Before you judge me or anyone else with Inflammatory Bowel Disease, do your homework and get your facts straight!
Before you judge me or anyone else with Inflammatory Bowel Disease, do your homework and get your facts straight!
Life Changing Event Christmas Eve, December 24, 2008, the day had been a typical Christmas Eve; I went to work as usual nothing eventful. At work it was the norm except for waiting for the Central Supply Christmas Party, (steak, beer and good times with a money bonus) a very good time. After work the family and I made the usual trip to Moms for Christmas Eve, we only stayed till about 9:00 because we wanted to go to the First Baptist Church for service. Coach Orville Wright was the pastor, a former co-worker of Eva’s. A little into the service I started feeling bad but by the time it was over I was sick.Christmas Day I was sure I had the Flu. I still did all the festivities with my wife and children. Between diarrhea, throwing up, stomach pain and chills if someone would have ask me how I felt I would have told them I was dying. I was off for the Christmas Holiday from Thursday through Monday and I spent most of my time either in bed or the bathroom. YAY for me.Monday December 29,2008 I went to see my Dr, Carla Scharf, whom to mention is a very good friend. She confirmed I have the flu and to continue resting and I should be well in a few days. I went back to work on January 2 still sick, very sick. My Diarrhea had gotten much worse, and I was developing hemorrhoids that were painful to say the least. I pretty much sucked it up for a couple weeks, but gave in on January 12, 2009 and went back to Carla. She checked me out and said all is ok except the flu had changed to a viral infection. She explained with a viral infection there is nothing you can do, it could last anywhere from days to months. Carla gave me prescriptions for Magic mouth wash (painful blisters in my mouth) and cortisone suppositories for hemorrhoids. She was hoping this would help me with the issues coming from the viral infection. Hopeful and satisfied I continued with life.
During this time of year I spent a lot of time with children coaching basketball. This particular year I was coaching 3 teams, so I figured between work and kids I have no time for sickness. On Saturday January 24 I was coaching the Nuggets at West Taylor Elementary, and I was in so much pain that Eva had to take me to Medbrook after the game, again I was told I had a viral infection and to be patient. The Dr at Medbrook gave me a prescription for hydrocodone to help with pain, at this point I could not sit because of hemorrhoids, and couldn’t stand up straight because of stomach cramps. The diagnosis was still viral infection.
Sunday January 25, I was going to coach my Biddy Basketball team, the Pirates but the pain from the hemorrhoids and gut was so bad Eva and Brian Lough ended up coaching while I went to the emergency room at Grafton City Hospital. Dr. Abraham confirmed hemorrhoids, and mouth blisters and he would schedule me to see a surgeon, Dr. Franks on Thursday. (Also I started getting blisters in my eyes, under my nails and in my nose) Monday my friends Paul and Gordy made me a donut to sit on and let me sit in a regular office chair (during this time period I started missing work a lot). My co-workers were better and are better than good to me. By this time there is a lot of blood in my bowel movements, at on point during this week Gordy said “you realize you are bleeding badly”. Also during this time period I could not sit so Eva had been taking me to and from work, I had to ride backwards on the seat on my knees. Thursday January 29, 2009, Dr. Frank saw me at GCH Medical Center and scheduled surgery for the following Monday.
On Monday, February 02, 2009, at Grafton City Hospital 7:00am Nurse Ronda Cross admitted me through the ER for surgery. At roughly 11:00am Dr. Frank spoke to me in the recovery room and informed me that hemorrhoids were taken care of but were not bad, he also said however he saw signs of something else so he wanted to do a colonoscopy. The colonoscopy was scheduled for February 12, 2009.
February 04, 2009 it was a very bad day and evening, it was storming locally with our weather, very very windy. I had become so ill, weak and unable control my bowels that a few weeks earlier I moved out of the bedroom Eva and I share, and into Anthony’s room, also during this time I pretty much lost the ability to pee. That evening the pain had become so unbearable that I could barely walk the short distance to the bathroom. I made many messes that evening. As night came I was so tired but also in so much pain that I couldn’t get comfortable so I spent much of the night in the bath tub filled with hot water to relax me.
February 05, 2009 about 3:00am I had basically gone out of my mind with pain. I was doubled into the fetal position and trembling with pain, I began yelling and pounding on the wall for Eva. I finally got her attention about 5:30. Eva helped me get cleaned and dressed and took me to the emergency room.
Now at Grafton City Hospital emergency room I was being tended to by Dr. Villarozza. Dr. Wintsel over heard the others talking and came in said he thought he knew what my problem was. Dr. Wintsel works with Carla and they had been working on my case for a while. Dr V and Dr W talked a bit a decide to run a bunch of blood work, x-rays, barium x-rays, and a assortment of other painful tests. They thought I had diverticulitis. By mid-day I was admitted in Hospital to try to stop the diarrhea, dehydration and for observation. The next 8 days were enough to squash any self-esteem and modesty I had left. I was on IV only with 1 cup of ice chips a day. I took along with the saline solution I got ciproflaxen and flagyl by IV. I received pain meds by injection and mouth as well as several antibiotics.
Over the next 8 days my admiration for Nurses and Nurses Aids grew by leaps and bounds. These people are flat out awesome, when I would make a mess of myself and the bed, they would be to me in a matter of moments and take care of the problem. By the third day I had a potty chair by the bed, I didn’t always make it but it was a start. By the end of my stay I could make it across the room to the loo.
My Doctor situation.
Carla Scharf is my GP, but she is a PA, not a Doctor, so once I went to the ER I was pretty much without a doctor. Dr. Villarozza was the ER attendant, but Dr Wintsel knew about my case so he was considered my doctor, which was fine. However once I was admitted to my room I was informed Dr. Dave Bender would be looking after me as Wintsel was leaving for vacation that day, geez I’m confused. With my head spinning, Dr. Bender did a great job with me.
February 11, 2009 2:00pm I started the prep for my colonoscopy. Now this is my seventh day in the hospital, and other than trying to hydrate me the focus had been stopping the diarrhea. Now my Dr wants me to drink this solution to cause diarrhea, which is 1 gallon and tastes terrible. What??? And I have to drink this by 5:00pm. During the time I was drinking this stuff and while after, my friends Willie, then Brandon & Laurie McDaniel, then Paul & Paula Boyles came to visit me…. Boy if they only knew what was going on in my little diaper. With all said and done I was finished and in bed about 11:00, ready for probing in the morning.
Thursday February 12, 2009 I had had a restless night, nerves and a bit of fear about the unknown. Anyway as usual the Vampire came in to get blood about 5:00am, this guy really gets on my nerves, he hovers over you poking you saying, ”I know, I know”. This guy doesn’t have a clue what it’s like to be sick and woke up just to be stabbed. Nurses and Aids began to prep me for the Colonoscopy about 6:00am. They wheeled me so the surgery dept at about 6:30, waited there about an hour.
Roughly 10:30am I woke up in recovery, Dr Frank was trying to explain what he saw and did, but I was incoherent still at this point. He told Eva about it all and later that day she told me. They said I had a chronic illness called Crohn’s disease. Or at least they were 90% sure this is the problem, it could be ulcerative colitis, but they were leaning Crohns. I had never heard of this illness so I didn’t know much about, but I figured it had to be bad. My friend Sarah Craig pretty much spent the night researching and explaining! Anyway, back in my room they stared me on flagyl, imuran and massive doses of Prednisone. Now as strange as it sounds but after more than a week with no food, hospital jello is the most wonderful thing in the world.
Friday February 13, 2010 couldn’t sleep a wink, I was all pumped up from the Prednisone. I was up pacing the hallway by 7:00am, and man was I hungry. By 7:30am they brought me breakfast, real food it was wonderful and I had seconds. Dr Bender stopped in and told after lunch and paperwork I could go home. YAY me. I got to leave at 2:15pm 84lbs lighter than February 02, 2009, so glad to be going home.
Home From The Hospital
Wow what a ordeal things have been, never thought I would ever endure such a calamity. Now being 1-1/2 months into feeling worse than I ever thought I could feel I’m home and trying to learn as much as I can. I’m sure the Prednisone played a factor, (Prednisone is the drug straight from Hell,) but I would cry at the drop of a hat. It was generally things I was learning about my condition, but almost anything could and did make me cry.
The Dr’s still were questioning what they had found and were treating me for Crohn’s/Ulcerative Colitis, plus diverticulitis. Dr. Franks thinks it is Diver, Carla and Dr Bender thinks one of the two IBD’s. As crazy as it sounds I was horrified that I may never get to eat tomatoes again. Geez. Anyway my work place was very good to me and put me on Low Earnings till I could return, thank you Central Supply. They treated me how a company that cares about their loyal employees should.
Ok, back to my medical condition I was still in terrible pain, my gut would not let me stand straight up and my rear was so inflamed I couldn’t sit at all. I was still having trouble with leaking, especially when I would stand or walk. Actually I found I had the least problems if I lay on my right side knees drawn up and a pillow between my legs, for some reason this relieved my stomach pain and minimized the leaking. I love my Depends.
Roughly two weeks after coming home from the hospital I started feeling somewhat better, blisters in my mouth, eyes, and nose were clearing up and I could stand better. I have been living on chicken broth, popsicles, and jello. Let me tell you the low residue bland diet is just that, bland!!!! By this time I was starting to add a little routine in my life. I would get up about 7:00am make a small amount of Cream of Wheat for breakfast, eat then rest for a bit. Around 10:00am I would gather dirty laundry and start them in the washer, after which I would rest. Resting as I mentioned was laying on my side. About 11:30, I would fill the tub with as hot water as I could stand and then I would soak for about and hour. I always made sure to be laying on the bed in time to watch the Andy Griffith Show, it was a high point in my day. After Mayberry was over I would call Paul, Gordy and Willie and chat a bit, Paul would always read me some Scripture and pray. This call was another high point in my day.
As bad as I felt still, I did try to be helpful to Eva by doing small things around the house. After my call to friends I would put the laundry I had washed into the dryer and if needed start another load to wash. Then I would do the days dishes that were piled in the sink, there weren’t usually many cause eating was sporadic, late winter and early spring is a very busy time around the Robinson home!!! Basketball season was coming to a close, my team, the Nuggets at West Taylor was having a great year(we only lost 1 game) but my Pirates were having a bad year. The Pirates won only two games, even with that I love my kids and they learned. Learning at this age is what it’s about. All thanks goes to Eva whom pretty much took care of my teams when I was too sick to be there.
As agreed upon months earlier Anthony Forte and I agreed to pick up the other as assistant coach if either of us got to coach the All Star team. Anthony won so I am the assistant. The first couple weeks of practice I wasn’t quite up to snuff, so again Eva filled in. There were times early in my illness Eva was skeptical but as always she came through and I could not have made it without her. Grafton All Stars, 9-10yo, are some of the finest and most willing to work together boys I have ever encountered. They were there to play and felt privileged to be there. Awesome kids.
In early March 2009 things were improving for me at a steady pace, I however still could not sit because my rear was still very sore. On this particular day for whatever reason that I can not remember ARob was not in school and I was so tired of standing or lying I decided to try the recliner. I figured if I jumped in and kicked it back quickly it would not hurt as bad because the pressure would be on my lower back, and it worked. It was so very nice to sit, almost euphoric. I sat there and watch a couple hours of TV, Anthony would come in and check on me time to time. Around noon or so Anthony ask if he could go outside, so okay. I could hear ARob having a good time and it made me happy. After a while I decide to get up our of the chair to make Anthony some lunch… Hmmmm I wasn’t strong enough to push the foot rest down, nor was I strong enough to climb over the side so I sat there thinking Anthony would come in soon. NOT!!! After about 30 minutes I decide I would try yelling for him, and eventually he did hear me and came to the rescue, I decide sitting was still out of the question.
Dr visit after Dr visit, things are moving so slow, I was feeling like I was on fire all the time as Prednisone makes you roast, let alone your head swells like a balloon, I looked like one of the chipmunks. Carla my GP was in over her head with this illness, she scheduled me to see a GI. I realize in America all things are available, but for any kind of specialist you have get prior approval, pay up front and or jump through hoops. Also these specialists are so few that you may have to wait for months to see them. So it is still early March 2009 and an appointment to see my GI was made for mid April, I was told basically I would just have to suffer through until then. Although Carla was in too deep she was doing a wonderful job, she had me on the Pred, Imuran, and Hydro’s for pain, so we were going the right direction.
All Star Basketball was doing really good and all were having fun. Late March to early April (can’t remember) we travel to Buckeye Ohio for a tournament. We played a team from Ohio, one from Parkersburg, another from Ohio, then good old Fairmont WV, beating all. So we waited to see who would play themselves out of the loser bracket to be in the championship game against us. It was Fairmont. I couldn’t believe we drove three hours to play a championship game against a team that was 17 miles from home. Fairmont won, so since we had beaten them earlier there had to be another game. It was going to come down to the team with the most stamina. This would be our sixth game and their eighth game of the day, so who has stamina. Grafton All Stars prevailed 34 to 22, yay. I still find it insane we drove 3 hours to eastern central Ohio to play Fairmont, WV. three games of basketball in a championship tournament.
April 2009, Went back to work on the 6th as a birthday present to myself. Still after several months of this my “team” was not 100% sure whether I had Crohns or not. Before ever meeting with or seeing the guy, Carla scheduled a appointment for colonoscopy by Dr David Ciarolla. Dr Ciarolla did the colonoscopy and scheduled a follow up to go over the results and work on my long term care.
Dr. David Ciarolla, the exact date he saw me I can not remember, sometime mid April 2009, however he introduced himself to my rear before my face. Not really but it did feel that way. After my initial visit to his office he gave me some new prescriptions and drastically upped my dose of prednisone. Meds to treat IBD are really bad, most cause cancer. Prednisone is plain evil, it is the itchy, bitchy, eat everything in site, gain extreme amounts of weight, sweat like a pig, bone damaging drug with a moon face in every bottle. He also scheduled another colonoscopy, mentioned in the paragraph before.
Immediately following my procedure, he talked to me, but because I was groggy he talked to Eva and explain I have Crohn’s disease and lifelong incurable condition. At this point he diagnosed me with severe Crohn’s and although I had greatly improved there was still much improving to be made.
Through all this I was determined not to give up on the things in life that only come around once, I continued on. Baseball season was in full swing, (pun intended) coaching in depends was a big struggle. I relied heavily on Eva to help me, and also the other coaches. Dave Lambert the team manager was working a bunch so I had by his wishes, assumed role of manager when he was not around, we spent most of the season 1 coach short. Dayton Mayle and Eric Hess did all the practice and pre-game pitching and hitting to the kids. Michele Mayle kept book for me. My Athletics were pretty dismal that year, we went 3 and 18, oh well, the kids had fun.
After the regular little league season is tournaments for minor league and All Stars for Little League. I did not coach any All Star Teams during this year, but I did help out in anyway I was needed. Anthony played on the 3rd 4th grade team, this team was special. They were undefeated in pool play, district 5, regional pool play, regional, and were 2 and 5 in the state tournament. I’m pretty sure at the states they had just gotten tired of always playing baseball. It had been 9 years since any team from Grafton was that successful, and there is a sign now at the Little League Field to commemorate their run.
As a member of the little league board, I was obligated to help and be at the Minor League machine pitch tournament. My main chore was to keep the restrooms clean and supplied a task near and dear to my heart… I also umpired first base a lot. Now realize I was still pretty sick and still had a lot of incontinence, so we are not talking large amounts usually, however…. During one particular game pants were filled, luckily it didn’t smell, was near the end of the inning and none got out of the diaper. At the end of the inning I made my way off the field, grabbed my supply bag, head for the rest room and Sam Shahan remarked I must be getting old by the way I was walking. Little did he know I was doing the poopy pants walk, that made a embarrassing moment much easier.
Gross Painful Disgusting and Painful Things
September 2009, Dr Ciarolla had been trying for several months to get me on a specialized drug, Cimiza. Cimiza is a drug in the class of biologic, very potent to suppress immune systems in the presents of Arthritis, RA, MS, and IBD. For what ever reason WVPEIA will not authorize Cimiza for IBD, Dr Ciarolla became very frustrated, so he tried to get me approved for Humira, same class of drug, same result as Cimiza from WVPEIA. Our insurance company said we had to try everything lesser than these first, I was already on mega doses of Prednisone and Azathoripine; both are very bad in long term use. In Docs aggravation he admitted me to Fairmont General as a emergency patient and started me on another Biologic Drug approved by WVPEIA for emergency use in cases of IBD. The drug Remicade began clearing me up, but was gross in nature since it is made of cultured mouse urine. Also no transfusion site available to Doc, it meant I had to be admitted as an emergency patient to FGH so I lost Friday and Saturday every other weekend for a few months.
During this time, September 2009 I began having pain and itching on the lower right side of my crotch, the itching was enough to drive me mad. There was also a long lump, about the size of my index finger at the same spot. Thursday September 10 I called Dr. Ciarolla and told him about it and his said for me to keep an eye on it. Friday The thing went crazy, it swelled up huge and spread from basically my rectum to my naval. After work it was itching so bad I couldn’t stand it so I guess in scratching I caused it to bust. Fortunately I was schedule to go to FGH for my overnight Remicade, so off I go. When I got to the ER I found out that Doc forgot to call, so slam, down on the gurney and into the ER I go. Since they didn’t know I was coming I was being treated as a emergency patient, 2 iv’s 3 pain killer shots, everyone looking at my hinny and some sticking their fingers in. I respect ER doctors, but this was a night mare for me. After about 3 hours Doc Ciarolla got there, apologized and straightened everything out. Doc checked me out, got me in a room and came in to explain I had a fistula. He also told me he was keeping me all weekend for the Remicade, antibiotics and Sunday they would do surgery to drain the fistula.
By now I had became quite use to hospitals and was on first name basis with much of the staff at Fairmont General. Some of the aids and nurses would come in my room time to time just to visit, nice people. Saturday nothing but ice chips again, I guess they don’t want to work on a loaded Crohnie. I also was hooked up to saline solution, Flagyl and Ciproflaxin and since I was in the hospital pain meds by injection instead of by mouth, YAY, no pain, no pain.
Sunday morning about 7:00am Dr Franks came in and explained the procedure and that they were going to place two temporary drains into the fistula to speed healing. Placement was very concerning to me, I mean this thing already hurt badly, but it is what it is. One drain was placed about 1-1/2 inches in front of my rectum and the other just beside my right testical. I went to surgery about 8:30 am and was back in my room by 10. I really didn’t wake completely up till about 1:00pm, they use good knock out drugs. When I did wake up it felt I had a football between my legs that had been soaked grease. Dr. Ciarolla and Dr. Franks were having war over letting me out and thank goodness Dr Ciarolla won thank goodness. At roughly 5:00 a nurse came in to change my dressing and teach me how to do it. This is one of the times that really make me admire these folks because how gross there job can be. She was very gentle and extremely understanding at my embarrassment. Once I was repacked I got dressed and Eva took me home.
My wife Eva over the past few years has really been put to the test. While I was gravely ill before my diagnoses I was very weak and lost almost all ability to control my bowels. Eva most of the time was more than gracious with dirty wash clothes, towels clothes and accidents on the floor. There were times she was in denial and or grumpy, but not knowing what was happening and wrong with me it is very understandable. Eva never told me, but I believe she was very frightened that I may be contagious or dying. After the fistula drains for about two weeks she had to pack and bandage the disgusting wound, and the next 8 months she carried everything over 5 pounds. I am very lucky to have married this wonderful woman.
Two years and five months into this dreaded illness, many accidents, extreme weight loss, extreme weight gain, sever cramps, blisters in my eyes, blisters in my mouth, under my nails, in my nose, dry sores on my skin, fistula’s, countless colonoscopy’s and terrible never ending joint pain here I am and I’m still here. I currently take 220.5 pills a week including supplements, a biweekly Humira injection and once a month B-12 shot. I have very vivid dreams and nightmares, I fall asleep at the drop of a hat, then can’t sleep when I should. My latest colonoscopy, although I’m still in lots of pain and discomfort, I am very close to remission and for that I am thankful, and I am still here.
Josh Robinson 12/20/2012
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