From not being taken seriously, to having over 10 surgeries before the age of 30; Anna takes us through her pregnancy and recovering from permanent ileostomy surgery. Read her story below.
TW: One graphic image that includes a clear stoma bag – intestines and poo.
Where it all started.
My journey with chronic pain began over 12 years ago. It went undiagnosed for four years. Not knowing the root-cause of your pain is torturous. I felt I wasn’t being heard or believed. I was 14 when my symptoms started to become chronic and by then I was labelled as a “young girl having growing pains”. It was extremely hard to get medical professionals to listen and listen properly. It took an ovarian cyst misdiagnosis and emergency appendectomy for them to finally take my pain seriously. Endometriosis was only mentioned after I had my appendectomy. The general surgeon who removed my appendix said he could see Endometriosis surrounding the organ.
He referred me back to my original gynaecologist to have it investigated. To my dismay, she refused to agree with what he found. I knew something wasn’t adding up. A surgeon wouldn’t have made up something like that. I was very fortunate to have access to private health insurance. My dad researched specialist gynaecologists and managed to get me referred to the top dog for Endometriosis in the U.K. From the initial consultation he was certain I had Endometriosis. He just didn’t know how severe it was until he operated. He told me, even though the chance was small, I would need further surgery if there was a lot of disease present. I’d had two previous laparoscopies, so he didn’t think he’d find a huge amount of disease. A week later, I was being prepped for my 3rd operation. Little did I know, I was riddled with Endometriosis.
After the surgery, I was diagnosed with stage four widespread Endometriosis. I had so much disease present, they couldn’t remove it all in one surgery. Two weeks later I was back in for my 4th surgery in less than 10 months. This operation scared me. I had just been diagnosed with a disease I knew little about. So, to be told I needed major surgery to save my vital organs from permanent damage, was terrifying. They excised my Endometriosis from my bladder, ovaries and fallopian tubes, but the worst affected was my bowel. It had grown so deep into my bowel, they needed to resect it. Five and a half hours later, I was out of theatre with a stomach drain, catheter and a whole load of pain. Yet I felt relief. My pain was finally validated. I felt listened too. But I could shake the fact, I was two weeks away from my 18th birthday and had just been diagnosed with an incurable disease, I would have to live with forever. I never thought I was going to wake up one day and not get better.
My pregnancy journey.
I was told at the age of 18, I’d never conceive due to my Endometriosis and the damage it had left in its path. Two years into my relationship with my now husband, we decided to try for a baby.
A year went by and I was referred to Hewitt Fertility Clinic to begin our fertility journey. I knew Endometriosis could impact my fertility, but I thought I had age on my side. After all the fertility tests and scans, we were told my husband was in perfect health, and the problem lied with me. Our only option was IVF.
We agreed to be referred, discussed it with specialist nurses and the consultant. We were due to start our first round of IVF on 14th of September 2015. Two weeks before, we found out I was pregnant! We were in utter shock and finally thought the universe was on our side. I count my blessings every single day that I was able to conceive our daughter naturally. Having said that, it didn’t mean we were in for an easy ride.
I found it hard documenting my pregnancy journey. I was aware I was in such a blessed position, but at the same time I really struggled to remain positive and present during my pregnancy. At 8 weeks pregnant I was diagnosed with Hyperemesis Gravidarum. I was hospitalised for weeks with severe dehydration from constantly being sick. It wasn’t just morning sickness. This was all day, everyday. To the point where I was delirious a lot of the time. I lost a lot of weight during my first trimester and it followed me right through my pregnancy. I also bled through my entire pregnancy – which was very scary. I was classed as high risk due to my previous surgeries and problem with adhesions. I had growth scans every four weeks to ensure baby was safe. I’ve lost count of the amount of times I was hospitalised due to increase in bleeding, but baby stayed put until I went into natural premature labour at 34 weeks and 6 days. Grace was born at exactly 35 weeks gestation. Our world was truly complete. All the pain and anxiety I experienced had gone away. We were kept in for 5 days, but after that we were allowed to take her home. All 5 pounds of her.
Fast forward to June 2020:
I’m 27 years old, with a four-year- old daughter and a husband whom I’ve been with for over eight years. The past four years since Grace was born have been amazing, but equally tough. I’m not moaning about being a mum; that’s something I’ll never do. I’m talking about the deteriorating health and longing to do things ‘normal’ people do with their children. It’s hard. You beat yourself up about it. I purposely stayed away from mum and toddler groups because I didn’t want to have to explain why I couldn’t do what they did.
Chronic illness and pain can be invisible to the majority of people. Until you share your story. Still, then you can find yourself coming across some very ignorant people. We were medically advised not to have any more children due to the damage I had. Something I make no secret about. Yet still we find ourselves being asked when we are going to give Grace a sibling. It’s frustrating and upsetting. It drudges up feelings you thought you’d put to bed. If there is one thing in this world I could change, it would be to make people more understanding of others.
My ileostomy story.
As I write this, I’m currently recovering from my 11th operation. On the 16th of March 2020 (day before my daughter’s birthday) I underwent a major operation to have a permanent ileostomy formed. It was done thanks to the damage left behind by Endometriosis and scarring from previous surgeries on my large bowel. I developed slow transit bowel disease; where my large bowel gradually stops functioning. Every 4-6 weeks I’d be hospitalised to receive treatment to try and partially clear my bowel. Before I had this surgery, I lived life in constant fear of my bowel perforating.
We were advised by my colorectal team, the only option is a permanent ileostomy. It was a life changing surgery, but I knew I could do it. I had lived the past 13 months with an indwelling catheter, so what was one more bag? Jokes aside, this surgery wasn’t just about me. It was about being present for my husband and daughter.
My ileostomy isn’t a cure, but it’s relieved something that controlled my life for many years. Endometriosis destroyed my once functioning bowel. I went from bowel incontinence to chronic constipation in the space of three years. I had countless treatments and tests, even having surgery to implant a sacral nerve stimulator in my spine to help control my bowel muscles. Unfortunately, none of them worked. An ileostomy was the last option. Although it’s far from perfect, it helped. Which is all I need.
I am now nearly 14 weeks post Ileostomy surgery and feeling relatively OK. I struggle daily with chronic fatigue and chronic pain in my lower back, but aside from that I’m feeling good. I’m managing my stoma well, its healed amazingly. According to other people its ‘cute’ but I wouldn’t go that far. In the early days, I cried every time I looked at my stoma. It’s my small intestine coming out the surface of my skin and the thought of my insides coming out haunted me in those first few weeks. But once I started healing and the post op pain started to settle, I found myself accepting my new body. Thanking my stoma for functioning better than my large bowel ever could.
I still fear the future as I know I’m heading for another Endometriosis excision surgery with a hysterectomy. But right now I’m trying not to focus on that. I’m trying to get through this year with only 1 surgery. Suffering with Endometriosis is debilitating both physically and emotionally.
If you are reading this and also suffer with a chronic illness, remember to give yourself a break. We don’t get a manual when we’re diagnosed with a chronic illness. We don’t know what to expect or how to handle this rollercoaster ride. It’s OK to feel active one day and spend the next few days in bed recovering. Do what your body needs and don’t apologise for it. At the end of the day no one ever asks to be plagued with a chronic illness.
Written by Anna Cooper.
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