In December 2012 I was fitted with an emergency stoma. This was because my large bowel was completely blocked due to radiotherapy damage caused in 2010 by treatment for cervical cancer. A stoma is an opening on the body where a piece of bowel is pulled through or whatever part of the body needs redirecting. The part of bowel pulled through was from my Traverse Colon so the type of stoma was a colostomy, meaning I wore a colostomy bag.
It was an awful shock, but something I had to get used to very quickly. Unfortunately staff at my hospital were untrained on the ward and as I was discharged on Christmas Eve the stoma nurses had all left. I had to learn very quickly how to deal with the situation and how to change the bag, with limited help from the medical staff. Luckily the day after Boxing Day help arrived in the shape of one of my fabulous stoma nurses Kirsty. Along with Judy they became my lifeline over the next 5 years.
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| Stoma Bags Lto R Drainable Pouch, Closed Pouch, Drainable with tap |
My stoma was not what you'd call a "normal" stoma and I had lots of issues. I was referred to St Mark's Hospital in Harrow by my fantastic surgeon at Maidstone Hospital - Mr Simon Bailey.
My husband drove me to the hospital, which from the outside doesn't look like anything special. In fact it looks like a building that time forgot, but appearances can be deceptive as the building holds the most specialist staff for everything bowel related in the UK. Patients actually attend there from all over the world and I have met people from Malta, Jersey and Germany who were all undergoing ground breaking treatment at St Mark's.
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| St Mark's Hospital, Harrow |
St Mark's was originally situated in the City of London and a plaque marks the spot today.
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| The original St Mark's hospital |
During my numerous stays there I was often on Frederick Salmon Ward, which is named after the founder of the hospital. Information on the great man can be found here Frederick Salmon. Visitors to the hospital can see a huge portrait of the man himself situated at the North end of the ward. He looks quite stern, but was obviously good at his job!
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| Frederick Salmon |
In July 2017 I was admitted to Frederick Salmon Ward and underwent an operation to remove the damaged section of my colon and re-sect my bowel. After the operation I was left with a stoma to rest the new join that had been made. This time the stoma came from my Ileum and formed an ileostomy. I now had to wear bags that were drainable as waste from the ileum is mainly liquid. Think of your bowel as a washing machine. The food goes through your stomach and intestines and into your small bowel as a liquid with a few small lumps such as undigested items like sweetcorn or peas. The waste then travels upwards through your Ascending Colon and into your Transverse Colon, which lies just under your chest and runs right to left. As the waste travels through water is removed from it forming a more solid stool. It carries on downwards through your Descending colon - which I no longer possess! - into your rectum and then out through your anus.
Looking at the image above I am missing from just after the transverse colon to my rectum and my ileum is now connected to my rectum, taking the Ascending Colon out of the equation. Phew!!
Unfortunately after my operation somethings started to go wrong. I developed pockets of fluid in my pelvis and rectum which became inflammed. On my birthday I ended up in theatre having the fluid drained using a very large needle that had to go through my bum cheek! This was done whilst I was awake. Ouch!
A few days later I began to vomit everytime I sipped water. It was horrendous and I felt absolutely awful. I had to have a Nasal Gastric Tube fitted, which was not nice at all. My lovely friend Michelle ended up holding my hand and hugging me whilst they did it.
Once they began to aspirate my stomach, it eased the uncomfortable feeling, but the pain was still unbearable. I also had to have a PICC Line fitted through an artery in my arm to provide me with nutrition. Every night the nurses fitted me with a special feed called TPN to keep me going. Each feed is made especially for every patient by the Gastroenterology team and the right amount of calories and vitamins etc are measured out and mixed in.
I was also visited by the pain team who fixed me up with a PCN machine. This delivered a measured dose of strong pain medication every 2 minutes if I pressed my button and boy did I have to press that button!
Eventually it was decided I would need emergency surgery. This was not a decision taken lightly as my other surgery had only been 2 weeks previously. My consultant said it would be like operating on tissue paper, which didn't bode well. The team told my poor hubby - D - that I may not make it through recovery. They had to perform the surgery via an open incision, whereas my last surgery had been keyhole. When I woke up in Intestive Recovery I felt lousy. The pain hit me like a train. D said he could hear me screaming and crying as he came into the ward. The team were fantastic giving me every drug they could including Ketamine! Then they decided to give me an epidural to hopefully numb me from the waist down. Unfortunately it didn't numb the area that was worse affected and I was still in immense pain. D sat with me for 3 days whilst I went through a very traumatic time. The pain came in waves and was excruciating. I felt sorry for the other ladies on the ward, but when I started to recover they were all lovely and very concerned for me.
I did begin to recover and 4 days post surgery on very shaky legs Sister Olivia took me for a short walk down the corridor. I really didn't want to go as you can imagine, but it was the best thing for me. The epidural began to wear off totally, but unfortunately the site became infected and I needed IV antibiotics. Things kept going from bad to worse, my ileostomy leaked all the time and I was finding it difficult to cope with it.
However the staff on Frederick Salmon were brilliant and helped me clean myself up everytime I needed them to. A few of the Staff Nurses went the extra mile and would bring me my pain medication on the dot when it was due, so I didn't have to wait.
I stayed in hospital for 4 months in the end and made many friends with other patients and staff. The ward had become like home and I even celebrated my 10th Wedding Anniversary to D there. We had a piece of Victoria Sponge each from the canteen, which was delicious.
In May 2018, the time came to remove my ileostomy and see if my body could cope with going to the loo through the new join without pain or urgency.
Well 200 days ago that surgery took place and fingers crossed I am able to use the loo like a big girl. I have days where I'm in pain, I have days where I can't stray far from a loo and I never leave the house without a change of clothes and various cleaning items affectionately known as my "Shit Kit"
However........
LOL!! Work colleagues nicknamed me Wonder Woman and one got me a Itty Bitty Wonder Woman which stayed with me in hospital.
Living with an invisible illness is hard. I can look absolutely fine on the outside and feel like poop on the inside. Inflammation in your pelvis doesn't show up in your face. Fortunately invisible illness is a lot better understood these days - at least by some people - and people can continue to work and live a pretty normal life with support from others.
I want to thank Mr Warusavitarne along with all the staff at St Mark's Hospital. Nyarai, James, David, Shynu, Gilda, Olivia, Mercy, Shree, Catherine, Vanessa, Anil to name a few and my stoma nurses from Maidstone - Kirsty and Judy. Michelle our best friend who went above and beyond on visiting duty and by cooking meals for my hubby and son. My friends, Susan, Kevin, Mary, Tara, Pat, Melanie, Christian, Ginny, Mary, Ed and Karen who all visited me along with my sister Linda, who got lost the first time! Mel for sending me Amazon vouchers to keep my Kindle nice and full. If I've forgotten you I'm sorry! My brother in law Justin, my close friend Val and of course my son Glen for helping me recover and last but not least my darling husband Dylan. Without him I am nothing, I could not have coped without him by my side and afterwards at home caring for me.
I will get through this and I will survive!
Thank you for reading and if you need any information on anything mentioned here please let me know. If you have any questions about stomas, please ask me. I'd rather you ask then guess!
