Hitting A Bump In The Road
Living with a chronic illness isn’t easy and many of us will talk about “hitting a bump in the road”. After having The Best Year last year, this one has left me feeling like I am starting over again.
A Routine Check-Up
In November 2023, I went for a routine flexi-sigmoidoscopy. When I had the majority of my colon removed, I kept my rectum and a small bit of colon. This is something many choose to have done in case they would like to take the j-pouch surgery route. Where to put in laymen’s terms, they make a pouch out of the small intestine and rejoin you internally. Living without a stoma.
The rectum needs to be checked for proctitis (inflammation) and also because of the risk of rectal cancer. A scope, flexi-sigmoid or full colonoscopy, isn’t the most pleasant experience at all but this time was an awful experience for me.
I found the enema, to make sure the area was clean, irritated everything. I unfortunately had a lot of blood, was in a lot of pain despite huffing gas and air, and was very sore for days afterwards.
When I flare with the proctitis, it is usually always slight. I would just use a suppository every day or every other day for over a week and I’d be ok again. I was managing it well. Since the check-up, I haven’t been able to get this flare under control.
What’s Next?
I mentioned above that a lot of people leave a small bit of the colon and the rectum for j-pouch surgery. The other reason is to have children. I have always wanted to be a mum. I still want to be a mum. However, the proctitis flare is unbearable to live with and is causing many issues. I’ve only been able to leave my house a handful of times this year.
I think, for me, the best course of action is to have a proctectomy which I will probably speak more about when I know more. All I do know is that (again in layman’s terms) they remove the remaining colon and rectum. Sew up where the bum hole was and I would live without the proctitis.
I was offered to have everything removed during my last surgery. However, this is a huge surgery with a long recovery and a significant increase in fertility issues. Which is why I left it in place for now.
There are other treatment options, but it is what is making me feel like I am starting again and back under the control of the IBD.
When I came out of surgery, other than needing a suppository now and again, I was off medication. It felt great because I wasn’t getting all the side effects. My mind felt clearer, the weight was coming off and I was feeling more like myself.
As of today, I am currently back on prednisolone steroids which are what I call “the deal with the devil”. Having had awful experiences with prednisolone, I tried a few other rectal therapies before having to give in and take the tablets again. These included prednisolone foam and suppositories.
With prednisolone tablets, I suffer from joint and leg pains, weight gain, trouble sleeping, and they do negatively impact my mental health. I am currently going to see how I do for the next two weeks but I hope that I can speak to the surgeon again soon.
Well, wasn’t what I imagined when updating on my 2nd surgery anniversary. Hitting this bump in the road has been physically and mentally difficult and I just hope I can get sorted soon.
As always, thanks for reading…