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Ulcerative Colitis
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Posted 8/5/2009 7:59 PM (GMT -5)
I am having one of those frustrating days when it seems like I am surrounded by well intentioned, yet idiotic people.  I know we all have felt this way to some extent or another!!

Things with me are very good right now-I can't complain.  Aside from some streaks of blood that started when I was last on antibiotics (for which I am back on canasa at night), I am going once or twice a day with formed BMs.  The canasa causes joint pain, but it is temporary, so whatever.

I went to the GI just for a regular office visit today, and we discussed future pregnancies.  Just planning ahead, looking into options kind of thing. (we are at least a year off from moving ahead with any more kids-if we ever do-we feel like it isn't important enough right now to risk my health in anyway)  I updated on FB, and all of a sudden, everyone is an expert, you know???  This one HS friend of mine, who I know means well, is constantly sending me links to the possible dangers of Humira (she is all holisitic-won't even vaccinate her children), telling me about Homeopaths in our area, telling me about my options, telling me she understands because her grandfather had colon cancer, etc.  I mean, I get it, she is trying to help.  But she honestly has NO clue what *my* ulcerative colitis is like.  She has no idea what it is like to be hospitalized because of it, to live with it, to live everyday with weighing the risks of being on meds or not.  I don't have a mild case of UC-I don't have any desire right now to try and go med free and try and control this holistically-I tried that and wound up in the hospital!

And then there is the whole third baby thing.  I'll be honest-it saddens me that we have had to put our plans to expand our family on  hold.  It is upsetting to me that we may never be able to have another child because of the ins and outs of these meds (though the GI said today that they could probably write a letter and get the insurance to cover Humira if need be, if it isn't approved before we were to get pregnant again).  But I HATE when people tell me, "You are lucky to have the two you have!  You should just be happy with that."  I AM happy with that.  I KNOW I am lucky to have the two that I have.  I wouldn't even be discussing it if having more children weren't THAT important to me.

I love the most when people say, "Oh, I totally understand-I had a stomach virus this past winter and it was brutal.  What is it that you have again?"

UGH. 

Again, I know people mean well, but my goodness do I wish they would just shut up some days.

Thanks for letting me vent...

Posted 8/5/2009 8:13 PM (GMT -5)
I can't really relate to the kids thing although I know what you mean. I can relate to the last thing. Soon after being diagnosed in HS I was talking about it, but not getting into details; being new to it I was incredibly embarrassed and in HS you can't let things like that (that being, diarrhea) get out and about, or people wouldn't let me live it down. One girl wanted to know what happened (past getting ulcers, etc etc) and was so incessant, and kept asking. I kept saying I didn't want to talk about it. She wasn't even my friend. Then someone said, "It's okay, she wants to be a doctor." I said, "But she isn't now!" Agh. It's not the same thing you were talking about, but I've gotten that too. Just thought I'd vent a lil too XD
Posted 8/5/2009 8:19 PM (GMT -5)
Vent away. Your friends and family mean well, but you're right that nobody really gets what you're going through....but you.

As people have told you, you're lucky to have a lot of things going for you; but it's also your right to want more out of your life and lead your life the way you want it to be, so keep at it.
Posted 8/5/2009 8:59 PM (GMT -5)
That's why I don' tell anyone anything. It's better to not have to hear their suggestions or to have them try to relate because they usually can't. I agree with the fact that you're lucky to have 2 healthy children but why should you be unable to have a 3rd if you so desire? Having 2 children is great but if you want more, that's your choice and you should have the opportunity. It is really no ones business to tell you what you should be thankful for. You have dreams and goals and you don't need to compromise them. I personally have never desired to have children but I would hope that if I wanted them people wouldn't be telling me that I should be appreciative for this and the next thing. I wouldn't stress, things will get better. Think positive and when you're feeling better your next baby will come. I hope you are feeling better soon. Would you still take the risk of having a child if you're on humira? I think I have heard of people having successful pregnancies on a lot of these drugs but at the same time, I don't think the long term effects can be known considering they are pretty new drugs.
Posted 8/5/2009 9:59 PM (GMT -5)
I have "well intentioned" friends too and I just tell them that maybe one day I will try what they suggested. But of course I don't and then I don't tell them what I am on or what I tried again. Sort of learning from my mistake kind of thing. They all mean well and most times they really are trying to help. How many times have you suggested something to a friend about some sort of remedy and you found out that it really did work for your friend? It makes you feel good that you were able to help in some small way. I know it can be annoying as heck though and over the years you will find that more and more people are sudden experts on Uc.
Posted 8/5/2009 10:03 PM (GMT -5)
Ugh, my parents do that. If my stomach's acting up, they always ask if it's something I ate.

The only one without UC who comes close to getting it is my boyfriend, who lived with me during my last flare when I was pretty much wiped out, but sometimes even he doesn't get how fatiguing it is. Luckily my moms friend has it and so does my best friend from high school, so that helps a bit.
Posted 8/6/2009 10:36 AM (GMT -5)

Rio in Maryland said...
As people have told you, you're lucky to have a lot of things going for you; but it's also your right to want more out of your life and lead your life the way you want it to be, so keep at it.

Hear Hear. Well said Rio.

My mother-in-law recently gave me the profound advice, "At this point it [UC] is only affecting you, so I don't know why you'd want to have surgery that would affect everyone."

Just accept that some people are idiots in some ways and adjust your advice filter accordingly, I guess.
Posted 8/6/2009 10:54 AM (GMT -5)
::scratching head::
How would having surgery affect everyone if your UC doesn't? That makes NO sense! I think opposite of your MIL...I have decided that if my UC gets to the point where I don't want to plan or go on family vacations, go to my son's events, etc, then I'll have surgery. I don't want my disease to keep him from experiencing the things I should, and if I'm flaring often enough or badly enough that it affects him, then out goes the colon.
Posted 8/6/2009 11:05 AM (GMT -5)
No one understands who hasn't had this disease. My husband is great, but I have to give even him some grim details once in a while to get him on the same page.

As for the multitude of clueless who think they can help, I often say "Hmmm....that's an interesting idea."

And fruitgirl, I've had 3 1/2 years of remission and just started with a little inflammation in my rectum and lower sigmoid. I started on HC suppositories today. My doc says if the rectal meds don't work we'll discuss Pred. I'm already starting to research to see if there's a good colorectal surgeon at Vanderbilt.
Posted 8/6/2009 11:10 AM (GMT -5)
Judy, I wish you lots of luck with the suppositories (and pred, if it comes to that), as surgery IS a big decision! I'll definitely try all of the meds (including biologics) before surgery, but I feel that letting the disease control my life is letting it win...surgery isn't!
Posted 8/6/2009 11:50 AM (GMT -5)
I think it's interesting that not one person has offered advice to me. I think it's mostly because they honestly have no idea what this disease entails and really have no idea what how to even offer help. Of course, almost no one knows that I have this disease except close friends and family. And not even all of my family knows.

I guess what bugs me though is when my my buddies think i just have a "pooping" disease and there's nothing really to it.
Posted 8/6/2009 12:55 PM (GMT -5)

fruitgirl said...
::scratching head::
How would having surgery affect everyone if your UC doesn't? That makes NO sense! I think opposite of your MIL...I have decided that if my UC gets to the point where I don't want to plan or go on family vacations, go to my son's events, etc, then I'll have surgery. I don't want my disease to keep him from experiencing the things I should, and if I'm flaring often enough or badly enough that it affects him, then out goes the colon.

I know! My MIL was making no sense--I said "profound advice" sarcastically. She was being a dolt, which I didn't expect from a 20-year O.R. nurse!!
Posted 8/6/2009 2:59 PM (GMT -5)
I've been lucky too I guess in that I don't get much advice or stories about someone's grandma or aunt that "maybe" had it ... If anything, people I tell get UC confused with IBS since IBS is much more understood these days. I have actually referred a few people to this forum just to read how varied symptoms and experiences are and at least two people did and said that they had absolutely "no idea" that UC was such a fickle beast.
Posted 8/11/2009 12:04 PM (GMT -5)
Hi Laura

I am so glad to hear you get to hear the same stupid things. I guess I'm not alone.  I am taking Cimzia I started last week and and am still praying it will start working. I have a great Doc (Sowerby) but his office are idiots. I am trying right now to get them to give me a iron shot I'm not sure why I have to come up with these things? This is the only disease where the patient seems to always be the advocate. I always feel like nobody gets it.

The worst part about this whole thing is also have two small kids. A girl Natalie age 3.5 and a boy Tom age 2.25. I am in the middle of a flare and some days I want to go back to bed with flu like symptoms but I have to get up and help them do things like eat, and get dressed, and play safely. Meanwhile I just want to sleep or I am in the bathroom pooping or throwing up or laying on the couch shivering with fa fever and achy. An this can go on for weeks or months. That is not the worst, the worst part is  I feel constant guilt from letting them watch so many movies. From saying sorry I know I said we could do that but Mommy still doesn't feel well. And mostly from snapping at them when I'm in pain they are acting out just to get my attention. They deserve so much better!

I was just hoping you have some tips, tricks or advice about how I can let them know I love them during this difficult time.

Thanks, Victoria.mannion@att.net  smhair

Post Edited (DO NOT OPEN THAT DOOR!) : 8/11/2009 11:24:45 AM (GMT-6)

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