Adjusting to a colostomy is tough. For me, it was like a horrible dream. But with a positive mindset, I soon adjusted to my new life.
This article is a colostomy patient’s story about a dark time of her life, a journey that took her through personal medical trials and tribulations, finally ending up with colostomy surgery. It has been fraught with many challenges and spanned a period of twenty years. That patient is me.
If compared to the medical travails of some, maybe it wasn't that terrible because many have gone through worse, but to me, waking up that morning on a hospital bed, tubes all over the place, beeps and flashing, and with a colostomy bag stuck to my abdomen, I thought it was the end of my world.
How did it all begin?
When I was eighteen, I woke up one morning with excruciating stomach pains and within a few hours, I was in the hospital. Diagnosis showed I had endometriosis. That perhaps explained why I always had painful periods and cramping before the onset of my periods and extended several days into it.
I spent a couple of days and was subsequently discharged. I was placed on some form of medication. Case closed, or so I thought. Ten years down the line, I discovered that I had difficulties conceiving, after a series of doctors visits and tests, I found that I had fibroids.
And so, the 'journey' began.
The first surgical procedure I had was a myomectomy, an operation involving the removal of uterine fibroids. I was in my late twenties. My surgeon told me that he successfully removed some, but the tinier fibroids were hard to remove, so he left them in.
Finally, I heaved a sigh of relief that it was all over, but it wasn’t. I still didn’t get pregnant. Then the fibroids started to grow back. Did I hear that an ‘idle’ womb breeds fibroids? I think I did, somewhere.
It was recommended that I shrink them with injections, but they never helped beyond a few months, so, I had to have a second myomectomy. However, by the time I had the courage to undergo surgery again, the fibroids had become so large, they weighed close to 5 kilos. It became an issue to remove them or squeeze your other organs to ‘death’. Many people thought I was heavily pregnant; that’s how massive they were. They just had to be removed.
How it All Went All Wrong
I checked into a private hospital in Wolverhampton in the UK. I was booked to undergo a myomectomy, stay in a hospital for a maximum of 7 to 10 days, heal well, and continue with my life. I was tired of walking around looking like a seven months pregnant woman.
During surgery, it was discovered that my uterus had adhered (gummed was the word they used) to parts of my digestive organs. Reasons adduced? The sheer size and rate of growth of my uterine fibroids. So, I had to have a hysterectomy.
My surgeon told me that my uterus had to be "dissected out" and away from the organs, it had gummed to. The hysterectomy surgical procedure was performed successfully. After surgery, I stayed in the hospital, waiting to get well enough to go back home. I had accepted my fate and was ready to get on with my life.
It was not meant to be.
My Post-Hysterectomy Experience
Four days after my surgery, the doctor on ward rounds took a look at the medical charts hooked to my hospital bed's footboard and displayed a slight but perceptible frown. Yes, I caught that fleeting look.
From that point on, I had to take a series of tests. My temperature had been running high and I started to feel weak. Before the end of the day, my recovery, which appeared steady a couple of days post-surgery began to deteriorate. Blood cultures were taken and the results, which never comes soon enough, was not good.
I was immediately instructed to stop eating any food and stop drinking fluids, even before the blood culture results arrived. They took an abdominal scan and it showed images of a dark area spread around my lower digestive tract. They told me that it wasn’t good, but I didn't fully understand what was going on.
I first started to feel alarmed, then I became really scared! I was immediately put on powerful antibiotics intravenously.
Then at night, the hallucinations began.
A little nap and I get horrible dreams. At night, it was never ceasing. I had bad dreams of giants, death, and deadly forms, crashing high-rises, everything trying to crush me.
I hallucinated of dead bodies, blood, evil, mangled giant trucks and spinning cars. Soon, I started to fear sleep and made desperate efforts to keep awake. Dreamland was utter chaos. It was literally "walking through the valley of the shadow of death".
When I complained to the doctors, they decided to reduce my antibiotics dosage and after that, I was finally able to get some good sleep.
An Emergency Colostomy Surgery
"You've got a leak in your bowel and faecal matter is seeping into your system; septicaemia is imminent. You’ve got to have surgery no later than a few hours".
It was 9 pm at night when it became an emergency, but I still didn't understand what it was all about but from the look on my surgeon's face, I knew something was terribly wrong and I really felt afraid.
The private hospital I was in lacked a well-equipped operating theatre with intensive care facilities, so arrangements were made to transfer me to the North Cross Hospital, a teaching hospital with highly equipped state-of-the-art ICU unit with professional monitoring that was next to none.
In haste, I was prepared for movement to the teaching hospital, securely strapped to a stretcher and whisked down to a waiting ambulance. That’s when the realization of the danger I was in hit me. I started to feel alarmed, distressed and anxious. Was I going to die?
As the ambulance sped through the city and the paramedics ensured my comfort, we arrived at the New Cross Hospital in Wolverhampton. My brother, a paediatrician at the hospital, was there to meet us.
By 10.30pm, pre-ops was a frenzy because it was an emergency; a matter of life and death. Needles, tubes, intravenous devices, etc..., were all fixed and attached simultaneously by about four people. I was weeping but soon felt weak. My brother was there, observing it all. I think he was allowed to stay around because he is a doctor in the same hospital.
The jabs were painful, and everything was becoming unbearable. While one nurse was trying to carefully pry off my false nails another was slapping my arm for a vein. Two pricks and I was screaming, I was in anguish. Then I hear a nurse shout, "let's leave that till she's under" and somewhere through the cobwebs of my mind, I thanked her.
By 11 pm, I was wheeled down the corridors to the operating theatre. The last thought that went through my confused mind was "Is this it, am I going to die?"
Then everything went blank!
From what I was told, the surgery lasted for about four hours and that must have been bad. When I came out from the effects of anaesthesia, I could hear faraway voices and saw fleeting images of people, but I ‘wasn't there’.
Someone called my name; I think it was my surgeon. And though I still couldn't fathom what was going on, I know I heard my name.
I felt very heavy and constricted around my stomach and I could barely breathe. It felt like there were tons of bricks tied around my abdomen, or a 20kg lead weight tightly bound on my stomach. My surgeon held my hand gently and asked, "Are you okay?" I think I mumbled or nodded; I can't remember.
I was out of surgery and in ICU though I didn't know that at the time. In fact, I wasn't really aware of much, neither was I aware of all the tubes, catheter, gadgets and other such things that I was hooked to or attached to me.
A Colostomy? First Time I Heard of It
I was told a colostomy procedure had been carried out, apparently as a life-saving measure, but I didn't know what a colostomy was. For the first three days in the intensive care unit, I was unaware of my colostomy, or the bag that was attached to my abdomen.
After seven days, I was taken out of the ICU and transferred to a ward with other patients who had similar ostomy problems. It was when I got to the ward that I first noticed the colostomy bag stuck to my abdomen.
Then I met a young colostomy patient who spoke to me and told me about her colostomy. I was still in a daze. There was also my Stoma Nurse who carefully explained what my condition was all about, what the bag attached to my abdomen was, how to wear it, and how it worked.
That was when I burst into tears, finally understanding the procedure I just had and why I had to wear a shit bag.
I Was In Denial
My Stoma Nurse removed the colostomy bag and I saw my stoma for the first time. I nearly puked at the raw cherry-like button that was the outlet through which my faeces will be expelled. I took my eyes away from it, but the nurse fully understood my reaction. That was when she introduced me to the young lady, about half my age, who was on admission for a colostomy reversal.
The young lady spoke to me about her own experience and how she lived with it. She promised me that I'll think nothing of it after a few weeks and told me how nobody needs ever know I have a colostomy, except, of course, those I want to tell.
She told me how she still went to parties, wore her jeans, and generally do all the things her age group does. She said she continued to live her life as she did before her colostomy surgery.
Certainly, she was an inspiration. She successfully encouraged me and made begin to accept my condition.
Good News - My Colostomy was Reversible
My surgeon had told me my colostomy was reversible, but he also told me I'd have to wait at least a year before an ostomy reconnect.
Because my body had gone through so much trauma, undergoing two major operations within a week, my body needed to heal completely. Plus, I still had the hysterectomy wounds, a deep cut running from my midriff down to my lower abdomen.
Plus, I was opened up in the same cut line for the colostomy procedure just a few days after my hysterectomy surgery. However, this time around, the cut area was not sutured back, but tacked together in a few spots and allowed to heal naturally. Did it look gory? Yes, it did.
My doctor told me that he tries not to perform a colostomy reversal in less than 12 months to give the body ample time to heal completely. He said that within a year, my colon will have healed completely and by then, I’ll be ready and strong enough to withstand another major surgery. It made so much sense.
Physical and Emotional Recovery
My physical and emotional recovery was slow. It was a big challenge, learning how to use a colostomy bag and the other colostomy supplies. Over a week after moving into the ward, I was still not allowed any food because the stoma hadn’t started to function.
Peristalsis must be confirmed through auscultation (listening to sounds with a stethoscope) for intestinal movements before food consumption is allowed.
I was hungry and longed for food consumed through my mouth but instead, I was 'fed' a thick whitish fluid intravenously, through a tube fixed into an artery at the base of my neck. Apparently, it is a delicate procedure that is highly prone to infection, but all went well with that aspect of my feeding. The only problem was I had to have it on for many hours, making moving around very clumsy.
Meanwhile, I was put on painkillers that were self-regulated. All I had to do was press a button to release the painkillers into my body whenever the pain increased or became unbearable.
Then one day I felt 'wind' passing out through the stoma into the colostomy bag. It sounded like indescribable sounds that comes out from a baby's mouth.
My Stoma nurse seemed pleased and expected me to be as well. “The organ is working” she told me. This was the second hurdle to cross, the first being surgery itself.
Was I pleased? I'm not sure I really was at the time. The good part, however, was that I was put back on solid foods and could eat orally. I was given jelly and light broths to start with and they tasted 'heavenly’, after being starved for many days. Now I'll have to start putting into practice what I've been taught by my Stoma Nurse.
For the first couple of days after the first wind was expelled, there was nothing. It became a waiting game but eventually, the awaited human waste started to seep out.
My stoma bag was changed and a new one fitted a few days after my first excrement after surgery. The nurses had to help because at my first attempt, I burst into tears. It was like there was no way I could handle this, and I didn't feel like trying either.
Eventually I did try to change my bag myself, and soon enough, I became adept at it that I amazed the nurses.
Before I left the hospital, after being on admission for about four weeks, I became confident about managing my colostomy, could change my bag in minutes, and had learned what it entails to care for my stoma.
I wish to, once again, thank the North Cross Hospital in Wolverhampton, my surgeon, Mr G. Williams aka ‘Mr Bean’, the kind doctors on ward rounds, my Stoma Nurse, and all the kind and lovely nurses who took great care of me while I was a colostomy patient in their hospital.
This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.
© 2010 Alobeda
Alobeda (author) from The Global Village on June 30, 2016:
I'm so sorry to hear that same happened to you too @Natalie.
I hope all is well with you now.
Natalie on June 29, 2016:
The exact same happened to me in November in a private hospital. I got transferred to an NHS hospital to save my life.