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Crohn's Disease Forum » Support Forum » Vent Away » No matter how people........


12-11-2013, 08:31 AM   #1
David Abe's
 
Join Date: Dec 2013
No matter how people........

No matter how much people you love say they understand, they truly will never grasp what a crohns/colitis sufferer goes through.

It's the small things that are a big deal for us,
For example my wife gets agitated when I panic going to a resteraunt or
Even a 10 minute drive, I have almost have to go to the loo instantly or within
30 secs I'm having accidents in my underwear.
Why is it so difficult for love ones to see.

Finish work and your so exhausted that you want to rest. But my partner thinks I'm lying.

Currently taking humira and for the 1st 2-3 days I feel crap and get moaned at
For being miserable!?!!
I ask her to read up about crohns but is not interested

Ok rant over, am I alone with this
12-11-2013, 09:41 AM   #2
CDJ
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Join Date: Jan 2013
Location: Uttoxeter, United Kingdom

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You are not alone, though I would have thought that your wife would want to educate herself on what you are going through.

My son has crohns and his father [ my ex ] has no understanding of what our son goes through or even seems to what to understand. I wish he would educate himself on all the problems our son has. He just seems to think son is lazy or I am exaggerating when I tell him what is happening. He will say things like if he ate properly then he wouldn't have so many problems or ate more red meat then his iron levels wouldn't be so low
I can take it from people who aren't in our lives all the time, but there is no excuse for loved ones around us to underestimate how hard this disease is.

for you.
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Son - -14
diagnosed 29/10/2009

Taken off azathioprine Jan 2011 due to needle phobia
carried on with just pentasa until March 2013

6 weeks Modulen Dec 12 / Jan 13

Finally overcame needle phobia after 3 very long years due to getting right help.

Currently on
125mg Azathioprine
3000mg Pentasa
20g Omeprazole
20mg Buscopan
5mg Prednisolone
Isoniazid
Pyridoxine
600mg ferrous gluconate
250mg zinc
Started Infliximab 18/03/15
12-11-2013, 12:16 PM   #3
JoFowler
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Location: Dartmouth, Nova Scotia

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My husband has come up with some doozies! When he told me I should should just have an operation and get the problem cut out and move on with my life, I was livid! I suggested he do some research or even come to a dr appointment with me. You can guess what he did. He just shut up. And I stopped expecting any understanding from him.

Lately he seems a bit more caring. I think it's because I am nauseous or feel sick after eating and I don't feel like grocery shopping (ew, makes it worse) or eating much, or looking through recipes to change up dinner every night. IE He only cooks a couple of things and is getting alarmed. hahahahahahaha
12-11-2013, 12:36 PM   #4
JoFowler
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Location: Dartmouth, Nova Scotia

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Oh and today he has emailed twice about how hungry he is, after we have discussed how little I am able to eat these last few days. He can eat whatever he wants with no pain. Sigh......
12-11-2013, 02:53 PM   #5
Essieluv
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I totally get this. People just don't understand. It's frustrating, but it's not entirely their fault. I mean, I wouldn't have understood either before I was diagnosed. I didn't even know that Crohn's or Colitis even existed. When in doubt, put the blame on society in general, lol.
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Meds that failed me: Remicade, Humira, Cimzia, Entocort.

Waiting for a cure!
12-11-2013, 04:45 PM   #6
Jmrogers4
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I don't know how people can not research when a love one has a disease. My hubby was dx'd 2 months after our engagement and I did a ton of research (he did none). And if he says he needs the restroom I find one quick (even one time pulling over on the side of the road in the hills of Scotland - we were on vacation.) We both keep an extra roll of toilet paper in our cars. When our son was dx'd 4 years ago I did even more research.
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Jacqui

Mom to Jack (18) dx Crohn's 2/2010
Vitamin D -2000mg
Remicade - started 1/9/14; 7.5ml/kg every 6 weeks
Centrum for Him teen multivitamin
Past meds: Imuran/Azathioprine; allopurinol; methotrexate; LDN; Prednisone; Apriso; Pentasa; EEN

Husband dx Crohn's 3/1993
currently none due to liver issues
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