My UC was just compared to a box of candy!

Hasn't bowel disease been "in the closet" for years? It was taboo decades ago to simply address concern of having the disease.
I only have my mother, which I'm grateful for having, and she's been nothing but supportive of what has happened. She blames herself for giving me this, which I can't agree or disagree because we really don't know the true cause(s).
I informed my cousin and uncle and they simply brushed it off like it was just another illness I'm banking on to get out of becoming an adult.
My cousin knows someone who developed UC when she was pregnant and needed the j-pouch surgery. She still didn't have sympathy for me.
What bothers me isn't the "immediate family' response, but the health care's response to this illness.
I had a nurse say "Having diarrhea isn't so bad. You can always take Imodium." And another nurse was so incompetent that she didn't know what the bristol chart was, or what Imuran is. Other nurse's said I should see my GI, right after I told them it would take a month or more just to get in to see him. I also told them that if a UC patient is going into a flare they need to "nip this in the bud", and they informed me they have sicker patients and I'm crowding the line.

Is there more awareness? I doubt it. I'm grateful and relieved I have a select few friends who understand the disease and they're there for me when they know something is going on. I'm grateful my mother was there for me 100% for every scope, every test and every doctor I had to see in the last year. I'm grateful that she would be a donor for a fecal transplant, which I'm considering of doing, if she can be the right person for that job.

p.s. I divorced my family. I only need my mother. :)

My GI isn't well informed of alternative medicine, he admitted that to me last month, but he's willing to look into it. I'd rather do my own leg work. We should trust doctors and nurses, but since I was diagnosed I know I can't. The only one I do is my GP. He knows the doctor who brought fecal transplantation to Canada, and he wants to talk on my behalf to see what is available to me regarding the procedure.
I really don't think any of us fit on the normal checklist! This disease isn't a business. It's our lives, it's our pain, it's our health. Did I want to be put on Imuran? Not 100%, but Salofalk did NOTHING for me, instead it made me worse. I had a collective three hours of sleep every night. I had 40-50+ hours at college, a partially disabled mother and house to take care of. I thought of long term when it came to my medication, not what will help for just a few months. Even if I'm in a bit of a hiccup stage right now.

I agree with you completely with it being tougher. I needed a family and they said it was just another excuse. 21-years-old and I've had more responsibility since I was 8, then they did when they were my age.
Sometimes m'dear, we have to understand they don't understand this, and when people don't understand, they won't sympathize. We aren't contagious, but sometimes it makes me feel like we are.

I usually don't expect people who have never had UC to really understand how our lives are drastically changed by the disease. The people who really amaze me are UC people without empathy. I've met them in person and read a few on this board.

One local gal I shared my condition with because she had a total colectomy and we were on the same sports team. I had just finished saying that I sadly could not eat bread or pastries that it would upset my stomach. She picked up a danish put it in her mouth and said Yummmmm. I felt like printing an "jerk" sign for her right then and there.

But y'know that's fine. I like to know where people stand, are they my friends or not. Do they have the basic human kindness in them? No? Then they don't make my list of friends. You don't have to agree with me, I don't agree with many things, but don't be rude.

When it comes to family, be close to the ones that support you and smile at the rest of them and stay out of harms way.

Nurses? Don't get me started, I've had some horrible ones. Take names and make complaints. I also take names of the good ones and make sure their bosses know they are good.

Dsm4life said...
Have an accident on the livingroom floor in front of everyone then ask if they will pray for you.

(i have sick humor not meant to offend) ;op

 

Lol. Yeah, that oughta get the point across. :)

My Mom says " Oh right, you don't eat in front of People " UMMMMM No, I don't eat at other people's houses due to the fact I will spend the next 3 hours in there BATHROOM !!!

Peace&Harmony,
I have had uc for 23 years and been hospitalized many times. My mother still doesn't "get it" even though her father died from mega toxic pan colitis complications!
I had no idea anyone else had a family that is in flat out denial about uc. My mother and siblings have never come to the hospital or offered to help my family in any way when I am ill. It feels truly bizarre.
I just let go of the resentment and frustration because I tried everything: educational talks and pamphlets, offered to have my doctor come to dinner and answer any questions, etc. Half my family are scientists who should know better. This is just plain old emotional blockage. They simply cannot deal with it. The problem is theirs not mine.
Overtime you will find many supportive people in your life. My husband, children and friends are usually extremely supportive and patient. If anything, they worry a little too much sometimes.
I really like the above quote "UC is like a box of chocolates because you never know what you'll get." So true. I support every thing you said. Big hugs.
SZm

Somebody said...
Have an accident on the livingroom floor in front of everyone then ask if they will pray for you.

Somebody said...
I once told someone I couldn't eat much or i'd get ill. She said "I wish I had that"! I was like "I wish you had it too" .

Oh... My... Goodness...you guys are SO funny!

On a serious note I have had dr's and nurses who just had no time for me and for years I had no idea there was any medication for UC except for asacol and colfoam. No dr offered me anything else even when I told them they didnt seem to be working. I could get the bleeding under control, but I still had chronic exhaustion and random bm's, D. They seemed to think I didnt have UC anymore bc I wasnt bleeding. ??? I look back now and think how strange that is.

I cant imagine how horrible it must be to feel so isolated and without the support of your family. Are you married? How are those absolutely closest to you? My family sometimes didnt understand what I was going thru at first but after a while they finally got it. My dh was in the ONLY bathroom in the house shaving once. I NEEDED to GO but he seemed to take his time purposely. I was SO angry with him. I told him if he ever did it again he'd get crapped on. It didnt take too long for him to finally 'get it' after that. My kids are great tho. One day my girls and I were at our weekly craft group and I had eaten potatoes just before leaving which I KNEW was a lapse of judgement on my part, I was in agony and eventually the inevitable happened I needed to Go. I did manage to wait long enough to make sure I was going to be the only one in the bathroom but my dd (who is 11) followed me to scare me (they do this ALL the time!). Well I exploded once my butt hit the toilet and it was long and loud and ...well you know. When I walked out of the cubical the look on her face was priceless, lol. Her jaw was on the floor and she was like 'That was disGUSting!' and we both burst out laughing. What else could we do? It was a special moment. We laugh about it still.

I dont count on anyone else to understand or I can laugh about it all with apart from those closest to me.

Hi SoIGotIBD-I meant no offence, I wasn't joking, this woman really insulted me with what she said to me.  If someone else wants my UC they can have it and I'll have their perfectly functioning body instead.  I was just making the point that it was an ignorant thing to say, and typical of what people say all the time who've never suffered serious illness.  Sometimes I get angry about it, and about having UC in general, I'm sure you can understand that.  Just because I didn't write a long reply doesn't mean I don't care about Peace&Harmony's story, just I don't know how to deal with ignorant family members either as mine are still very ignorant after 10 years so nothing I have said to them has made them understand.

 

Dizzy-noodles said...
Hi SoIGotIBD-I meant no offence, I wasn't joking, this woman really insulted me with what she said to me. If someone else wants my UC they can have it and I'll have their perfectly functioning body instead. I was just making the point that it was an ignorant thing to say, and typical of what people say all the time who've never suffered serious illness. Sometimes I get angry about it, and about having UC in general, I'm sure you can understand that. Just because I didn't write a long reply doesn't mean I don't care about Peace&Harmony's story, just I don't know how to deal with ignorant family members either as mine are still very ignorant after 10 years so nothing I have said to them has made them understand.

Im not sure what to say, I wasnt trying to be insensitive. Maybe we crossed wires somewhere??

When you get people who actually care, that's when you know you have winners.

TBH my fiance still gets grossed out if I start talking about poop stuff, but when I'm sick he's usually being super supportive. Like making me soup and banana bread.

I have a great supporter in my husband, he has never made me feel bad for anything, Since I spend most of my time in the bathroom he gladly sits outside the door and we talk and talk, without him I would be a ery lonely person looking at my bathroom walls, anyone ever want to put a TV AND stereo system in your bathroom ?