Teen story with UC

Story of teen with UC
17 female
diagnosed July 2013

new to the website!

I had been having diarrhea with blood in the stool- never urgent, just whenever I went to the bathroom it was diarrhea - for about 3 months until I told my mom what was happening. It started to get more frequent and I would have severe stomach cramps so my mom took me to a GI. We scheduled a colonoscopy and an endoscopy and then I was diagnosed with UC. I started on lialda, prednisone, and iron supplements for the loss of blood. Losing the blood would make me tired and I would have extreme losses of energy. For the next few months my symptoms were normal- still going to bathroom around 6-7 times a day, but not urgent- i could make it to the bathroom in time.
Around December, the medicine that I was taking seemed to not work as well as it had been working for the past 4 or 5 months. Around January, I had my first accident in the car where I went to the bathroom in my pants. This really got to me for a number of reasons. First, I had extreme embarrassment and didn’t tell anyone about it. I just went home and tried to forget about it. And second, it ultimately changed the thought of car rides for me. Ever since then, I have had severe anxiety about car rides, and hate going out to eat at places that are far away. I will purposely order carry out so that I can eat my meal at home without having the anxiety and fear of driving home after having eaten food and not being able to make it home in time. If I know that I am going to be going for a car ride I purposely do not eat anything at all, even if the ride is late afternoon or at night time. Up until the current point of my life, I have had probably 5 or 6 accidents while in the car.
In January, my UC got much worse. I had an abscess on my groin that i had removed at the ER, and they prescribed me Clindamycin which ultimately gave me C. Diff. The C. Diff made my bowel movements much more frequent and I was going 15-20 times a day, even when I wouldn’t eat anything all day. I took antibiotics for the C. diff but my symptoms never went back to the way they were before December. I had to take higher doses of both prednisone and Lialda and continue with the iron supplements because of the loss of blood.
Soccer season started in February, leaving me at practices feeling anxious and miserable, and always uneasy about the long bus rides that I had to take with my team. about halfway through the season was spring break. Right as spring break started, I felt as though my C. Diff had come back because of the frequent bowel movements, but the tests were negative. After an anxiety filled vacation, I came back home and quit soccer. Telling my friends this was difficult because no one understands the way that my body works, and they didn’t get the real reason why I was quitting. They thought I just didn’t want to play.
From January to mid April, my symptoms were worse than they had ever been before. I didn’t feel like a normal teenager anymore. I felt a loss of eagerness to go out with my friends. I constantly just wanted to hang out at home because of all of the “What if?”’s that could have happened. None of my friends understand what I mean when I say that I don’t feel good and were mad at me for not wanting to go out with them anymore.
In the beginning of April, I finally realized that something had to happen if I wanted my life to get any better. The pivotal moment for me was when I had to miss my prom after party with all of my best friends because I couldn’t last an hour long bus ride to where they were going. It seems stupid to become upset over something like that, but it really affected me.
After that night, I went to go see my doctor about other options. He told me we could try Humira or Remicade. I have been on Remicade since mid April, and have had 4 doses of it since then, while still taking Lialda and waning myself off of prednisone. The 1st and 2nd doses didn’t do much (which is normal apparently), but the third dose is when I started to notice changes. 10 days after the infusion was when things started to get a little better. I didn’t have to go to the bathroom 30 seconds after eating a piece of food or taking a sip of water anymore. I was able to even go the entire day without going to the bathroom until after dinner time. This lasted for about 2 weeks until I needed my next infusion when my symptoms started to get bad again. Other than needing an infusion more frequently, the Remicade has been working pretty decently. I received my 4th infusion just a couple of weeks ago, and it still has not kicked in the way I had hoped it would, but my symptoms are more mild than they usually are.


Please comment with any suggestions for the anxiety or any words of wisdom for someone new to Ulcerative Colitis!

Hey there,

Sorry to hear that you've developed this, but you have come to right place.

You have to give the colon a chance to heal, you have to drop everything that can be an irritant to the colon until at least you are in remission. That goes for gluten, dairy, most fruits, raw veggies and even some cooked ones like broccoli, peas, corn and potato skins. My son and me find cooked spinach to be like medicine and is wonderful, others may not agree as we are all slightly different. Once things settle down then more cooked vegetables can be taken no problem
No more takeaways, no junk food until things get under control, and even then go easy. Drink plenty of good pure water, filtered or bottled. My son tolerates treats now, some fizzy juice, some chocolate, some takeaways, I try to control it as he has not taken ownership of the condition yet, and I know he is up to no good when I'm not looking, which is perfectly normal.
Get some high strength probiotics like VSL 3, take L-Glutamine to assist with colon repair, consider other supp's like high strength Omega 3, Vit D, and maybe a good multi vitamin to make sure you're getting all that you need to sustain optimal health. Once you get the diet sorted you can probably drop the multi vitamin
As I mentioned to another yesterday, you see a mountain in front of you, it is intimidating, but take strength from others on here, the knowledge and information that is on this forum from years of research and experiences is invaluable.

Good luck!

Steve

Hey kiddo! Good luck on your journey and keep reading and trying everything within reason. You will have good times and harder times but it can be managed! You came to the right place! Xoxo

Diet changes and probiotics may help. Good luck to you.