09-02-2011, 12:23 AM   #1
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What's The Difference?

Between a carer and the person with IBD, well in my way of thinking not a lot really except for the bleeding obvious of course!

- We both had no choice in the roles we were given.

- We both hate this disease with a passion.

- You hate your never ending relationship with the toilet and I hate seeing it.

- You hate being in pain and I hate watching you suffer.

- You hate having tests, going to the doctors and hospital. I hate that you have go through all these things.

- You hate taking medication every day and I hate reminding you that you need to take them.

- You hate the diets and restrictions and I hate watching you lose your freedom of choice.

- We both get angry at times and say things we don't mean.

- We both laugh at the same things.

- We both enjoy each others company and doing things together.

- We both prick up our ears when we the word IBD mentioned on the TV or radio.

- We both share information we find about IBD.

- We both love each other, the hugs and the kisses.

- We both wouldn't wish this disease on anyone.

- We both comfort each other in times of illness, sadness and need.

- We both wish for a cure.

I guess the one difference is...I wish I had the disease and the people I care for didn't, even though I know they wouldn't want it that way.

Mum of 2 kids with Crohn's.
09-02-2011, 04:57 AM   #2
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Between a carer and the person with IBD, well in my way of thinking not a lot really except for the bleeding obvious of course!
...and in our case, the obvious bleeding!

Nice post Dusty!!
Mark, father of EJ

EJ dx w/ Crohn's 12/09
PSC 3/10

No more 6mp
Currently in the Humira Club
09-02-2011, 08:43 AM   #3
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Wow, very well said! You're wonderful at putting into words what we all feel! I just so hate this disease and that my son will always have to live with it and that we've now learned that we never know what's coming!!! It was so much easier to live in a world where I could think 'oh, so sad but wouldn't happen to me or mine...'

But, it does help so much to know that others feel exactly as I do and that none of us is alone in our fight!

Thanks Dusty!
09-06-2011, 01:57 AM   #4
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Oh Dusty,

The line that caught my attention was your wish for the disease. I was in your position once. I wished it was me instead of my partner. I totally understand everything you posted and agree with you, even from the same place without syptoms. It was terrible watching her and all the trips at 2 AM to the ER. Her crying and praying in pain the bathroom. I felt so bad and much like what you posted. It took it's toll on me.

Suddenly, the disease had it's onset. I had the same symptoms. I heard my GI say bluntly and loudly, "Well you have Crohn's disease".

My life changed in an instant. I suddenly knew exactly what my partner felt. Suddenly it was me feeling pain and getting depressed and blood in my poop. It was me who decided I'll need to take an extra change of clothes to work. I got what I wished for, and I now have the same incurable disease, and I understood EXACTLY what she felt and how she felt.

My life has never been the same. I'm forever changed, and I can never turn back time and take away the incredibly widespread physical changes that have happened now. My digestive tract has changed forever. I have neurological changes that the best neurologist sometimes has to scratch his head and wonder how the hell did that happen? I have some of the ugliest memories burned into my brain that make me literally feel terror and anxiety when I smell popcorn.

In my case, Crohn's is only one "player". I have IBS too. I have perenial precancerous colon polyps that sprout between my annual colonoscopies. My GI's never say "It's Crohn's".

I get the call, and the doc says "You already know your biopsies came back bad, right?" He was trying to prepare me for "You have Crohn's disease of course, but you also have...". It's always "You have Crohn's PLUS" other things that change my lifestyle time after time. I now have worries about cancer in places I would have never imagined or thought about before my disease moved in.

There is a major difference. Give thanks that you are blessed with the gift of caring and compassion. Then thank your lucky stars that you don't have this incredible nightmare called "IBD."

I know how you feel. Your kids are so blessed to have a mom that is as knowledgeable and understanding, and always there to give care and support.

You have changed. You have become a superhero with new super-human power you didn't realize you had. You've become a leader and will take the bull by the horns and dive into peril faster than a speeding bullet. You've become a healer.

You have become an angelic gift from God to your loved ones.

Thank you for being you.
"When I change the way I look at things, the things I look at change."

Crohn's Disease: November 2002
2G Sulfasalazine
60mg Bentyl (dicyclomine)
09-06-2011, 10:38 PM   #5
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Ah hell Joe, well to say I appreciate your kind and loving words more than ever right now would be an understatement!

I hear you loud and clear on the suffering that this disease brings to you all and I do indeed know how blessed I am that I don't have IBD but god knows what I wouldn't give for my children to have been spared.

I am being pulled in totally opposite directions right now, on the one hand Sarah is struggling at present and on the other Matt is doing well. The highs and lows this brings absolutely kill.

I really needed to hear those most thoughtful and beautiful words from you all. Thanks just doesn't seem sufficient so just know that I mean it with all my heart.

01-09-2012, 09:10 PM   #6
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you have been a great help to me over the last year DustyKat. I have said it before; I don't know how you do it; with 2 kids with this disease. I am overwhelmed most the time having just 1;and she is 24; not as young as yours! bless you
01-09-2012, 10:29 PM   #7
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Thanks for bumping this thread, M2M and thank-you for writing it Dusty. I just showed it to my mum and we both got a little bit teary. It really hit the nail on the head about how she feels about me being sick.

Parents and loved ones of Crohnies - you're all freaking awesome and I can't give you enough kudos. I can't even begin to imagine how it must feel to be so helpless and I know you would give anything to take it all away. I don't know how we would survive without you and your support and love means so much to us
~ Nicci

"Never feel guilty for being sick and try to stop comparing yourself and your life to others. You're doing the best you can under the circumstances you have and you're doing great."

Diagnosed with Crohn's in August 2009
Medication: 20mg Methotrexate injection weekly
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01-09-2012, 10:34 PM   #8
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Well said!!! Thank you! ((((HUGS))))
01-10-2012, 12:13 AM   #9
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This is nice and thoughtfully put Dusty. Thank you.
Diagnosed with Crohn's Disease in 2005

Pentasa 2x500mg (4 times a day)
Zofran (as needed for nausea)
Ginger Capsules (for Nausea)
Zoloft 150 mg
Ranitidine 150 mg (2 times a day)
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01-10-2012, 12:31 AM   #10
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This was an awesome read!!

Thank you, Dusty
Dx'd w/ Crohn's in 2010
Past Meds: Flagyl, Librax, Asacol, Levsin & Entocort
Past Treatment: Pentasa 4x2 (1/5/2012) didn't help
Last Treatment: Remicade & Prednisone (8 month trial... To no avail)
Supplements: Probiotics, Vitamin D, Fish oil, and B12

"When you wholeheartedly adopt a "with all your heart" attitude and go out with the positive principle, you can do incredible things."
- Norman Vincent Peale
01-12-2012, 12:39 AM   #11
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How the hell did I miss this thread the first time around?!?!?!?!!?!?!

As always, Mate, you always know exactly what to say.....
My Story
01-21-2012, 05:58 AM   #12
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02-21-2012, 12:27 AM   #13
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I agree with all the above, well said.
Wife of DougUte
02-21-2012, 02:50 AM   #14
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Dusty, I have to be a little critical here... as you forgot one major difference.

We with IBD have no choice in the matter, as it is within us. The caregiver on the other hand, they make a conscious decision to stay by our side, embracing us, and our disease, without a second thought. While we are stuck, the caregiver almost always has the option to turn around, and walk away. In that respect, people like you have more courage than you could ever give yourself credit for... Don't you forget it!!
Don't assume my posts are about you. But if you are affected, that must mean you are guilty of something.
02-21-2012, 06:04 AM   #15
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Ah hell Slim...

02-21-2012, 08:44 AM   #16
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((Slim)) Nor should you forget it in your "other situation," and you know what I mean.
02-21-2012, 11:59 AM   #17
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I don't know how I missed this, but thank you Jessi for suggesting it be in the newsletter so I could find it!

Dusty, as usual, very well said! Thank you

Slim, well, you've brought a tear to my eye ~ how compassionate
even tho it wasn't "addressed" to me, I will take it
Mom to Gab (20)
DX: Crohn's 2/2010
and Austin (18)
DX: Crohn's 7/2013
12-17-2014, 06:08 AM   #18
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I'm afraid that I've just seen this thread and love it so much!!!

I also know that none of us would ever know what to do without those loved ones, supporters there with us...
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

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