Newly Diagnosed with Crohns Disease or Ulcerative Colitis

I want to share some things I wish I knew with any of you who may be newly diagnosed with Crohns disease or ulcerative colitis or know someone who is:

1) There is no right or wrong way to treat Crohns disease or ulcerative colitis. Do what you feel is best for you, your body, your mind and your life. Things can always be adjusted.

2) Inflammatory bowel disease always plays with your emotions, always right in your face. The ups and downs are really challenging which is why a great support system is key and reaching out for help when you feel like you need is crucial. It is okay and healthy to ask for help. Crohns disease and ulcerative colitis are VERY difficult illnesses to live with.

3) Make friends with other people who have IBD…. Even if it just browsing through support pages on Facebook or Twitter, it allows you to see that you aren’t alone and that, for me personally, has been one of the greatest things for me to know with this incredibly isolating disease.

4) You didn’t develop IBD because; you didn’t eat the right foods growing up, you aren’t a person who doesn’t handle stress correctly, you aren’t harboring childhood trauma or have an inability to “let go” of the past. If someone that doesn’t have Crohns disease or ulcerative colitis says these things to you, they are placing blame on the patient which makes an already difficult illness even harder to cope with, much harder. There is NO REASON. It is NOT YOUR FAULT.

5) Listen to your body and trust yourself. Always. No exceptions.

A little over 5 years ago I was about to embark on the most physically and emotionally challenging experiences of my life. I had no idea what I was in store for but I know I couldn’t have made it this far without the support of my family and friends. I have met some of the most amazing people in person and online whom have become truly irreplaceable friends. They, along with my family, have made me realize that no one should have to go through this journey alone, no one.

From me Josh,

Months ago I found and saved this, I do not know who wrote it now (all credit due) and have changed it a little. This person’s advice is so true and something I wish I had had nearly six years ago.

joshuaerobinson@comcast.net

~my life is a work-in-progress….i’m perfectly content with that~

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Maybe You’re Too Stressed Out

And don’t you just hate,”You did this to yourself!”!

Crohn~ically Awesome

Ranking up there with “you don’t look sick” is “maybe it’s stress.” I really wish it were that simple. I have a physiological problem that causes debilitating symptoms, has required multiple surgeries, and cause multiple complications that nearly killed me. Stress does not do THAT. I’m not mental. Stress doesn’t help, but it’s not the cause of my flare.

Again, this comment makes me feel as though I’m not taking every measure possible to take cafe of my health. No, with all I go through, my health is my top priority. It is, after all, my disease. I should know.

“I know exactly what you’re going through.”

Ok, maybe that’s my least favorite. Seriously? Seriously?!? A person, who shall remain nameless, had a large intestine issue that was resolved with a resection. Said person spent 3 days in hospital, recovered smoothly, and has gone on their merry way with life…

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Support Groups

Support Groups

This is great info…. My CCFA support group is wonderful. We meet the last Thursday of each month at Panera Bread on Patterson Drive in Morgantown WV at 6:00pm. Good stuff and a place you literally can talk crap!!! So if you are near Morgantown come on in, if not use the CCFA website and find one.

What I Want You To Know, BY MEGAN STARSHAK

I have posted this before, however it is something very true and my friend Tami Lynn Berg has kicked me, as needed at this moment in life, in the butt. As I have said before I sometimes post long reads that surely get passed over, but this one is different, it is truly how someone with a chronic illness, anyone of them (mine is Crohn’s disease) feels and wants you to know. I am lucky I have a huge support system, many don’t, and they get abandoned by the face to face people they know. That is a shame, because they, we need you. We need you to be there, to listen, watch a show with us, sit on the porch, come visit (because we can’t). The only thing I wish to say about me and it is to kick you my non sick friends (because I love you), It’s the little things that are victories, coaching the kiddo’s, helping with a dinner, posting pics of the kiddos to the Bearcat page, just me having enough of me to show up. Anyway I know my Chronic Babies will read the article, all of them, I’m hoping just a few very special normal babies will too.. Link follows after Tami’s statement.
Josh
PS sorry if I seemed random or confused I have balled like a baby the whole time typing…
Tami Lynn Berg

Yesterday near McHenry, IL · Edited

This is a looong read, i understand that. I have tagged a few ppl who dont mind or i hope will not mind, me sharing on their wall. But i think the few i choose are gonna be ok with it and if not please feel free to delete ur name. I know fellow IBDers will read the whole story, my HOPE is one or even 2 of my personal friends will read this just for more awareness. I did not want to leave anyone out or include anyone who may not want to be included so please dont take it personal if i did not tag u. Some ppl keep to the "groups" with their struggle and i completely respect that. So if u find urself bored and have a few minutes to read thats all i want. And if u choose to say it’s to long, i get that too and respect ur choice. Thanks

****I WOULD LIKE TO SAY THIS CAME FROM THE GREAT BOWEL MOVEMENT SUPPORT GROUP AND WAS WRITTEN BY MEGAN STARSHAK SHE IS ONE OF THE PPL THAT RUNS THAT GROUP. THE ORIGINAL LINK IS IN THE THREAD & MUCH EASIER TO FOLLOW. THATS WHY SHE DOES WHAT SHE DOES

What I Want You To Know

by GBM on September 11, 2013 in Coping With IBD, IBD Awareness, IBD Caregivers, Support for Loved Ones

To all the caregivers, bosses, classmates, and friends. To all the boyfriends and best friends, to the girl that I see at yoga class. I want you to know this:

I have IBD. It stands for Inflammatory Bowel Disease. (It does not stand for Irritable Bowel Disorder, or anything else, and it’s not the same as IBS). If you know me, you probably know this. I talk about it frequently. I volunteer for various organizations. I have my elevator speech worked out, and I can rattle

http://thegreatbowelmovement.org/know-this-about-crohns-and-colitis/

Joshua E. Robinson

joshuaerobinson

In Your Darkest Moment Always Remember There is Still Hope!!! 🙂

Liebster Award

Well now I have been nominated for a Liebster Award!!! So for once in my life I am speechless. A sweet young lady, michelle of the blog digestingmythoughts has nominated me. This lady is a wealth of knowledge she not only posts her experiences, but things we IBD’ers should know and expect. And to Michelle a HUGE Thank You… I am undeserving, I like to help people, because by helping others learn and gather viable information to share we get closer to a cure!!! Does that make me selfish??? Yes, and I am okay with that!!! Because although I know a lot of permanent damage is done already, with a cure the new damage will stop.

Here are my questions to answer!

1. Since you’re all IBD patients, what has been your most affected aspect of life living with IBD and why?

My social me, I use to go out to see folks that I like, now I hang out most of the time in this room. It’s because of uncertainty.

2. If you could change one physical attribute of our world today what would it be?

Hmmm, big question, too much to list… Environment probably tops the list, and healthcare…

3. What is your absolute favorite thing to eat?

Anything Tex Mex minus the lettuce, and yes hot and spicy is a safe food, “FOR ME”!!!

4. If you could have any job in the world what would it be?

WalMart Greeter!!! I like people!!!

5. Who is you’re favorite actor/actress and why?

Tom Hanks,, Forrest Gump is just a great movie…

6. Who are the persons you most look up to in life?

Mom and Dad!!!

Award Rules:

1. Thank the blogger who nominated you.

2. Answer the questions you were given.

3. Nominate other blogs with less than 500 followers.

4. Post questions for your selected nominees to answer.

5. Tag and link the nominees and post a comment to let them know you have nominated them and appreciate their hard work.

Another rule of this award nomination is nominating other bloggers for it as well!

1) Kelly Crabb is a blogger I would like to nominate her work with the #purpleproject is wonderful and her efforts running the “Team Challenge” half marathon.

2) Michelle of the blog digestingmythoughts is another great example of getting it all out there, she holds nothing back.

3) Marisa Troy is another great one, I actually re-blog and Facebook post a good bit of her stuff. Her blog is called Keeping Things Inside Is Bad For My Health

4) Sara Ringer also comes quickly to mind for her wonderfully helpful and informative blog named Inflamed and Untamed .Sara also has a good YouTube Channel.

5) Last but not least and I could nominate several more but I really like Stephen Dempster. His blog Behind The Times is jam packed with super great info, so whether a newbie or a old Crohnie there is probably something there for you.

I also read stuff from Christine Miserandino, Traci Ribble, Traci probably inspires me more than any other IBD patient I know, Sharon Saeed and many more. So I guess I too am guilty off just reading people from the chronic illness community.

Questions

1) I have a pretty large care team, two GP’s, one GI, a Rheumy, a Surgeon and 2 IBD nurses, plus a Hematologist. What does your team consist of?

2) If you could have any job in the world what would it be, and why?

3) Bath or Shower?

4) What is your favorite thing to do when feeling well?

5) Does your partner or spouse help and support you or do they feel cheat and IBD was not part of the deal?

Joshua E. Robinson

In Your Darkest Moment Always Remember There is Still Hope!!! 🙂