Community Forum

Hello, I am Lucy, an 18 year old from the UK who got diagnosed with Ulcerative Colitis around 6 months ago and have been battling it ever since. I've been on a variety of medications from steroids to eneamas with my body being unresponsive to treatment, urgently admitted to hospital due to a severe flare up but finally have been put on Infliximab infusions which hopefully will get me back to good health.

Throughout these months I've found it hard to find people to reach out to who understand what life is like living with this condition. All my friends have been amazing but unless you suffer with a chronic disease, it is hard to understand the full impact it has on your life. I would love to get chatting to anyone who could offer help and advice and just a way to help get each other through the struggles of IBD. There seems to be a lot for adults online, however for 16-25 year olds I have struggled to find forums or chatrooms. I would love to start a group for teenagers/young adults suffering with these diseases so if anyones interested let me know!

Sometimes you just need someone to talk to, I want to provide that support for others and feel supported all the same by them!

My E-mail - lucyjsb@hotmail.co.uk

Reply posted for lucyjsb.

Hey Lucy, I just created this account a few minutes ago so I'm still trying to figure this thing out. My name is Marla, and I'm 20 years old from the USA. I was diagnosed about 3 months ago now with Ulcerative colitis as well. If you ever need s someone to talk to let me know. Xx P.s. for anyone reading this I was wondering if I have to keep taking the medicines forever, or if there will be periods of remission were I can stop them? Thanks

Reply posted for lucyjsb.

Hi I'm Thailaya 22 years old, diagnosed at 14 years old. I've had Ulcerative Colitis for eight years
I am currently experiencing a pretty intense flare up and it sucks. I am not present in my day to day life. It feels like I'm squidward both in general (annoyed all the time by happy people) and when he found that town where everything was perfect and he started to feel like he was in autopilot. Everything I eat makes my stomach hurt, including not eating. I have never been so unmotivated in my entire life. I can't focus on anything, I have anxiety attacks when I make my hourly trip to the bathroom. I keep telling myself to push through and I keep telling myself to think about my grades (deans list, honors student, which means academic scholarship, which means if my grade drop I lose the money and can no longer afford school) and you would think these thoughts would light a fire under me but no... it doesnt't. I do not care anymore because whenever I attempt to be productive my stomach hurts or I have to go to the bathroom. I pat myself on the back for making it to my 9am on time...then quickly become ashamed when I have to leave for 30 min to use the bathroom, or excuse myself to vomit,to pass gas; it has gotten to a "whats the point in trying anymore?" moment in my life and I do not know how to real back in. I have tried fun stuff, like going to the movies, you know to relax... and my stomach pain decided to show up as soon as the previews ended. this is terrible 

Reply posted for lucyjsb.

Hi Lucy. My name is Tanner and I am 17 years old. I am from Indiana, USA. I was diagnosed when I was 16 years old, nearly a year ago. At the time of my diagnosis, the doctor who I had seen was astonished at my case. I was the worse case he had ever seen. Post-diagnosis my doctor went into my medical history and discovered that I had been sick for a year before I was diagnosed. My initial treatment was Prednisone and Imuran. The Prednisone was able to help treat my disease; however, when I began tapering off the Imuran did not take over. I continued to worsen. My doctor upgraded me to an emergency infusion of Remicade(Infliximab). Fortunately these infusions have worked for 8 months. 

My emotions since the Prednisone has caused me to become depressed. My diagnosis also caused me to loose most of my friends. I only had two that stayed. Fast forward to present time, I have lost the friends that have stayed. As I type this I realize that none of this was my fault, but it feels that way. I have lost almost all of the support that I need. 

I hope that you will achieve remission. Tanner

Reply posted for lucyjsb.

Hi, Lucy. I am 29 years old male living in California. I was diagnosed about 4 years ago, and I have been struggling ever since. I happened to never tell my friends, and I just isolated myself. I was lucky enough to be in college, and always had the excuse that i had to study instead of hanging out. after 2 years of mesalimine and sterioids, those meds stop working for me, so I decided to look for other solutions. I was told that my next step was infusion, but I love the outdoors and the sun. So, when i read that I will become sun sensitive, I refused to get them. Then, my mother heard of a study medicine taking people to test the medicine about a year ago. I got in, and I was on remission with that medicine for a whole year. It is really good. it is just not out yet, and I am pretty sure it is gonna take another 4 to 5 years to be on the market. Once, the medicine was taken away, i immediately got a flare. And thats where i am. Very sad. I am looking for another study, We happened to have several in CA. I will advise you to look for some in the UK. some of those medicines could help for a long time. I completely understand your pain, and I hope the infusions work really well for you. Wish you success.