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Hi, first post so I'll give you an intro. I'm Danielle, 21, and I've had UC since I was 8, though I was sick a year before diagnosis.

In early 08, I got a blockage and that summer I relapsed and have been in a flare ever since. I didn't know how lucky I was not to have a flare for 10 years

It is very bad now. I've only bled visibly a few times ever, all were during this flare excluding after colonoscopys. But this month it's been every few days. I've had a few accidents recently while in cars and I get so anxious just getting in one makes me more likely to have an accident since stress makes my symptoms worse.

today's incident

My aunt and uncle started a charity, they are redoing an old house so that people who have lost their house and furniture, like in in a fire, can have a furnished place to stay til they find a new place. It is all volunteers and I have been helping. I was going to go today, I promised my aunt. But I woke up with pain from front to back and ran back and forth to the bathroom. I couldn't go. I felt horrible letting them and my grampa, who helps a lot, and my parents and sister who went because I wanted them to come with me. I feel horrible.

They start in the morning, my worst time. I can't get away from the bathroom for 2-3 hours after I wake and I can't wake til 11am or so since I also have a sleep disorder on my long list of diagnosis. By then I need to eat and eating makes me have to run back and forth to the toilet. After then I'm "better". I'm "better" now. But it's nearly impossible to go anywhere because of that. It's getting hard even to go to the Dr.

Often, my mother asks me if I want to go to (insert event here). All I can say is "idk maybe", she wants a decision, which is understandable, but the real answer is, "it depends on how I feel that day". But that answer isn't good enough.

 Reply posted for metaldanielle.

don't be *** yourself. my son has crohn's and it's very difficult to schedule anything when he's having symptoms. i stopped dealing with people who are in denial or who don't understand. it was too frustrating. when he was first diagnosed i didn't know how to describe what he was going through and i was pretty discreet.

now if someone asks, i'm clear without getting too detailed. i want people to understand that his symptoms can be serious and that we're not purposefully avoiding social situations--he just has to get better. it's hard because he's nine and i want him to have a childhood without pain. the main focus is on regaining his health, then dealing with the world at large.

it helped when ccfa found us a buddy who also has crohn's and his mom. they understand and still we had to discuss our separate cases because everyone's case is different. but they understand so much already. i'm still looking for people who have a lot of empathy, or who know someone going through a similar diagnosis. good luck to you. rest and take care of yourself--#1 priority.

 Reply posted for vonachens.

Thanks.  I don't work a job though. I was just helping out my aunt and uncle. I know what you mean about stress. Anxiety is the worst for me. My Dr is understanding about stress luckily.  He gets that stress can upset the bowel and that can make symptoms worse.  My family and freinds are the ones who are having trouble understanding. It's hard because I go from being able to deal with my symptoms to being unable to do anything. The change can happen in an instant. Yes, blockages are awful. The pain takes away the abilty to think straight.

 Reply posted for metaldanielle.

Your Symptoms sound bad. I know from experience that you have to forget about making everyone happy. Work is the hardest like you said, I am very focused on my work probably because I do not want to think about my Bowel Disease.

Most people are more understanding than you think. If you have to talk to your superiors at work just lay it out for them and you will at least put some of that out of your mind if you can it is really hard.

My worst Symptom is having cramping right after I try to eat. My Doctor said Crohn's does not cause this and that Stress has no effect on Bowel Disease. I think he is crazy. I wish some people could experience how really bad it is to have a Blockage.

 Reply posted for anthonygomez69.

Thanks for the pep talk.  :) I have been one of those people who thought "it wasn't that bad". Because for me it wasn't. I was "well" most of my life. Among all my illnesses it was one of the least cause of problems . I went to the bathroom more often than normal, but that was it. But I got sick at the snap of a finger. I don't think anyone remembers how I was when I first got UC and I was never this bad anyways.

 Reply posted for alanschachter.

After 25 years of IBD it still amazes and saddens me that there are people who would make a seriously ill person feel badly about the natural consequences of her symptoms. You haven't let anyone down: you were too sick to make it. If you had had the flu and a raging fever no one would question your inability to show up. Somehow (perhaps because there is so little awareness of IBD among the general public) some folks assume that "it's not that bad." I've been hearing that for DECADES and the cruelty of it still saddens me. My whole life has been deigned by some to be a failure of will rather than of health. The ones who do understand are priceless. Seek them out, and distance yourself from anyone (family and 'friends' unfortunately included) who blames bad character for your absences, rather than a bad colon.