Memoirs of Living With an Asshole Or How I Was Rear-ended by Ulcerative Colitis, J-Pouchitis, and the Medical Profession by Tippy Casey - Read Online
Memoirs of Living With an Asshole Or How I Was Rear-ended by Ulcerative Colitis, J-Pouchitis, and the Medical Profession
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Tippy Casey writes of a long personal battle with IBD. It is described through journal memoirs, emails, and other various communications made throughout the fight.

Published: Tippy Casey on
ISBN: 9781301510467
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Memoirs of Living With an Asshole Or How I Was Rear-ended by Ulcerative Colitis, J-Pouchitis, and the Medical Profession - Tippy Casey

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Memoirs of Living With an Asshole

Or How I Was Rear-ended by Ulcerative Colitis, J-Pouchitis, and the Medical Profession

By Tippy Casey

Published by Tippy Casey at Smashwords

Copyright 2013 Tippy Casey

Smashwords Edition, License Notes

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you’re reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

I wrote this book first and foremost as a catharsis for myself. I wrote it secondly for others who are suffering from inflammatory bowel disease or another major, life-altering illness. Inflammatory bowel disease, in particular, is such an isolating sickness. It is not socially acceptable to talk about the details of your suffering. After all, people would think you were crass and disgusting to discuss this, especially over coffee or the dinner table. Other illnesses don't come with that note of grossness and are far more acceptable to discuss publicly.

I want people who are suffering with this to know they are not alone and to hear stories similar to their own. Somehow when you are going through it, hearing another person's similar struggles helps to reassure that you're not some enigma. It can also be comforting to know that you're really not crazy or overly sensitive or a nagging complainer.

Just as important, I want to emphasize that you must be your own advocate! Do your research. Don't go along blindly with what the doctors tell you. They often know less than you, especially if you've been doing your homework. Or they may seem to know a lot, but it might only be a lot within the finite world they've been working in. Listen to your body and instincts. So many times, I knew something was going on way before the doctors detected it. Or I knew they were diagnosing incorrectly even though I didn't know what the correct diagnosis was. So much of my trouble could have been avoided if I had been more insistent.

And if anyone who doesn't suffer from a form of inflammatory bowel disease cares to read on after the first pages of descriptive content, my wish for them is that they come to understand the devastation these diseases bring. It is far more than just some cramps and extra runs to the bathroom. People with this disease suffer in total silence in ways others can't begin to imagine. It's time we break the silence and let the whole shitty mess out from behind closed doors.

I gave birth to my first child six months earlier and was experiencing the happiest time of my life. I loved being her mother. Other than a miserable, nauseated nine month pregnancy, I’d been a healthy, fit woman. So it was a bit shocking to suddenly see a little blood on my toilet paper. It happened a few times, but otherwise I felt fine. Soon it went away and so did my concern.

Again, 6 months after the birth of my 2nd child (2 years later) I had the same bleeding symptoms. I was feeling perfectly fine, not even hemorrhoids from natural childbirth. But I knew blood could be a sign of colon cancer and decided I would look into it more responsibly this time. My internist did a proctoscope and sent me to see a gastroenterologist. After a horribly uncomfortable sigmoidoscope in his office, the young specialist declared I had proctitis.

Most likely hormonal shifts taking place in my body at that point after pregnancy caused a little flare of a disease to which I was genetically predisposed. My mother had ulcerative colitis all her life and her father died of colon cancer.

The doctor chose to aggressively treat my bleeding. Probably if he had left it alone, it would have disappeared just like the first time, never having bothered me. But no. This was the beginning of what I believe was a man-made disease process. I will always, always blame the doctors for ruining my life.

1986 – Age 31

It was 1986 and there was probably not nearly the number of drugs available to treat ulcerative colitis as there are today. But there were some. Despite the fact that I had no symptoms, the doctor put me on prednisone, a drug I now know should be only as a last line of defense. It was the beginning of the end. My body became immediately steroid dependent and whenever we started to wean off the drug I’d experience inflammatory bounceback.

The first time we began weaning off the drug, the proctitis was suddenly worse than when I started and I felt sick for the first time. We had to up the dosage of the prednisone. The frustrating yo-yo syndrome began, and each time we’d lower the dose I’d get sicker and have to go back to an even higher dose. I went from feeling perfectly healthy to massively sick in less than two years. Every time I’d try and wean off the prednisone, my body would rebel by becoming inflamed. I now had full blown inflammatory bowel disease. I am convinced to this day that if he had left things alone or treated me with a more benign drug I would have been fine. Just like after my first pregnancy, it most likely would have quickly resolved itself.

I changed doctors, but it was too late. My body was trapped and ensnared. This damn medication literally brought on the disease.

Life quickly spiraled out of control with a horrific list of side effects from the prednisone. As a young mother, it was becoming difficult to play with my kids the way I liked. Being in loud environments gave me heart palpitations and panic attacks. So I found myself hiding away at all the birthday parties. My face was so blown up (cushionoid), but my body was small from the neck down, that a stranger on the street actually came up to me and asked what was wrong with me. I was devastated. I just wanted to run away and hide and be a mother to my kids again.

I now started trying all sorts of heavy duty drugs hoping they would control things so I could get off the prednisone. No such luck. I was living on 60-80 milligrams of prednisone per day. Even more when I had to go for I.V. treatment in the hospital for two weeks. I was forced to miss my grandfather’s funeral because of the hospitalization.

Here’s a little log of an initial day at a major, highly respected hospital when going in for I.V. prednisone treatment as a result of major uncontrolled flare-up.

•Check-in 2:15 pm

•4:30 taken to room. No one comes in to acknowledge me till 5:30.

•Had to ask to be fed dinner. Brought 1 tablespoon of chicken salad with raw cucumbers, lettuce, grapes, orange, whole milk. They can’t seriously think this is an appropriate meal for a person admitted for severe inflammatory bowel disease. No one does anything to rectify.

•Tell doctor, nurses about dietary needs. Dinner tray left all night.

•I.V. in wrong. Kept complaining, but told it’s okay. Not fixed till 11am the next day after arm already quite painful.

•Loudspeaker all night. Impossible to sleep.

•First thing in morning ask to speak to dietician to make meal arrangements. Nurses, doctors reassure me that they’re asking. Breakfast is bacon. Dietician never showed. I took walk to see her. She was very unhappy that I bothered her. All I needed was to know how best to handle my meals. Not a big deal. But important for my care.

•No one comes in all day to my room. Not even an ice-water check.

•No one ever flushed I.V. midday. When ask about it at 8:30pm, told it was recorded as done.

•Dinner trays not pulled over bed. I have to pull up floor rail on bed to fit it. No one collected tray again.

•Screwed up doctor’s prep orders for colonoscopy. No one checked me properly before going.

•Kept sending liquid diet after colonoscopy for dinner and breakfast rather than solid food.

•No water.

•No clean gown.

There’s a Cure

Life was really sucking. Some of the drugs I was on were dangerous immunosuppressants and I began to feel that the medicine would kill me before the disease would. Doctors began telling me that with this kind of inflamed ulcerative colitis I