Crohn's Disease Forum » Support Forum » What do I aay

08-03-2015, 07:05 PM   #1
Soohie's Avatar
Join Date: Aug 2015
Location: Seattle, Washington
What do I aay

I am 44 female new diagnosed with Crohns
I hesitate to tell people because they don't really
know what it is
I told a friend of mine and her hubby is a dr she
Works in the medical field
The reaponse I got was
I'm sorry you have such a horrible disease
Now I just sitting here crying
I start remicade treatment weds
I just don't no what to expect at this point but
do you guys out there think life is horrible?
I a week into this no history in family
and at 44 this came out of the blue i
just got diagnosed feel like a yo yo
08-03-2015, 08:59 PM   #2
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teeny5's Avatar
Join Date: Jul 2008
Location: California

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Welcome to the forum. Sorry to hear you are having a hard time with the diagnosis. It is a lot to take in. I think my life is great! Yes the disease sucks. No I can't eat all the things I use to. Yes I spent more time in Dr offices since the disease, than my entire life prior. But...I still have a great life. I take it easy when I need to and I try to not let the disease control my life. It can be hard, but this forum has helped me find support from others who do get it, find answers to questions, suggestions on what to do.

Let us know how you do with starting Remicade. I hope it helps you. I have no family history either and was shocked when diagnosed. I had never heard of the disease prior.
Currently on: Colazal, Prilosec, multi-vitamin, probiotics, total EFA's, glucosamine.

Previous meds: Sulfasalazine, Asacol, Rowasa, Pentasa, Entocort.

"Adopt the pace of nature: her secret is patience. -Ralph Waldo Emerson"
08-03-2015, 11:37 PM   #3
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.

Remicade has been a wonder drug for so many people.

It takes time to adjust and accept the diagnosis. Be kind to yourself.

Above all, don't expect your life to be horrible. Most people do quite well.

Sending you my support.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

Visit Crohn's and Colitis Canada:

Living in Ontario with no drug benefits?

Trillium Drug Program:

08-04-2015, 12:24 AM   #4
Lady Organic
Forum Monitor
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yes, indeed, most do well, so hang on! some ups and down ahead of you, but most likely, it will be manageable and well with treatment. Its a serious condition, but we learn to live with it and ''accept it'' with time. I have had health professionnals a few times tell me: Oh that quite heavy drug you take!!!'' I found that so Un-professionnal of their part... Do I look like I have the choice??? giving negative input on someone condition is completly useless, worse it can make us feel miserable just like what happened to you after that comment. We need encouragement, not discouragement! i would open up to other close people of yours. You will see that most will encourage you and will offer emotional support and that will help you go through this turmoil. I tell everyone I have crohns even sometimes strangers when the subject comes in a conversation and I always get support and encouraging comments. Wishing you well!
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
08-04-2015, 09:54 PM   #5
Soohie's Avatar
Join Date: Aug 2015
Location: Seattle, Washington
Thank you everyone for the support!! I am pretty positive person I was very shocked that my friend was not a little more diplomatic I will keep you posted on treatment
I am doing better today I have a twin sister in state supporting me and wonderful family
It helpful to here from those with experience
Tonight via email I was introduced to a young man who has had Crohn's since he was 10 and he is now 23 and competes in bodybuilding
08-05-2015, 12:03 AM   #6
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Join Date: May 2012
Location: Charleston, West Virginia

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I'm so sorry you've been feeling that way. That was a pretty thoughtless thing to say, although I'm sure they meant well.

This disease can be horrible, but it isn't always. I've been in remission for around five years now and live normally - I only have occasional, almost always mild stomach problems. I don't really feel like my situation is that bad (although I am afraid I'm going to jinx myself and flare since I said that ).

Diagnosis is the rough part. It definitely gets better from here.

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

08-05-2015, 05:24 AM   #7
Soohie's Avatar
Join Date: Aug 2015
Location: Seattle, Washington
Ty Sarah bear! Sending good vibes your way
08-06-2015, 08:22 AM   #8
Join Date: Jan 2014
Location: kildare, Ireland

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Sorry to hear that but no life not bad once you get it under control from time to time it can be a pain I am 36 now and have this just over 8 years but live life as normal as can just have to be mind full durning a flare up

08-10-2015, 08:24 AM   #9
Senior Member
nitty's Avatar
Join Date: Dec 2011
Location: United Kingdom

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Hi! Like you, Crohn's ambushed me completely from nowhere when I was 40 and I went through a huge range of emotions. So far I have been relatively lucky in my experience of this disease.

You may find it useful to google celebrities/sports stars/famous people with IBD/UC/Crohn's and you'll be amazed to see how many there are out there, all getting on with full lives despite what this illness can throw at them!

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