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Saturday, 2 October 2021

It's Coming Out! & World Ostomy Day // My IBD Journey

If you are new here...

Hi, I'm Hannah! I started having bowel issues at the age of 19 and was wrongfully diagnosed as IBS. At 21 I was correctly diagnosed with Ulcerative Colitis, a form of Inflammatory Bowel Disease and at 28 I had Loop-Ileostomy surgery to form Stitch, my stoma. Click Here to check out previous posts of My IBD Journey. 

The Update

Since my last update post, unfortunately, things haven't been great on the health front. Back in May I went in to have a flexible sigmoidoscopy and they found not only did I have "significant inflammation" in my colon but that I was more than likely suffering with diversion colitis. 
 
What is Diversion Colitis?
Diversion Colitis is inflammation that occurs in the "defunctioned" part of the bowel. Having a Loop-Ileostomy means I still have my colon but the majority of the fecal output is diverted into the bag. Over 90% of patients with a temporary stoma can experience diversion colitis but most are asymptomatic and usually only find out during a routine endoscopy.

So armed with steroids and more things to consider, I had a telephone appointment with my consultant and at this point I was feeling very fed up. I've had a flexible sigmoidoscopy before, it's not as invasive when comparing to other endoscopy procedures, but it was one of the most painful I've had. In 10 years I have been back and forth and it occured to me that each year I am either in a flare up or on very high doses of laxatives that it was the same as being in a flare up. I told the consultant I think it's time for the colon to come out and he referred me to the surgeon who did my Loop-Ileostomy. 

Whilst waiting for the referral appointment, my consultant did also try to play devils advocate. One of the medications for Inflammatory Bowel Disease is a biologic called Humira. I started taking this in August 2015 and I administer it in the stomach via EpiPen every two weeks. Thinking that I may not be getting enough of the Humira to control the inflammation, he upped my dosage to every week. Unfortunately, this didn't work and after 158 injections, I've now been taken off this medication.  

On Friday 18th September, I was able to have an in person appointment at the hospital with the surgeon who did my Loop-Ileostomy surgery. I was very nervous as being 29, having such a big operation and essentially taking out an organ isn't something any surgeon is going to lightly agree to, but, my surgeon is a god send. 
He knows that I didn't come to this decision lightly, he knows I've done my research and that I looked at options for later on as well. At the appointment he basically knew that surgery was going to happen, it was just which surgery was going to be best for me.
I feel I haven't lived enough. I've been controlled and contained by the Ulcerative Colitis and I have so much I want to do. So when I say "It's coming out" what I mean is, I'll be having a subtotal colectomy. 

What's a subtotal colectomy?
A subtotal colectomy is the removal of the large bowel (colon) and the formation of an end ileostomy. With a subtotal colectomy, the rectum is left in place. 

Why this surgery?
With a subtotal colectomy, the colon is removed meaning I will not need to take any medication for the Ulcerative Colitis and essentially I will no longer have Ulcerative Colitis. However, because I also have proctitis, I still have IBD and can still have issues with inflammation in the rectum. Treatment for it (for me) is easier to manage in the spectrum of having a better quality of life. But, you may ask, why not have everything taken out? Why not live IBD free? 
I feel this surgery is the best option for me for two reasons.
Firstly, by keeping the rectum, after the colon is removed I have 5-10 years to decide whether I'd like to go forward with J-Pouch surgery. A J-Pouch is essentially an internal bag made from the small intestine and it is attached to the rectum, meaning you can have the ileostomy revered. It's an option I have thought about, but right now my focus is getting that better quality of life back.
Secondly, when you have the rectum removed, or what's lovingly referred to as "barbie bum" surgery, there are a lot more risks and complications related to fertility. Like most surgeries carried out around the pelvic area. I'm only 29 and I really want to have children. Having IBD has changed or taken away things and although a subtotal colectomy carries out risks, I'm trying to minimise them messing with fertility related ones.

When will this happen?
Still waiting on an appointment. Last surgery I had was just before the UK went into it's first lockdown and even that appointment was a last minute cancellation / squeezed in. I only had 10 days notice last time and with Covid it could happen with short notice or I could end up waiting longer.

World Ostomy Day

Today is the first Saturday in October, making it World Ostomy Day! There are so many wonderful people, charities and organisations who are trying to make people #StomaAware. I'll be reposting lots of information in my stories on Instagram (@HannahMarieBrankley) if you want to check it out but here are some links if you'd like to read up.

People:

Charities & Organisations:

As always, thanks for reading...

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