If you JUST... (rant)

I am so sorry Kara, that you are having to hear that. I am blessed, my mother has always had a tender GI track and she and my father totally understand. Now, my parents are 80 and 77 and precious. My sister who is an RN understands as well. My husband is accepting it. Didn't want to at first, but I really think he is now.

This is a very frustrating disease and we are fortunate to have this forum. Wish I could spread my magic wand and make all of our pain go away.

Gigi1227

Diagnosised 8/25/08
Currently Flaring
Canasa
Asacol
Mega Probiotic
Psyllium
Mega Probiotic

Try being 17 with UC constantly pooing and in pain, trying to balance a job, school, a boyfriend, and trying to lead a somewhat "normal" life. Its HARD. And on top of that my parents are taking the blame for me having UC because my dad has it and hes constantly telling me he wishes he could take it all away..that i shouldnt have to deal with this. Its really hard to be strong but so far i think ive done a good job at it =]
I hope things get better for you and ppl start understanding sweet melody.

Guess I was one of those who did not understand for so many years.  Sorry now for some things I said but I honestly was trying to help friends, etc.  Being a senior is no fun with this either - husband and family like to go out to eat, shop and travel - none is easy!  Hang in there.  Accepting is first step and doing all you can to get the right treatments.  I am also obese and of course many think if I would lose about 70 lbs. I would be fine!  YAH, sure!  One thing you can do is look around at those worse off - my husband is fighting Stage 4 lung cancer and you would never know it - what strength and attitude! 

ElaineNY

My family and friends have all been great. The worst person is my FORMER GP. I would tell her that stress impacts my UC. She kept telling me to run around the block. I then said that if I am in flare that exercise made it worse. To which her reply was run around the block again.

For years my parents would say "what did you eat" or "what are you stressed about" everytime I had a flare.  I finally lost it once and told them how stupid those comments were and that it had nothing to do with either of those things and I wouldn't let them blame my illness on me anymore. Most of my family gets it now, but I do have a few people in my life who don't - - - I try to gently remind them of the facts and to the real jerks I just say "you wouldn't make it through one day with this disease because you've got to be really, really tough."  That usually shuts them up! 

"She goes.. tons of people with intestinal problems live normal lives and are fine"

My dad says that ALL the time! Then he goes on about diet, exercise, positive thinking, etc. etc.

And I completely understand about the job thing--it's really hard to find a part-time job that doesn't require a lot of energy. ARGH.

Yes I know those comments too. It generally goes something like this...
them: So eh I heard you were in hosptial, what did the docs find then?
me: I have ulcerative colitis
them: what's that?
me: it's IBD
them: (eyes light up) oh yes I have that, YOU JUST NEED to eat lots of fibre and fruit.
me: well it's not IBS, it's...
them: I know what it is, my gran's friend's neighbour's nephew's girlfriend's mother's brother's flatmate's dog has it too. I know ALL about it.......and then before you know it they're into a long (long) story about their sufferings with IBS....
me: (just shoot me now)...seems that having UC renders you stupid and opinionless when speaking to an expert on the subject of IBS!!!! (I'm rolling my eyes now)

I got a text while in hospital after telling someone who was inquiring about what I had. 'Great' came the reply...'and totally curable!!!' YOU JUST NEED to eat lots of fruit and fibre' Half the time I don't bother explaining, it's always the same...It's ONLY IBS, sure we all have a touch of that.

My advice.....YOU JUST have to ignore them. It can be hard because while I don't want to be telling everyone the extent of the disease I feel that sometimes I have to defend my suffering so that it's not minimized to IBS...I wish it was IBS...not that that is necessarily a nice thing either...don't want to minimize that for the IBS sufferers. But it's worse than IBS and i hate it when people say things that make it sound like I've a pimple on my arse and making a big deal out of it.

Phew...I feel better now thanks!!!

here is some irony for you. In 97 my dad was hospitalized with the early stages of Toxic MegaColon. It was determined that he had UC for years but his symptoms were not so server that he couldn't function. During the year he spent in the hospital after his surgery he almost died twice, and ultimately ended up with a J-pouch. Fast forward to my UC now. When I start to go through a flare like I am now I am told " son if you would lose weight and eat healthier this would clear up". I also get the impression that he thinks a couple of pills and everything will clear up in a day or 2. I am convinced that either no one has really explained what UC was for him and what it is for me now. Or he has the attitude that if you are ignorant to it, it will go away. Since his symptom weren't as server he has no clue what it is like to live with this.

I joke with my wife that one day I am just going to crap in his car. then he can see (and smell) how real this is. LOL

Autoimmune disease... I will remember it when I need help but don't want someone to know the specific problem.

One more smile about my husband and rant about my mother-in-law: In the car stuck in traffic driving from a sporting event (another dreaded situation), my husband was driving and saw me start to roll the window down even though it was freezing out, knew what that meant without my saying anything, and immediately turned the radio down (he knows I need cool, quiet when I don't feel well). Unfortunately, his mother starting chewing him out because she had turned it way up, about disrespect for her, etc etc. I don't like to talk about my UC with her (it's fodder for gossip) but I had to speak up and defend him. I told her he did it for me. 

I love my husband.

My family likes to say those IF YOU JUST.. stop thinking about whether or not you have to go, IF YOU JUST... eat better and so on. I've been diagnosed for almost 5 years, at first i didnt even really know what was going on (i was 10) but then by 8th grade i became depressed and that bad stuff. Then last year i was talking to my sister, and she told me that i was her hero because she thought i was really brave in the face of this. Ever since then i haven't become sad or frustrated by this.

My DH jokes that when anything happens my family just happens to be experts on the subject (no matter what the subject) so when I got UC they went out and researched and researched and researched (yep - still researching).  I get the - you shouldn't eat that or you should try this, you need to slow down, work less, rest more...from them.  After 4 months of flaring post diagnosis many of them kept saying I should just have surgery.  When I said that I didn't want to end up w/ a bag and the potential problems associated w/ that when I'd been sick for less than 6 months and was getting better it was like a light went on.  I also have the (un)fortunate reality that my sister is a biomedical statistician for Abbott Labs so she kept asking/telling me about Humira trials.

The flip side is that I've been very open with everyone (work and personal) about the fact that I have UC (I disappeared from work for a month - people noticed).  My description - bleeding ulcers in my colon, drugs to manage it for the rest of my life and watching my diet, stress, and exhaustion (I let them figure out the rest of it unless if they ask for more info - which most don't).  Most of the time the result is that everyone ends up asking me how I'm doing, do I feel ok, am I getting better...  After reading this I think I need to stop getting tired of answering the how are you doing questions and be thankful that I'm not getting the if you just (other than from some of my family members - but they are actually trying to offer useful suggestions that they've found and I've used some of them successfully).

I guess I look at the "if you just" stuff as people just trying to help and I take it all in and process it as I please.  Some info goes in one ear and out the other, some stuff I actually try or research it in more detail to see if there's anything useful/worthwile in it.