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
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 responseand was organised to see a member of his team for the following morning. This meant that Mum & I headed up to my hospital for 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 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, , 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...
We'll see what the next week brings...