I like to write my blog as it's interesting for me to look back on the different stages of my battle with Inflammatory Bowel Disease. I read over some older posts and the feelings that I've written down are rather foreign to me in the present stage of my journey. To say that Ulcerative Colitis is a roller coaster of a ride is an understatement, highs, lows, to hell and back and to think things have only barely began. I am now some 5 years into this daily battle but trying to accept that I will be lumbered with this for life (as at present it is incurable) is rather too much to take in.
As I compose this post there are IBD'ers that I've come to know who are currently in the hospital, battling dark days and others heading towards yet another trying time with surgery. The hard cold facts about Inflammatory Bowel Disease is that there is no 'wonder drug', it is all trial and error to try and 'sustain' ones 'health'. Some days are better than others but as of yet there is only one grim way out, one that I don't wish upon anyone and am doing my part to raise awareness so that we can in future eradicate this illness.
Who will face surgery?
I'll not write about the ins and outs of surgery or draw you some doodles as frankly I'm not a doctor, my doodles would be AWFUL and there are wonderful IBD charities that have done a brilliant job at explaining in depth what surgery entails. Therefore if you would like to know a little more about surgery with Crohn's Disease or Ulcerative Colitis then here are some great links>
Click here for information on surgery for Ulcerative Colitis.
Click here for information on surgery for Crohn's Disease.
Surgery, yikes! I know its super scary and the stats aren't great but unfortunately it is a very real possibility for those of us who have Inflammatory Bowel Disease. If you shove your head under the pillow the risks don't decrease! Hopefully by reading about it and doing some research your fears wont be as bad in the long run. Forewarned is forearmed as the saying goes, some people don't get this chance and land up having emergency surgery. So if you can, do little research into it.
Previously when I was super run down, exhausted, confused and lost, I once asked my gastroenterologist if he could just whip out my colon to save me from this illness. At the time he giggled at me and I'm glad that he did, as I was only at the beginning of finding a treatment that works for me so don't be as hasty lol I didn't understand Ostomies, knew not of how they worked or what their purpose was. I was naive to the idea that you have surgery and all is fixed...that's not always the case. Removing someones colon is NOT a cure for someone who is diagnosed with Ulcerative Colitis but a drastic treatment option as the delightful Marisa from @JournalingIBD explains>
Click here to read 'Can Ulcerative Colitis be cured?'
Surgery is just yet another drastic 'treatment option' one that I find hard to comprehend. I know we have no say in who will land up on the operating table and which of us will not but my head still can't get around the fact that surgery 'may' one day be my only option. *Note to future self- how are you getting on?*
There are many wonderful IBD advocates who are extremely inspiring and who let us into their journeys following surgery.These delightful people let us in on their worlds to help, advise, educate and prepare us on what life could be like. While some people struggle to cope with the new change, others take well to having an ostomy and feel that it has given them a better state of health .
One such ostomate is Eric; creator of Vegan Ostomy @veganostomy who is just outstanding at the awareness he raises and the advice he offers to anyone who comes knocking at his door (of the social media kind that is, the bloke lives in Canada and not even I am making that trek from here in the UK). Vegan Ostomy churns out blog posts, product reviews, videos, you name it ...the man knows about it>
Stephen, creator of Behind The Times @sdempsteruk was not so fortunate in having a 'heads up' about surgery. Having first known about surgery when he was rolled into theater to have a resection (part of his colon removed) due to his bowel rupturing (We'll hold the Crohn's Disease accountable for that one!You meanie you!). Again Stephen is a wonderful advocate for IBD who too blogs about his experiences in the charge to raise awareness.
How do I think I would react to needing surgery? I'd probably try to flee, barter my way out of it or cry like a child for weeks on end. In all honesty I don't think that I would cope well with the procedure or any of the immediate aftercare. Do I see myself accepting surgery in my near future? Hopefully not, my current strategy is to hold out as long as possible and hope that we continue to make advancements with the medications available to those of us with Inflammatory Bowel Disease. Could I see myself maintaining an ostomy? hmm I think I could. Would I be any good at it? No idea at all! For now I don't see surgery in my future but am only too aware that it is always an option. Some people with Crohn's Disease or Ulcerative Colitis get the choice of surgery while for others it is a 'last hope' as they have trialled every other medication available to them. I don't feel that I will be one of the 20-30% of Ulcerative Colitis patients who will need surgery but if it does happen at least I am now a little more prepared and educated on the topic.
So as you can see I have nothing to offer up on personal experiences with surgery and IBD but I thought it would be a good opportunity to document my thoughts and feelings to compare where I am at in the future. For now maintenance medication option 1 (Pentasa/ Mesalazine) is still working well for me and in the meantime I'm hoping that new advancements in treatments will continue coming to the table. I feel like we are making headway into understanding a little more about how Inflammatory Bowel Disease behaves even if we as of yet do not understand any of the what, who's, or why's of the blooping illness.
My thoughts are with all of those who are currently tackling a hospital stay; keep strong, keep fighting Xx
No comments:
Post a Comment