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Crohn's Disease Forum » Support Forum » Vent Away » Well-meaning people, darn their hides!


11-09-2013, 10:45 AM   #1
Goddess
 
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Well-meaning people, darn their hides!

Rant alert: Has anyone else had this happen more often since gluten sensitivity became big news?

Of course, it's good that people check for celiac disease or allergies or even sensitivities instead of suffering from debilitating conditions that might be remedied through dietary changes instead of major medical intervention.

But what I've got is Crohn's Disease. No one ever asks me what it is.

Instead they tell me that it's gluten or soy or lactose or that I need to get on the Paleo Diet or drink alkaline bottled water or go to an Oxygen Bar or have a coffee high colonic or a a green algae enema or that I could be cured by a fecal transplant or tapeworms or dirt. Or that I need less stress or more mindfulness meditation or should try tai chi or quit having a negative mindset or ask Jesus to intervene. No doubt we all need less stress and it's good to think positive thoughts, but the whacko advice stresses me out and makes me want to kick them.

So I listen and thank them, because I'm sure that they're trying to be kind and helpful, but it would be really refreshing to have someone actually ask me something about it without automatically jumping to share what they vaguely recall having heard somewhere. "I've heard of Crohn's, but I don't know much about it" or "do you think you're being treated effectively?" or "do they know anything about what causes it or how to prevent you getting hospitalized again?"...that would be soooo nice. Kind of like saying, "I'm sorry for your loss" instead of "at least it was a quick death".

I did not cause my own disease. Jeez. That's not the way it works. For most people all they did was to be born, and it's kind of tough to avoid that. All I did was go to India and stay at American chain hotels and eat hotel food (I had a nice plan to travel more "Lonely Planet", but I got sick before I could get to that part). I caught some mystery bug that knocked me flat, and my doctor, and the state's Labor and Industries disability doctor, say that, more likely than not, that's what triggered my immune system to freak out and attack me.

[Since I was traveling for work, I eventually got compensated for 2 weeks' lost wages when I was too sick to go back to work immediately. And they closed my file, because, after all, I was back to work. I quit that job after my next 2 flare-ups and week-long hospital stays. So the job's long gone. But I'm going to have this for life.]

In my case, I was lucky...the doctors got all fascinated because it was "exotic" (you know the saying, "if you hear hoofbeats, don't think zebras"? These doctors were thinking unicorns and pegasi...) and checked everything they could think of 12 times. Oh, and along the way, one brilliant guy said, "you know, whatever's causing it, maybe we should just treat the symptoms for now." So I didn't die.

Before this, I think that I myself had some kind of vague prejudice that people who got sick must have done something to cause it. But boy do I regret that now.

Don't people realize that it's insulting to tell me what caused the disease or how to cure it? What I want to say is, "wow! i never knew! Why don't you do some randomized double-blind clinical trials and then it'll be international news!"

Grrr...but I do know that they're well-meaning.

Currently in a venting mood because I'm 3 days out of the hospital...and nursing my (somewhat-less-than-well-meaning) husband (from now on I think that I will begin introducing him as, "my first husband"), who has a sniffly cold. Who told me I don't look sick (yes, because I take 40 mg of Prednisone for fun, you know). And that I must not be that bad off, since I'm not bedridden and didn't need surgery (he declined my offer to show him the vivid colonoscopy photos, somehow). And who said (from his sickbed), "now that you're home and not working, you could at least vacuum". After being apart for a few years, I moved back to make it work, so this is the first time he's dealt with a flare and hospitalization. And at this rate, it's going to be the last. Another brilliant question from him, "so now are you just going to be sick all the time?"

Thanks for giving me space to vent! and good health to all!
11-09-2013, 11:00 AM   #2
Clash
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I had a lady on the elevator AT THE CHILDREN'S HOSP tell me after asking why my child was there, that her sister/cousin/aunt/whatever had that and she just stopped eating spicy food and now she's fine. Thank you so much for that as soon as they remove all the tubes and finish my son's remicade treatment, and give him his MTX dose along with some other meds he just happens to need and he CAN eat we will get right on with your non-spicy food cure. That was in my head, "Thank you for that and I hope your sister/cousin/aunt/whatever continues to do well is what came out of my mouth.

So I hear ya!
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11-09-2013, 12:14 PM   #3
Goddess
 
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I'm glad I'm not the only one with the huge gap between what we think and what we say!

I figure that if I said, "thanks, but that hardly applies in my case", they'd just think I'm closed-minded.

As for the [first] husband, I'm pretty sure that I can just give a wan smile, and then make damn sure that he's not going to be inconvenienced next time.
11-09-2013, 03:52 PM   #4
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I had a lady on the elevator AT THE CHILDREN'S HOSP tell me after asking why my child was there, that her sister/cousin/aunt/whatever had that and she just stopped eating spicy food and now she's fine. Thank you so much for that as soon as they remove all the tubes and finish my son's remicade treatment, and give him his MTX dose along with some other meds he just happens to need and he CAN eat we will get right on with your non-spicy food cure. That was in my head, "Thank you for that and I hope your sister/cousin/aunt/whatever continues to do well is what came out of my mouth.

So I hear ya!
Oh dear! i couldnt help but chuckle when i read that, because it reminded me about the nurse while i was in hosp for my colonoscopy. I hadnt even been diagnosed at that point and she was telling me about her niece and how she has crohns but all she has to do is avoid mushrooms and beetroot to be fine.

"Well great.. thanks.. but i hate both of those foods anyway and i dont feel particularly fine, you tit!" (was in my head, not out loud ofcourse!)
11-09-2013, 04:07 PM   #5
nogutsnoglory
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I have heard a million cures to my disease from well intentioned people. Everything from oxygen therapy, Chinese herbs, various diets, supplements, juice fasts, yoga, accupuncture and some really odd things. I thank everyone for their suggestions and then get frank with them and say do you realistically think these work? Wouldn't every IBD, cancer patient etc take it if this was the holy grail? I explain I have tried everything and that in spite of that I have had numerous surgeries, required loads of medications and have suffered enormously. People need to realize this isn't a joke or a little stomach bug, we are talking about an incredibly aggressive and complex illness. Ok I'm don't with my response rant
11-09-2013, 04:25 PM   #6
poppets mum
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Calm down dear and do some deep breathing. Joke. Sorry, I couldn't resist. If I hear once more that breathing deeply will cure my kids I may just hold my breath and never stop.
11-09-2013, 06:22 PM   #7
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Well-meaning? You are being far to kind to the idiots who spout stupid things thinking the are smarter than god.

Recently I was frustrated about being sent home from ER without any help and had a friend tell me that I was over-reacting and that my symptoms were from stress.
11-10-2013, 06:42 AM   #8
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Strangely, no one ever says things like this to me. Except when I first got ill and was undiagnosed/told I had Irritable Bowel Syndrome. Then it was the doctors who were telling me everything from: it's caused by you stressing over exams; you just need to eat more; give up dairy/gluten; etc.

But I never get that now. Maybe because I look so sick (incredibly thin) and people who know me know I'm in hospital often, usually having major surgery. A tiny, slightly twisted, plus side to have a more severe illness, perhaps?
11-10-2013, 09:09 AM   #9
Ihurt
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People can be so ignorant, honestly. What is really bad, is that some have family members that can be just as ignorant and cruel with things they say. I still remember my brother telling me at one point that all my issues and pain would go away if I just stopped thinking about it and had a beer!!! Really???

Even with my bladder disease( IC), I had one ignorant doctor hand me a sheet of paper with an elimination diet on it. He said if I stopped eating those things, my bladder should get better. Funny thing was, I looked at the list and I did NOT even eat any of the stuff on that list. I was already on a bland diet for years due to gut issues. When I told the doctor that I did not even consume the items on his list, do you know what he said? He said, oh, you probably are eating some of these things and you just do not even realize it!!!!! Umm, excuse me??? I HATE when people talk down to me or like I don't have a clue. So yeah, I hear your frustration there.....
11-10-2013, 09:40 AM   #10
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wieeeeeerd!! i went to egypt for 2 weeks on an Expensive All Inclusive at a 5 star resort and got some bug and my doc told me the same that thats what had triggered my crohns before that i was in perfect health!!
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11-10-2013, 12:51 PM   #11
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YES, apparently it DOES happen. My doctor said that it's one of few causes they do know of.
11-11-2013, 06:48 AM   #12
Axelfl3333
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I wouldn't,t disagree with your dr on the illness triggering crohns.i had something fairly similar I think I had it but a viral infection really got it going
11-11-2013, 07:14 AM   #13
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I wouldn't,t disagree with your dr on the illness triggering crohns.i had something fairly similar I think I had it but a viral infection really got it going
Don't disagree at all...it was definitely the illness that triggered it. And I'm lucky: since it makes for a more-interesting topic than people's impromptu treatment protocol recommendations, they often move on.
11-11-2013, 07:55 AM   #14
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Remember everyone, Crohn's is 'just a tummy ache'! At least, that's what most people believe. Or it's IBS. Or it's some imaginary disease that doesn't exist (yes I have actually had someone tell me that I'm making it up!).

I know what you mean about well-meaning people. I think they're just trying to help but I too get immensely cross by about the fiftieth time I've heard 'why don't you try this, it might help' or 'stop eating such and such then you'll feel better'.

Really? REALLY? Sheesh...

I find I really have to bite my tongue with a lot of people now and I did actually pretty much tell my nutritionist to go and shove it where the sun don't shine when she was all like 'wholegrains are the answer'. I can't EAT wholegrains, much as I'd like to, because my body doesn't like them. The list of food I can eat is really limited, and this causes the well-meaning types to say things like 'why don't you try eating x or y, it will help'. And when I say that x or y will probably make me sick, they're all like 'well you don't know till you try'. Sure, cuz I'm going to risk an obstruction or vomit episode by eating your magical fairy food. Tsk.

Sorry, this turned into a bit of a rage! Didn't mean to jack your thread
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11-11-2013, 08:04 AM   #15
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[/QUOTE]Sorry, this turned into a bit of a rage! Didn't mean to jack your thread [/QUOTE]

I think we call it contributing, no?

When I was first diagnosed, my best friend said, "what is it? I know that it's a scary disease that involves going to the bathroom, but that's about it." Wish more people would admit that that's the extent of their knowledge!
11-11-2013, 09:01 AM   #16
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I have a friend who always seems to be suggesting ideas on how to treat the Crohn's and it usually has something to do with diet or trying something herbal. I've probably tried most of her suggestions in the eleven years since my diagnosis and none of them seem to have cured the disease like she claims it would. I almost feel like saying 'Oh so when did you go to medical school since you seem to know better than the consultant who has been treating me for all these years'.
11-11-2013, 10:03 AM   #17
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I've actually just thought of one area where I do often get those well-meaning comments - from my parents and from my doctors. They just don't get why I can't eat more and gain some weight. They tell me my food portions are too small, like I don't know that already. They're small because that's all I can eat! They don't understand that being "not hungry" is not even close to describing how I feel when my body just doesn't want food or when food it making me feel so ill. My mum and my GP seem to think that Ensure drinks can't fill me up since they're liquid and not "real" food. Just because they're liquid doesn't mean they don't impact on my digestive system! I can't just add four Ensures on top of what I'm already eating without it having effects, which is what they seem to expect me to do.
11-12-2013, 08:57 PM   #18
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Ive had someone tell me I could fix Crohn's with a diet...
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