Sunday, September 20, 2009

Disease Envy** (read disclaimer first)

I have disease envy. I have ulcerative colitis. I was diagnosed when I was 21 years old and have lived most of the time in remission. I take my meds and get a colonoscopy every 2 years and try not to get pregnant. But right now I am having the worst flare-up I have ever had and I am angry and ashamed.

Nobody wants to talk about your colon, it's gross. I don't want to talk about it because it's embarrassing. It's not a glamorous disease. We don't get to wear pink ribbons, we don't have 3 day walks with our friends, we don't get to stay in tents and hear moving speeches. You want to see what our ribbon looks like?

Brown and Red?!! The color of shit and blood? Excuse the pun, but who was the asshole that designed this ribbon?! Thanks a lot! I will be sure to order a t-shirt right away! You fucking moron!!

Here's a list of famous people with Chron's or Colitis. A couple of Presidents and some people I have never heard of, I'd rather have Christina Applegate.

July 30th I had endometrial ablation done and was prescribed some narcotics for the pain. Well if you have ever been on narcotics you know they stop up your bowels a little bit. So already I wasn't feeling too hot. Then I get this strange lump in my armpit which completely freaked me out!! Turns out to be an infected armpit hair follicle and my husband prescribes me an antibiotic to take. Well whenever anyone takes an antibiotic they put themselves at risk for c diff. If you have a fragile colon to begin with it's a huge risk. I immediately felt the effects.

I upped my meds and kept quiet, and it got worse. I went to San Diego for a week's vacation and to attend my brother's wedding. I let my husband know I was having some problems but left out most of the gory details. I started taking lots of Immodium and put on a happy face. As soon as we got home I told Erik the truth. He was not happy with me at all!! He explained to me that taking Immodium for that extended amount of time when you have ulcerative colitis can lead to toxic megacolon. Guess what the cure for toxic megacolon is? Removing your colon!

I immediately started to cry. Which means Erik stopped being mad at me because I never cry. I am so stupid, and so lucky I didn't injure myself to that extent. I made an appointment with my gastroenterologist who also read me the riot act. He changed my prescription and tested me again for c diff, so far it's negative but I am still awaiting the results from the second test. Erik and I just changed our insurance to a $2500. deductible, so the new medicine cost us $486 for a month's supply!!

Then I still didn't get better. So I finally agreed to go on a steroid called prednisone. Hit that link, read the side effects and you can see why I resisted. I get to take this for a month and then go back and see my doctor. But I am still hurting bad ,and it's a beautiful weekend and I should be taking my kids to the park, swimming, or to the gym to play with their friends. But I am honestly scared to leave the house.

I know I will get better soon, I can feel the steroid shutting down my colon like an INS raid on a factory in the Central Valley. I just want to feel better sooner than soon if you know what I mean, this has gone on long enough.

So to my local readers and friends: if you don't see me at the gym for awhile it's because I don't have the energy to work-out and the prednisone makes my legs hurt, if you see me on the computer even MORE than usual it's because I am not ready to leave the house for too long, and please don't hug me or look all sad when you see me because that will annoy the hell out of me. I will be fine, I just wish I could be more glamorous.

** 1) If you have lost family members to cancer do not read this.

2) If you get grossed out easily don't read this.

3) If you are going to feel sorry for me, don't read this.

4) If you are going to give me advice, don't read this.

I have lost family to cancer too, and it's not pretty, but this is about me and my feelings and venting. It's not about minimizing other's suffering. I have ulcerative colitis and it's gross, so don't read this while eating. My life is perfect in all other ways so don't feel sorry for me. Please, it bugs me because there are others on this planet who are way worse off. I live with a doctor, he's my husband, not my doctor, but I can still get advice if I need it. If you are going to forge ahead, thank you for listening.


Aunt of 14 said...

I live with my mother who has Crohn's/ulcerative colitis. I'd be interested in hearing about things from your perspective. She has moments where she is terrified of leaving the house, which I understand. Her mouth just flares up so bad all a result of her disease. The only thing is... she refuses to take meds for it! So, I am not here to pity you. I am not here to hug you. I am not here to give you any advice. I'm here to read about you and since this is a part of you, I'm very interested in hearing how it goes for you. I gasped so loudly at the ribbon. Brown and red?! That is so wrong! So very wrong I can't help but giggle a little at it. Whoever came up with that is an idiot, indeed.

Charlotte said...

Wow I can't believe your mom doesn't take meds! Does she try natural methods instead? That is ribbon is wrong, just wrong.

Helen McGinn said...

Can I punch your shoulder in that way we Brits do and then ask about the weather? ;O) You know, I'm really glad you posted this. I had no idea exactly what it was and I know someone who suffers. I feel like an a-hole for not realising but she doesn't tend to talk about it.

I'm glad your back. :O) x

brainella said...

You couldn't make a nice suggestion that a better looking ribbon might be nice? :-) It is rather hideous.

Being ill blows. Vent away!

bearer of three said...

yes the ribbon does suck. I hope you do feel better though (this is not me feeling sorry for you, just wishing you well) your layout..I havent been on in a while. And dont be ashamed of talking about your COLON, you have a disease and should be able to speak freely about it..take care

Kathy B! said...

I'd never heard of this and it just plain sucks. I'm sorry you have to deal with this. And I hope your flare up flares DOWN stat.

Charlotte said...

Ok shoulder punching would be perfect! I can totally handle that.

Thank you all for the non-sappy well wishes, I do appreciate it.

Aunt of 14 said...

No, my mom doesn't do anything natural or homeopathic for her disease. She merely tolerates it and waits for it to pass. Which can make for a miserable woman, thats for sure. When her mouth is all swollen and aflame, her lower back is hurting, I know exactly what is coming and I try to make sure there are soothing things on hand for her mouth. Jello. Pudding. She especially likes Fudgiciles. I think she is too embarrassed to talk about it with every new doctor she sees, with every new state she moves to that she just gave up and decided to live with it as it is. I am curious-- have you noticed whether water has made any difference? I mean, if we go on vacation and she drinks water there for a few days, a bout of UC will show up. Because of the different water?

LinLori said...

Instead of hugs, what about high fives? I am sorry that you have to deal with it. Not in a pity or feel bad sort of way, just more a "shit, that sucks" kind of way. If that makes sense. I have a friend who has crohn's and I have no clue how she handles it as well as she does. I admire her for it.

Also - the ribbon? Wow. Color choice. O.O

Sassy Chica said...

Laughed my ass off about your interpretation of the ribbon! I enjoy your sense of humor:)

Sassy Chica

Unknown Mami said...

Your sense of humor is awesome.

JennyMac said...

I don't know much about this..but I had to laugh over your commentary on that ribbon. I hope you are joking about the colors!

Nikki said...

My husband has diverticulitis which is an issue in the colon as well. He's been taking slippery elm and another vitamin to help, and I've been doing some LI, large intestine points on him, it seems to be helping but as you know I'm sure, once you have something like that, it follows you. I'll have to tell him about that group with the tshirts! lol:) thanks for writing on this!

Walking Queen said...

What causes it? Sorry you're so miserable

Juliet Grossman said...

Big hugs to you as you deal with your un-sexy disease. You are SO funny! I never thought of it that way but yeah, I'd rather have something with cool fun celebs and pretty ribbons too. (The brown & red ribbon is HILARIOUS. Ick.) I didn't know JFK and Ike both had Crohn's. Interesting. My neighbor's 7th grader just got diagnosed and I am watching her firsthand dealing with him and yep, it sucks. So sorry.

Thanks for stopping by my blog on my Sits Day last week:-)

Charlotte said...

Aunt of 14, I can't believe your mom is not on any meds. That is tough! I have not personally had experience with the change in drinking water effecting my tummy but everyone is different and some people are more sensitive than others.

Thanks for the shoulder punches and high fives everyone! And yes it's true that damn ribbon exists, I wish I wasn't making it up.

Walking Queen I believe it's mostly bad genes that cause it but flare-ups can be caused by change in diet, anti-biotics or stress. I believe stress and the anti-biotics are what did me in.

I just returned from the hospital ysterday so I have more on this lovely topic.

patti said...

I am soooo behind Char. I'd kick your ass if it wasn't the issue in the first place.

"Toxic Super Colon" sounds like the worst Saturday morning cartoon villian ever.I hope the Fiber Avenger triumphs!

Charlotte said...

Now that would be a fucked up super villian! I am sooo much better and I promised everyone I won't ever let my illness drag on like that again.