guys,

Thought it was time for an update!

So, at my last post I had just met with my surgeon who revamped my tests plan & aimed for my surgery to be in August. A week after that appointment at 7:30am  Mum and I arrived at the hospital ready for my investigation under sedation. The previous day, I had spent hours emailing and calling many different departments as my name was not on the surgery list for the following day. I was told it wouldn't be going ahead but fought my corner and chased it up enough that by 6pm they were able to confirm it would be going ahead after all. It turned out my notes had not been given to the correct people and no appointment had been made. I've grown to learn, unfortunately through far too many bad experiences, that you often have to fight and stay on top every aspect of treatment/referrals/admin tasks. Although this time it ended well, it definitely causes a huge amount of stress at a time when my anxiety is high and I'm feeling pretty rubbish.

Upon arrival the nurse couldn't quite work out who was having the procedure, me or Mum. When I popped my hand up, she looked a tad confused before asking my age. When I told her I was 24, she looked relieved, and replied "Oh good, because we don't do under 16's in here". Brilliant!

The area you wait in before the surgery was having building work, meaning that no friends or family were allowed in with you, whilst you waited to go through to the operating area. For me, this wasn't too bad. I wasn't particularly nervous, as no actual op was occurring, I knew exactly what to expect and sedations don't really scare me. For others going in, however, you could tell it was a really big deal. Some of them were having big surgeries and clearly needed their loved ones their before hand. I found it quite hard watching and listening to people try and keep calm, on their own. Once there and on my tod, I had to change in to a gown and have my obs done (blood pressure etc.), the anethetist popped in to go though the 'keeping me asleep' plan followed by one of my surgeons fellows who went through what the procedure would look like. I was only having an 'investigation' so there was nothing too complicated to go through.
I was the first one going in to the operating theatre, so I luckily didn't have long to wait. In the anesthetic room, I chatted away to the nurse who was shocked at how small my hands are and laughed at the nurse thinking I was maximum 16 years old, reassuring me that yes I look young, but definitely not that young.

The next thing I knew, I was awake and in recovery, lying on my side. I had my painkillers topped up, which I enjoyed a little too much and stayed there for around an hour before being wheeled back on to the day surgery ward. Here they like to make sure you can wee, check the op/investigation site to make sure any bleeding has stopped and generally make sure you're back on your feet and ready to go home. At this point I was super sleepy but ready to go, my surgeon was still in theatre so I wasn't able to speak to him but I was told everything had gone to plan, biopsies were taken and he got all the info he needed. A few hours later they set me free and I was able to meet Mum at the ward entrance again. I left a little confused at what the plan would be going forward, the nurse mentioned an appointment with a different surgeon, who I had never heard of, but they couldn't tell me much else. Recovering from the procedure I couldn't believe they originally going to do it with sedation rather than general anesthetic, I am still so incredibly happy that this decision was made.

In recovery, loving the painkillers

The following day, still not being able to drive following the general anesthetic, it was Dad's turn to drive me back up to the hospital for my pelvic MRI. For the second day in a row my eating was limited, so I was starving and grumpy but not phased by my millionth MRI. That, again, all went to plan!

Nearly two weeks on from this, not much has changed. My temperature goes up and down but doesn't seem to be peaking too high, which is good. I'm very tired, all the time, and have good and bad days in regards to pain. I seem to gradually be losing weight and my appetite is a little lower but I'm definitely still eating (nothing can stop my love of food). TMI Crohn's symptoms are the same, painful and horrible. Mood wise, I think I've got my head around it, I get frustrated and angry with the delays, lack of communication and admin errors but I'm doing okay. The surgery has meant I've had to cancel a trip to the Caribbean in October, which is truly gutting but I've started making lists (obviously) of things to do when I'm back on my feet.

I now just want it to happen, get it over and done with, playing the waiting game is not much fun but at the same time it feels really odd to be wishing for such a nasty, life changing, hardcore surgery to happen. I don't want it and want it, at the same time. There has been a lot of hassle trying to get answers about what is happening next and getting to speak to the right people, but on my last update, this morning, I was told that my surgeon had all the results on his desk and a plan was going to be made. For me, this is one of the worst bits, I hate the not knowing. He had previously said it would be August, but we are well in to the month and I've not had any news, so I'm not 100% sure yet when it is going to take place. Hopefully I will be told more in the next couple of days.
In the mean time, I'm sleeping, trying to keep on top of work and generally taking it very easy. I think it's hard for others to understand the on going, seemingly never ending process of this waiting. I'm not feeling better & it'll be months before I'm back to my old (hopefully better) self. I feel like a complete drag when people ask how I am and the response is no different to the last time, having no news is so annoying.

Unfortunately, we've also had some really sad news, with one of our family labradors, Harry, having to be put down. He had a very aggressive cancer, with a tumour on his face, so we knew it was coming, but in the end, it was much quicker than expected. I feel completely devastated, right now, it's the last thing I needed and think it has effected me a lot more given everything else that is going on.

The good news is, it's all up from here! Hopefully in the next few days I will have some news, my control freak ways will be satisfied and I can start to plan moving forward! The Olympics have also been a brilliant distraction and has given me the best TV to get in to 24/7, which is great. I've also gotten out the house to see Finding Dory (which was SO good) and a couple of hours at a leaving BBQ for my friend heading to the RAF, as well as light strolls with the dog, all things which have made me feel a lot better.

Will of course, continue to update xxx