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




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fart, fertility

3 Responses to I’m Feeling Craptastic, Thank You Very Much

  1. Randi
    Randi May 26, 2012 at 8:07 am #

    Hey Sara. I am a 20 year old from MN as well! What town are you from? Your story has tons of questions that I am also interested in. Here’s my email, rmhowry@aol.com

  2. Polly
    Polly July 10, 2012 at 12:23 pm #

    Sara!

    Hi! I’m in Uptown, Minneapolis. Where are you? Where do you have a GI Doc? My GI is at the Gastro Center in Eagan…
    I also <3 Charmin Ultra Soft. :)

    Sounds like you have been through a lot!
    I also have been scarred for life from blood draws (goes back to a childhood trauma when I was 4...)!!! I do not let anyone take blood from me, ever. I am the worst patient, lol. I totally hyperventilate if someone approaches me with a needle... anyway...

    I am on an anti-inflammatory diet (gluten free). I have pretty much just been eating cooked vegetables, sweet potatoes, eggs, almond butter, and fish for months now. I am not eating anything with sugar or natural sugar (no fruit, except bananas). I stay away from anything with corn or wheat. I am not drinking alcohol or anything carbonated. I am only eating a liiiiiittle bit of dairy every now and then, and only organic. Almost everything I have been eating is organic.
    I recently bought a juicer and started juicing cabbage. It's really not that bad at all... cabbage has sulfuric acid, which is supposed to help heal ulcers, so bottoms up!!! :) And... you might want to ditch the Monster drinks... ;)

    As far as your questions go... I do know that people with GI issues lose the ability to absorb nutrients and potassium properly in their intestines, which makes us more dehydrated... for that, I would recommend drinking coconut water. It's helped me out a bunch!!!
    From the description of your symptoms, to me it sounds like you are dealing with leaky gut...
    http://en.wikipedia.org/wiki/Leaky_gut_syndrome
    http://www.drweil.com/drw/u/QAA361058/what-is-leaky-gut.html

    As far as passing gas… oh boy, I try not to do it unless I’m in the bathroom, because for me… that’s when I end up having an accident — crapping my pants!!!

    As far as having children, I have heard that during colon removal surgeries, it has happened where some damage was done to some of the reproductive organs, and then they weren’t able to have children. But I think that’s the exception, not the norm. I have read that it’s vary likely for women with UC who are pregnant to have a flare up during their pregnancy.

    Oh my gosh, yes! UC has changed me and my personality! I was really never that stressed out or had much anxiety, but now, jeez!!! I am a totally different person. I have to take GABA twice daily to help me deal with the anxiety. It has changed my life too, of course… now I am at home all the time when my friends are out and about. And, most recently, I decided to quit my job. I have a really stressful job… and my husband and I realized that I am unable to work full time right now. I’ve been in a flare since the end of March and it’s just not going away. I took a part-time job and I’ll be starting soon. I started having symptoms and got diagnosed about 3 months after we got married, so yeah… our first year of marriage is turning out to be… quite the challenge. Of course the UC was nothing either of us could ever have imagined/expected. My other friends say that it will bring us closer, so we shall see. We both have been learning through this process and he is getting better at taking care of me.

    Hang in there, Sara, sending you lots of hugs!
    Polly

  3. AnnaR June 3, 2013 at 8:32 pm #

    This post is a little late, but probably still relevant given UC never ‘really’ goes away. Unless of course you have your colon removed which is not part of my plans…

    I came down with UC symptoms in 2006 when I was 7 months pregnant with my 2nd child. I was diagnosed with UC a few weeks after giving birth. Between 2007 and 2009 I had 4 significant flareups that resulted in hospital stays/flagyl drip/iron infusion/Prednisone fat face. All of these flareups (including the initial onset of symptoms in 2006) coincided with a change of season sinus infection and antibiotic prescriptions for Amoxil, Klacid, Cefaclor and Keflex. After picking up the pattern and doing a little Googling about these antibiotics I discovered a link between them and UC. Anyhow, since Feb 2009 I have not had a single antibiotic, do not take any medication and oddly enough, have not had a single major flare of UC. I still experience mild symptoms from time to time that I treat myself with a combination of Salofalk and L-Glutamine but nothing that affects my lifestyle or has me on constant look out for a toilet.

    Not meaning to suggest that antibiotics are the cause of UC for everyone but I believe they were for me. I used to get middle ear infections and strep throat yearly and was always on antibiotics. Sometimes I was irresponsible and wouldn’t finish the full course as recommended by the Doctor so who knows what bacterial residue was left behind to rot in my intestine.

    Easier for women than men
    This disease is probably easier in some ways for women because we cope with pain and discomfort better than men. Yes, women are not allowed to fart and having diarrhea isn’t the most attractive thing but with UC you just have to sometimes even though the stench can be enough to kill small animals. Having this issue has made me less uptight about bodily functions.

    Infertility
    Haven’t heard that UC can damage reproductive organs but I made a decision not to have any more kids after my diagnosis because I was worried about how the drugs and compromised immunity might effect an unborn fetus.

    Colon removal
    I do not want my colon removed ever. I had an image taken of my colon in Nov of 2008 and it was full pancolitis. The GI couldn’t do a biopsy because the lining of the colon was so inflamed and fine they would have put a hole in it. Very scary indeed. The last time I saw my GI in 2009 she said if I had to see her again it would be for a colostomy bag. I bid her farewell and told her that the only bag I would be carrying is a hand bag.

    Kids
    If I’m having mild symptoms, I might produce some foul odours which my kids make fun of me for. I have talked to them about it – they were scared when I had to be hospitalized in the past.

    Diet
    I can generally eat/drink what I want without triggering UC symptoms. Garlic and excessive booze are the only known culprits that I try to avoid where possible.

    Has UC changed me
    I’m more careful about things and am I’m really into self study as this has been the key to figuring out what works for me. Doctors can only prescribe a one size fits all approach to treat symptoms, they can’t cure you. I don’t believe that things happen for no reason. Maybe sometimes it’s just bad luck but it could happen because of something we the individual did/are doing ourselves. If we can identify the behavior/food/toxin etc.. that is causing the problem we stand a chance of actually living well without having to rely on drugs that could be doing even more damage to us. Some people may need those drugs which I appreciate, but I do not which I am grateful for.

    Drugs I’ve been on in the past to treat UC
    Prednisone, Sulphasalazine, Salofalk, Imuran, Endone, Panadeine Forte, Flagyl

    I hope this post finds you well and in remission of this dreadful disease and hopeful for the future to come.

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