I’ve decided to rebrand my blog, after a year of having an ostomy, it isn’t the biggest hurdle I have to overcome now. I’m used to it and it is just part of me, I change it and empty it without thinking and I barely realise its there even when I’m dancing around my flat naked. However I still have many hurdles to overcome, so I want to use this blog as a way of documenting my journey back to health and ultimately of me regaining some of my life back.
Since my surgery in March last year, I have been a lot better. My trips to the hospital have been much more infrequent and the drugs I’m taking are no longer chemotherapy strength but over the counter medications to keep my new body in balance. Unfortunately, I am not back to normal health. I’m still unable to work due to extreme fatigue, aches and pains all over my body which make it almost impossible to get up in the mornings, vision impairment and intense muscle spasms that can often make it appear that I’m having a seizure along with a very very low blood pressure. Sometimes my body still decides to inflame, in my eyes, my joints and my mouth, which I was to expect as I will still have extraintestinal manifestions of ulcerative colitis. However these are difficult to cope with on top of everything else.
I have periods where I am ok and days where I can force myself to get up, go out and do fun things, like I went to watch Harry Potter in the theatre for my boyfriends birthday and also managed to go for a few drinks with his friends. These days are great, but often result in me getting very sick afterwards, infact, I ended up in hospital for a week.
So this will take some investigating and some experimenting as to how I get back to having a level of health where I can work and socialise without collapsing.
So why have I decided to blog about this?
I think a lot of health blogs focus mainly on protesting for the rights of an ill patient and I by no means discourage that, in fact I love these blogs and often read them. But I think there is the need for a blog that supports the mission to get well. This side of illness is often hidden, its not often documented just HOW hard you have to try in order to get well from a chronic disease or illness and through this blog I hope people find comfort and maybe learn from my journey. It also should be mentioned that I don’t know if I will ever be well again, so this journey has no set end to it, but it has a goal. To live my life again.
From a personal perspective, documenting all the little things I have done throughout to try to get better will help my mental health. It will help me to look back and realise the effort I have put in, because often when I feel like nothing is working and I will never be well again, I begin to blame myself. Why can’t I get better? What am I doing wrong? And having a blog to look back on will hopefully remind me that I am trying and also how far I have come.
So where am I now? I have had surgery to remove my colon and form my J pouch (a new intestine to replace the old one) and my next surgery is to take down my bag. I am still struggling when I shouldn’t be, and I am seeing an endocrinologist on wednesday to review my bloods to see if my hormones have been messed up by the strong drugs and medications I was taking during my ulcerative colitis flare ups.
Last week, during my stay in hospital, it became clear that my prolactin levels are higher than they are supposed to be and my vitamin D/ calcium levels are very low. I am still waiting on results as to whether I have something called Addisons disease, a disfunction of the adrenal glands which can make you feel very sick without medication to help them work.
My prolactin levels could be high for many different reasons, the main ones being benign tumour on the pituitary gland, kidney or liver disease. It could also be caused by stress (possibly the most likely cause for me). So on monday I am booking an appointment to go and see the endocrinologist and also to go back and see my surgeon who is the instigator in all of this, trying to help me find out whats going on before he proceeds with the next surgery.
In the meantime I am lying in bed for the most part of the day, scrolling through facebook and Instagram, sipping my St Marks Solution and hoping a Pokemon will randomly appear at the foot of my bed.
- I got up for half an hour to eat a jam sandwich
- I started taking calcium and Vit D tablets
- I caught a Noibat