41 days. 41 days I have spent in the hospital due to colitis, and that does NOT include the 6 ER visits I’ve had. 41 days in a
stupid bed, with sheets that made me sweat, mostly un-showered, hooked to machines and tubes and in dumb gowns (and pants which I later stole).
Before 2006 I was A-OK, healthy as can be, awesome. 2006 was when I got my MS diagnosis but that really doesn’t bother me much.
Those 41 days were since my diagnosis of UC since June of 2009. That is so insane to me.
Ok so get to the point right? The point is if in one year I spent 41 days in the hospital just after diagnosis, what would my future have held after that? If I had chosen NOT to do surgery, where would I have been? I can’t even imagine.
I also just realized that I remember what it was like to have UC but it is fading. I remember pain, but not how bad it was. I remember blood, but not how frequent it was. I remember fevers, but not how much they sucked. What I do remember, is being sick. Just sick, all over the place sick in general. Its not that I remember anything specifically but I remember eating soup for weeks, chills, fevers, weight gain, my hair falling out, major fatigue…ect.
I remember that was my life, and that was “normal” last year. God, I cannot believe that I really thought I wanted to live my life like that forever. The only thing that I still have from that, is being fat, and that can go away.
If you’re questioning these surgeries, honestly, no its not ideal. But this about what you’ve made “normal” in your life. Things that you just deal with because its how you make it through the day. I’m telling you, that stuff isn’t “normal” Its not. It took me a long time to realize that the stuff I put up with from UC was so far from normal. And there may be complications along the way, but now, I’m closer to normal that I ever was last year….and I have a bag of poop that hangs off of me. Hows that for irony.
side note: apparently googling “normal” gets you a bunch of pictures of female anatomy. Google…if you do nothing but humor me, I appreciate that.
Hey Jackie…it’s Linda from Georgia. I commented on your “I changed my mind” entry last month. I’m the one with UC, had cancer, interstitial lung disease, etc… I just wanted to let you know that even though we’ve never met, I’m really, really proud of you for sharing your personal experiences with everyone. You hang in there…there is a new “normal” coming soon and I hope it’s everything you want! Btw-I’m heading for my jpouch surgery (step 1) on Monday. I went to the hospital yesterday for all my pretesting and to meet with the WOC nurses to get my ostomy site marked. Sit down, stand up, lay down…that was fun. 🙂 I’m pretty nervous about the bag but reading your blog has helped me bunches. I’m going to find the “funny” in it all…just like you!
Only 41 days? Rookie. 🙂
Dealing with awesome Crohns for the past two and a half decades I come to except that “normal” is what you make of it.
I try to cherish everyday without pain or a large amount of freelance public bathroom inspections. But when I am going through tough times I just have to laugh and roll with the punches. I’ve lost a lot in the tough times, fiancé, house, mind, and even my car keys! But each time I rebound, which I know you will too.
As strange as it must sound you have been given a gift. A gift that’s taught you how to be strong and persevere. I know it’s a hard lesson but I hope you”ll be able to appreciate as much as I do in the future.
BTW, Linda best of luck with your surgeries and I hope you enjoyed the new exercise crazy that’s sweeping the nation “The WOC Cardio.”
BTW#2, thanks for making me google the word “normal.” 🙂
1. LOL @ that picture. I can’t believe that’s what you get when you Google normal.
2. 41 days! Ugh I cannot imagine being in the hospital for that long. Brad’s dad was sick a lot when Brad was younger and I think there was a time where he spent 3 months in the hospital with a friggin’ roommate. I would go nuts.
Anyway, that really sucks, and I think you made the right choice. It probably would have just gotten worse and worse. Who wants to live like that? I’m glad that stuff is starting to fade. It’s interesting how that happens.
3. Are you on any drugs for the MS? I haven’t taken my Copaxone since my surgery. I should start doing that again…
No MS drugs as of now. Not since early 2007. Was thinkin about it but the neuro suggested waiting till all of this other stuff was done.
Im happy to oblige. (what a strange word)
3 straight months… that’s what I meant to say
Okay, it’s done! I’m part of the ostomy craze (Thanks Ron, for the supportive comments…gotta love those aerobics). Surgery was on Monday and I got my walking papers Saturday morning. Jackie, thank you so much for all your blogging. I talked about you to my nurses, techs and WOC nurses. I told them how funny you are and how you have a really great perspective on the whole thing. I’m still recuping but feel great. I changed my ostomy for the first time by myself in the hospital. It wasn’t pretty (too much paste) but it stuck on like a champ with no leaks! Thanks again for all your wonderful insight! Take Care!
Welcome to the band wagon. It really is the new coolest thing, right up there with slap bracelets and the hula hoop. I hope all of your surgery went well. Just remember it might suck for a little. Honestly, but it gets better. No really. I promise.
My only word of advice, thus far in my life with this weather, I’m finding that I have to press the wafer down on my skin longer to get it to stick with this hot weather..weird..I Know but ’tis true.
Now all you gotta do is go buy one of these
and you’re good to go. Keep me posted lady…and lots of luck…and rest…and soft breakfast foods…and pain killers…and poop…there will be poop.
PS. I’m a regular ‘ole celebrity at the Cleveland Clinic…(not really) but a lot of their nurses and patients read my blog (at least thats what they tell me). Its good to know that someone is reading this crap.
Hey Jackie! Yes…pain killers are good and poop is plentiful. And I loved the link you sent too. I must get that shirt! Too funny! Okay, question…so how much bread and pasta can one person eat? I’m freaking out about trying to add new foods b/c I don’t want to have a blockage. Did you have the same hesitation? Btw I had my first blow out today…not fun…very messy. I’ve been trying different bags and the Coloplast convex one didn’t stick very well. I think my stoma is in a weird place and every time I bend, the sides (3 o’clock and 9 o’clock positions) open. I’m using lots of paste so they stick but it makes clean up a pain. The one I tried was too rigid I think. Unfortunately, my stoma is flush, almost retracted, which makes measuring and application a little difficult. Man, I wish my stoma stuck out. The DVD Hollister sent made putting on the bag look so easy with a poked out stoma. Oh, well. 🙂 I hope all is well with you and I’m sorry to hear about Stella’s projectile vomiting…hopefully you gave her a good talking to. Hee! hee! Take Care.
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