Relationships, Caretaker(s) and Crohn’s: A candid interview with my husband

Source: Relationships, Caretaker(s) and Crohn’s: A candid interview with my husband

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Not Cool

Doctors and nurses ran frantically into and out of the small room I found myself in. I had never seen such organized chaos from my place in the hospital bed. Little did I know it then, but I had just traveled the longest, most expensive 50 miles, by ambulance to the nearest hospital. In weeks […]

via Dude, Not Cool. — Crohn’s Anonymous

Angry

Angry

This is just a little note talking/explaining one of many emotions myself and many of the folks in the I.B.D. community feel. It’s very hard to have a disease that was caused by a defect in a persons genetic make up, a disease we did nothing to get except for being alive, a disease for which there is no cure or explanation, a disease where frequently when you ask your doctor a question they reply with a “I don’t know”.

Yes I am angry, in fact I’m mad as hell. Why am I angry, well because of all the stuff
that happens to myself and my friends that have Inflammatory Bowel Disease.What does it do, well first of all I.B.D. is a very painful disease, very painful. There are days that I am so sick and in so much pain that it is a major accomplishment just getting out of bed and dressing ones self. If you make it to work while you are pain you are generally miserable.

I am angry because of the many gross and disgusting things that have happened to me such as soiling myself, or having to stop along the road to prevent soiling myself. The nausea and puking are just miserable, nausea is a new symptom for me. Then there are the fistulas… A fistula is extremely painful and terribly gross. What they are or in my case,is an abnormal tube that begins in the rectum and comes out elsewhere in the crotch. A fistula drains fecal matter and puss 24 hours a day year round.

Angry yeppers, I am angry because this disease p aces so many limitations on my life and the lives of my friends with Crohn’s or ulcerative colitis. Limitations caused by uncertainty that I can find a loo quickly enough in public, limitations caused by severe joint pain. Joint pain that greatly impairs things I want to do such as playing my guitar or work my garden.

I’m bitter that I cannot have ice cream, angry that I can’t have salad, frustrated that I can’t eat popcorn or any corn products period. It’s tough to be woke up several times a night with need to go to the toilet or with leg cramps so severe the only way to calm them is to sit in a tub of very hot water. It’s very upsetting when someone say things like”But you don’t look sick” “I wish I could loose weight and eat what I want” “I think it’s all in your head”, “I understand I had the stomach flu/IBS once” BTW IBS is nothing like I.B.D, IBS does not cause permanent damage.

Yes this is a complain session because I’m angry.

I don’t like the road Crohn’s disease has put me on, it has unleashed the world of auto immune on me and that makes me angry.Since becoming ill with Crohn’s I’ve contracted several other auto immune diseases. I have Crohn’s related RA, enteropathic arthritis,eye problems and most recently Ankylosing Spondylitis. I really hate what Inflammatory Bowel Disease has done and the pain it cause my friends that have it. It is not a fair disease I/we did not ask for it and did nothing to deserve it, so yes I am angry

Josh Robinson
04/06/2013 Continue reading

10AM or so three years ago yesterday

03/26/2014

 

Around 10:00am or so I am extreme pain with uncontrollable nausea, vomiting and pain, I have been through much but never anything like this, it owned me. By lunch time, about 11:00am I had regained myself enough to do my job. Sitting at the sales counter doing my sales job and watching Saffle eat, I was sure I had either passed kidney stones or the were on the way to passing. Hmmm… I ate my small burger patty and cup of mashed potatoes, and continued working uneventfully (other than nausea) the rest of the day. At 4:00 we packed the store up and it was time to go home. I noticed walking across the parking lot I was more than slightly bent over in pretty significant pain and exhausted. Homeward bound I go with two stops to throw up.

Once home and in the house I told my family I was in some pain and was going to soak in a bath tub full of hot water. I went upstairs and got in the tub for a nice soak. I noticed while lying there I was in severe pain, the pain was not letting up and I was pretty light headed. Usually a good soak helps with my belly and joint pain but not this time and it was actually getting worse. I got myself out and dressed to go to Anthony’s basketball game in Philippi. Eva notice I was leaning over and ask what was wrong, I explained my day to which she told me not to go to the game, and after a brief banter back and forth I agreed to stay home.

5:30pm

So I’m home alone and I decide for whatever reason to lay in the recliner and watch the evening news. This is pretty significant because I never watch TV in the living room and I had already taken my phone upstairs to the man cave to charge. As the news was on I became very sleepy, rolled over and closed my eyes. I rolled back over noticing the news was off and I had to pee really badly. As I stood up it felt as if someone kicked me in the groin and punched me in the gut at the same time. The pain was so intense that I fell to the floor, very frightened I got myself up and then crawled up the steps to get my phone. I called my Mom, explained what was happening and ask her to send Tiffany or Stevie to take me to the ER. I gathered myself and went down to the street to wait.

My son Stevie picked me up and we made the short trip to the ER at Grafton City Hospital.

From this point on this are fuzzy!!!

Now me being from Grafton my whole life, I know everyone but the only person I remember for the next several hours is Beth Kochka, this is because of the pain and pain meds. I go in the ER and they put me on a gurney, pretty soon my boy Steve and daughter Tiffany appear, Stevie had been out checking me in. The Doc orders blood work, IV’s, X-Rays and then a CT scan. First thing is my white blood cell count is through the roof, I never did hear about my X-rays or I don’t think I did. The CT scan showed three small, they said “micro perforations” in my colon and they were leaking into my abdomen. Ok now we have emergency, bowel perfs can and frequently do cause people to go septic and die rather quickly, I am scared. By the time we get to this point, about roughly, guessing, hour and a half in the ER I’ve had three shots of Demerol so I have major brain fog!!! At some point my wife, Eva appears, she had taken Anthony to Philippi to play basketball, I love watching my little play ball so even in my current situation I felt cheated.

Ok so myself, care team and family started working on a plan. There are only four people I trust completely with my life, David Bender, Carla Scharf, David Ciarolla and Charles Frank. This situation was up to Doc Ciarolla and Frank. So it was time for a wonderful ride with Taylor County Emergency Squad. Mark tended to me in the ambulance, my pain was utterly unbearable. Thank Gods for the docs and dispatchers the he was able to give me two shots of morphine…

11:00PM or so

Joshua E. Robinson

joshuaerobinson

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

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…

View original post 1,015 more words

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.