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People who underestimate Crohn's

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Crohn's Disease
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Posted 6/18/2011 9:41 PM (GMT 0)
I don't really talk about Crohn's with a lot of people. My family knows that I have it but I only really have talked about my symptoms and surgeries with 2-3. One of them being my brother. My brother is about 20 years older than I am so I knew he wouldn't be weird about it, whenever I told him about it he would listen and I thought he understood. Well recently I haven't really talked much about it since I started Humira. The other day I was telling him that Iwas getting my wisdom teeth taken out and he tells me "Good thing you're doing it early because those wisdom teeth are real pain not like when your butt itched no that is want to jump off of a building type of pain, I'm glad you are doing that now I wouldn't want you to go through that pain." When I heard this I was completely sidetracked, when my butt itched?! 3 fistulas and 5 abscesses and fistulotomy was for or are an itchy butt? Real pain, like if what I have gone through is not real pain. And he was completely serious, my 38 year old brother completely underestimating my pain like if I were a drama queen complaining about a broken nail. I guess that's one more person I can't confide in. At least I still have you guys. Thanks for listnening to my vent, it's nice to come here where people really understand,

Post Edited (Lovely985) : 6/18/2011 6:28:07 PM (GMT-6)

Posted 6/18/2011 10:19 PM (GMT 0)
I know its not funny at all but your vent made me chuckle as I could just imagine the totally gobsmacked look you must surely have had on your face when your brother made that comment. Obviously a lucky guy who never gets sick!

I kept my crohns to myself for the first 10 years but find it much easier to talk about it now I am older yet still not many people get the pain thing. I would say your brother is just being 'such a man' but I wouldn't want to offend all the lovely empathetic men on this forum ;P
Posted 6/18/2011 11:48 PM (GMT 0)
The thing about Crohns is that we often look very well and are in incredible pain at the same time. We learn to get on with life and tune it out as best we can. When I'm in agony, hurting with each step I take,and I have that sickly flushed face... I get wow you look great with some colour in your cheeks.

Nobody really understands the pain even though they think they might. That's why this board is great. We all do understand. We know it's not an itch.

It drives me nuts, and I have to bite my tongue when I hear people complaining about a cold or other pains they have. Phoning in sick because they were awake with an upset stomach.

I don't usually mention my Crohns, unless someone asks me what are those pills you take or something like that. My family does understand however. Maybe your brother was trying to be funny and manly or he's uncomfortable discussing "butt" issues.
Posted 6/19/2011 12:06 AM (GMT 0)
I'd have called him on it. That is not acceptable.
Posted 6/19/2011 5:32 AM (GMT 0)
There is at least one thread here where women talk about how the pain is worse than natural childbirth.
Posted 6/19/2011 9:59 AM (GMT 0)

Dear Lovely,

I am new to this site, my daughter(11) was diagnosed with CD last October, right after she started middle school. I had known something was wrong for 2 years but no one listened until she started losing a lot of weight and wasn't growing.  She has had 2 remicade infusions and has gained almost 10 pounds, now we just need her to get taller so she isn't the smallest. Her energy level has increased ten fold, though she has some nausea. I felt sorry when I read your comment, It isn't that surprising when a stranger makes an obnoxious comment, but when your own family does you question, how are we related? trust me i can totally relate to that feeling, and it is very disheartening. my theory is that people are made up of sensitive (caring, understanding, dynamic) and insensitive, (out for themselves, incapabale, thoughtless). sensitive people only make up about twenty percent of the population, which is why the world is such a friggin mess!  my daughter is sensitive, and sweeter and much smarter than anyone i know, for real...and cool!

I think you are sensitive too, so the best thing you can do is limit time with your brother, and yes, call him on his insensitivity, even though it won't change him, it will make you feel better  to release your frustration about his attitude.

surround yourself with great people if you can find them...I'm still searching, but i have a few at least!

Posted 6/19/2011 12:55 PM (GMT 0)
For the most part my husband couldn't be better. He has been with me through this whole CD journey and has seen the worst of it. He picks up all the slack and tells me to go rest long before I would ever think to stop a project, but sometimes even he has his moments. I was telling him how I am getting nervous about our upcoming vacations because I am still having pain, I don't know when I will obstruct again I don't have any pain medication, and I don't know where the hospitals are.

(Little background, Since surgery in March, my doctor wants me to go to a new pain clinic and they don't believe in treating abdominal pain with narcotics. So I have NO pain meds and no way of getting any. I have tried to explain to everyone involved that it is ridiculous for me to have to go to the ER for pain, when I end up getting admitted without so much as an IV. I can manage clear liquids at home, IF I JUST HAD SOME PAIN MANAGEMENT.)

His response was that the hospitals don't do anything for me anyway and we can always just drive by to find out where it it. I tried to explain to him it wasn't just that I don't know where the hospitals are. Its that I could function and enjoy vacation more, IF I had pain medication when I am in pain, and yes indeed the hospitals do do something for me, they give me pain medication and stop me from curling up in a ball on the bed. He has been with me too many times when I complain about the hospitals not "fixing" me that that is all he can see. Sometimes it isn't about fixing, its about not being miserable.
Posted 6/19/2011 8:38 PM (GMT 0)
I completely know how you are feeling, I am 21 and was diagnosed when i was 12. My mom is still with the same man (her bf)  and still to this day, after seeing me in pain for years and in and out of the hospital and having surgery twice he is convinced because of what he reads on the internet that my crohns could easily be controlled with diet and the only reason i am ever in pain is because i refuse to eat correctly and am rebellious. When I was in the hospital for 3 montths I tried explaining to him that when I flare, it doesnt matter what I eat, everything hurts. And he also believes that if I would just eat correctly I would be cured. Well if that were the case then we would never need any medication or surgery if we would all stop being rebellious and just eat better. nono
Posted 6/19/2011 9:34 PM (GMT 0)
I was talking to an ex-boyfriend (9 years ago we lived together for 2 years, pre-Crohn's). I was discussing that he doesn't need to worry about me with the pain meds for pain *management*... He started talking about how sometimes his *TOE* hurts. I just had to shake my head. I didn't even bother. He was SO far off base, like your brother, that it's just not worth the effort to explain how he's mistaking.

Sorry you are going through this with your brother. I'm sure that makes it hurt all the more. Hang in there!
Posted 6/20/2011 11:59 AM (GMT 0)
I was just complimented on how you would never know I had CD if I didn't tell you. The fact that this came from a woman whose niece has severe CD and she thought I was the bravest person really struck me as the first time anyone ever really understood this darn disease to my face.
The downside is....most of my firends never understand. But I found a man that tries to understand as much as he can. Like Zanne said, my husband even has learned how to tell I am pushing my luck before I admit to it.
Don't give up on talking to folks. I found the first 10 years isolating when I did not talk at all about CD. These last 10 years have been frustrating with some people, but the ability to say it out loud has also lead to more freedom...and I must admit makes my husband and I more of a team.
Posted 6/21/2011 9:00 AM (GMT 0)
My b/f has been through soooo much with me this last year and a half.. 3 hospitalizations all for different things.. all VERY serious
He has seen me in SO much pain.. lying in a hospital bed with several different IVs.. dilaudid.. and all the meds I have to take everyday now that I am home
He has seen me go down in weight and up again.. up now because of the diet I have to be on and all these meds.. I am just too weak to do much
So his mom and dad are very supportive and even visited me in the hospital but now I'm out for about a month and she sees me the other day and says " WOW you gained weight!"
This was not what I needed or wanted to hear.. I am still within 'normal' weight.. and I am eating less than when I weighed 20 pounds less
She also knows I feel like (%&*^)
MY family is much worse. So I can't really complain
NY VEGGIE
Posted 6/21/2011 12:11 PM (GMT 0)
Veggie, that's funny about your boyfriends mother. My MIL stopped in over the weekend and complimented me on how thin I am. She and my SIL will do crazy diets and exercise for hours to burn calories, so being thin is great to her. BUT she knows I am losing weight because I am having blockages, in pain constantly and haven't had a real meal since February. Does she really think I am trying to lose weight. Or did she think I looked like crap before? I have been well within my weight range for years, so it isn't like I was overweight to begin with?

Every day I am amazed at the cluelessness of people.
Posted 6/21/2011 1:57 PM (GMT 0)
Lovely, ask your brother if he had an ice pick stuck up his butt if he would call it an itch . Maybe hes a masochist and likes pain .
Posted 6/21/2011 4:05 PM (GMT 0)
I've dealt with people who act like "it's just a little diarrhea" if it were just a little diarrhea it would be a picnic compared to this! This job I have now most people are pretty understanding, it helps to be protected by the disabilities bill though. I've been very open to my boss about what's going on because otherwise I look normal, they don't see what's going on inside or know how much pain you are in or how depressed you are because you feel there is no hope. Not that I suggest you mention you have Crohn's at the job interview-never do that! But, if it happens that you have been missing work a lot due to a flare or something, you may have to bring it up so they don't think you're outside enjoying the nice day or you were up late drinking or whatever they might think it is. I guess, I would not talk to your brother anymore, he sounds really insensitive. Talk to all of us, we understand! <3
Posted 6/21/2011 5:10 PM (GMT 0)
Pain and how we experiance it is so individual...like with all of us here for example, I guarantee you there are pains that you guys have/had that I have never experianced with my CD and pains that I have had with my CD that many of you have never experianced either. Plus everyone's pain tolerance is very different.

Giving birth for some lucky women is a piece of cake, they just don't feel a thing, some only feel very mild pain while for others it feels like death.

It's hard to measure pain, and Lovely985 your brother may have found getting his wisdom teeth removal the worst pain ever, I honestly found it to be virtually painless, for me it was more uncomfortable for a couple of days however, the pain I have experianced with my perianal crohn's skin tags was enough for me to wish I was dead and I'm not exaggerating...I used to have to fill the tub with water for each bowel movement to be done in the tub cuz my butt hole was such a mess (and I never even had a fistula).


From my experiance, giving birth to my son with no meds was no walk in the park but at least I didn't have to do it under water.

I think at times we are all guilty of underestimating other people's pain, and I think for that, that is why at times we all go through it so it can remind us to be compassionate towards others even if we're feeling okay it's important to recognize others that are in pain. That's why some people are truly compassionate and others only think about their pain.

Good luck with your wisdom teeth removal, and take special care with your CD during that time as well.
Posted 6/22/2011 8:51 AM (GMT 0)
Zanne
She really is clueless.. I have migraines and all kinds of other things that cause me tons of pain besides Crohn's, and she will make the strangest comments about how I look or something I am wearing, and then I have to remind her how sick I am and all the procedures (most recently the brain aneurysn that had to be 'fixed) and she'll say "oh yea...." It's infuriating.
I wish she was the only one that can't seem to 'get it' ... but unfortunately most people seem to lack 'pain' empathy unless they have really bad chronic pain... sigh
NY VEGGIE
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