Crohn's Disease Forum » Your Story » Newly diagnosed

07-25-2015, 09:44 PM   #1
Black Cat 15
Join Date: Jul 2015
Location: Uk
Newly diagnosed

I've not long been diagnosed with Crohn's and whilst I am getting fantastic support from my family I can't help feeling low, well actually I feel damn right sorry for myself and I'm struggling to get past that bit. Normally when #### happens I get over it and say nothing wrong with feeling sorry for yourself for a day but build a bridge and get over it, and I normally do but this time I'm struggling & with all the will in the world my family don't understand and just can't help me. Is there anyone that can relate? I feel very alone, although have lots of support. I don't want to be selfish but no one understands. I don't really know what I'm asking for? Just not to be so lonely I guess?
07-26-2015, 10:24 AM   #2
Senior Member
Walt's Avatar
Join Date: Mar 2010
Location: Ontario

My Support Groups:
I feel sorry for myself and I'm struggling to get past
Good Day Black Cat 15,
I am sorry you reached that place, and this place.
Welcome to the forum we are pleased to have you join us for support.
As 24 hrs have past since you posted your distress,
and no one has yet responded, I will offer my 2 cents.

We have many good things to be glad about in modern Crohn's treatment.
However as of this time, the bottom line is:

Crohn's disease still has no known cause and no known cure.

Yes IBD is a very individual disease, but sooner or later we will all likely get to know fear, anxiety, pain and losses.
We have that in common.

As we try to grasp the concept that we have a horrible, incurable disease...
each must go through a process of grieving the loss of
their former "pre-Dx" life.
Crohn's is a context in which I live.
It is an awareness in my mind & with me all the time

Crohn's is unfortunately not just an attack on the physical body.
A confirmed IBD Dx is hard to get, and then once you achieve that much,
... it's hard to forget.
From the moment of my own Dx, I have not had many moments since
in which I was not on some level or another, aware that I had a disease.

Besides the physical challenges, the mental burden of IBD can be tricky too!
I was once taught by a clever IBD friend,
that after official Dx, we must go through the 5 stages of grief.

Sure you can visit these negative feelings as you work your way through all of thisÖ
Just donít allow yourself to get stuck feeling sorry for yourself.
Denial of our thoughts & feelings is not a good path.
Try to feel your feelings & watch them change & evolve over time.

Allow yourself to work through your current feelings.
Sure, we come together on this forum and support one anotherÖ..
but grieving the official loss of our health at Dx is a solo mission!

Yes there are alone parts to inflammatory bowel disease.
Yes there are times to be selfish in working through our thoughts & feelings.
All of that is okay, normal and sort of expected.

The universe is functioning perfectly,
and you are functioning perfectly within it!

you are not alone, even if sometimes it seems that way.
most of IBD happens on a slooow boooat.
See if you can work on resting & relaxing.
Those are crucial IBD survival skills!!!
wishing you only well,

Stress is another IBD agitator.
Donít stay freaked-out too deep or too long!
It might provoke the monster.
You know, the monster that sometimes eats my life,
And makes me glad when he isnít eating my life.
currently 'enjoying' Metho, Remi gave me Lupus, Humira pens now weekly - jury still out?
whew, just a little Prednisone?

I'm starting to think Crohn's isn't as much fun as they made it sound in the brochure?

Be who you are and say what you feel,
because those who mind don't matter and those who matter don't mind - Dr. Seuss

A hard road is better than no road.

getting knocked down is nothing.
bouncing back is everything.

in the end, only kindness matters...
07-26-2015, 10:43 AM   #3
Senior Member
Walt's Avatar
Join Date: Mar 2010
Location: Ontario

My Support Groups:
Hi again BC15:
I wanted to add a link to a sweet version of the stages of grief:

Just something to consider as we grieve the loss of our healthy self...
and try to climb back into the sunshine of a cheerful & positive outlook...
as we overcome our obstacles & claw-back all of the quality of life we can!

be as well as you can,

better days ahead!
07-26-2015, 12:32 PM   #4
David's Avatar
Join Date: Feb 2006
Location: Naples, Florida
Hi there and welcome.

I suggesting starting here:

It's good to be back
07-26-2015, 03:02 PM   #5
Forum Monitor
Hope345's Avatar
Join Date: Oct 2012
Location: eugene, Oregon

My Support Groups:
welcome to the forum.
you are already making such a big step of reaching out to others who are going through what you are. The support you find on here is incredible.

As a mother of a daughter with IBD, my heart hurts with my daughter and my life has stopped too. I have wanted to help her as she deals with it, but can only be here for support and an advocate.

you may want to let them be an advocate for you when you need it, and maybe tell them how you feel: you are scared, lonely, need time to work through it, you are mad, you are not sure of the future, you need time alone, keep a journal of your foods, your meds, your symptoms and maybe they can read it so you dont have to talk about it all the time, I hope this helps..... as a mother, we feel helpless sometimes and want to help in every way possible.

take care and if you want to talk with my daughter she has had it now for three years and it could help
Daughter (age 17) diagnosed with Crohns Colitis/UC 1/2012 Mod/severe changed to U.C.: 11/7/2014 anemia:blood transfusion current: Flare, weaning from Prednisone, still bloating: Meds ,Pentesa: 2000mg twice daily, Vegan diet, mesalamine enemas .Previous: mercaptopurine, Remicade (13 treatments), Imuran, prednisone ), Flagyl, iron infusions, cortifoam,
Continue to be hopeful
Daughter: age 21, undiagnosed: GI issues

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