Posted 5/22/2011 7:07 AM (GMT 0)
Hi
An introduction before the long & nitty gritty.
I have had ulcerative colitis for two years. I will explain from being diagnosed in USA just shy of completing my first year of college to where I am right now, typing this post in gorgeous Sydney, Australia.
First off, I realize I am very lucky. I discovered the healing well forums when searching for remission strategies over the course of flareups. I have been thinking about making this post for a month now and today is the day, lucky you and thank you for reading. Your stories that I have read on this forum make me feel very lucky and blessed: I have an incredible GI doc, I have had no complications from medication, I am young and fit, ready to accept and deal with change, support only myself, do not work 40 hours a week, and more importantly, ready to fight. My advice is not for everyone, but I hope some find my story inspirational and will help you feel better about yourself and your condition. Now that this has been said (typed), my name is Charly and this is my story.
2009
Towards the end of my freshman year at college I was pretty constipated. A lot. I was also experiencing "wet farts" or a leaky gut as some have called it with some blood. I was pretty tired too. Getting a full nights rest, coming back from maybe 3 hours of class, and going to sleep. I told mom, she got crazy worried, taking me to different ERs, being tested for parasites (results: negative), put on laxatives, fiber, flaxseed, peoples fingers going up in places I didn't know existed, finally an appointment with a GI who felt the tenderness around my colon and scheduled me for a colonoscopy.
I was diagnosed at the young age of 19 at the end of my first year of college with chronic pancolitis and 2 benign polyps. I was put on Lialda, 1 pill 2x a day and lactaid pills when consuming dairy. Disease quickly went into remission through low residue diet, medication and rest. I successfully pushed the disease into remission. A month later I was sipping on rum drinks in the Carribean eating buffet 3x a day, parasailing, and occasionally drinking the tap. Life is good.
Around Thanksgiving I was to have my first flare. I should have listened to South Park (http://www.youtube.com/watch?v=5s64jaPjHbU&feature=related) I had some chipotle sauce on a sub and man I was to pay for it. This was my first time experiencing the colitis diarhea. Red bowls, couldn't even keep down (or up I should say) water, could barely go to class. But why the heck was ginger ale fine to drink but water not? Then I realized the water at my school tap is not good, too much chlorine, even through a Brita filter, however fresh bottled spring water works well. Loaded up spring water, and peanut butter and jelly sandwiches.
Dr said double your Lialda dose. I did, and with PB&J 3x a day, within 3 weeks or so (by Christmas) I was back to normality. Nice going me.
2010
Drinking at college is part of the lifestyle. I am not a drunk, I will party hard on that occasional Thursday night, but mostly I enjoy being social. I need to find what my disease will tolerate. I realized that beer did not work. So I became a classy ba*d (get it?) drinking lots of red wine. Mmmm. Also keeping dairy to a minimum, not eating fastfood, and taking it easy on the terrible cafeteria food. Soy milk with cereal. Apples 1x a day. Life is good. In fact, even though one year is one year away, I am beginning to consider studying abroad next semester. It is something I have always wanted to since high school. I am traveler, I go places, and I do things. So I picked a couple of brochures and the idea took a seat in the back row of my mind.
3rd of July, really drunk. Intestines are bothering me before I sleep, I pop another Lialda. Next day, lots of d. As should be expected when drinking those highly sugared flavored Smirnoff vodkas. Next day, fine. Nice job.
August comes and still on Lialda 4 pills a day. I was also beginning to experience tendonitis in my right arm. I am a guitar player and I play a lot. I mean a lot a lot. It is a great form of expression, it will always listen and I always listen back. Fair trade. I also rode my bike a lot during the summer. Like a lot a lot. Gone for days, biking for miles, keeping this illness away. I bike for my life. I feel great, save for the arm. I try drinking beer. I do not drink to get drunk. It goes down, and stays up. This is a good improvent, I am healing. Save for this arm... Life is good. Starting to talk about studying abroad in Australia in the Spring semester. Parents are onboard. This is awesome. Life is really good.
Mom suggested maybe dropping one Lialda at night. I did, I felt good. However, getting worried about moving back to university. Life is just so good, relaxing, biking, swimming at the beach, this is paradise! I don't want to go back to 5 classes a day, locked in my room! And my guitar is starting to turn on me, by injuring my arm! I will also have to organize studying abroad for the next semester. Thats gonna be a heavy semester! Especially on someone with colitis. Things are getting weird.
2nd flare. Lasts a long time. I move back to college in September. Dr. says shouldn't have dropped that 1 Lialda but oh well back to 4 a day, and to try hydrocortizone enemas, every night 2 weeks, every other 2 more weeks. Hell no am I putting anything up there! I can beat this like I did last Novemeber. 2 weeks go on... You just pray when you wake up in the morning and you go, there will be less blood than yesterday. Nope, same amount, maybe getting worse. Maybe an extra Lialda at lunch won't hurt? I was right, but it didn't make things better. Pain in the right arm. Lots of wiping with right hand = lots of pain right arm. Can't even take out my emotions with the guitar. Class is stressful, I am trying to study in Australia next semester... what am I crazy? I can't even leave my apartment!!!, no more joyful bike riding, I haven't gone out in a month, ican'tevenbreathe.
I get and begin to administer the enemas. Not near as bad as I feared. The things people will do to feel better.
Around Halloween things are getting back to normal. Not getting drunk, maybe one drink every now and then to be social. No more red wine. Things change over time. However a flavorless expensive vodka with a gatorade works. Drink 2 bottles of water with EVERY meal. Back in remission baby. Accepted into Australian university Spring Semester. Yes. Awesome. Life is good.
Christmas time things get a little hairy. Lots of stress about Australia. What if my colitis is acting up? Won't you be miserable? No, you have experienced remission before and you can do it again. Besides my parents and friends are so excited for me. Great for the morale. I start working to help afford the trip. Make some bad diet decisions and I welcome in the new year 2011 with a flare up. Nice going.
2011
While making preperations for my semester abroad in Australia in my time off in January, I am flaring. I go to GI. He believes if I can get back into remission I will have an awesome time in Australia. He knows who I am. So for now low residue diet and Enemas. Lets do it. I kick it in one week. I will describe in detail this process later in the post. End of January I go party at my school. Flare comes back. This is not good! I am leaving my country to a foreign country for 5 months in 6 days! When I am excited sometimes I am irrational. Guess what, you are too.
This is honestly the worst flare I have had too. Barely eating, BMs like 12x a day. Oh no.
Call the GI, he speaks: 48 hour liquid diet, enemas, rinse and repeat. He has always been right every time I have beensick and I know this will make me better. 48 hours later, no more blood. But starving!!! Terrific. I need to pack. Feel good, just started eating again and woah... On a plane for 20 hours. Disease follows you wherever you may go. Not that I believed it would leave me the moment I stepped off the plane. But by going to Australia, it would be both such a tremendous accomplishment and such an extraordinary opportunity, especially to one who suffers from ibd, that the high and experience created by this trip would help kick this disease into remission forever.
"No worries." I heal. I am 20 years old in a completely new land. I am brave. I take care of myself, I take immodium before kayaking, Everyone is trying kangaroo burgers, while I made trips to the grocery store to prepare peanut butter and banana sandwiches, I peel the skin of french fries (chips), everyone digs in, everyone is pumped to drink in pubs at 20 years old, I go to sleep at 6pm in the hostel with an enema to beat jet leg and illness respectively. Back in remission. In Australia. Life has never been better.
Because I could only bring 3 months of prescription medicines overseas I will need to get more. So I saw a GI out here. He suggested I have a colonoscopy since I have had on/off flares for the past couple of months compared to when I was originally diagnosed I had one a year. That way he will know whats going on with me and I have a great time down under. He also drops some numbers about colon cancer that my GI back home never did. This makes me nervous, I try curry... I flare.
I have the colonoscopy, my GI is very pleased. I am amazed. I only have left-sided colitis. I am winning </Charly Sheen>. This is most likely due to the oral medication healing the rest of the colon. However it is very hard for oral meds to reach the last portion of the colon which is why only the left side is flaring. He says I am doing terrific, by the end of the year I will be tapering of my medicine if I feel the need. Life is good. "No worries."
TODAY
Today I feel great. I have been experimenting with active manuka honey 20+ which is harvested in New Zealand. I eat it 20 minutes before a meal, or go out to drink. My results so far is that it works. It has significantly reduced bleeding in a few days time, and it also helps regulate my digestive system. I am far less bloated than I have ever been or experienced. However I am currently kicking a small flare. Small as in bathroom 1x a day, some blood on tp. Been keeping on it by low residue diet, manuka honey a couple times of day. I am out of enemas, I haven't had one in over a month, I may need to get more. But I am happy with my results even if it is a slow progress. Slow progress is progress. Patience, healing with ibd is never a rapid process.
In the long and short of things, I am going to have this illness for a while. It is a bummer and a blessing that it has invaded my body during my college years. Ulcerative colitis is the yearly health class that I am keeping up with amongst my other 5 every semester. Of course it is the most important, as it is your health and you cannot put a price or a diploma on that.
Since I have had this for a mere 2 years, these are the training wheel stages. I am testing what I can and cannot do. Every day is a new adventure; a new experiment. I am learning from my body what it can tolerate for the rest of my life. I am starting to put a new perspective on food, rather taste aversion. I don't find McDonalds appetizing anymore. To me it looks like a belly ache. Also with big chocolate, dairy filled, calorie packed desserts. They do not look pleasing anymore.
Self control is probably the biggest factor in beating colitis. You need to be able to control your body. You should live every day like its your last, but know you will most likely wake up tomorrow. That being said, what you ate today is going to affect you tomorrow morning. Therefore, don't eat it. Don't go out. Get a book and get your rest. No unnessecary anxietys. Who cares what everyone in high school is doing with there life right now. Do your own thing that you can handle and enjoy. Make your own adventures.
I know most of you are probably older than I am, but I hope my youthful mindset, adventures and perspectives can help you in your ways. Do something new. Get off auto-pilot, change your routine. Tell your boss to F off, this is your life, your body is nobodys puppet but your own. Get off the forums/facebook, Get Thoreau, pack a backpack full of foods you can eat and find your own Walden pond.
Cheers
Charles