In High School and in Pain



Introduction:

I am in high school. I wrestle as well as do other sports and activities in and out of school. My life has slowed down tremendously since my diagnosis.

Current UC Symptoms:

cramping
joint pain
multiple bowel movements
mouth sores (temporary)

My Story:

Ulcerative colitis is the first major thing that has happened to me in my life.  I mean I’m still in high school trying to go through and make my mark but it kind of sucks when your hit with a diagnosis like this.  I mean I turned 18 just in April. I was going to go to states for wrestling even though I did have these symptoms I dismissed them because I generally don’t care to much about health.  While I was on vacation in New York I had such intense pain that I had to be admitted into the hospital and then I was just stuck in the hospital while states for wrestling was going on i was supposed to go and basically wreck everyone when i was hospitalized and not allowed to be able to go. Although it is pretty cool that i basically have a ticket to stay home from school anytime i want it doesn’t come cheap.

prednisone short fuse

While it is extremely hard to bounce back

after not being able to lift or play sports

for a couple months the thing that has

affected me the most is the prendisone.

My family hates it because I already

have a short fuse and dont like

to be messed with in any way.

This medicine cut this fuse in half at least. I get angry and have blacked out on certain occasions when people just keep arguing. It is very easy to get caught up in anything and I cant wait to be off of it.

The thing that bothers me about hospitals however is the doctors always having to check out my butt. It creeps me out that they are so calm about it. And I had a chronic fear of needles before my first hospital stay which was a week long and it was caused by barbecue food which I happened to have on the second day of February break so I was hospitalized for the entire vacation. Anyway they stuck me with everything known to man after the first couple days I got over it but I mean I was shot more than 8 times the first day for everything from tuberculosis to blood tests.

From all this the thing that concerns me the most in simply the what if’s. A big question i have is that some people say you cant drink, is that true because that sucks by the way. And what happens if i have a flare during school or later on in the workplace it seems like a horrible thing that could happen. So thats all i have nothing else.

Where I’d Like to be in 1 Year:

I would like to still be in school and have no symptoms anymore.
Colitis Medications:
I have been on 6mp and it works alright i still have lots of cramps
prendisone however is the best for getting rid of symptoms however it has the worst side effects

written by Rob

submitted in the Colitis Venting Area

8 Responses to In High School and in Pain

  1. Phyllis Bovaird May 1, 2012 at 7:53 am #

    Rob, Have you tried Lialda? I took it instead of Prednisone and it got me into remission. Diet is very important. My gastro doctor said no red meat, no alsohol, no dairy. Go for chicken, fish, maybe a drink every now and then. But, I found this book “How to live with a bad gut” and I find following a strick diet-no fried foods, raw veggies, help me. I am much older than you and I feel for you having this at such a young age. I get nothing for touting this book, but I know it has helped me keep my colon and stay in remission since 2008. Your diet is very limited and I must tell you that stress plays a large role in this disease. Best wishes for a better life and remission. Phyllis

  2. chris g May 1, 2012 at 6:20 pm #

    Lialda is good . steroid enemas are good . get off preds soon as u can . lots of physical side effects after long use . blury vision , kidney damage , etc. diet and stress is everything !! deadly foods are dairy , red meat , very spicy foods , vegetables with high gas content and thick skin like cauliflower, broccoli, cabbage . eat artichokes before meal to induce bile in your system to break down foods and be stress free as possible . lots of protein shakes with fruit , 6 small meals a day , DEEP FRIED ANYTHING WILL KILL YOU !! grill chicken, baked fish , pureed beans, stay away from condiments like ketchup . lots of excerise . soy and gluten free foods as much as u can . u r brave for writing this so u r half way there . God Bless ! :) chris g.

  3. Hoosier 2014 May 1, 2012 at 7:56 pm #

    Hey I feel your pain man. It was not long ago that I was in high school and was going through some pretty rough times with UC. I had to stop sports as well until I got my health more stable but was never able to get back to 100% like before. As far as the drinking goes, I experimented plenty with alcohol prior to and after my diagnosis. I am a junior at Indiana University now and still drink on occassion (probably once a month) but definitely not nearly as much. Honestly, I find it not worth it anymore because I work so damn hard to build my health up that it’s not worth the side effects of drinking that I suffer from over the next couple days. I thought maybe if I just ignore UC and pretend I don’t have it that it might magically go away.. it doesn’t. Good luck with everything though and try to stay positive. That is the only thing that keeps me going.

    Jeff

  4. JamieIsLame
    JamieIsLame May 1, 2012 at 8:49 pm #

    you said you’re newly diagnosed right?
    6mp is not going to be doing much for you right now, it generally takes 6 months to kick in and that’s why you’re on prednisone.

    I was also told i’d have to watch my diet.. but really when i’m not flaring I can eat and drink whatever I like!
    Currently I’m in remission for the last 4 weeks thanks to an amazing drug called Remicade and since starting that i’ve been eating everything I couldn’t eat before like Corn, Beef, Coke, Tumeric.. and my stomach doesn’t feel horrible after a night out with my friends.

    I don’t know if it’ll be the same for you, but it just shows that not all colitis cases are the same. my official diagnosis is Severe Pancolitis, but some people with mild cases of the disease can’t touch “flare foods” when they’re in remission at all.
    you’ve just got to eat as you did before and find out what upsets you and what doesn’t.

    As for Pred, I totally know that feel.
    prednisone has become my worst enemy, and thank GOD I’m nearly finished my 2nd/3rd course (started at 40, got to 15mg and had to go back up to 40, so i’ve been on it for nearly 3 months now)
    the side effects start to lessen when you hit about 25mg.
    I have a short fuse too, and when I was on 40mg everyone around me was walking on eggshells.
    It’s just important your family understand that it’s stressful, and not only that but you’re being pumped full of stress hormones, which just makes it 1000% worse.

    hope you start feeling better soon, this disease sucks, but you’ll get through it.
    – Jamie

  5. Justin May 1, 2012 at 11:32 pm #

    Hey,

    I randomly found your blog post. I know that living with colitis is no fun. Also, I know how colitis can negatively impact your ability to participate in sports. I was diagnosed with colitis my sophomore year in college. I was a member of the gymnastics team at Stanford University at the time, and was on scholarship. Sports had been a huge part of my life. After my colitis diagnosis, I wasn’t able to compete again until my senior year, and I was only a shell of my former self (partially due to a bum shoulder as well). I have been on every drug to treat colitis. None were effective, and many of them gave me nasty side effects. I had two surgeries a little over a year ago to remove my colon and hook up my J-pouch. Now I’m feeling good and living life. I can eat whatever I like, drink alcohol, and I’m not in a constant state of fear that I’ll crap my pants. I just poop more than the average person. The disease is so unpredictable and treats everyone differently. Instead of worrying what will happen, just listen to your docs and try your best to keep living. Good luck, bro.

  6. Trish May 2, 2012 at 1:09 am #

    Rob, so sorry to hear you’ve been diagnosed so young. I was 17 when I developed UC and it was a bit of nightmare, as I tried to hide it – sounds like yours is much more severe and you can’t! Please try to find a way to learn meditation. It might seem like an impossible task right now, but it will teach you to switch your brain off for a few minutes at a time, which is like turning down the heat on a pressure cooker – it stops you from blowing your lid. And when you can do sports again, try to focus more on participating and less on competing – gentle exercise like walking and swimming are far better for UC sufferers. Yoga is the best of all, if you can face it.
    Good luck with getting off the prednisone – I have no experience of this long-term, but it’s a nasty drug, so I would follow the advice of others on here and see if you can take something else instead.
    Re alcohol, none is best, but many people on the SCD have the occasional gin or vodka (ie: pure white alcohol) with nothing in it. Beer is lethal, and red wine isn’t good either – too many additives. Remember that alcohol consumption is only a product of your culture – there are millions of people worldwide who never touch alcohol and are none the worse for it. If you’re under pressure to drink, have water with lemon in a glass, or tonic, or red grape juice – all of these look like booze. Apple juice can be mistaken for beer. If others who are drinking think that you’re drinking, they tend to leave you alone. Or stand up to it and be the designated driver. You may find your ‘friends’ pretty damn tedious when you’re sober and they’re not, and it’s you who’s right!
    As to diet, try to stick to well-cooked vegetables (steamed for preference), light meats, fruit and fish. The SCD is brilliant, if you can bring yourself to follow it. Don’t eat fast food – it’s like Draino for the gut. Things have changed in your life and food is now your cure, not a source of entertainment, pleasure or gluttony – if you can change your attitude to it, much of your wellbeing is now in your own hands.
    Good luck, and feel free to vent on here. :) Trish (age 49, UC for 32 years, no meds).

  7. Meghan May 2, 2012 at 1:22 am #

    Hey Rob,
    I know it sucks. I’m 18 and a senior in high school. I started having symptoms at the end of my freshman year. I was diagnosed at the beginning of summer and spent pretty much my whole summer at home with my prednisone and pentasa while choking down really gross high-calorie protein shakes. I was under control and in remission until a few weeks ago, actually. My doctor isn’t sure if it’s a flare or a viral infection, but I’m getting over it now. Socially, it’s not really a big deal. My friends know what’s going on and don’t judge me. At first, it was hard though. I also REALLY hate needles, and I still cry every time I have to get bloodwork. As for the drinking, I think it depends on the individual. I still party when I want to. Sometimes it bothers me and gives me cramps and stuff, but it usually doesn’t. I was also really athletic. I still love to run and play basketball, but it’s just a little harder. It will probably take more time to build up your stamina and endurance, but you’ll still be able to do what you love. Over time, you’ll learn your limits like drinking, what you can and can not eat, and how far you can push your body. I know diagnosis makes you feel really down on yourself, but there are still SO MANY good things in your life that you probably don’t realize. You probably don’t believe it, but there are a lot worse things that could happen than this disease. You’re not alone! good luck 8)

  8. Jessica from Ohio
    Jessica June 7, 2012 at 1:09 pm #

    Hey Rob,

    I was just recently diagnosed as of april 2012. I just started the prednisone as well ( within the last 2 weeks). Since starting it I have noticed severe mood swings but like you said, it is the only thing that keeps me from having 2-3 flares a week, like I was without it. Do any of us want to be on it because of the side effects? NO, everyone is different and responds differently to the medication that are given to treat UC. Dont give up…… I dont want to give into the drug companys, but I am a college student going for respiratory therapy and at this point I feel I have to rob peter to pay paul to keep the condition under more control so i dont have to give up my dreams of graduating. It is a tough thing to grasp at such a young age. Im only 28 and feel I should be in nothing but good health. I know that for me stress plays a HUGE role in my flares and so does my diet. There are alot of things to evaluate to help with the symptoms of UC.

    AS FAR AS THE DRINKING CONCERN YOU HAVE…… As long as I am not flaring, I can drink beer and not have side effects from it. (Although, even when Im not flaring I feel nauseous sometimes so alcohol doesnt really sound that great) Shots on the other hand…. ummmm NOT SO MUCH. Beer is good right? =)

    Diet is something else to keep in mind. I am still in trial and error of what foods I just cant handle anymore. It sucks giving up something you like to eat…. but I guess I rather give them up instead of seeing tons of blood in the toliet and feeling like my butt hole might fall off.

    Your concern about flaring at work and school…… I know it is a hard thing for people to grasp what is going on in the body of someone who has UC since we appear normal on the outside. I talked to my instructors about what is going on with me, I know I dont have to share that information with anyone, but sometimes you just need other people to understand what all UC involves and the medications side effects etc.
    I work at a bar , so I make my money off of tips. So when im in a crappy mood there goes my income!! I have talked to my customers and gave them just a slight inside of my life now that I have this aweful disease. People are more understanding than you think. But again, if you dont want to share your health info then dont, I just found it to be in my best interest that I do so they know why I am not as happy as I once was.

    Finding things that work take time. I know it is overwhelming but never lose hope that you will find what works for you so you can continue to do the things that you love. I refuse to let the disease win or even the medication side effects that help it either.

    Hsng in there! Have patience, research info to inform yourself about all the things UC brings with it other than all the bathroom trips. Pay attention to what your body says to you…. I wish you the best of luck!

Leave a Reply

No matter what, colitis flares don't last forever, don't forget it:)