Tuesday, 12 May 2015

My Ileostomy Journey - Update

I thought it was time I updated those who would be interested on my Stoma journey. You can find my original post here & subsequent posts here & here. Hopefully that will fill in those who have not so far followed my story.

There have been no more updates in the last 14 months or so because actually until February of this year there was no more to give you.

I had seen my medical consultants registrar back in July ( I think ) of last year & apart from a letter detailing that appointment a while after , I did not have anymore updates until January when I was told I needed to have another Sigmoidoscopy.

I had this done at the end of February & by the surgeon himself too which pleased me much! During the procedure ( which took about 5 minutes as it is not as bad & long as a Colonoscopy) he was able to tell me that there was some scaring. He took biopsies. He also said that as he was up happy with what he was seeing that I would at the moment be taken off the list until such time as they knew more. My letter came very quickly afterwards , with him saying the same & that he would be referring my back to my consultant until such a time I could possibly be back on the list for surgery.
I'll be honest , even a year ago, I would have been distraught for days , if not weeks. Now though & as we are now 4 years down the line, I am not phased either way tbh. Of course I would love my stomach to be stoma free but I have thankfully lived pain free in all that time & the discomfort from the bag I get occasionally is NOTHING compared to being struck down with a Crohn's attack.
I had an appointment to see the consultant - again it was a registrar. I told her how I was feeling because I felt it was good to be honest right from the start. I did ask about the Mecaptupurine that I take. If I did not have surgery could I stop taking them as they are very string pills & surely if results show that they are not actually working then why continue. 
She then told me that actually looking at the results they believe the scarring is not quite as bad as they 1st thought. So the pills , how ever small , are doing what they should. She told me not to dismiss a reversal at this stage because it may be that surgery could still be an option.
She also told me that most Fridays the digestive disease department have meetings to discuss certain cases & she wanted to bring my case up at the next one as everyone who is involved would be there. That was last week & whether this actually happened I will not know. I guess time will tell if a letter arrives. Otherwise I see the medical team again in October.

So , there is news here of sorts if not very exciting news but this post is a great way for me to update many people at once.

I am happy as I am. If the op happens, it happens. If not , I have 4 years experience under my belt ( or the stoma bag I guess :-)!! ) 4 years ago the idea of the stoma filled me with horror & the thought of anyone knowing about it was just bloody awful.  Now though I am happy to discuss things. Happy to answer any questions if I am able. At the time it felt like a life sentence, now I realise it has given me a better quality of life. 

Thank you for reading this if you have done so.
Amanda x

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