No Colon, Still Rollin'
*Disclaimer: It has taken what seemed like forever to write this today as my brain feels like a potato. I apologise if it doesn’t actually flow, drags & the grammar etc is all over the shop.*
Almost 3 years ago I fell ill with Ecoli 0157, a bacterial infection within the gut which causes severe abdominal cramping, fatigue and bloody diarrhoea. After about a 9 months, symptoms subsided and I slowly began to get back to myself. However, 2 years ago I spent a few months experiencing some familiar symptoms again. Everyone assumed this was the gut failing to settle after the bout of Ecoli. For the next 18 months I would experience bouts of this, reaching the point of being unable to leave the house for the pain, urgency and frequency of needing to run to the bathroom. After yet another visit to the GP and a consultant I was eventually referred for a colonoscopy with a suspected Inflammatory Bowel Disease.
After a year of being told I was still on the waiting list, 6 months ago I was admitted to the Western General unable to move or eat due to a severe flare up of the above symptoms. It transpired that I had ‘dropped off the waiting list’ for the colonoscopy I’d been referred for ‘as a matter of urgency’. As a result I spent a week in hospital on IV steroids and left with my newly diagnosed Ulcerative Colitis beginning to behave.
Fast forward to April 2017 and, in the midst of working hard and having started my Yoga Teacher Training, my body decided it was time to have a bit of fun. The usual suspects: hair loss, intense cramping, passing bloody diarrhoea decide to make an appearance. I had been doing my best to keep them at bay with minimal medication, yoga & herbal treatments which appeared to be working really well. I tried to get on with my life as best I could, with Steve doing everything in his power to remove unnecessary stresses from our day to day. I accepted that the life of someone with UC involved this element of unpredictability. However, a couple weeks into symptoms, it became quite clear they weren't going to clear. I visited the GP & had blood tests done. When I phoned I was told they had all come back clear. 2 days later I was in floods of tears walking to the bus for work. As it bumped over the cobbles I tried not to vomit with the pain as I held a hot water bottle to my abdomen and prayed for it to be over. Knowing this couldn’t be my life, I rang the doctor’s again, to be told that my Calprotectin inflammation levels, which should normally sit around 50, were at 970. Classic Katie not doing things by halves! Yet when we arrived at the Western General and the Doctor said, ‘you tried that drug regime and YOU have failed’ (and by the way I wish I’d punched him for that tactless comment) I still had the stupidity to ask to go home on oral steroids!
I was admitted and was back on the same course of IV steroids as I had in October, with little improvement. Soon my inflammatory markers rocketed. They tried me on an additional immunosuppressant but to no avail. On day 7 I went onto a 24 hour drip of a third immunosuppressant and then antibiotics to combat my super low immune system as the doctors struggled to get the inflammation under control. By now I was taking 18 tablets a day, all with various side effects. My mood was soon described as ‘a wasp in a bottle’ and that bottle was being shaken! I never want to hurt of offend anyone but I know I wasn’t the most pleasant during this time. I was sick almost every day from the drugs, even though they had me on anti nausea tablets. before long I had the realisation that, if it worked, this would be the long term drug plan for me. I was struggling to see light at the end of the tunnel and how dealing with these immediate side effects, as well as long term ones of potential pancreas, liver & kidney damage and a heightened risk of lymphoma could be the best option for someone my age! I am saying this not to scare anyone or ask for sympathy, but to be truly honest about what people living with an IBD such as Crohns or Ulcerative Colitis are having to deal with on a daily basis. Through the two weeks I suffered this, the surgical team had been popping their head in and the suggestion of a total colectomy had been mentioned. This would involve removing the large bowel, creating a stoma from my small intestines on the outside of the body and using a colostomy bag for a few months to a year with the intention of reversing it and creating an internal pouch instead. Each time they mentioned this I think I just sobbed as I understood that the medication just wasn’t taking effect. The wonderful Stoma nurses came in and, looking at my frail body which had now hit 6 stone 9, helped me decide on the best location for the bag should it need to happen. They drew the point with a sharpie so it wouldn’t come off ‘just in case’.
Two days later the just in case became a reality. The risk of not treating inflammation long term is bowel cancer. The risks short term are a perforation of the bowel which can potentially kill you so I really didn’t have an option. I cried a lot but felt quite calm at the prospect which I think threw everyone off. So what if I do things a bit differently: if it leaves me free of the horrible symptoms & side effects, a bag is a small price to pay. On the day of my op Steve had been showing me links to describe what the procedure would entail; companies that sold genuinely nice underwear to support a bag, and inspirational people who were living with the condition. To say he has supported me through this would be an understatement. He has dealt with it way better than I could have ever wished for and there is no way in hell I could have approached the surgery with such ease without him.
Lying on the Anaesthetist’s table I remembered my Dad’s advice: ‘take a deep breath and as they give you the meds, imagine Unicorns frolicking through fields of Sunflowers in France’. That was the best part of my day!
I wasn’t shocked to wake up with a bag. What I was slightly alarmed by were the catheter and drain up my bum. I had been truly poked and prodded every which way but they had managed to do the surgery through keyhole so I’d avoided the massive abdominal scar which was a huge relief. I think I spent a few hours entertaining my family while the morphine remained in my system but the less said about that the better. What I will say is I’m still having some pretty mental dreams which is great! The first few days post op were a bit of a blur. Nurses in high dependency were incredible, knowing my goals of getting up & about to my old self for my family coming in, they pushed me just the right amount. There was no option in my own mind, however, to give in. At every turn I gave myself a little goal, whether that was being able to have a cough, or walking part of the way myself to the bathroom. Each day I made small achievements and I have no doubt in saying that, what nurses tell me is remarkable recovery, is so heavily influenced by a positive mind-set and not letting the disease take control of you. If it weren’t for my amazing parents, boyfriend, brother and sister in law & some incredible friends, I don’t know how well I would have been able to keep those spirits up day after day on the ward. There are no words or actions to thank those individuals for their presence and encouragement. Just hope my hugs and smiling face were enough at the time!
We’re now 8 days post op. I got home after 5. And my god, I already feel healthier than I have in months! And I’m sleeping through the night with maybe only 1 or 2 wake ups: a far cry from running to the bathroom in pain 6 times a night! I no longer feel like a sick person, but rather someone recovering from an operation. I have an ostomy bag which I change daily and have to empty at regular intervals but in my opinion that is a small price to pay. I have been as open and honest with people as both myself & they have felt comfortable. I am posting with the hopes of educating some people, and helping others. So what if I poo a bit differently now: if that bothers people that’s their problem. It means a whole extra underwear and swimwear shopping opportunity for me, yippee!
So meet Sally. She is my stoma and has potentially saved my life.
Please feel free to ask me any questions. I might not know the answers yet, but I’ll try!