Today is World IBD Day!
As you all know I suffer from Crohn's Disease, one of the main forms of IBD (Inflamatory Bowel Disease) along with Ulcerative Colitis. The disease effects every sufferer differently, with some, like my brother, able to live completely normal lives with medication keeping them well for years and years at a time, some even have their symptoms controlled for decades. At the other end of the spectrum are those of us where medication has stopped working and surgery is left as the final and only choice.
Although there have been definite improvements in recent years, the lack of awareness and stigma attached to IBD means you'd be forgiven for not realising that 300,000 people in the UK suffer from it, with someone being newly diagnosed every 30 minutes. It is estimated that 13,500 people have stoma surgery every year in the UK, leaving them with a permanent or temporary ostomy bag, these are given for a variety of reasons including IBD. For these thousands of people, IBD and ostomies are a very real & life long issue.
I am now 8 months post surgery and physical I am 95% there - my tail end wound is being a pain in the arse (ha!) and taking it's sweet time in healing, but it is now a surface wound and should be there soon. My fitness levels are returning and my core strength is improving. My knee's are getting used to normal activities, with nagging muscle pain, but no swelling, stiffness or arthritis symptoms. As I walk down the street nobody would guess or be able to tell what my body has been through. Even I struggle to believe that not that long ago I was house bound, unable to sit down, turn over in bed or get in the shower without help. It's crazy the comparison to just a few months ago. Physically I'm doing okay.
The psychological effects, however, are tougher to heal from. IBD is a topic, few people discuss, and the mental health side of things, which often go hand in hand, even less so. As only my closest family members and best friends will know, I have greatly suffered with anxiety and stress since my operation. Whilst recovering I believed that once I was back to my normal self and able to function "normally" again, my brain would catch up. Oh how naive I was.
The trauma of what I experienced last year alongside 10 years of unpredictable ill health has left with severe anxiety & PTSD like symptoms which can leave me feeling incredibly low. Although others have said I've been "brave, strong & positive", this is often far from how I've felt with most days feeling like a battle. Despite this, the majority of people in my life would have no idea, with many probably forgetting I was even recently unwell.
Although I've been told that I have a 95% chance of remaining healthy and flare free, my brain can't seem to accept this and has become on high alert for any tiny symptom or sign that I might be falling ill again. The stress and worry this causes is huge, and although the pragmatic and logical side of me know's the facts - this doesn't help soothe my anxious mind. For someone where the worst has seemed to happen a lot & treatment has failed too many times to count, it is hard to quite believe that I might be okay. As my favourite nurse said last week, "You're feeling like this, because you're well and everything is going okay." Last week I had bloods done to determine I was okay and flare free, they came back 100% normal, the best bloods, in fact, that I think I've ever had. I know that eventually my brain will catch up with my body and realise that it's doing alright, it can't argue with scientific fact.
On previous World IBD Days I have campaigned for higher awareness of the disease, encouraged people to ask questions and discussed how IBD has made me who I am today. This year I felt it was important to speak up and talk about the other side of things, the psychological side which rarely gets discussed but effects thousands of people on a daily basis. Awareness needs to be generated, sufferers should not be made to feel isolated, embarrassed or frightened, stigma needs to removed, IBD should no longer be a taboo subject.
Here's to another year of putting a big middle finger up to IBD, showing it who's boss and raising some much needed awareness.
Onwards & upwards xxx
For more information on IBD & how you can help/donate please visit the Crohn's and Colitis UK site
https://www.crohnsandcolitis.org.uk/
Friday 19 May 2017
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.
xxx
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.
xxx
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