Six weeks later

Today marks six weeks since my last operation. I checked into the hospital to have my stoma refashioned and a proctectomy to make things permanent. An unmanageable case of proctitis made it so I couldn’t live my life to the fullest. My disease had spread to the glamorous stump left over following ileostomy surgery last year. My stoma bag improved my quality of life drastically, but I felt like I had plateaued. Fatigue ruled my days, stopping me from working and going to the gym. During the evenings, I found I couldn’t stay out late because that was when the pain would get the best of me. Towards the end of my stump’s lifespan, the pain was sometimes too much- hot water bottles, strong analgaesics, and even my trusty TENS unit would ease the pain, but sometimes it wasn’t enough. The time to go back under the knife had come.

screen-shot-2016-11-22-at-16-18-54After a complicated hospital stay last year, I was anxious about what could go wrong this time around. I had a bit of a ‘wobble’ a day or two after I woke up from anaesthesia, bursting into tears when doctors came into my hospital room to check on me. I blame it on the tranquilisers I was taking, combined with lack of proper sleep and anxiety. Luckily for me, a brilliant nurse whom I had met last year was on my ward, and between her extraordinary care and a visit from my psychologist, I gradually relaxed. The last few days of my stay on the ward consisted of snacking on candy corn sent over from the US, watching RuPaul’s Drag Race on Netflix, and doing lots of colouring. This time, my hospitalisation was a breeze.

In the six weeks since the operation, my wounds have healed, I have taken myself out into town shopping and Pokemon hunting, and not once have I felt overcome by fatigue. I know that I am not out of the woods yet, and I’m still not cleared to rejoin the gym, but in another couple of weeks I will be. My illness has taught me to pay close attention to my body, and appreciate the little things in life. I am feeling positive and stronger each day, and look forward eagerly to what the new year will bring.

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I am a Gilmore

Sometimes I forget that I’m not just an ostomate. I’ve spent so many months out of work either in bed or on the couch, wearing pyjamas and blasting through Netflix. When you spend most of the day with a cat because you’re chronically ill, you lose sight of certain things, like your identity and the things you enjoyed doing before you got sick.

Growing up, I was a lot like Rory Gilmore, except I was weird, ethnic, not rich, and a gamer. I moved around a lot, but I always loved school- I even went to the National Spelling Bee in Washington, D.C. I was a fiend for Pokémon cards and Gameboy games, and loved playing Halo (minus the levels with the Flood). I’m still obsessed with hunting for Pokémon on my iPhone and I have clocked far too many hours playing Elder Scrolls games. I read The Hobbit and The Lord of the Rings when I was ten, and even believed Middle Earth was a real place, like Fiji.

In junior high I got into the likes of Blink-182 and Evanescence. I had just moved to Alaska, and the first Underworld movie came out. I learned about Hot Topic and I think we all know what happened next. When I started high school, I took up guitar; my hands were too small to play when I tried as a child. Eventually, I became the singer and rhythm guitarist for a classic rock cover band called Bean Sidhe (pronounced Banshee). I miss performing at pep rallies and football games. I’m a real diva.

When I was on the ward for two long months last winter, there was one major event I was looking forward to, the light at the end of the tunnel. I was released from the hospital in time for Christmas Eve, and went straight to the cinema to watch Star Wars Episode VII: The Force Awakens with my husband. He’s definitely a rebel, and I have a thing for Captain Phasma. But hey, opposites attract. Long story short, we’re big into Star Wars.

My other interests include beer, cheese, cruelty free makeup, and witchcraft. I have a BA in literature and an MA in medieval history, with hopes of getting a PhD. My illness has thrown the brakes on a lot of things, but it’s also done me some good. My perspective on life has changed massively. I’ve learned a lot about my body and my mind, and I’ve had a lot of time to catch up on things I missed out on along the way, such as Gilmore Girls. I’ll always be an ostomate, but I was a weird girl first, and always will be.

What’s on the Menu?

My love for pizza could rival that of the Teenage Mutant Ninja Turtles. I proudly boast of the week when I ate pizza every day for dinner. Unfortunately, human diets require some diversity, so I have to mix it up every now and then. Prior to my ostomy surgery, I counted myself lucky because I ate whatever I wanted, whenever I wanted. For a lot of people with IBD, certain foods can cause problems. Contrary to popular thought, what you eat will not cure your disease.

Following surgery, I developed a case of what I now know is ileus. My digestive organs (sans colon) went into shock and I found that I couldn’t eat at all. On the surgery ward, I was fitted with an NG tube to help alleviate the bile that had built up in my stomach. After the NG tube had done its work, I had to go into theatre to have a central line fitted in my neck. I needed TPN (total parenteral nutrition) for over two weeks, receiving the nutrients I needed to survive directly into my veins. At first, the smell of food at meal times on the ward made me sick, but soon I found that I wasn’t hungry at all. However, I made a ridiculous list of foods I wanted to eat when I was discharged. I even dreamed of food.

After my central line was taken out, I started on a low fibre diet. McDonald’s food, white rice and bread and pasta, sweets and cakes… If it sounded unhealthy, it was on the list of approved foods. The nutritionist working on my case encouraged me to eat more and more cheese. It was like I had died and gone to heaven! I needed to eat around the clock after coming off TPN, so to facilitate this, my brilliant nurses kept a stash of cheese in a fridge on the ward just for me. I swear, it’s like they didn’t want me to ever leave.

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Naked Deli protein shake and frittata with goats cheese and sweet potato. In other words, YUM.

When you have a new stoma, food is all about trial and error. I kept very careful records of what I ate and when, along with logs of what fluids I was getting. This is important so you can learn which foods agree with you and which ones don’t. These days I keep a careful eye on what’s going on my plate, but I more or less eat whatever I want (barring sweetcorn, mushrooms, and whole nuts). Don’t be discouraged if you can’t tolerate baked beans as soon as you come out of hospital; in another week’s time, you could find yourself drowning your breakfast toast in baked beans with no problems. Oh, and go crazy with the Haribos.

 

Happy (belated) Stoma-versary!

My real stoma-versary was on Bonfire Night, the 5th of November. It’s been nearly a full year since I last went to work. Let me tell you, as many wonderful things as there are on Netflix, it does get a bit dull from time to time. A full year out from ileostomy surgery, I’ve had some good days and some bad days, but I am happy to report that the good days definitely outweigh the bad.

15087038_10153821379745728_1455477631_nFor one thing, I’ve never had a blockage (touch wood). Maybe I’ve been really cautious around food. I’m a pescatarian, and have been for nearly ten years, so my diet is already on the restricted side. I’ve never had what you could call a perfect relationship with food, but now I find that I pay a lot of attention to what I eat, how much, and when. I know I still have room for improvement; I could afford to get more vitamins and nutrients, and sure, maybe some protein every once in a while.

Another beautiful thing about not having a colon: I no longer need to have access to a restroom every moment of every day. My stoma has given me a plethora of gifts including a sense of freedom that I did not have when my UC was raging. As a result, I am happier, more relaxed, able to make plans with friends and family members, and be spontaneous.

The final point I want to make regards my future. When I was sick, I didn’t have the peace of mind to think about the future. I lived day to day, week to week, and if I had to buy plane tickets, there was always the anxiety that I might not manage the journey. Today I feel like a different girl. My life hasn’t turned out the way I imagined it would, but at the same time, I’m only 25. I have plenty of time to figure out what I want to be when I grow up, and for that, I have Billie to thank.

P.S. Billie is the name of my stoma.