A thought..or a vent

[Hana]

It is amazing to me how many people are joining this forum as new Crohn's patients and how many have had it for years, but they are just now discovering this forum. At the same time not many people (or even some doctors) know much about this disease and how to control it. A lot of people asked my husband what kind of surgery did he have. How do you even try to explain that to someone? If you tell them that he has Crohn's they don't know anything about it, unless one of their family members/friends was affected by the disease. If you tell them that he had the surgery they don't why he's not well now. They say things like 'didn't he just have this surgery?' I don't know what to tell them. Which part of chronic do people not get?

One would think that the disease would have more exposure as (although in rare cases) people even die of this disease. To be fair I know there are other chronic disease that are just as dangerous and painful to live with, but it just seems like it should not be THAT hard. We can figure out how to fly to the Moon but not what's causing Crohn's. I know why...bc there is no money in finding cure..but it just makes me sad to think that we could eliminate so much human suffering if we didn't only focus on money.

 

[imisspopcorn]

I totally agree Hana! This disease is by far more debilitating because it strikes people in their prime years. And, people with Crohn's disease miss more time off from work, school etc. compared to diabetes and heart disease.....I really wish someone famous would get the disease and bring more awareness to it!
But, who wants to admit that they have pooped their pants in public?....Uggh!

 

[Hana]

I totally agree Hana! This disease is by far more debilitating because it strikes people in their prime years. And, people with Crohn's disease miss more time off from work, school etc. compared to diabetes and heart disease.....I really wish someone famous would get the disease and bring more awareness to it!
But, who wants to admit that they have pooped their pants in public?....Uggh!

OMG IMP that's exactly what I said too!!! Not that I wish that upon anyone but I do wish someone that has some power/money would get it, so they can raise awareness.

And the last sentence too...everyone always says how this disease is hereditary (and other things) but nobody in my husband's family has it (or least not that we know of). I told D. that I'm sure if someone had it they probably just did not share..people in our country are really buttoned up about stuff like that.

 

[Peaches]

We need a Michael J. Fox!! I agree - it is about the money. But research takes money, and a LOT of it. Would you work a 40 hour work week for no money? I wouldn't. And we need hundreds of people who have great degrees working on this. I predict this disease will become more prevalent and will be more on the radar and get more funding - in time. BUT...as in that other thread that someone started....when was the last time you heard of a cure of a disease that didn't have a cure?? That was an eye opener for me... :O(

 

[Guestly]

Yes! How cool would it be if someone famous and glamorous could go public about having crohns? Is there anyone? Do I just have my head in the sand?

I often feel that even my GI has no real grasp of how debilitating this illness is... Unless you have actually experienced the horror of public sharting how could you comprehend???

 

[CrohnsHobo]

http://crohn-colitis.hu/eng/famous-people-with-ibd.php

 

[Nyx]

Yes! How cool would it be if someone famous and glamorous could go public about having crohns? Is there anyone? Do I just have my head in the sand?

I often feel that even my GI has no real grasp of how debilitating this illness is... Unless you have actually experienced the horror of public sharting how could you comprehend???

OMG sharting....lol I'm soooo using that!

 

[Nyx]

http://www.charitybbqday.com/media/partnership_fact_sheet.pdf

This is the only thing I've seen in my area that anyone's done for Crohn's.

 

[Guestly]

Wow - Sir Steve Redgrave - I had no idea... loads of famous people actually...

Still not enough people getting up there and talking frankly about sharting... I shall have to get famous and do it myself...

Failing that I am going to write a book about pant pooping adventures...

 

[Brad P]

23 years with Crohns this year...found this forum in the past year I guess. ONly been active here the past few weeks perhaps?

Bowel disease is only recently being accepted as being able to talk about openly in recent years...awareness is getting better

 

[Hana]

Thanks CH!!! Who knew?

Bowel disease is only recently being accepted as being able to talk about openly in recent years...awareness is getting better

Agreed, and that is a damn shame...if someone broke their arm they would not have to hide it. It's just amazing to me how society does not receive certain diseases as well as others. Mental diseases are another example of this....they are discriminated also.

Nyx - check this out http://ccteamchallenge.org/site6.aspx

 

[Misty-Eyed]

Wow - Sir Steve Redgrave - I had no idea... loads of famous people actually...

Still not enough people getting up there and talking frankly about sharting... I shall have to get famous and do it myself...

Failing that I am going to write a book about pant pooping adventures...

Do you belong to the NACC, Lishy? Steve Redgrave does a lot in the charity side of things for them for awareness.

I also think that singer Anastacia has it. I think I remember reading that she had an op for it when she was younger. I don't think she has it all that bad though and is more well known for her breast cancer. Crohn's got trumped with that one lol.

 

[Nyx]

Thanks CH!!! Who knew?

Agreed, and that is a damn shame...if someone broke their arm they would not have to hide it. It's just amazing to me how society does not receive certain diseases as well as others. Mental diseases are another example of this....they are discriminated also.

Nyx - check this out http://ccteamchallenge.org/site6.aspx

Too bad that's in the States...it's a bit far for me to run....oh wait a minute...I don't run...EVER....lol

 

[Guestly]

Yes - I have joined Misty - obviously I have had my head in the sand... I was thinking that Anastasia had it???

Thing is when people do talk aout Crohn's they just say "Oh its a very deilitating and painful bowel complaint that can cause weightloss, and sometimes require surgery"...

I want to see someone downright sexy stand up and say FRANKLY...

"I have crohn's and I poop my pants..."

Too much pussyfooting around the issue if you ask me.. the fact is our illness is as above... but unless you have actually crapped all over your car/bed/husband/supermarket/local park/best friend's sofa... how could you comprehend???

It's so much more than just a "debilitating bowel complaint"... Where and when I poop (which as we all know is not in the generally accepted facilities) dictates my life!!!

I hate that some people look at you with disgust if you give them an honest account of what crohn's really means... and then some others say "Oh, I know exactly how you feel - I had a dodgy curry once"... Right.. so you spent maybe a couple of hours on the toilet the morning after the night before on ONE occasion... I'm so glad that I have met someone who truly understands - we can be friends for life!!!

Then there are the people who ask you how you are, and you can see they are glazing over before you have even opened your mouth...

Even my GP, who is lovely, I dont think gets it... how completely this takes over...

Classic example, when I was in hospital recently on the specialist gastro ward...

I collapsed in a puddle of my own waste in the toilets (we're talking a hat trick here, pee, vomit and poop - oh plus blood and pus- real classy), on the way down I had also head butted the taps... I had to pull the emergency cord and ask a nurse to bring me some clean clothes, this was after having had to lie in said waste for about half an hour trying to muster up the strength to even reach the pull cord. She didn't help me -she just passed some hospital issue stuff through the door.

Once I had sort of cleaned myself up, I staggered back to my bed and spent the next 4 hours sweating and shivering, in between wobbling back and forth to the toilet...

When my husband arrived for visiting he was horrified, he said he could smell me as soon as he walked into the ward, and he literally had to carry me to the shower and hose me down...

So I know YOU GUYS are all thinking, "Yup, been there, pretty standard crohn's attack"...

When the shift changed over the nurse doing the handover said...

"So Lishy felt a bit sick today but apart from that she's been fine, self caring and fully mobile"

HELLO???

My point is... (I'll get there in the end)... if even on a specialist gastro ward they don't get it... what chance do we have? Because I really don't think "a bit sick" even begins to explain what we crohnies are going through on a daily basis, and often times for a lot of you, multiple times per day...

How are we expected to live our lives when we are dealing with these kinds of episodes? It's not a broken arm which everyone can see and make allowances for... and quite frankly if someone said to me if we snap your arm in four places you will have normal bowel movements the whole time you are in plaster... man I would be 1st in the queue!

GGGRRR

Shall I stop ranting now...? I think I may even have wandered away from the original tenet of the thread....

 

[Hana]

Too bad that's in the States...it's a bit far for me to run....oh wait a minute...I don't run...EVER....lol

Heh..that's ok I just wanted to give you a link to it, bc I was surprised when they sent me an invitation in the mail..not to my husband, but me! I wonder where they got my name and address. Runner's magazine? I was also glad to see that the disease is getting more exposure. I told my hubby that I would like to participate (but I only run 3-5 miles from time to time..and I have not been consistent with that in the last few weeks..holidays and such) and that I'm afraid that I wouldn't last 13 miles...so I said..well maybe we should donate some money..his answer was..I am spending way too much for treatment. He's right though..as much as I would love to support something like this financially, we are not in situation to spend our money like we're growing it on our money tree. Especially since we don't know what lays ahead of us. :S

 

[Hana]

No Lishyloo, you shouldn't stop ranting...that is what I keep telling my husband when he's downplaying what he has. Even his parents have no idea what he goes through on a daily basis, so instead they're sitting there whining about him living so far away and want him to pack his bags and return so his mom doesn't feel so lonely..little does she know that when he had fistulas in Germany they just cut his skin, and that was it! No seton drain...no Remi to try to control it. How are those fistulas supposed to heal....on their own? Just one day they decide that they've had enough. She doesn't know that all they gave him was prednisone..she doesn't know many other details about his disease. So she's sitting there being mad at him for "abandoning her". WTH?

It's such ******** and I'm really frustrated with it..bc I see how much he suffers, and half the things he won't even share with me because he doesn't want me to worry and because he generally doesn't like to complain....glass is half full kind of guy..I know he doesn't even want to let me see his seton drain until i fricking demand it..I do not think there is anything disgusting with it bc I love this man with all my heart and it is not his fault that he has to deal with this..and I want to know as much as I can to help him. How am I supposed to look out for him if I don't know all the details? How will I know if he tried it all if I don't know what he did?

I think I am generally an ok person, but I can be a real b*** if I need to and that nurse would have gotten an earful from me...

I am so sorry....and please do vent..the title says vent or a thought

 

[Guestly]

Hana - I am so glad that your hubby has you. You remind me of my hubby, or Pirate's wife Janis... great people who are working so hard to keep us crohnies on an even keel that you probably suffer every bit as much as we do...

Keep being special Hana.

 

[Hana]

Awww thanks..but it's not me. My hubby is just the greatest person I know and he deserves the best, and I am just trying to support and love him as much as I feel loved by him.

 

[CrohnsHobo]

Heh..that's ok I just wanted to give you a link to it, bc I was surprised when they sent me an invitation in the mail..not to my husband, but me! I wonder where they got my name and address. Runner's magazine? I was also glad to see that the disease is getting more exposure. I told my hubby that I would like to participate (but I only run 3-5 miles from time to time..and I have not been consistent with that in the last few weeks..holidays and such) and that I'm afraid that I wouldn't last 13 miles...so I said..well maybe we should donate some money..his answer was..I am spending way too much for treatment. He's right though..as much as I would love to support something like this financially, we are not in situation to spend our money like we're growing it on our money tree. Especially since we don't know what lays ahead of us. :S

Don't let the distance scare you. I have never been a runner and I did the 13 miles for Team Challange in December at the Las Vegas Marathon. I walked the whole thing. Took me three hours.

Though I did train four days a week for four months leading up to the race. But you do it in a group.

At the dinner they had chapters from all over the US. Was neat to see soooo many people with Crohn's or Colitis and people supporting the disease. I was also surprised how easy it was to raise money. I managed to raise $4,000. Some people raised over $20,000!

Was such a great event and I am glad I did it.

 

[Hana]

Oh I forgot that!!! That's an even bigger prob for me..asking people to support me. I would rather support than be supported but like DH said, we spend too much for treatment anyways.

Honestly, if I can just hop on a treadmill and run for 3-4 miles (which I did the last two nights, just to make sure I can still run), I think I should be able to build up to 13 miles in a month or two if I got serious about this. Trying to think positive. Besides if I knew it was for a cause and running with a group it would be easier to get motivated. I think I will go to one of their meetings and see if they make you commit to raise a lot of money. If I can aim low then I would be fine. I always prepare myself for worst case scenario, and then if I come on top, I'm happy.

I have no doubt that it would be a great event, I was so excited when I got an invitation.