Learning To Live With Something New – Ulcerative Colitis


This is going to be really long, but reading it will really help me out and I would appreciate it so much! Please answer any of my questions I have if you can and leave any advice.

My Story:

My name is Katelyn. I’m 17 years old, 18 next month. I was diagnosed with Ulcerative Colitis early January of this year. I’ve been so embarrassed by this decease that only family and really really close friends know the whole story of it.
I’ll start off on how this all started.

I was 15 when the first signs started. We had no idea of any of this until I was 17 by the way. At 15 I was having bloody stools in the toilet and was freaked out. I kept it to myself for a year! I was so scared/embarrassed. That was it though. That was the only first sign and my life was still normal and I had no complications. Not sure exactly how or when I told my mom about this but I was 16 when I finally went to my doctor to see what was up with the bleeding. The appointment lasted 1o minutes. She said I had a tear and to take that powder stuff to help soften the stool. It helped and I was all good for a few months until it all of a sudden came back. I refused to tell my mom about it coming back. There went another few months of bleeding. Still that was the only symptom. It wasn’t until November when I started getting weak. I was a counseling aid at my high school and I had to constantly walk up and down the stairs several times an hour. It came to a point where I couldn’t make it up without stopping for a break to catch my breath. A few weeks later I couldn’t walk up those stairs without getting dizzy and almost blacking out. This happened at home too with all the stairs in my house. In December my family got health insurance again and I was able to go see the doctor. By that time I was so cold all the time. I bundled myself up in layers and sweaters. Even went to bed with gloves on because my hands were so cold. I turned out to be severely anemic due to all the blood loss. symptom #2.

After Christmas it went all down hill from there! At school my stomach wouldn’t shut up with all the gurgling sounds. I knew I wasn’t hungry and I was embarrassed by all the weird looks. Didn’t help that I was new at the school either. Weird new girl who’s stomach is always making weird noises. The next big symptom was the small cramping pains that would come and go. Didn’t hurt, just uncomfortable. I slowly started losing my appetite as well. Parents took me to the ER and they just gave me fluids and pills for the cramping and sent me on my way. Didn’t help at all. They did give me a cat scan on my stomach. Saw some inflammation and told my parents to call a GI doctor. I was also given asacol. I refused to take it because I couldn’t swallow the pills. I would throw it up while trying to get it down so I would hide the pills my mom would give me if she left the room for a minute. We couldn’t get an appointment with a GI doctor. We left messages but they just were not calling back. After the ER I didn’t go to school because I was getting sicker and sicker each day. In one week I lost my entire appetite, lost 10 pounds, couldn’t stand up or walk or I passed out, I had to crawl to the bathroom, had to go to the bathroom 20-30 times a day and what came out was not normal. Pure thick blood basically. I wasn’t eating so it wasn’t food coming out, I also had the most horrible cramping pain on my lower left side. If I sat PERFECTLY still I would be okay. If I moved a centimeter I would have to go to the bathroom and be in so much pain, oh I also had a ton of cramping while going the bathroom. Not even kidding. I would be holding my stomach and crying. I slept downstairs on the floor..I couldn’t sleep well on the couch and the closer to the bathroom the better because I was woken up so much. Finally we got a call on a Friday from a GI doctor. I went in for an endoscopy..when I learned I had to be awake for it I refused to have it done. I wanted to be asleep. My parents were not happy with me. I didn’t care. Monday morning I went in for a colonoscopy and before I was awake the doctor made arrangements for me to go to Dornbecher right away. That’s a children’s hospital here in Oregon. I was 17. You have to be 18 to stay at the hospital I was at already. I have to admit..I felt so good with that anesthesia after I woke up..I was not in pain and was actually able to sleep well on the drive to the hospital. I was on treatment with steroids and lipids. I kept losing weight in the hospital. lowest was 104. I’m 5’7 so I looked like a tall stick..it was gross. I was in the hospital for 2 weeks. Missed 4 weeks of school. I went back to school with chubby cheeks. I hate steroids. so much.
Currently I’m doing fine.
Last semester of school was bad. I don’t know what happened but I had sharp shooting pain in my lower left side. Same spot as cramping from UC but I swore it wasn’t. Treated it as a kidney stone. It wasn’t one. Ultrasound proved there was nothing there. This pain lasted threw the rest of the school year. Viacodin was the only med to help me sleep with this. It was a level 10 pain the whole time. It would last at least 3 days, be gone for 2 days then it was back and that cycle started again. Here’s the thing..I know stress causes flare ups and pain..I absolutely HATED my new school. Could all that stress have caused so much pain? After the last day of school I never had the pain again..be honest..Could the pain be from the stress of going to school? I had no friends at that school. I ate alone at lunch all school year, I was scared I would have to run to the bathroom and symptoms were hard to adjust to while being at school and the people snickering around m e when my stomach made noise, which got worse with all my medications.

I stopped taking Asacol. Gave me horrible knee pain. I would wake up crying. It was a mixture of them feeling like they were on fire/being hit with a hammer. I’ve never actually felt those in real life but I imagined the feeling of that.

At this moment I have been doing fine. I AM SO BAD AT TAKING MY PILLS!!! I feel great and honestly don’t take them..sometimes for weeks at a time and then I’ll randomly take them. I hide them from my parents because they think I take them. Sometimes a day goes by and it’s like I don’t have colitis. Please scare me into making me take my pills. I know I need them but I don’t feel the need too. Plus I am so tired of yogurt and apple sauce. Only way I can take pills. I put the pill into a spoonful of either and swallow. Don’t feel the pill at all going down.

One more thing. Some friends accuse me of using my Ulcerative Colitis to get out of things they think I don’t want to do..that hurts a lot. It’s not my fault I have this. I get so tired that I just need a nap or to sleep all day. Some times I feel all achy or my stomach just feels upset. Too much excitement gets my body all worked up and hurts and I need to lay down. Too much stress makes me hurt and a lot of bathroom visits. Any advice on this topic?

Sorry this was so long. I also like to write and I needed to get this out.

Submitted by Katelyn M. in the Colitis Venting Area


Here are Some Related Ulcerative Colitis Stories written by other Teenagers:

Teenager With Ulcerative Colitis

15 Year Old Teenage Girl With Colitis

16 Year Olds Struggle With Colitis


8 thoughts on “Learning To Live With Something New – Ulcerative Colitis”

  1. Katelyn,

    There are some similarities between your story and mine. The last year of your life looks like it has been a brutal one. Hang in there.

    The worst of my UC showed its face when I was the same age as you are. The worst symptom I experienced was a blanket of cankers in my mouth and throat. This made it extremely difficult to eat and it resulted in a huge loss of weight, weakness(very similar to yours), and mostly being confined to a bed for the second half of my senior year in high school. I felt friendless during this brutal experience and it was very difficult to go to school, and I often wondered what others were thinking of me as I made multiple runs to the bathroom.

    I am now 26, and while I wish I could give you a success story, I can’t. But I can tell you to just keep trying and no matter what, your efforts will be worth the effort. As I said, my story has not been a successful one in that I have not found relief from UC, but it has been successful in many ways. I would not be the person I am now if it were not for the difficulties I have had with UC. My wife tells me often that though she wishes I did not suffer with UC, she is grateful that I have gone through what I have so that I could become who I am. I do not wish to boast or say that I am some great person, but I merely wish to mention that these experiences have helped to shape me. Your experience appears to be much more horrific than mine. I can only imagine the person you are becoming. So, although my message is not about medical advice, my message is one of hope–to just hang in there because there is someone who is going to be lucky and grateful to have someone like you who has been polished through adversity to become an incredible woman.

  2. I was also diagnosed in January, but I’ve only been experiencing symptoms since November of last year. I can tell you that stress can definitely cause pain without blood. I often get pains at work and have to steP away for a while, luckily my job understands because they were with me through my whole ordeal, telling me to come back when I feel ready. I had all the exact same symptoms as you and was 133 lbs at 5’11”, so I DEFINITELY know what you mean about feeling like a stick. And steroids also gave me chubby cheeks and because of the anxiety of being so grossly skinny, I put on a lot of weight and now wish I was 135 lbs. It gets better, I promise. I’ve made a lot of headway and have found a bright side to this shit situation. you meet new people, people who understand you, and you get a sense of who your real friends are and who can handle you at your worst. I lashed out a lot during my recovery, getting angry and crying about nothing. But today, I am working out everyday trying to get back to a size 8, I’m hanging out with the friends who visited me in te hospital and I am making the most of life. Taking pills is a pain in the ass, I know it, I’m on lialda, which is four horse pills a day, all at once. At first I was taking them one at a time, but I would start to gag around pill 3. So, now I take then all at once and have gotten used to them. So it just takes time. When I first started taking pills for acne, I threw them up all the time.

    So, I wish you luck! You’re 18, so you arestill young, which means you bounce back from hardships faster and better than those in their 40’s who happen upon this disease. I’m 21, so being told I might not be able to celebrate my 21st birthday really bummed me out, but I recovered and drank like a maniac and only had hangover side effects, lol. But it different for everyone, ao take it in stride.

  3. This is probably a very common sense question but have you tried Apriso over Asacol? I was diagnosed with UC this year, although I’m 40 so it’s a different situation. I did have a bad reaction to the Asacol and hear that the red coating on those pills can do that to some people. I was nauseous 24/7, tired and felt like hell on Asacol. With Apriso, and a probiotic supplement, no problems at all. Again, I’m sure you’re looking at other meds but just something to think of based on my experience.

    I also made changes to my diet but nothing in the way of doing the SCD Diet. Just taking out processed food and trying to eat gluten free. I’ve noticed a big difference in the past few months. And making time for exercise has helped with the stress factor. I’m sure this is all stuff you’ve probably discussed with your Dr. but I thought I’d put it out there. I think the diet aspect impacts everyone differently and I’m still learning what works and what doesn’t for me and I’m sure you’ll continue to have to do the same.

    Best of luck and I’m sure you’ll find a combo of meds/diet/exercise that will work for you.

  4. OrdinaryWorldWhereRU

    Your story is heart-wrenching and you are so strong. I hope you see how strong you are. Please talk honestly to your parents because they do love you and will be there for you. It is much better to be honest with the disease and yourself. My doctor had to warn me that if I don’t speak up and let my disease get out of control like I did before, they may not be able to rescue me again. That got my attention quickly. Regarding how tough it is to take the pills, with practice it gets better. Try to use lots of water and swallow some before you start. I have been there myself so I hope this information helps. Please don’t give up and you will find a doctor and a treatment that works for you. By speaking up and sharing what is going on with your parents and your doctors, something may be changed or addressed because they know what is going on.

  5. Thank you all for your feedback. It really means a lot! I start my senior year next month and I am really hoping that my UC can stay under control the whole school year. I will be going back to my old high school and I am so happy about that. I’m working really hard on remembering my pills but to be honest I feel so much better without them then when I am on them. I haven’t taken them all month and I feel great! maybe I don’t have UC? haha I wish that was true. And to the person who told me about Asacol, that’s what I was on while I was in the hospital and after I left the hospital. Worked for awhile until it gave me horrible knee pain..I kinda explained that in what I wrote.
    Thank you again everyone! I would reply with more but im so tired. everything you all said really meant a lot to me. :)

    1. Hey you.. I think it is you innate wisdom and intuition that says something just ain’t right about those pills.. so listen and trust yourself.. they sure do make you feel wonky and they aren’t really good for us. You do have to find something tho. I used Ayrevedic medicine.. blew my mind! Sick for 4 years.. and in 2 days, bleeding stopped. In two weeks.. normal stools and no embarrassing urgency. Find an Ayrevedic doctor. Its East Indian medicine and its only herbs that will “cool” the gut and repair the wall. no side effects! :)

  6. i just read you’re story..i have uc too,i know exactly what all of the struggles you have faced musted have been like. im 18 btw and i start college in several days. you senior year will be great trust me and i think the pill situation is going to bite you in the you know where..i say that because i don’t take my pill too..and i feel like crap. last yr i was in the hospital..that when my doctors found out i didn’t take my meds..so they did the usual thing. treated me and gave me more meds. i been better since i got out. that was in dec. some time around feb. i stop taking my pills and i been just fine with out them..now it august..and i been have some pain. reading your story makes me want to join this newsletter. as you can see i like writing alot too!! thanks for reading.

  7. Katelyn,
    I don’t know if you still read this, but I wanted to say something too. You were asking about the stress influencing the UC. I can tell you that for me it is the case for sure. Everytime I had a flare, even before I was diagnosed, I was in a very stressful time of my life (forced into a long distance relationship with my now-husband and starting a new job, then: planning a wedding and hosting guests and writing a BA thesis, plus financial issues all at the same time). The pain would come on instantly in a stressful situation and I was kind of a neurotic person. I don’t know, it was just all too much sometimes. Food never seemed to upset.
    Now that I know what is wrong with me, for some reason I feel much more relaxed already. I have just been diagnosed about a month ago. I did get sick about three months ago though, and again it was a really intensely stressful time and I wasn’t saying anything to nobody, never asked for help, but I got sicker than ever. That’s when I swore I was going to change and do yoga and meditate and look at life differently. Well, can’t do yoga yet, because I still am very weak and moving a lot hurts, but the other two I have done. And it works! So much BS has been going on these past months besides the UC, but I don’t freak out anymore. I can even make jokes about stuff that would have made me bottle up my anger, stress and anxiety.
    I’m calmer and more positive and overall it feels like it has helped so much.
    If you feel like stress is a big factor in your UC, work through it. There is so much stuff that you can do all by yourself to help yourself with stress. You’re strong from what I can tell, you have gone through some crap! So don’t worry – You’ll make it through anything with the right attitude. Friends who say you use the UC to get out of stuff you don’t want to do… They don’t understand and I bet they are not nearly as tough as you are.
    Anyway. Hope you read this, your post from August sounded like you needed some kind words. Please, let us know how you’re doing!!

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.