What is your ulcerative colitis story? Let's share!


Patients Ulcerative colitis

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Posted on

Hello all,

I hope you're doing well! emoticon cute I thought I would open this discussion so we can get to know one another better!

So, what's your UC story? When were you diagnosed? What type of UC do you have? What treatments have you tried and how have they worked for you? How are you doing today?

Feel free to introduce yourself and share your story here!

Take care,

Beginning of the discussion - 8/14/20

What is your ulcerative colitis story? Let's share!

Posted on

@Courtney_J I was diagnosed in my late 20's. I'm in my 50's now. I had been having problems for a few years but I was too embarassed to talk to anyone about it or see a doctor. Eventually it got to the point where I could barely get through the day like a normal human being so I finally saw a doctor. I had a hard time talking to people about it, so I've kept it mainly on a "need to know basis" with people, only a few close friends and family members know about it and then my company at work and some coworkers. I'm doing better now after all these years, my flares are pretty well managed by mesalamine (Pentasa).

What is your ulcerative colitis story? Let's share!

Posted on

My son was diagnosed about a year ago. He had been having stomach problems for god knows how long, because he wouldn't talk to us about it. We eventually noticed that he was losing a lot of weight and was spending a lot of time in the bathroom and was lethargic (harder than you'd think to pick out in a teen), and finally after a big flare where he had a very high fever, we took him to the ER and they diagnosed booked him in for a colonoscopy pretty quickly after a CT scan showed colon damage. He's had adjusting to the diagnosis because he just wants to be a regular teen. I'm hoping that I can get some insight on here to help him through this. He's going to need to learn to take care of him self as an adult!

What is your ulcerative colitis story? Let's share!

Posted on

Living with this disease is so horrific im not sure you can actually call it living. Now with Covid added into the mix its made it all the more isolating and lonely. Ive had UC for 10 years now and been through a bucket load of meds that work only for a short period of  time which is mentally frustraiting to the point that i just want to give up. I was waiting to get into a drug trial then Covid hit and the trials got put on hold,now been in this flare for just over a year now, I finally just started the trial but no change yet.

Even prednisone isnt stopping flares anymore, just makes me swell up with the oh so charming moonface.

The fact that this is an invisible disease also adds to the self inflicted sickening guilt of cancelling plans with friends and asking family for help far more than id like.

Honestly barely leave my apartment even to walk as i cannot judge if ill make it back to the bathroom in time.

Cant work. Dont know what foods to eat anymore. Absolute shell of my former self.  

im not a negative person but UC forces me to constantly be thinking of myself and this pain.

The thought of suffering and trying to make somesort of life with UK for the next 30 or 40 years is terrifying to me,i see no light at the end of the tunnel. No way out.

sorry for the extreme darkness, obviously needed to vent.

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