Is it a shame to have Crohn's?

[sibelius]

Do you feel at all embarrassed or ashamed that you have Crohn's, or that other people might know you have Crohn's?

I don't feel embarrassed at all, and I have casually told some of my friends/family, even about some of the details of treatment, symptoms, etc. To paraphrase Tevye the Dairyman, "It's no shame to have Crohn's! But it's no great honor either..."

At the same time, I also don't like being at the center of a pity party, which is why I chose not to tell a lot of people when I was first diagnosed (although it was tempting!). I still don't tell everyone I know, because I don't think everyone needs to know, but I don't feel at all uncomfortable telling people when it does come up in conversation.

I also understand that others aren't necessarily the same way, and are much more private than I am. I also understand that a lot of people have it much worse than I do, as Crohn's affects people in different ways and to different degrees. A month or so ago, I went to a benefit concert for Crohn's/Colitis research, and a GI spoke during the concert about how she is always so impressed by the many college crohnies who don't think of themselves as "diseased" or "afflicted"... I'm curious how widespread that is, if people just go on with their lives as if everything were normal, or if it really affects people in different ways.

Obviously if we're all here on this forum, then we've all reached a certain level of comfort already to talk with others, though under the curtains of usernames...

 

[Kev]

I used to feel great shame N embarrassment. I've slowly come around, and tho I wouldnt' brag about it, I would go to a public meeting, or walk in a fundraiser, etc.

 

[butt-eze]

I will tell anyone about my disease. I wear my Got Guts bracelets and give them to anyone who wants them. I share my story with people and get all of my friends, co-workers, and family involved in raising awareness and money.

I know others who are less vocal about their situation and respect that too. It's easier to talk about when I'm in remission. I wouldn't want to just share with someone that I left work because I had an accident, etc. This did happen a couple of years back!

I embrace the fact that I am LIVING with crohn's and will be a voice for our community until they find a cure.

 

[Jeff D.]

I tell everyone about my disease. At first I take my friends into it slowly. I tell them I have an intestinal disease and then start taking them through my symptoms. I try not to talk about my bowel movement stories until they have gotten to know me a little better or if they seem very comfortable about it. I have given lectures in high school and college about the disease and plan to keep giving them when I am able to. I write papers about it when I need to write about diseases as well. I'm going to be trying to play some open mic nights in the next few months when I get a few more songs under my belt and I'm going to spread the wod of Crohn's and IBD to everyone there. We have a disease that's easy to get embarrassed about and many people have it and don't know it because they are too embarrassed to seek treatment. I feel as if I can help one person seek treatment for this disease I would have done my job.

 

[AbstractDonut]

I'm afraid to tell people that I might work for. Other than that I'm not afraid to tell people I have it. I do have a really hard time talking about any struggles I may be having with it, or any pain it causes me.

 

[BWS1982]

Greatly depends on my mood, who I'm talking to, and also the severity of the current flare (which is almost a year old!).....And it also greatly varies what kind of details are devulged, you all know what I mean.......

It's too different for a definitive answer.

 

[Joshua_A_B]

We all have to deal with this in our own way. The same goes for people who don't have Crohn's, they have their perceptions and misconceptions. But shame has nothing to do with it... we just buy more toilet paper than everyone else!!

 

[RHOV]

I told a few friends at school when I was diagnosed (1 year ago). Now, I wish I hadn't told anyone except my one best friend. My friends never mention it, but one of them was diagnosed with rheumatoid arthritis in October, and she WOULD NOT SHUT UP about it. And I had to grit my teeth and not yell at her for being attention-seeking and annoying, but I couldn't because I had shared some of my medical problems a few months earlier, but to a much lesser degree. I didn't enjoy hearing about someone else's medical issues (especially since this girl was melodramatic and told every little detail) so I decided to be more closed about mine. I sometimes leave school early for an appointment or a Remicade, but I don't tell anyone because it leads to lots of questions ("Where are you going?" "Why?" "Doctor appointment? Are you sick?"...) and I really don't want to talk about it any more than I have to.

And before I get scolded for sounding unsympathetic for the girl with RA, I did have a lot od sympathy for her. I knew what she was going through, since I have extensive arthritis problems too. I just couldn't stand listening to her all day long wallowing in self-pity (she was!) and telling everyone everything that was going on. I think it's kind of bad taste to talk about something like that in too much detail. In some circumstances it's all right, but going on and on is not something people want to hear. Especially since I'm in high school and IBD is something that I am not comfortable discussing with others. I'm not ashamed, and I want to raise awareness, but I don't feel like I should go around parading my illness either.

It doesn't define me.

 

[Kittee]

I have it very well documented at my work. I figured that was my best protection legally if anything ever came up. Might bite me in the butt later but...

As to anyone else. I don't mind sharing. I guess I've always been an open person tho. Too open maybe.

 

[katiesue1506]

Nope... I'm not ashamed to have it. It already is debilitating enough but to let it affect my self esteem further just won't do for me.

I don't usually tell everyone unless they have a reason to know.

I won't tell employers until I'm already established at my job either. I only tell my professors if I think I'm going to have an attendance problem. Generally I try to keep it on a need-to-know basis because I don't want others thinking less of me or my work ethic. I try so hard to make the same efforts as everyone else who isn't dealing with a disease so that I'm not made special excuses. Its just more rewarding for me to realize I can be like everyone else and achieve the same things as everyone else despite my illness.

OT: anyone notice the awesomeness of Charmin toilet paper? they have it to where you can buy either "strong" or "soft"... I buy the strong one... but its still very soft. I lOVE it.

 

[Kittee]

OT: The Charmin Aloe Vera one for me. =)

 

[Jeff D.]

Oh I only buy Charmin Soft I used it when I was in college as well because the sandpaper they had just wasn't going to work out.lol

But back to telling people about my illness I personally don't try to make people pity me. I try to inform them. I let them know the signs and symptoms for their benefit or other's benefits so that if they start getting chronic d or c or intestinal pain or other symptoms that they should not be afraid of going to get help. I remember before I was diagnosed that I was too afraid to tell my parents or even my closest friends of my problems and you know what if I told them before I couldn't hold back my pain anymore and they eventually found out I may not be as sick as I am today. It's not really in my hands how sick I am now but maybe if I caught these symptoms before they got so great I wouldn't have had to spend as much money now. If you get what I'm talking about. I think everyone needs to learn about these diseases that are coming out. I know the all personally interest me and I try to learn about as many diseases and medical problems so maybe one day I can help someone get help.

 

[Guest]

i'm not ashamed of it, but i dont tell everybody my medical history. for a start, it would take around 24 hours to tell the whole story lol, but seriously i dont feel i want to go into personal details until i know someone really well, and can trust them.

this is one of the beauties of this forum - we're in the same boat here, and there is no embarrassment or indignity in sharing what we go through, and our feelings.

 

[jny1179]

I'm an open book. I tell anyone and everyone. I blog about it. I want everyone to know why I can't drink beer anymore or eat cake. I want others to be aware of their digestive system and if they're having issues to go get it checked out! Too many people are living in pain and not getting the answers they need or deserve! Sometimes it is a little embarrassing though, like for example when I had to run to the bathroom right at the beginning of kickboxing class last night and everyone knows why. But I'm ok with that. It also helps me to work through it by talking to others about it.

 

[soupdragon69]

I am very fortunate that those I work with understand some about crohns already in that they are medics etc.

Wednesday I had to come home early as I was really worried I would pass out at work and felt so rough. My boss looked at me and said "you really arent good are you" so I explained how I felt and she said "go home, I will put you here til 4pm", keep in mind it was 3.10pm. I offered to recind my overtime of 6hrs to compensate from last weekend and she said "definately not you worked overtime you get paid overtime and we count these hours as sick leave ok?"

Such a relief to have an understanding boss in comparison to my previous boss earlier this year eh?

My close friends know what I go through in a bit more detail as they help me when I am really rough by running errands etc. So yes I think its important others know and as you say Jen so others dont leave their own symptoms ignored too although hidden!

So although I have embarrassing things happen to me and I find it really difficult to cope its those around me that prop me up (when I give in and let them stubborn leprechaun that I am).

A support network is a valuable thing both here and at home.

 

[Creepy Lurker]

I was diagnosed about 10 years ago. It took over 7 to get it to go into remission. People notice. After a while, I became desensitised to talking about bodily functions and medical procedures. These days, I have to carefully gauge people reactions so I know when to stop.

Sometimes it's fun to go *really* in depth. 'Specially to people I'll never see again.

 

[Jeff D.]

Hey Jan that's awesome. Your boss seems like a really great person.

Creepy I do the same thing. I sometimes like to watch peoples reactions to talk about my butt and the things that come out of it. I talk about the different shapes and colors and how they are related to my food. It's really pretty funny when you watch their jaws drop in disbelief.

 

[drew_wymore]

I've never been ashamed of the fact that I have CD. I think like most of us I understand I did nothing to get this disease, it just happened. I try to be a person living with Crohns, rather then someone who just has Crohns and thats their defining characteristic, although during flares it feels like the disease does rule my life.

I try and educate myself, and others if they ask about the disease, its symptoms and what I do on a daily basis to try and make the best of it and try and keep myself healthy. If they show interest I show them a photo time line of what the disease did to my outward physical appearance since its hard to understand a disease when you don't necessarily show many outward signs of being sick like other diseases have. Most people who see the photos are pretty amazed at what can happen in such a very short period of time with the weight loss and such.

I'll stop now I'm rambling =p

 

[FruitLoop]

I am not ashamed of having it but I do often feel the need to explain it to people in more detail than I should mainly due to the sheer amount of people who think it is IBS.

If anyone else tells me "oh yes i have IBS, I know how you feel" I may well slap them.

I am sure IBS is not nice BUT it's is like comparing a grazed knee to half cutting your leg off isn't it ?

Sorry if that sounds nasty but it is my pet bug bear.

 

[Guest]

i know what you mean Clare - i think there is a tendency these days for people to moan they have IBS, when in fact they just have occasional constipation or diarrhea. true IBS at its worst is really horrible - i've seen my mother deteriorate to the point where she announced "thats it - i'm not going to eat any more" - that was when i marched her off to A&E and started the ball rolling towards getting a specialist and treatment for her. she's come a long way since then, but genuine IBS is not pleasant to live with at all. different from Crohns tho, i agree.

 

[Kittee]

I am not ashamed of having it but I do often feel the need to explain it to people in more detail than I should mainly due to the sheer amount of people who think it is IBS.

If anyone else tells me "oh yes i have IBS, I know how you feel" I may well slap them.

I am sure IBS is not nice BUT it's is like comparing a grazed knee to half cutting your leg off isn't it ?

Sorry if that sounds nasty but it is my pet bug bear.

I totally agree.

I hate that glazed look people give me when they seem to think all I have is a "tummy ache!"

 

[BWS1982]

Yes, I have to concur comletely with all the sentiments on IBS vs. IBD, I hate being thrown into the same category or having people think I'm just sick with a touch of diarrhea. No normal individuals have bathroom issues like Crohns usually, especially for 9 months running (no pun). It's almost like it's not diarrhea, with your body convulsing and getting nauseaus and stabbing pains 16 times a day (at my worst), and not a medicine in the world was able to help.

 

[Kev]

It is my understanding that the diet of someone with IBS is far stricter than for IBD

I mean, those of us with IBD have some 'trigger' foods, then we have some we're advised to avoid or limit (for those who drs believe diet is relevant to treat IBD).

But, for folks with IBS, the list of trigger foods can just go on N on, even grow over time. Mind you, they may not have an inflammatory condition in the GI tract to contend with, fissures, fistulas, narrowings.. but the wear N tear on their colon, ailmentary canal, etc., can N does cause damage over the years.

I know it's sort of comparing apples N oranges, but I don't think any of us with IBD are the type to feel it is 'superior' to IBS. Face it, tho both are different, its apparent both are a pain in the proverbial... well, we all know where. I think anyone with IBS should feel welcome here; and I don't think my peers here would disagree..

 

[katiesue1506]

Well I can agree with both sides. I do get angry at the people who don't understand Crohn's and think that all I deal with is having to go to the bathroom a little bit more than normal people, and feeling a little tummy ache once in a while. BUT I have a neighbor who is diagnosed with IBS, they don't really know what's wrong with him and he has it WAY worse than I. He can't eat hardly anything, and has lost a TON of weight. He just can't seem to find any comfort because nothing is working for him. He's had the pill cam, colonoscopies, endoscopies and everything and can't find solace. He was taking Protonix for a while, but it didn't really ever work. I just feel awful for him because I feel like I'm waving a million bucks in front of his face ... like I'm the one with the disease, but I can find some relief... he just has a syndrome but is in worse pain and is completely lost in all treatment aspects.

I dunno... I just really don't know how to help him, and I'd really like to.

 

[BWS1982]

Yes Kev, not to try to undermine or trivialize IBS, I realize it can be harsh. I think in reality it comes to who the subject in question is, there's mild Crohns Vs. Severe IBS, and vice versa...Any with IBS are welcome here, as well as any other well-intentioned or curious individuals. I was simply trying to convey my frustrations for people misunderstanding my affliction because I "look fine" and ESPECIALLY because they say that actually I "look good" when I lose a bunch of weight from either of my flares. They find out it's intestinally related, and then picture themselves when they had a bad serving of Applebees last month and got the runs for a day and a half, and try to patronize me. I realize it's practically impossible to "get it" and understand unless you have it though, so we (I) can't really fault them.

 

[Guest]

katiesue - i can only speak from experience, and dont know if this will help your neighbour.. i think it was a collection of things which brought my mother back to relative health, after IBS took her so far down i was actually scared for her.. you know?

anyway, she saw a specialist, and had some tests. the reassurance that it wasn't anything too serious was a milestone in itself - she was convinced it was bowel cancer. she was given Colofac for the spasms, and meal replacement drinks while she couldn't eat (lost weight at a frightening speed up till that point), also she takes something for acid reflux. i started doing abdo massages on her, and she carried this on herself - it really helped soothe and regulate the bowel. gradually she introduced proper food back into her diet, with many setbacks - each time learning what she could not tolerate. now, she has regained the weight, looks tons better, and hardly suffers from pain/bloating etc. she is very strict with her diet, will not eat chocolate, fried foods, spicy or acidic foods, and avoids coffee.

i hope this is useful.

 

[katiesue1506]

Well I forgot to mention that he did have colon cancer... but it was removed and so now he's all fine in that department, but still having horrible symptoms. Is Colofac like Bentyl (an antispasmodic)? And you said abdominal massages helped? I'm almost sure his diet isn't that good because he spends a lot of time driving due to his job and frequently stops somewhere to pick up a sandwich at a fast food restaurant or eats gas station food. He drinks a lot of coffee and fried foods are his friend. I also know he used to be big into brewing his own beers.

 

[Guest]

yes, Katiesue, Colofac is an antispasmodic, if i'm not mistaken the active ingredient is Mebeverine, which sounds as if it may be the same as Bentyl.

i think many IBS sufferers experience spasms and unusual bowel activity, and the antispasmodic and abdo massage help with this particular symptom.

its difficult enough trying to follow a restricted diet, but i can imagine it must be even harder when your job takes you on the road. still, if he does have IBS, i'd recommend he tries to avoid the fried food & coffee for a little while, and see if he notices any improvement.

 

[Digits]

I was only 8 wheni was diagnosed, so my mom took it upon herself to tell everyone...after my temp ileostomy was placed, she took it upon herself to have the school nurse get my whole class togteher and explain it all to them when i was in 7th grade...

and then last year i started working and my mom knows my supervisor. i hadnt told anyone, not because im shy, but because i was afraid to get special treatment. next thing you know, my sup. is calling me, asking if im getting all my nutrients, shifting my schedule to less demanding group homes, etc. i appreciated ti when i had a bad health scare a bit ago...but ive talked with my mom about it and she still does it at times...gah!

but i tell too many people too much detail... i like seeing people squirm, especially mean people.

 

[drew_wymore]

I was only 8 wheni was diagnosed, so my mom took it upon herself to tell everyone...after my temp ileostomy was placed, she took it upon herself to have the school nurse get my whole class togteher and explain it all to them when i was in 7th grade...

and then last year i started working and my mom knows my supervisor. i hadnt told anyone, not because im shy, but because i was afraid to get special treatment. next thing you know, my sup. is calling me, asking if im getting all my nutrients, shifting my schedule to less demanding group homes, etc. i appreciated ti when i had a bad health scare a bit ago...but ive talked with my mom about it and she still does it at times...gah!

but i tell too many people too much detail... i like seeing people squirm, especially mean people.

Haha Digits my mom does the same thing. We'll be out buying groceries or something and all of the sudden the checker knows I'm sick .. I get that whiney 5 year old voice and just go "moooooooooom stoooooop"

 

[Guest]

Haha Digits my mom does the same thing. We'll be out buying groceries or something and all of the sudden the checker knows I'm sick .. I get that whiney 5 year old voice and just go "moooooooooom stoooooop"

lol drew

this reminds me of an elderly lady pharmacist i used to go to for all my prescription items - she was very sweet but had absolutely no tact whatsoever, and it was quite normal for her to call out instructions to customers in front of a packed shop, on how to insert things, or where to apply creams, or ask what size condoms a customer required....

was quite entertaining lol

 

[pb4]

This may be hard for alot of you to believe but there are some IBSers that suffer with their symptoms alot worse then say a mild case of crohn's or UC...I have both crohn's and IBS and luckily the same types of things that I take help with both, mostly being enough fibre daily AND probiotics daily.

I know people with IBS only and imagine how you'd feel if you didn't have a bowel movement in well over a month, it's not a walk in the park and I wouldn't trade crohn's for that.

Symtpom wise the 2 can be very similar the only major differences are the meds (with some exceptions like anti-spas meds) and there is no inflammation or the need for surgery or bleeding with IBS *with the exception of hemheroides* BUT, the symptoms can be very similar to one another and symptom wise I'd rather be a mild crohnie then a severe IBSer anyday even with the differences between the 2 like having to have surgery which in my 17 yrs straight so far of having crohn's with no full remission I've still been able to avoid surgery.

 

[AbstractDonut]

I do not think IBS is anywhere near the league of IBD. Though I do not have IBS I know someone that does and I have often seem him uncomfortable because of IBS. On the other hand he hasn't made 3 unscheduled visits to the hospital as I have.

There have been many days I've wished it was IBS I had instead of IBD.

 

[BWS1982]

The fact remains that between the two, Crohns is regarded as a more severe affliction in general. Sure you could create a case by case comparison and find a milder Crohnnie and all, and I feel for IBS'ers as I sure as hell know what they're going through (unless it's constipation)...Both are terrible issues to have.

Not to have a pissing contest about who suffers more, but I would rather have taken a chance by having a random case of IBS than IBD before the onset of getting one or the other.

Syndrome Vs. Disease, Irritable Vs. Inflammatory....do you see some common, contrasting nomenclature?

 

[Joshua_A_B]

To agree with Benson inflammation if untreated ultimately will become irreversible and the intestines will shut down and have to be removed. Anytime surgery is involved then the playing field changes. Surgery adds its own complications and side effects. Having said that anyone suffering from either is welcomed here! Maybe IBS sufferers can held IBD sufferers and vice versa. We're here to help each other!!

 

[Kev]

I agree wholeheartedly. A contest to determine which is worse is a no win prop.. There are nasty aspects of both.. and there are other far worse diseases out there. I believe this community should strive to be welcoming N supportive of all. Lord knows there is less than ideal support outside the forum for these illnesses.

 

[pb4]

I'm well aware IBD is worse and I certainly never said different, but I was comparing how crappy an IBSer can feel with their IBS as being just as bad and for some even worse than say a mild CD or UCer even...

BTW, I have both, I've had CD for 17 yrs straight now affecting my colon the entire time with no remission what so ever (and my bowels have not shut down as a result of this) and then 5 yrs ago I was DX with also having IBS...I know my crohn's is worse than my IBS but they do BOTH suck and anyone that has either should be equally sympathized with is the point I was trying to make...like I said there are plenty of IBSers that FEEL worse compared to a mild IBDer...and I still wouldn't trade crohn's for IBS that has you constipated for over a month of absolutely no bowel movement...can you imagine how horrible that would feel...I can, not that I've personally experianced it but I guess with having CD for so long now it's easy for me to empathyze with anyone that has any kind of bowel issues.

 

[ericajones80]

it's a matter of education I think. The more people that know about these bowel afflictions, the more it will become understood. People aren't ashamed to have cancer or anything like that because there is widespread understanding.

 

[BWS1982]

Much of any "shame" stems from the dumb stigma that society has on bowel issues, it's not "proper" to speak about sh*t and all it's happenings and quirks and sounds and odors, even if you make it 'G' rated and formal.

 

[Guest]

i think there are two health issues that are often considered a no-no in conversation, and certainly seem to be the two which, unless someone has personal experience with, are misunderstood and joked about. bowel issues being one, mental health problems being the other.

but, it is encouraging to see in our lifetime now, people opening up, talking about their feelings & experiences - like here in this forum. sometimes i don't think we stop and consider just how important this type of sharing is - not only does it help the individual, it helps other sufferers, and it educates people 'out there'.

imagine how it would feel to have IBD back in the 1940's, say. i doubt if even married couples back then felt it was appropriate to talk in such depth about bodily matters as we do today. thank goodness we're living in the day & age we are!

 

[pb4]

I totally agree with you Mike, it's bad enough there are plenty of illnesses out there that lead to death but to have an illness like IBD/IBS that keeps you from living is a shame in itself.

Many of us look healthy and that makes it even harder for society to accept the fact that our illness truly interferes in every aspect of our lives and there's shame in that as well.

We battle this disease day in and day out and until a cure is found that's the way it's going to be, we are true survivors.

 

[Aenea01]

Chrons & IBS

Folks,

My diagnosis is Chrons with IBS. Yep, I have the pleasure of both IBD with IBS.....

The funny thing is that after dealing with both for a number of years - there really is a difference between them. I can tell when my Chrons is causing something and when its just IBS. Neither are very much fun to deal with, and it's given me a bit more patience when dealing with someone with just IBS. Their sypmtoms can be really similiar - and my heart goes out to anyone who has to go through this much shit (ha ha) just to eat a bit of food.

My favorite phrase these days - this too shall pass, one way or the other.

 

[milesrlv]

Since diagnosis I now have a new appreciation for any person in pain of any kind. Living with pain whether physical or mental is horrible. Having a disease causes many changes and sometimes restrictions in peoples lives and cause physical as well as emotional pain.