Well, this could definitely end up being longer than I originally planned, so I apologize if this ends up being a small novel.
To begin with, I started having symptoms
around November of ’08,
and after some extreme bloating,
mysterious bloody poop,
and some increases in cramping,
I finally went to the doctor around March ’09.
After trying to give me antibiotics for C-diff, and with no results, my doctor decided to have the surgeon do a rigid scope at the hospital. He finished the scope (after MUCH discomfort on my part), and concluded that I must have Ulcerative Colitis. The manner in which the surgeon said this really shocked me, and scared me, as I had no idea what that all meant. I felt I was in the dark, and I was really afraid as to what it all meant for me in the future.
*** Side Note ***At some point, before after the scope (I can’t remember), I was put on prednisone to ease my symptoms and pain. And so began my two and a half year relationship with the evil steroid…. ***Side Note***
where they marked where my stoma would be
I was scheduled for my first colonoscopy, and soon figured out that the really bad part of it all was simply in drinking the nasty peg-lyte beforehand. In short, I was officially diagnosed with UC, and then put on Pentasa, six 500 mg tablets a day as my medicinal therapy. My symptoms were eased somewhat, but I was still on a high dose of prednisone, and wasn’t even beginning to taper off of it yet.
Throughout the next year I had many flares, and more or less stayed on prednisone.
I can’t remember how many courses of the steroid I have done, but it’s been many, and the longest I’ve stayed off the horrible drug has been no more than 2-3 months.
I was eventually introduced to Imuran, and started on 50 mg once a day. That didn’t really work, so my doctor upped the ante and put me on 75 mg. I started getting canker sores and ulcers in the back of my throat, and my doctor thought it might be because of the imuran. But he kept me on it and put me on prednisone again, at which point the ulcers disappeared.
my stuffed rabbit
Throughout my life with UC, I have struggled, suffered, cried, and on a few occassions just given up on life. I’ve been prescribed Cipralex to help with my depression, however I think I can wean off of it now, as things are doing SO much better.
I missed much of my grade 11 year, only finishing two courses because I was often not able to make it to school because my cramping was too bad, or I couldn’t bare the thought of ducking out of class so many times just to run to the washroom. There’s been more than a couple of times that I nearly had an accident. I had to take the second semester off of that year, and when I came back for my grade 12 year, I had to finish eight courses (to make up for grade 11). They were all the more difficult ones too, as I needed them for university to get into nursing.
To sum up, with much tears, much support from my teachers, and over a month in absences from school, I did manage to graduate with honours and an average of about 89% in my classes. Not bad hey?
But needless to say, I was extremely stressed out, and often felt like it would never get better.
Why weren’t the medications working for me? …. I asked this question many times.
My doctor mentioned Remicade to me on a couple of occasions, but I declined. From what I’d researched and heard from many people, it was not something that I thought was worth trying. My body was tired and worn out, and pumped full of so many drugs that I felt I would never be in balance again.
first picture of my stoma and ostomy bag
Hair loss, facial hair, acne, weight gain, weight loss, excess sleep, insomnia, depression, anxiety, anger, eyelashes falling out, nausea, joint pain…. This is just he beginnings in a list of side-effects I was dealing with. While at its worst my UC could cause me upwards of twenty bowel movements a day and extreme cramping and bleeding, I felt I was dealing with an entirely new disease with the cornucopia of side effects I was dealing with.
Oh, forgot to mention that once I needed an iron infusion because I was so fatigued and wasn’t getting enough out of my food to keep my iron levels up.
Before I move on to the most recent decision in taking care of my UC, I want to mention just how important it is that you accept and ask for the help that you need from loved ones. I have a boyfriend that has been with me since I was diagnosed. He has helped me through several emergency room visits, sleepless nights, and horrible days. Never has he complained about anything, been disgusted by what this disease entails, and has always been there for me when I need it. I’ve also always had my mom by my side (the best mom ever!), and so
my incision after a couple of days
lucky that she’s been a registered nurse for almost twenty years. Then there were my godparents who took me in and let me stay at their ranch as a sort of sanctuary, and were always there for me too. Then the few friends that have stayed by my side, with words of encouragement when I needed them most. I am so grateful for everyone that has and is helping me through this. I could not have done it without all of them.
Which brings me to my surgery. I was finally done with dealing with such a chronic disease and crappy quality of life. I finally talked to my doctor, and before I knew it, we were driving to Vancouver to meet one of the best surgeons in the country at the hospital that had pioneered the very surgery I was looking into: removing my large intestine and giving me an ileostomy. Now, I’ve always been terrified of the idea of having such a big surgery, what life would be like
getting fresh air after surgery
after, and how I could possibly cope with having a poop bag on my hip. But I finally decided “How could it be worse than what I have been dealing with for the past nearly three years? I can’t do this anymore.”
After seeing two specialists that were complete quacks and just told me to stay on the prednisone, when my reason for seeing them was to find different treatments so I could get off the terrible steroid, I was nervous about whether the surgeon was even going to listen to me. With much good luck, I was able to see the surgeon within a couple weeks of being referred to him. And he LISTENED. I understood the hell I’d been through. How tired and broken I felt. Finally, I felt that my life would start again.
Two weeks after seeing the surgeon, I get a call that there has been a cancellation and would I like to book for surgery on November 1st… HELL YES!!! I don’t think I’ve ever been so excited in my life. I felt like crying when I told her “Yes, absolutely!” My mom managed to get the time of work to go down with me, and we were off to Vancouver again before I knew it.
The day before my surgery I walked into St. Paul’s Hospital, and had an appointment with the stoma nurse and the anaesthetist. All went well, and then it was just one day before the big surgery. I did not sleep much that night.
I went to the surgery at 11:00 am, and as soon as I got there I started to panic. All sorts of doubts were running through my mind, and I started to cry and wouldn’t let my mom hug or touch me. I changed into the gown and boots, and gave my things to my mom. It was all beginning to get too real, and I was really starting to wonder what in the hell I had gotten myself into. But I spoke to one of the nurses, and all of a sudden I became calmer and more confident in my choice. This had
a gift basket I got :)
to be the right decision, it was my way out of the horrible life that I had been dealing with UC.
I was brought into the pre-op room, where my mom stood by my bed and I had several people come visit me: one of my doctors, a couple of nurses, and my surgeon. They all made me feel more relaxed, and like I was the only patient in the hospital. I won’t ever forget what my surgeon, Dr. Raval said, “An 18 year-old suffering is high on my priority list. I had to get you in quickly. And I know that after this, you will feel so much better and you will get your life back.” He truly cares, and I would recommend this surgeon to ANYONE. He’s so compassionate, and knows absolutely what he is doing.
Then the time came for me to go into the operating room. Preparation went quick, and I was under.
When I woke up, I immediately regretted telling them I didn’t want an epidural. It was seriously the first thing I thought to myself: “I am SO getting an epidural next time!!”. The pain was the worst I could ever imagine, even competing with the kidney stones I’d had earlier in the year. To top it all off, I was having some sort of bad reaction with the ativan they had given me, and so I was barely breathing, heart racing, and in the recover room for EIGHT HOURS. I only remember enough to make up 15 minutes, however.
I spent a mere 4 days in the hospital after my surgery. I was well looked after, walked as much as I could every day, and was off the Dilaudid after the third day. What was so amazing, though, was that I felt better the day after my surgery than I had going into the surgery. I couldn’t believe it. The worst part about recovering was the gas pains and bloating. It pushed on my diaphragm and sent referred pain into my shoulders, and it hurt so bad I would cry and cry, the
surgery incission after a few weeks
nurses giving me the pain medication that they could and my mom holding my hand until it got better.
I eventually made it home (it’s a 14-16 hour trip home, by the way) and began to relax and settle in.
I’m starting to get used to my ileostomy, and everything that comes with it.
It’s not always easy, and my body is still recovering and my appetite still isn’t what it used to be…. But I feel so much better.
I HAVE MY LIFE BACK! I couldn’t have asked for anything more.
I came home to a wonderful, loving boyfriend, who thinks nothing of me having a bag of poop on my side, a mother who stayed home to care for me, many friends who spent time with me when I got home, and much support on facebook from friends, family, and fellow UCers. My surgery and recovery could not have went any more smoothly, and I am just SO thankful. Every day I feel better, and I’m so happy that on my 19th birthday I can say I no longer have UC and I feel NORMAL again!!
I hope that anyone that is now considering surgery finds a surgeon and hospital that they trust and does make the decision. It has turned my life around 180 degrees, and I am all the better and happier for it. And if you are managing either by diet, medication, marijuana, or whatever, GREAT! :) I am so happy for those of you that are. I hope that you can get into and stay in remission for as long as possible, and that you have very few colonoscopies.
Medications:
Best of luck every one! I will update again soon. :)
~Cassandra~
(submitted in the Colitis Venting Area )
I had a very chronic and painful two and a half years of Ulcerative Colitis, and underwent various different kinds of medicines and therapies to cope. I just graduated high-school, but university is on hold due to surgeries. I was once very active and spent lots of time outdoors, but now have to wait to heal before I can do so again.
