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Battling Endometriosis & my journey to a stoma

I’ve battled a disease called Endometriosis since the tender age of 11 but was officially diagnosed 2 weeks before my 18th birthday. I spent years of being medically gaslighted, told the pain was normal & that I needed to just ‘accept’ it as part of being a young girl. Yes! Those were the exact words I had thrown at me from specialists.

When I was finally diagnosed with Endometriosis I was diagnosed with stage 4 widespread severe disease which had penetrated my bowel & bladder. This led to me having my first bowel resection.

What is Endometriosis?

Endometriosis is a disease where cells similar to the lining of the womb are found elsewhere in the body. These cells each month react like the ones in the womb where they build up & break down & bleed. Unlike the cells in the womb that leave your body as a period, this blood has no way to escape causing inflammation, formation of scar tissue, not to mention the debilitating & life-altering pain.

I have battled this disease for over half my lifetime & it doesn’t get any easier. I’ve undergone 13 operations now which more recently left me with a permanent ileostomy.

Ileostomy surgery

The reason I had this ileostomy was because I developed slow transit bowel disease due to the damage endometriosis had done to my bowel. My large colon completely stopped functioning. No amount of aggressive laxatives, enemas, medication, colonic irrigation would move along my bowel movements. This is when things got very serious very quickly. My large colon was completely compacted & at a very high risk of perforation. I was taken in to have my first ileostomy formed in March 2020 but didn’t have my large colon removed as planned due to a change in surgeons due to a change of circumstances with my original surgeon.

Little did we know this change in the decision would cause major issues in the near future.

Post-op surgery

3 months post my first ileostomy surgery my stoma started to retract & I mean it was non-existent. I went from having a 30mm stoma to a 14mm stoma & it didn’t protrude. Time & time again it would obstruct & had no function. I was admitted into hospital countless times over the coming months not to mention Covid was very present which led to delay in treatments. Due to my stoma being fully retracted under the skin & it being a loop ileostomy it was bypassing into what was left of my large colon causing a major obstruction as my large colon had no function (something that could have been avoided), not only that I developed partial obstructions in my small bowel. After being in & out of hospital needing a catheter to keep my stoma outlet open, a tube down my nose & throat to drain the contents of my stomach. They finally made the decision that I needed urgent surgery to remove my large colon & to redo the stoma making it an end ileostomy. I was told this would be within 2 weeks, due to Covid we ended up waiting nearly 11 weeks. I was incredibly lucky when I went in as my surgeon said another few days & my bowel would have perforated which could have been fatal, which doesn’t even bear thinking about.

New stoma

Fast forward to today & I am 9 weeks post colectomy & new stoma surgery. Getting to grips with a much bigger stoma is an adjustment but thankful it’s working. Due to me having Endometriosis & slow transit bowel disease I will never be able to have the ileostomy reversed as the function that was once there has been destroyed. & I’m okay with that, I’ve accepted that this stoma is a part of me.

It’s not the end of the surgical road for me unfortunately as I face another major surgery at the end of this year which is a total hysterectomy, major endometriosis excision & the possibility of having my rectum removed due to the severity of my rectovaginal endometriosis.

The thing is with Endometriosis we have no cure for the disease. A hysterectomy does not cure the disease. Therefore you have to face the fact that you have to deal with this debilitating disease long term. That can be an incredibly scary prospect. It’s hard for healthy people to grasp that ‘get well soon’ sadly doesn’t apply to someone who’s chronically ill.

I am often faced with a surprised expression when I tell people that my stoma is due to Endometriosis. Little is known about Endometriosis & what people do know they think it’s a disease that only affects your periods, when that can’t be further from the truth.

Endometriosis is a whole body disease & can destroy some your most vital organs. It’s debilitating, isolating, frightening. We constantly live with the fear of the unknown as surgery only gives you respite for a certain period of time until you need the next surgery. So please if you weren’t aware of the damage Endometriosis could do, Educate yourself 💛

Anna

@battlewithendo_ox

Learn more about Endometriosis 

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