Just a question as to how you other Crohn's or Colitis sufferers deal with other peoples ignorance ? Do you have the patience to correct their information lack, ignore, or simply get angry ? Or can your reaction be any of the above depending on the mood you are in at the time ?
I fall into the later category, and seesaw in my reaction to peoples ignorance depending on who they are, and how blatant their ignorance is. The one that takes the cake is my MIL who recently told me DS (16, Crohn's diagnosis Dec 2010) needed to "Get a bag and get on with it......." Can you believe that ? And this is "family" ??? WTF WWYD ?

It used to be all of the above depending on what mood you caught me in LOL But now mostly I either correct them or if I know that they are just plain ignorant I ignore - The stress is not worth it IMO
Ive come to realise that most people just CANNOT fathom what a Crohns/Colitis sufferer goes through on a daily basis when flaring especially so unless someone genuinely asks or wants to know something then I just let it slide.

Its def hard when its family - I myself had a close family member say that upon diagnosis that my Crohns was 'All in my head' it was hurtful more than anything that they couldnt care enough about my well being to try to understand if even a little.

In your situation its a bit different as its your 'Mumma Bear' coming out in defence of your son - which I can TOTALLY understand. In *most* situations unless they genuinely want to know/learn about your sons condition/prognosis etc and take it on board then I would just ignore. Your MIL on the other hand, sorry but I would have found that HARD to ignore and would have LOVED to have given her a serve ...Its her own Grandson and she would wish a bag on him??! People like THAT, for your own sanity, you just have to ignore as I dont think education will help in the slightest...Its abit like
Im sorry for you and your son that her support is not forthcoming

Believe you me I did not let THAT one slide - a serve indeed is what she got ! The ignorance has continued though....other people at the retirement village where she lives are apparently a more reliable source of information than we are...And she seemed totally ignorant of how devastating it was for DS to be marked up for a bag prior to surgery - she seems to have it in her head that in every instance a colostomy bag can be reversed....I have tried to explain the instances when it can, and when it can't, but the eyes just glaze over and she's off on another tangent...Phew...don't get me started. Frustrating doesn't even begin to explain it...(hence my rave on "What sort of MIL will you be?" Lessons to learn about what sort NOT to be) As you quite rightly point out, no one knows how devastating Crohn's is, and it doesn't begin or end definitively with or without a bag !

In general now I do try to take a deep breath and gently correct the information for the sake of educating and saving others from my frustration.Thanks for sharing.

Good on you!! How freakin frustrating!! I would have given her a serve too TBH and probably had to have some space for a bit for fear of having another go and I would have told her so too.
Im not sure how you cant understand how devastating it is for ANYONE to have to go on a bag, LET ALONE a 16 yr old boy!!! Crikey!
As bloody unfair and infuriating as it is, It sounds like a no win situation where your MIL is concerned. Which is just so bloody sad. If family cant understand & support us then who?

I think your last paragraph says it all - Just keep on educating and saving yourself, and your son from any undue stress.

As an aisde - Im pleased to see on the other thread that his op was indeed a success and hes doing better than he was

Hi Camom

I can totally relate to the ignorance of others and yes especially from family members!
My son was diagnosed at 10 and the comments we had over the years were ridiculous. He looks fine, whats your problem? Why can't he do PE? Gosh he's small isn't he? Why is he so fat? Why is he so skinny? Why won't he eat his tea? He needs a good smack. Tell him to pull his head in. Just get him a bag then, so and so has one and they live a normal life.
I have snapped many a time, usually at family members. The difference with their stories of "someone they know" is that usually the person is much older, has had a normal childhood,married, often had kids etc. My son has stunted growth, skin issues, the dreaded prednisone issues of bloat, sore joints, nausea from medication, very low iron, fatigue, stamina and endurance issues and all while trying not to be different at school! "Normal life" it is not.
The biggest offenders of ignorance have unfortunately been his teachers. I guess because he doesn't have a physical disability that everyone can see, people assume he's being "precious".
We've been very lucky to have had very supportive Paed doctors and nurses, and a few supportive people around us. They're the ones that will help get you through the bad moments. And of course this site too!
I'm really glad your boy is feeling better.

I can relate as well esp with the family. My husband was diagnosed with Crohns 6 years ago. When he is on prendisone he gains weight but generally he is around 62-65kg and is 6"1'. His step mother is always saying he should go live with her and she will fatten him up (which makes me feel great as well - as if she is implying that I can't look after him!) or he just needs to eat more.
Its also frustrating when you get the 'I know someone who has it' stories and they expect everyones journey to be the same - the they are one this med or had that surgery why don't you get that.

Thanks NicolaS..Yep, can totally relate...My cousin, my neighbour ra-de-ra-de-ra....
It was great for Ian Ferguson's son to appear on Close Up a few weeks back as awareness for(Crohn's)/Men's Health Week.....but even then it spurned some further mis-conceptions. For example : Because he has found he is better off gluten free...the assumption is EVERYONE with Crohn's should be gluten free (My DS has been tested for celiac disease and is NOT gluten intolerant) He is back on the water rowing having had his colon removed - isn't that marvellous ? Yes it is wonderful to see an active athletic man re-engaging with his life, of course ! You do realise that means he has a colostomy bag ? No, "they didn't mention that on television....are you sure ?" Well, duh ...If he has no colon, where does the waste go...think about it.....Breathe...breathe

I didnt see that thing on Ian Fergusons son Camon - I wonder if its still on demand. It doesnt sound like it was covered very well

My one mantra when dealing with people who just dont know and fire out the "My sisters freinds yaddah yaddah has it and..." Is that EVERYONES disease is different as different parts of the body are affected and as meds are trial and error for each person no 2 peoples experience is the same. If they still dont get it then I admit defeat and try not to get worked up.....you know

I too was like your husband NicolaS at my worst I was 45 Kgs at my heaviest 65 Kg - The comments really ARE NOT helpful. I dont know why its so hard to understand that if your bowel is ulcerated etc than you cannot absorb nutrients etc there for you are malnourished and get sick. Also that you HAVE to eat and that food passing thru an ulcerated bowel is obviously gonna hurt like a bugger and make you sick/cause you pain also - Its not rocket science people!! {vent vent}
Sorry but it really does get to me when people dont have any idea but think they do

Everyone has an opinion on it hey, or knows someone that knows someone that makes them an expert - I just wosh there were better advocates for the disease out there

Hay Roscoe (and anyone else who is interested)....The Crohn's thingie re Ian Ferguson's son, Alan can still be viewed. Type in Alan Ferguson's Health Battle and it will pop up. (It has been removed off On Demand as it's more than a month back. Actually, it was great considering how brief. The gluten mention was honed in on by the Great Unwashed Mass of Ignoramus's who think Celiac disease and Crohn's are one and the same.. and as for the removal of the colon which was mentioned, the article chose not to state the bleeding obvious ie:- he has a colostomy bag. I would think a basic knowledge of anatomy would have joined the dots for most.....No ?....NO A little bit like the friend of ours who stated DS's surgery CAN'T have been that major because he DOESN'T have a bag Not brain surgery I grant you, but 40cms of bowel removed with an ileo-caecal resection AND removal of lymph nodes.....IGU

Hey everyone.. I can relate to this. I am currently living with my parents - Mum was diagnosed with UC in her 20s and thinks that because I seem to have inherited the disease (I'm 25, was diagnosed with UC 3 years ago), that I should follow the same treatment path as her: a gluten-free diet and homeopathic remedies.

Mum took years and years to recover - didn't like taking medications, and tried her best to convince me to not start taking azathioprine because of the risk of immune suppression etc. I debated with her for months about my decision to take meds and she kept trying to make me feel bad about it, with a lot of emotive arguing. I suffered with a 6 month flare up and was desperate, so I am thankful I decided to take the aza this year, as my disease has improved considerably. Taking immune system and iron boosting herbs seem to be assisting with general wellbeing. While I'm not 100%, I'm getting there. However, if I'd decided to take the aza sooner I probably could have been better months ago.

What annoys me is Mum's insistence that I must be gluten free because she is. I'm pretty sure I'm not but because I'm living with her at the moment I have no choice but to eat what she buys from the supermarket.. lol. If I tell her I feel unwell her questions are always around what I've eaten which is frustrating because I eat a healthy diet.

Camom - in terms of dealing with the 'ignorance' of others, if it is someone close to you then instead of being reactive, angry, and stressy (which I know I can be), I've found it helpful to sit down and have a frank discussion with the person. Unfortunately I've had to do it several times with my Mum. It's hard because I know she's trying to help, because she hates seeing me like this.

She knows this is a difficult disease to deal with and she needs to accept that everyone is different and there is no quick fix (i.e. she doesn't know best). I have chosen my own path to recovery - different to hers - and it seems to be working, slowly but surely. If she asks me how I'm feeling and I say I'm feeling like crap, I don't actually want to hear her opinion on it (because its always the same!), but her support would be nice.

Hay ahs9 - WELCOME !

It sounds as if you have made great strides, both with your UC and your ability to deal with others ignorance.

A frank discussion is always the best policy.....that is if you know the other party will LISTEN.....

Mmmmmmm. My MIL is a constant frustration. Tried the frank discussion thing. Doesn't work. Too self absorbed to REALLY listen, and seems to think that even though we are living with it (albeit through DS) it is WE who are ignorant, and nurses (note: nurses, NOT Dr's or specialists) who retired YEARS and YEARS ago, know better than we. The caeliac disease thing she would not leave alone. The (ex)nurses in the Village said a gluten free diet would make all the difference.....I am sure for some people it does. But DS has been tested and does NOT have caeliac disease, and therefore a gluten free diet makes NO difference to him.

Everyone seems to have an opinion ay ? regardless of whether or not they have had any direct contact with the disease. And I guess like life, we all are entitled to an opinion, but each have to walk our own path, making our own decisions, whatever is best for us.

Once again - WELCOME. I trust you will find this forum helpful and supportive

Oh people aye - I have quite a few people suggest to me that I should go dairy and gluten free and I will feel amazing, cause they all know someone that knows someone that was lactose intolerant etc(apparently same thing to UC and CD) and they went diary free and they are much better.

At the most part peoples ignorance makes me giggle. I am very lucky with my work place though. I work in a veterinary clinic so they're all very understanding there when I have a flare up etc. I can imagine some bosses wouldn't be as understanding.

Oh yeah 2spotties - I hear ya !


It didn't help when Alan Ferguson appeared on Close Up and there was a BRIEF mention that he felt better gluten free......

I am quite sure that SOME Crohn's or UC sufferers DO feel better without. Or, more to the point, have been tested and actually have caeliacs disease AS WELL.

But for those of us (DS,16, actually)who do not its just

I am stoked to hear you have an understanding boss

That gives me hope for when DS steps out of the school environment and into the wide world

http://www.ihateibd.com/famous_people_with_ibd.html

I had a friend send me this link, and as her heart was in the right place I can forgive her.

Thought I would post it on this thread rather than starting a new one. It may be of interest to some.

The parenting section is empathic (if brief) regarding the grief and frustration of such a diagnosis.

One piece of information I had not come across in previous research was the link of Crohn's/UC to asthma !

And I certainly did not realise Dwight Eisenhower was a sufferer !