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05-20-2013, 06:12 PM   #1
Everly
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Does it irritate anyone else?

Sorry, time for a rant!

Does anyone else get irritated when you tell people you have Crohns or UC, and they say, "Oh, well there are so many other illnesses out there that are much more serious! And don't worry, there's treatment for Crohn's disease/UC!"? I know it infuriates me. I know things could be much worse for me, but the fact they aren't taking my illness seriously and not even caring about the pain I'm constantly in, just ticks me off!

I have to carefully explain to everyone that yes, there are treatment options, but there's no cure and IBD should not be taken lightly. I explain to my friends that my intestines are inflamed and the cause behind it, and they just say 'hope you feel better' or 'sorry to hear that'. I know there's not much someone who hasn't experienced it can say, but...it's not just a normal stomach ache! And thinking positive and taking pepto will not help!

Sorry for the rant, I just needed to let some steam off because I had a really rough day.
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05-20-2013, 06:39 PM   #2
Jennifer
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I'm sorry you're having such a rough day.

Yes it is irritating. Sure there's treatment but what about the people who have tried everything and are still in a flare? What then? It happens and I see it more often then I'd like on the forum. Its sad. There's only so much that can be taken out. That's what worries me with this disease yet many people don't seem to understand that. Sure there are plenty of things that can kill you faster but its still possible to die from Crohn's so knowing that doesn't make it any less scary/serious to me.

I know that's a bit further than you went with it but its something I think about often.
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Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
05-20-2013, 06:56 PM   #3
Jim (POPS)
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Yes it does irritated me all the time. The longer I have crohns the more I don't want to tell people that I have it.
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05-20-2013, 07:47 PM   #4
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I am glad you vented. Just reading your message makes me want to join in. Forgive me...I am on steroids, haven't been sleeping well, and nervous about the awful storms in our area...and I just have to let it rip. And yes...I am irritated, like you!

What makes me NUTS is to hear someone say, "But you don't look sick." Or worse..."You need to get some..." and they start prescribing "all natural" treatments, or they know someone who has it and tell me he or she "is just fine." So, then I wonder...what are they saying...do they think I am faking or a "big baby?"

I know these people are well-intentioned. I just don't want to give them the reason or reasons I can't do what they recommend or tell them HOW BAD I REALLY FEEL! In the beginning, I listened to everyone tell me what I should do. Now, I completely avoid people who ask me questions in front of others or start "playing doctor." Sometimes I want to ask these people where they went to medical school.

Here's hoping your tomorrow is MUCH, MUCH better! Things have to get better, right?
05-20-2013, 07:48 PM   #5
PsychoJane
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I'm lucky enough that most people don't even know what crohn or UC is so I have to do the education on the subject. I would be pretty upset if anyone was to "minimize" what crohn can be as it can be quite suffering for anyone who has it.

The absence of cure is surely an important point and I mean, the disease is so different from one another that people surely can't assume they know what crohn is from only hearing one story. The worst I've seen was someone tell me that they were surprised crohn could be as bad as I described it since they had known one person with probably mild crohn. Thankfully (well this statement is actually ironical) Canada has the highest rates in IBD so it's not rare to meet someone who goes more like: "Ohhhh :S. That's unfortunate". I don't like pity, but people seems to understand.

I guess all of us become ambassador for the disease and have to help others make their education about these kind of disease. It's not easy for healthy folks to really understand everything that comes with it. Generalizing, people tend to believe that chemotherapy only exist for cancer and that other disease must be help with simple therapies and not be that bad. I mean, arthritis was once just a disease that could be helped with acetaminophen and cortisone injection. Once it was only for elder in my mind too...

But don't worry, I really understand your feeling from the times I've fought to get my accommodations and times where employers would pretend to understand but were actually totally off the track....

Stay strong and do what you can to help raising awareness when the situation allow it!
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05-20-2013, 08:49 PM   #6
saddad
 
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I am sorry you had a bad day, more sorry you have this awful disease. It is very difficult to deal with, and I understand your frustration. I am the father of a 13 year old girl (tough as leather) who has Crohn's. I constantly remind myself that prayer and medicine will pull us through this. I wish I could trade places with her for she has all her life to push through without the burden of the issues with Crohn's, into High school, college, and then a carreer and her own family. When I start feeling down I remind myself that things are always more difficult somewhere else. You do not have to look to far to see it around you. Keep the faith, say your prayers and push on as strong as you can.
05-20-2013, 09:25 PM   #7
lblair
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I think that today just must be one of them days because I'm also having a hard day. Trying to decide why I have to start a food diary to see if I can figure it out because the stomach ache today and the cramps just about did me in. Newly Dx with Crohn's and a Gluten allergy to top it off!!!! I have only been on the new med for 3 weeks so far and steriods start at 40 mg down to 25mg so far!!!!!

I'm told that we will have many good days and many bad days!!!! Hang in there sending Pray and positive thoughts your way!!!

Lisa
05-20-2013, 11:20 PM   #8
kikidee1994
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I have days like this and I get so irriteted and angry when people say to me it could be worse , because I no it could but hearing that doesn't make me feel any better if any think it makes me feel worse Cruz I'm like I no you deal with what I have for one week you wouldn't last a day !!
I think sometimes people are just ignorant and until they them self's get poorly they will never really understand what it is truly like.
And in think when people go you don't look poorly I just want to slap them up the face with a fish !
Sometimes I feel if only people could see what going on in side us on the outside they just don't get it !
Hope your day will get better
05-20-2013, 11:31 PM   #9
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Oh, I know what you mean. When I was first sick, I was overweight. And someone said to me "at least you lost that extra weight, now you look great". Uh, I'd rather be obese and not feel sick all the time.

The other thing that really annoys me is when I explain I have IBD, and they think that it is the same as IBS, and they go on to tell me about someone they know who switched to a vegan diet/ate 6 servings of vegetables a day/etc. and now she's "cured"
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05-21-2013, 02:04 AM   #10
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Hi there,
I too have suffered those who are quick to tell me 'How well I look and they know someone else with Crohns , and there is nothing much wrong with them!!!!' I call them amateur doctors!!! I usually just say I am fine. I dropped those who were not supportive and moved on from there. I cherish my few close friends who understand and empathize. I am off this morning to have my Infliximab infusion in hospital. I am also now on steroids too! So I am not fine!!! I hope you feel better soon: it is alright to moan sometimes. We are all human. Enjoy your day.
05-21-2013, 03:05 AM   #11
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Many forms of cancer are very curable, yet had my son been given a diagnosis of one of them, I doubt the first thing out of someone's mouth would have been, "You must be relieved to have a diagnosis." Which is what was said to me just days after my son was home from the hospital.

No, I don't feel relieved to have a diagnosis of Crohn's disease.

Another person told me that I couldn't let Crohn's rule our entire lives. This was said approximately 6 weeks after diagnosis. Excuse me?!

Unfortunately, most people are ignorant about chronic illness and really can't empathize.
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05-21-2013, 05:09 AM   #12
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Well I certainly know how you feel. I have had Crohns now some 30 years (diagnosed at 19) and I have had periods of wellness and then had massive flareups, obstructions, fistulas, hospital stays more medication and then well again and then it goes on like a rollercoaster. I know my poor husband suffers as I am sometimes so depressed, angry and in tears, because simply no-one understands what it is like except those who have experienced Crohns. And yes I look reasonably well, even though sometimes I am in so much pain I can hardly sit down! I am presently contemplating having an operation and a permanent stoma and I am terrified but as I have had way too many flareups of late I think it has affected my quality of life. I just need to summon up the courage and have it done.
05-21-2013, 05:22 AM   #13
xxjemmamxx
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You've completely summed up how I feel! It's been about 6 months since my diagnosis and I feel so down about it. The only person that validates my illness or understands (apart from my husband) is my IBD nurse. I don't bother talking about it to anyone anymore.

It's either 'but you look better' - (I don't feel better)

'I know so-and-so who has Crohn's and they're fine, so you'll be ok' - Hmmm.

People that also think that I'm fussy with food and think I'm being difficult. People that think I'm now 100% back to normal and that Crohn's had disappeared after surgery. People who have IBS that think it is the same thing. People who think I'm 'boring' because I don't drink alcohol anymore.

Sometimes I wish I could give some people a day of living with Crohn's so that they never underestimate it again.
05-21-2013, 05:34 AM   #14
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Do you people also feel that 'they' treat it like you got the flu or something ?! I mean the sense of "well ok dont take it too hard", "watch some tv", that kind of stuff ?
05-21-2013, 07:35 AM   #15
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It annoys me sometimes. When I first got ill, I was so embarrassed and disgusted with the symptoms. Wind, diarrhoea, my stomach gurgling so loud everyone could hear. I was in such a state. I said to my dad that I wished I had another disease that was not so taboo, not so embarrassing. My dad got angry and said I should be grateful I didn't have something life-threatening.

I do get the point - there are worse illnesses to have, but coming to terms with having an out-of-control digestive system (and at that time with no diagnosis and so no treatment) when I was a teenager, it was a major adjustment for me when I'd always taken for granted that my life would be free from being humiliated by my body.

The perception of digestive dysfunction as either something disgusting, or as the source for bathroom humour jokes, means people with Crohn's and other digestive illnesses have to face a unique set of problems.

I know it's not terminal, and I know it doesn't cause the severe disability of illnesses such as MS, but those of us with Crohn's can have a really hard time.
05-22-2013, 08:00 AM   #16
nitty
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I've only had two people that have made me cross so far.

The first one was someone who really should know better as she has had bad CD for years! But it didn't stop her from trying to dictate to me that I must absolutely cut out certain things from my diet and that I must do this/that/the other because that's what she has to do. Surely, of all people, she should know that we are all different.

Then, when I was talking to friends at college about my flare which I was just recovering from, and the treatment that I was on which had helped me, I was met with a discussion about the evils of drug manufacturers and how you shouldn't take medicines because they mess up your body and blah, blah, blah!

I quietly explained that it was all very well having that opinion when you're well (and I don't entirely reject that idea myself to some extent), but that soon changes when you're in the position of being so ill that you can't eat properly, you can't go out of the house because of constant diarrhoea which causes excruciating pain and embarrassment, the weakness and fatigue it causes, the emotional stress, and all while looking after two children. I had always resisted stepping up my medications until that point, but I was practically begging for whatever drugs they could throw at me in the end!

They soon got down off their high horses after that.
05-23-2013, 05:37 AM   #17
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I've only had two people that have made me cross so far.

The first one was someone who really should know better as she has had bad CD for years! But it didn't stop her from trying to dictate to me that I must absolutely cut out certain things from my diet and that I must do this/that/the other because that's what she has to do. Surely, of all people, she should know that we are all different.

Then, when I was talking to friends at college about my flare which I was just recovering from, and the treatment that I was on which had helped me, I was met with a discussion about the evils of drug manufacturers and how you shouldn't take medicines because they mess up your body and blah, blah, blah!

I quietly explained that it was all very well having that opinion when you're well (and I don't entirely reject that idea myself to some extent), but that soon changes when you're in the position of being so ill that you can't eat properly, you can't go out of the house because of constant diarrhoea which causes excruciating pain and embarrassment, the weakness and fatigue it causes, the emotional stress, and all while looking after two children. I had always resisted stepping up my medications until that point, but I was practically begging for whatever drugs they could throw at me in the end!

They soon got down off their high horses after that.
Talking of people who should know better, a nurse who weighed me before an appointment with a gastroenterologist told me how "lucky" I was to be so thin. You'd have thought she could have put two and two together and worked out that constant diarrhoea is not a "lucky" thing to have, even if it does make you thinner.

Then I had a gastroenterologist who criticised me for having had surgery because it isn't "natural". Nature gave me a horrible disease - doing things the natural way isn't always best, and if he knew anything about Crohn's you'd think he'd know that it can get bad enough to warrant surgery! This gastroenterologist is the second most offensive person I've ever met.
05-23-2013, 04:46 PM   #18
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Ughhh people can be so thoughtless.
A lady at work who I don't know too well saw me after id been off for 6 weeks on high dose of pred... 3 stone heavier...and literally double took at me and said sooo loud OMG I DIDN'T RECOGNISE YOU WHAT IS WRONG WITH YOU?! i quite literally could have punched her.
Now i no longer have moon face and extra padding shes all like ooooh you look so well do u feel it.. i say no .. she says oooh well at least you look better.

Is this bitch for real loool
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Last edited by xSophiexx; 05-23-2013 at 04:47 PM. Reason: typo
05-23-2013, 05:04 PM   #19
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It does seem to be really difficult to explain to people that this disease is not caused by poor diet. I think people assume because it isn't a heart, lung or liver problem that isn't that serious. They forget that your intestine is what is providing all those other organs with the nutrients they need to run properly.

I usually try to use car metaphors
Would your car's engine run properly if the oil tank was leaking? I don't think so!

To-day I had my 3rd shift at a new job and had to excuse myself twice to go and throw up. I threw up and then went straight back to work.

How many people do you know that take days off for mere common colds? I want to smack people like about the head and tell them they don't know what sick is!
05-23-2013, 05:14 PM   #20
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Many forms of cancer are very curable, yet had my son been given a diagnosis of one of them, I doubt the first thing out of someone's mouth would have been, "You must be relieved to have a diagnosis." Which is what was said to me just days after my son was home from the hospital.

No, I don't feel relieved to have a diagnosis of Crohn's disease.

Another person told me that I couldn't let Crohn's rule our entire lives. This was said approximately 6 weeks after diagnosis. Excuse me?!

Unfortunately, most people are ignorant about chronic illness and really can't empathize.
Thanks Amy for bringing this up. I've wanted to bring up cancer for a while now but I was afraid people might think badly of me. Cancer is of course a dreadful disease that takes peoples lives and ruins families. I wouldn't wish it on anyone. But the point is some Cancer can be cured and once it is gone most people never get it back again. Crohns is a life sentence of suffering and complications...like the possible hysterectomyI might be facing before my 26th birthday. But no-one would ever consider that this might be worse. I have considered it and sometimes I think crohns might just be a little bit crueller...
05-23-2013, 06:10 PM   #21
ryansbronco
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Thanks Amy for bringing this up. I've wanted to bring up cancer for a while now but I was afraid people might think badly of me. Cancer is of course a dreadful disease that takes peoples lives and ruins families. I wouldn't wish it on anyone. But the point is some Cancer can be cured and once it is gone most people never get it back again. Crohns is a life sentence of suffering and complications...like the possible hysterectomyI might be facing before my 26th birthday. But no-one would ever consider that this might be worse. I have considered it and sometimes I think crohns might just be a little bit crueller...
spot on steffers
most of the medical staff I deal with seem to go quite or change subject when they hear crohns. Ive been on the cancer ward before and they have the nicest nurses there.....and a milkshake machine. One thing I can assume that a cancer patient and a crohns patient has is a fight to be better
05-24-2013, 07:40 AM   #22
nitty
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Ditto!

When I got my diagnosis I was so relieved that it wasn't bowel cancer, until my husband pointed out "At least you can cure bowel cancer". I think he just wanted me to take it seriously and expressed his own anxiety about it.
05-24-2013, 07:54 AM   #23
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Thanks Amy for bringing this up. I've wanted to bring up cancer for a while now but I was afraid people might think badly of me. Cancer is of course a dreadful disease that takes peoples lives and ruins families. I wouldn't wish it on anyone. But the point is some Cancer can be cured and once it is gone most people never get it back again. Crohns is a life sentence of suffering and complications...like the possible hysterectomyI might be facing before my 26th birthday. But no-one would ever consider that this might be worse. I have considered it and sometimes I think crohns might just be a little bit crueller...
I have a friend who has said on a number of occasions said that they wished it was cancer for the very same reason you mention, this disease has an awful lot to answer for and when people don't understand it's infuriating! People understand the seriousness of cancer....why can't they do the same for chronic conditions too. I've had diabetes for 17 years and then Crohns arrived last Dec, my older sister and father haven't a clue what that means for me and also my wee sister who has diabetes and UC and I don't believe that they even want to. Ignorance of people drives me mad!!
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05-25-2013, 07:29 AM   #24
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Thanks Amy for bringing this up. I've wanted to bring up cancer for a while now but I was afraid people might think badly of me. Cancer is of course a dreadful disease that takes peoples lives and ruins families. I wouldn't wish it on anyone. But the point is some Cancer can be cured and once it is gone most people never get it back again. Crohns is a life sentence of suffering and complications...like the possible hysterectomyI might be facing before my 26th birthday. But no-one would ever consider that this might be worse. I have considered it and sometimes I think crohns might just be a little bit crueller...
I think the difficulty is that both Crohn's and cancer and many other illnesses have huge variations in how they affect people. A mild case of Crohn's or one that's easily kept in remission is of course far preferable to terminal cancer, but a severe case of Crohn's is probably worse than a cancer that's cured. The problem is that illnesses become associated with certain meanings, and people who haven't dealt with an illness personally often don't have an understanding of it that goes beyond the stereotype.

This makes it difficult if you have an unusual presentation of an illness, though it is easy to see why people make such assumptions. I expect that to some degree we are all influenced by the public images of illnesses, as that's really the only information we have to go on until we experience an illness for ourselves or see its effects on someone close to us.

I suppose the best thing to do, whenever someone divulges to you that they have an illness you have no personal experience of, is to try and learn from them what they are experiencing before expressing any opinions of your own. It could also be useful if those in the media, charities, etc. make sure to show the scales of severity and variations that a particular illness can produce so that its public image is not too simple or stereotyped.
05-25-2013, 09:08 AM   #25
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I am right there with all of you. I have Diabetes, MS and Crohn's unfortunately. I am in constant pain of some sort and still work and try to raise and take care of my family when all I feel like doing is crawling under the covers and sleeping the pain away. I really hate when people make the comments "Well you don't look sick, you are looking great" or " you need to get un sick, you have a family to take care of" Um, don't you think I/We know that. Drives me crazy and makes me want to not say anything to anyone on how I am feeling or what is going on.

I really think because we are not hooked up to IV's or have tubes or are in a wheelchair that people don't understand it. I know that is one of my mother's issues is that YES, she knows that I have all these illness but because she can't physically see it like she can with my brother (whom also has MS) that is in a wheel chair.

So to go on about things but I do find this helps me to have found this forum and there is another site out there. www.butyoudontlooksick.com I think there is an interesting theory on the website. it is more about lupus but I think anyone with a chronic illness can understand it. The theory is called the Spoon Theory. I read it and sometimes it's away to sit someone down and explain who a normal day or a bad day is for us. Just a thought anyhow.

We all need to stick together and hang in
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05-25-2013, 01:55 PM   #26
Everly
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Thank you all for replying and venting away with me and giving me support. I really appreciate it. Just belonging to a group that understands what I'm going through makes me feel a million times better.

So thank you all, and continue to hang in there and be strong!! Because we're all fighters!
05-25-2013, 04:48 PM   #27
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it does make it easier to have people that understand what we go through daily. my best friend has a chronic illness as well but not Crohn's but we can relate to one another. Its really hard when your family knows what is going on but cannot understand it since they don't see it and constantly make remarks
05-25-2013, 05:13 PM   #28
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I heard a new one today...I was asked by a family memeber today...y are u so tired u aint done anything all day...I had to remind her that I've been in constant pain for 3 weeks, while working and looking after my children, plus been on Tramadol for a week so wasn't quite with it. I'm so glad I found this forum, I felt very much alone before I joined, also felt like I was slowly losing my mind. Thank u all for venting and sharing your stories xxx sending my hugs to everyone who is going throu this awful illness
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