That awful C word… Crohns.

Very good in explaining the disease, I just hope some “Normal Folks” read it.

Diary of a crohns warrior and life junkie!

“Today I will fight again. This disease will not own me or define me.”
These are the words I like to begin each day with, stating my intent out loud. Somehow it seems if I actually hear it, it’s easier to live it and believe it.
I have Crohn’s disease, for which there is no cure – a disease that requires a daily personal battle with things most of us prefer not to discuss with others. And for those who must deal with it, one thing is certain. It’s horrible, it’s overwhelming, and it’s humiliating.
The humiliation factor is a major reason so many suffer in silence -the evidence of the disease and the treatments are things you just don’t tell others about.
So you find yourself facing the challenges alone – the pain that literally doubles you over without warning: nausea, life-threatening bowel obstructions, incontinence, dehydration, intravenous feeding…

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Sometimes the “little things” are what hurts.

2 years ago today April 4th 2014 I was released from Fairmont General Hospital after a week and a half long stay. I had been in Fairmont general hospital because I have been eating strawberries in a lead up to the hospital visit just an innocent little strawberry so it was. A week and a half before I was in the hospital I was very sick I had to come home from work a little early I could not go to my son’s basketball game and my older children had to take me to the emergency room at Grafton City Hospital. At GCH it was determined that I had three perforations in my colon, free air which means the contents of my colon was leaking into the abdominal cavity, and I had Sepsis. I was transported to Fairmont General Hospital due to the fact that my Gastroenterologist, Doc Ciarolla (Doc C) worked there. After Doc C and Dr. Frank scared the heck out of me by saying I would need surgery and possibly an ostomy, then decided to try to treat me with total bowel rest and aggressive antibiotic treatment, it worked. I never gave up faith or hope that these doctors would take care of me, and that they knew what they were doing I’ve trusted Dr. Ciarolla with my life several times he is a good doctor. So my point is I have learned that’s some very very innocent things can be very dangerous for certain people with certain conditions. Two years after the fact of perforated bowel and Sepsis I’m here to say that I have survived, and I am a survivor. Everyone else can be as well if they just pay attention to what they’re doing, notice your symptoms, pains, and signs that you may be see every day, and paying attention to every sign and symptom is very important to take note of. Nothing is too small 2 years ago today I ate a strawberry.

My “Ask Me” Shirt!

Last time I wore my “Ask Me” shirt a person I see all the time questioned me.

Person – Josh why do you talk so much about the disease you have and you know it is really gross?

Me – When I was diagnosed I had never heard of it, I thought I could be fixed, wrong. Yes it is gross sometimes, but it is more about pain, joint pain, eye pain, extreme gut pain, pain that never lets up. It’s about these medicines I take to stay alive, some with devastating side effects = more pain.

Person – Why do you joke and carry on and when others poke fun at you, you laugh?

Me – If I weren’t joking and cutting up, I would be crying, which by the way I do a lot of. I don’t just cry about me, I see horror stories going through my FB and Twitter news feeds. Most on-line see once or twice a year something terrible in their feeds, I see it everyday and sometimes several times a day. It’s most of the time not people dying but someone going through hell, things “NORMAL” people can’t comprehend.
I laugh at people’s poking fun, because most of the time it is them trying to make me feel better. I get offended sometimes if I don’t know them well because they don’t know there is a line to not cross, but I still laugh anyway. At some point down the road when I know them better I tell them about that line, but by then they usually know.

Person – How do you do this?

Me – I have no choice. This is “MY” life, the only one I get, and I make the best of it, I try everyday to live to the fullest. Chronic illness is hard, very hard and I have three of them. So you may have to make exception for me sometimes, but never feel sorry for me, never.

Person – Wow! Thanks!!!

Me – Wow, thanks for reading my shirt, asking and listening.

A Guest Post

A Guest Post From, Maureen Green, How your mental state feels!!!

When I was first diagnosed I felt a sense of urgency to get better and find a treatment that worked so I could get back to work and provide for my 3 kids, as a single mom. When I realized that I wouldn’t get to that point quickly and lost my 50k a year job, I felt a sense of worthlessness, despair, being alone in a sea of something I knew nothing about. I felt like a failure, even though it wasn’t my fault. I felt at fault in some way. I felt guilty about not being prepared and putting my kids in the situation we were in now. I went through deep, deep depression. I went through agonizing loneliness and guilt, I felt like I was trapped in something I didn’t know how to get out of. I felt like I was never going to get better and to suck it up and deal with it. I withdrew into my illness, my kids lives (what I had the energy for) and into my own shell. I didn’t want to be around people and I didn’t want to even try to be in society. I was a nothing, I even felt like a failure as a mom. Crohns Disease affecting the affected person menatally,,,,,,nah!!!!! lol, sometimes I just wanted to die because I felt my kids would have a much better life without a sick mom. That’s how it affected me mentally. Thanks Josh Robinson for this opportunity, I haven’t thought about this in a long time. I really have come a long way since January 2008 when I first got sick and Feb 2008 when I was diagnosed with Crohns Disease, found out I had C-diff and lost my job all on the same day. That was the most marvelous day of my life, lol. heart emoticon you and hope we can get you to where I am one day!!!!!! Be well friend!!!!-#nursemoknows #take steps

Joshua E. Robinson

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

Inflammatory Bowel Disease Awareness Post;

Inflammatory Bowel Disease Awareness Post;
I’ll use me as the example. Today June 6, 2015. Up for work at 5:30am, going down my front steps at 5:55 had an accident and crapped myself. Back in house, cleaned up re-dressed, called work to inform what happened, made it there by 7:05. About 1:00pm I got nausea so bad I would not have been surprised to had seen my toe nails come out of my mouth. I got the nausea under control with Phenergan, a Xanax and lots of Peppermint Altoids. We have a low pressure weather system going through so my joint pain makes me feel like I have been ran over. This is a very typical day of what it feels like to have Inflammatory Bowel Disease. There are millions of us that live this day I described daily.

Joshua E. Robinson

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

TWO Weeks Until We Walk
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Take Steps For Crohn's & Colitis
Visit my Participant Center >
Walk for Crohn's & Colitis: 4 young people holding a sign that says Take Steps
It’s the Final Countdown!

With 2 weeks left before the Morgantown Take Steps for Crohn’s and Colitis there’s no time to lose!

YOU can raise more than $200+ in 2 weeks!

Here are a few fun ways to raise more than $200 before we hit the streets for Take Steps:

1. Make a self-donation → $30
2. Challenge and tag TEN friends on Facebook to match it → $30-$300
3. Email 5 friends and ask them to forego their morning double mocha frappuccino and donate $5 instead → $25
4. Babysit for friends and ask them to donate to your page in place of payment→ $30
5. Team up for a car wash fundraiser and charge $10 per car….

And don’t forget WHY this extra fundraising push is worth it.

My story;

Walking for a cure!!!
Hey Friends,

It’s just me, just Josh,

Just one person in at least five million worldwide (probably many more since 50,000.each year is diagnosed), at least 1.6 million Americans that suffer from a Chronic Illness called inflammatory bowel disease (IBD), Crohn’s disease and ulcerative colitis, we have no cure. Did you realize 35000 to 37000 people die each year from inflammatory bowel disease. We, I could really use your help!

I spend a lot of my time working in Taylor County, WV for youth sports, I am a basketball coach, (good one) and a former baseball coach, I really enjoy the Kiddo’s. My last basketball All Star Team went 24 and 2, ARob’s 6th grade year. My son (ARob) and I walk every year for breast cancer in our local Relay For Life.

This time of year is for me. I am and have been sick for 6.5, years with an incurable disease called Crohn’s disease, Crohn’s is illness that causes never ending sickness and pain, and as of late I am very sick again. In the past I have had bowel perforation, fistulas, anemia, diverticulitis and sepsis twice. Autoimmune diseases also come with partners and friends. Since becoming Ill with IBD, I have been diagnosed with ankylosing spondylitis, symptoms include pain and stiffness from the neck down to the lower back. The spine’s bones (vertebrae) may grow or fuse together, resulting in a rigid spine. I am also host to Crohn’s related rheumatoid arthritis in my hands, elbows, knees and feet. The meds I take for Crohn’s disease are dangerous as well as can be deadly, they cause infections, heart failure, liver failure, drug induced Lupus and sudden death, and the illness can be deadly as well. I have lost 13 people I knew through Social Media to Crohn’s or UC, Gary Pritchett and Dawn Davis Miller instantly come to mind.

Please consider me and my friends a worthy cause. I know that many of us are struggling financially right now and I know there are many causes out there to contribute too. But I am asking you as my friend to please donate any amount of money you can and walk with me, us, on Saturday, June 7th, 2015 at Hazel Ruby-McQuain Riverfront Park, Morgantown WV. Registration begins at 3:30PM. I am so looking forward to you guys being there, and again I’m not beating around the bush, I need your help and support, your money and support will help me and my “Crohnies” survive and find a cure! (I love these people more than you can know). Last get together the CCFA had they told us VERY big things are right around the corner! So join me, PLEASE I need you, join our cause!

Just Me, Josh

Hazel Ruby-McQuain Riverfront Park
Morgantown, WV
Saturday, June 7th, 2015

Registration Start: 3:30 PM
Walk Start: 4:30 PM

You don’t know how strong you can be until strong is the only choice you have.

Proud to have you on Grafton Gutsey,
Joshua E.

Don’t forget, all who raise $100 will join the Most Valuable Participant (MVP) Club and be recognized as an Awareness Builder! You will receive a Take Steps event, bragging rights, and recognition as a 2015 MVP. But it doesn’t stop there! Check out all the benefits of the MVP Club!


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