Sunday, June 21, 2009

Darkness and Light

Sometimes I feel sad when everyone else is happy. I get jealous that they get to live normal lives. Ulcerative Colitis has altered my fate. I need to realistically think of what may happen to me. People are constantly telling me not to worry about what I'm about to reveal to you, but they cannot possibly understand why I think about these things. Maybe you can understand...

My cousin worked at a cemetery and told me all about the business. Its not wrong to write a Will or buy a coffin and a plot. We'll all die and need these things someday. It occurred to me that he's absolutely right! Smart people plan ahead of time.

Why am I bringing this up? Knowing that I have Ulcerative Colitis, I've thought about what might eventually happen to me. At the best case scenario, I will grow old and have a run in with the occasional flare-up, but otherwise life will progress normally.

At worse case scenario, I've asked myself the following questions: (Its fine if you disagree with me. But I must bring up these topics because no one else will. You may not want to continue reading because I'll be talking about morbid futures that may parallel your own. Consider yourself warned.)

Relationship issues
1. Would it be fair to date someone/get married knowing what burden I might become because of my illness?
2. What if someday I need to get surgery, will my partner still find me attractive if I have an ileostomy bag attached to me? One that is filled with stool? (Please note: I am not poking fun at anyone)
3. Will my partner be willing to assist me if I become completely helpless?
4. Will my partner be willing to clean me up if I soil myself?
5. Will my partner be able to handle my financial burden if I become unable to work?
6. Will my partner still want to be with me knowing that I have increased risk of colon cancer? Will my partner be ok with seeing me go through expensive treatment and a horribly slow and painful death?

Future Family Issues
1. Would it be fair to have children someday? The causes of Ulcerative Colitis are still unknown, however, it is not out of the question to assume the possibility of the children inheriting the disease.
2. Will becoming pregnant cause danger to myself or my offspring? I've read that there have been many mothers with Ulcerative Colitis that have had successful births, but would there be complications and risks of a flare-up? I'd imagine that steroid [prednisone] treatment would not be possible.
3. Is there a possibility that I may die during childbirth, but the baby lives? Would it be fair to the child to grow up without a mother?
4. Is the SCD diet enough to sustain a pregnant woman?

I'm not looking to get pregnant in the near future, but I ask myself these questions now rather than be surprised, overwhelmed and disappointed later.

Again, I bring up these topics because no one else will. These questions sit in the back of my mind. I think about them everyday and it makes me think that thanks to Ulcerative Colitis, my life is ruined because I don't have much to look forward to. I know my disease may get in the way of getting married or having children. My disease bounds me to my home. My disease keeps me isolated. I wish I could go back in time and be the person I was six years ago; extremely happy and optimistic. But I can't be that person anymore. Ulcerative Colitis has beaten me down. A part of me has already died. I lost my zest for life.

I stopped thinking big... my goals are smaller. Much smaller... My top three list consists of:
1. To be able to look into the toilet and find a formed bowel movement.
2. Eat a slice of pizza someday.
3. Not think about Ulcerative Colitis.

Strangely enough, with the entire universe against me, I keep going. I'm holding onto my little scraps of hope. I think about my family and friends that still want me around. I think about my pets that depend on me for their care. I think about all of the Ulcerative Colitis Supporters (you!) who thank me for being brave and inspiring... but I'm just being myself and honest about a subject that no one wants to talk about. I'm not really that special... because I'm sure we are thinking the same things. The only difference is that I'm putting it on the internet.

And last, I'd like to mention that I hold on to the smallest glimmer of hope that one day I'll be able to make a living making art and traveling the world.

Today, Ulcerative Colitis may have won the battle, but it hasn't won the war.


charles said...

Not meaning to be creepy but I think this is the first time I've wanted to hug a complete stranger.

I was dating someone and had a bad flare up that ended with surgery a year and a half ago. She broke up with me shortly after the surgery. I've really distanced myself from others since then. I've been on SCD and it really helps but makes it difficult to impossible to hang out with people, especially new people since everything revolves around eating.

I'm glad you keep going and have some hope, no matter how small. I myself have a very hard time maintaining any sort of positive attitude though I try sometimes. I think it helps reading your blog, thanks for that. Take care.

Amelia said...

today i was diagnosed with chron's disease. for teh last 9 years the dr. told me it was U.C. now i'm scared about how far it will spread. i wonder about what will happen to me. i have the same questions and thoughts u do. everyone does, i think.

Amy said...

I've thought about all the things you have posted about! I'm so jealous of other people that don't think twice about their poop. I wonder if I will grow old (I'm 32 now, I've had UC since I was 23 at least, just diagnosed in 08). I'm hoping that a cure will be found soon. I wasn't diagnosed until after I was married tho I had symptoms before we were married. I told my husband if I end up with a bag he is still stuck with me. I have 2 children. One before I knew I had UC, the second I became pregnant just 2 months after I was diagnosed (surprise!). I was in a flare when I became pg the second time. After a short round of pred (which is perfectly safe during pregnancy!) I was in remission the rest of my pregnancy. Per my GI if one parent has UC then the child will have only a 15% chance of getting it. I have breastfed both of my girls, I feel like this will give them a better chance at NOT getting UC. I'll do my best to make sure they are not over prescribed antibiotics like I was growing up. I totally understand how you feel - you're not alone!

portjeff said...

Fern, my son has Crohn’s and is just starting the SCD diet. While searching for farmer’s cheese, I came across your YouTube video. I love the Ta Da! For Lifeway farmer’s cheese midway into your video.
You are an inspiration to all those with UC and Crohn’s because you fight the good fight each day. Don’t ever quit. We must all pray daily that a cure will be found for UC and Crohn’s. With all of the research and new technologies, it’s quite possible that a cure will be found soon. As you mentioned in one of your blogs, we must all continue to have hope.
Please keep up your good work.


fernpixel said...

@Jeffrey Aww Thank you so much! You're so kind :)

LOL! I'm happy you enjoyed my little Lifeway commercial. I try to be a ham when I can. I hope you and your son like the farmer's cheese. There's lots you can do with it! I've made many cheesecakes in my day! Yay!

I have tons of hope and optimism to share! I'll keep going! You and your family should too :)

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