My UC Life Story Thus Far – Young Person with Colitis

My name is Erin, i was diagnosed at age 5 and am 18 now so that’s 13 years.
i like to ride horses. im a pharmacy student in my second year. I’m from USA. i have two sisters and live with one of them, a mother, and a step father. my favorite bands are green day and blink 182. feel free to contact me
facebook: Erin Thompson
email: day_love_green@yahoo.com

My Symptoms:

currently i have canker sours, bloating, gassyness (ugh!), somewhat mild belly pains (well in comparison to what it has been), looser stools (but again not to bad), nausea at site of food/after eating
you might say i’m in a pretty good spot, except that i’m coming out of remission after about 4 years -.- just what i need in my second year of college.

My Story:

So at age 5 I was diagnosed with Ulcerative Colitis. I don’t really remember much about it except that i was supposed to call my mom every time i went to the bathroom and that i had to take sulfasalazine every morning. In elementary school i tried telling my friends about it but they all thought i was weird, i mean what 7 year old talks about things like chronic illness with their friends right? I can’t really blame them, it was a rather odd situation for them but it still made me feel like an outcast. Luckily the meds were keeping me in remission so i didn’t really have to worry about it. i stayed in remission for a good 9 years, an exceptionally long amount of time to be in remission. Then i went in for a regular scope to see how i was doing, i was feeling fine but the results said i had a little bit of irritation. This made the doctor and my mother decided it was best to change meds to asacol, a very similar med to sulfasalazine. I’m not sure if it was because of the switch or the scope or if i was just coming out of remission but soon after that i started having symptoms again, although i did not recognize them because it had been so long since i had had them. When i did notice them i was embarrassed because it was a rather personal issue and i hadn’t had to deal with something like that before. Eemember this was sophomore year of high school and i was only 15 at this point.

So i went on and it kept getting worse, after a while it was so bad i was going like 20 times a day but i still managed to hide it because i didn’t even want my family to know. One night i couldn’t take it any more, my mom found me crying on the couch because i was in so much pain, i told her everything and ended up being driven to the hospital within the hour. They admitted me very soon after we got there. They said i had toxic mega colon which basically means I’m lucky it didn’t rupture. they put me on a lot of different meds and iv dripps. They tried a few but none of them worked. i couldn’t eat anything so they gave me a picc line (a long term iv that goes directly from your upper arm to your heart). i don’t remember most of the beginning because i was so heavily drugged, i do remember one of them made me hallucinate that a cat had jumped out of the TV and i was sad because i couldn’t pet it. Leave it to me to be worried about petting a kitty in that sort of pain lol. they had me on prenizone and some other temporary medicine that i don’t remember and after a couple days put me on 6-mp. This was working great, for about a day. the next day i had a seizure, all i remember from that was that i had been pretending to sleep because my mom was on the phone with my grandma crying and i wanted to give her privacy, i had a killer headache that day so i had an ice pack over my eyes. It felt like i had fallen asleep and woken up surrounded by nurses and doctors and who knows who else. i was shocked by the chaos because i didn’t know what happened and why they were there. My nurse explained it to me and i was rather calm about it, they took my vitals and notified the doctor and said just to monitor me and take me off that med. (note this was a very rare side effect, like one in a trillion it dosnt happen in most people and is unlikely to happen to you but it can). I dont remember after that but apparently as soon as they left i had another seizure and they all had to come back.

The next time i woke up i was in the ICU. They put me on an anti seizure medication and some heavy narcotics, i was very out of it for most of my time there. After i think two days i was able to go back to a regular room. i was not being monitored extremely closely and woke up every two hours for vitals. they put me on remicade now because we were running out of options. Luckily this seemed to help a lot. I progressed rapidly and was soon able to go home.

After my two weeks in the hospital all i wanted to do was go to school,

I was and am a nerd you see.

 I was really weak for the first few days because of all the bed rest, it was very difficult to even climb the three steps to get into my house. once my strength returned i was able to go to school, i was really excited to see everyone, they had all sent me cards and stuff while i was in the hospital. When i got there everyone treated me like i wasn’t normal any more, they didn’t know how to act around me. They didn’t understand i was still the same person. Only my friend Steven treated me the same as ever and could cheer me up no matter how bad the day was, to this day he is still my best friend because of that. But it made me really not be able to trust most people and made me get an entirely new, very small, set of friends, who i barely trusted and didn’t often talk to. it was rather depressing but then again i was rather depressed. It was so horrible i tried to end my life, i failed. Still Steven is the only one who knows about it, until now obviously.

But long story short i got better, all that time in the hospital made me want to pay it forward and help other sick people. That is why I’m in pharmacy school now. now, four years later, i am starting to experience symptoms again and am really scared because, well you see where i ended up last time. its even more scary now that im paying for school, i have a job, i have other responsibility’s. My doctor upped my dose of remicade but that doesn’t seem to be working.

Well thats my story thus far, Im glad i could get it out there
By the way if there are any other people out there who either are young with colitis or were diagnosed when they were young like i was, i would love to talk to you, i have never met another child UCer.
facebook Erin Thompson
email day_love_green@yahoo.com

Where I’d like to be in 1 year:

i would like to be once again in complete remission

Colitis medications:

i would just like to say that rare side effects are rare but not impossible, be cautious of them and use them as well to help decide the medication you take becouse you might be that .00001% who actually gets it, i was. but also dont fear medications because of them, just be educated.

written by Erin

submitted in the colitis venting area
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