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!