I’m Feeling Craptastic, Thank You Very Much

Introduction:

I am a 20 year old Minnesotan dork with a passion to write. When I’m not flaring up, I enjoy long walks, bike rides, and Monster energy drinks (though I’m not sure other people enjoy being around me when I’m pumped up on caffine). During flares, I enjoy posh toilet seats, Charmain Ultra Soft, A+D ointment for my bum and a TV to pass the time.

Current UC Symptoms:

I’m in remission, so I’m fairly healthy. But I’ve been dealing with a lot of stress, and I can tell my health is starting to curve down Crap Lane. I woke with runs for the first time in a couple months last night, and I’ve been trying to ignore my guts screams in pain. Tylenol is my best friend, but I worry about liver damage, and take it only when the pain gets *really* bad. I also deal with sore, inflammed joints, mostly my hips, left shoulder and right pinky. It’s a pain in the ass, and I’d know about pains in the ass. Still. As much as I gripe, I don’t go more than four or five times a day, and while I may have mucous I have no blood. Yay!!

My Story:

I’ve been dealing with tummy issues as long as I can remember, but I wasn’t diagnosed until September 2011, and the first time I actually bled while going number two was July 2010, a moth after I graduated. When I was diagnosed, I was very malnourished, dehydrated and unable to walk without support. I lost thirty lbs in a month. I went on medical leave for six weeks, and then worked only part time for a month or two.

I am pretty danged healthy. My gut is in pain right now, as it is most of the time, but I don’t show it unless it really hurts. I always carry some tylenol and Vicodin on me, and a cell to call my doctor. Or an ambulance. (You can never be too careful!) I don’t keep a food journal, though I probably should. I’d like to say it’s because I know my body well enough, but in actuality, I’m just too lazy. I stay away from sugar, greasy foods, and spicy hot foods. I’ve learned I can’t drink energy drinks without bleeding really bad, which is such a bummer cause it’s fun to feel like Superman when I usually feel tired. I also take prenatal vitamins, iron, folic acid, and vitamin D, just to help my body get the extra boost I need. I drink a ton of tea with honey. Delicious. You know what else is delicious and lactose free? Almond milk. Ahhh. That’s living the life. Buy a ton on sale! Way better than rice or soy milk.

*Questions*

With society’s pressure on women to not so much as let out the tinest little fart, and it being ok for guys to have burping contests and whatnot, do you think it’s harder on females to have this disease than men? Why or why not?

What do you know about fertility in women with severe UC? Is there a possibility to become infertile through surgery, inflammed guts casing damage to tube and eggs, etc?

Have any of you *wanted* to have your colon removed? I have been considering it, even though I’m in fairly good shape, because my UC is very severe, and last time I was in the hospital for a month before I was stable enough to return home. I worry my next flare will be worse than the previous. What has led you to consider it, and if you did opt to have your colon removed, how do you feel about the choice you made?

The doctors scared the crap out me my last flare and said I was at high risk to develop toxic megacolon. I have a basic understanding of what it is, but I don’t have any idea of what symptoms are, what it’s like, etc. Can someone share either their experience and/or knowledge?

So… I’d like to have children someday. How do you parents who have UC explain your disease to your children? Are there any parents with Ulcerative Colitis out there who’s children have UC as well? I’d like to hear your stories.

Diets- what’s worked for you, and what do you stay away from?

How has UC changed or affected your personality, your way of life, your hopes and dreams, your relationships, etc? Has it been for better or worse, or has it not changed you at all?

Can scar tissue in the colon actually affect how well you absorb water and whether or not you’re doomed for runs, even if you’re not flaring?

Where I’d Like to be in 1 year:

I’d like to be in the middle of writing a fictional book about a teenager living with UC. I’d also like to be working a nice, quiet office job somewhere and get out of fast food!

Oh yeah. And I’d be living on a little desert island somewhere sipping down Pina Coladas living a UC-free life, obviously.

Colitis Medications:

I’ve been on Remicade, Humira, Asacol, Prednisone and a host of vitamins just to get my levels back up to normal. I am currently on Azothioprine, because taking Humira was too emotionally taxing on me (after having some bad expriences with blood draws, I’ve been scarred for life). Oh, and for the pain, Vicodin, oxycodone (made me throw up so much my nurse made me take a pregnancy test), dilaudid, morphine and… I think there’s more. But I can’t really remember. Drugs do that to you.

written by Sara

submitted in the Colitis Venting Area