My Medical History
I suffered from a lot of stomach pain, back pain, joint pain and lost about 15 pounds due to running to the restroom about 15-20 times a day. (I don’t know if it was the running to the bathroom or what happened once I got in there that caused the weight loss) My family doctor, at that time, told me I was depressed and needed Prozac. I’m pretty sure that’s right around the time Prozac was just starting to make it big. The family doc was a quack so I went to a specialist. The specialist told me I had Irritable Bowel Syndrome and needed to eat more fiber and scheduled me for a sigmoidoscopy...ON MY 18th BIRTHDAY! Everything came back normal so I was again told to eat more fiber and decrease my stress. I quickly found out fiber made things worse and decreasing my stress just really wasn't an option. I swore I would never see another doctor again and was determined they were all secretly plotting my death. (I may have been a bit of a drama queen in my late teen years.)
I continued to get sicker and sicker and was taken – kicking and screaming by my mother - to a new specialist. The new specialist did many tests but everything came back normal, again, except for one blood test. It showed an inflammation/infection rate of seven times the normal rate. Why? No one knew but they had to find out so I was scheduled for surgery. During surgery they found out my colon was not in the right place – instead of looking like a question mark it looked like a backwards K. Once that was put into the correct position in my abdomen they found that I had about 3 1/2 feet of severely inflamed small intestine that had been covered by the misplaced colon – hence the negative results on all the X-rays. The final diagnosis – Crohn’s disease
1995 – 1996
My first taste of life with a chronic illness – at least one that had a name – came during this first year. Lots of different medications were tried (Prednisone, Pentasa, 6-MP, Methotrexate, Bentyl, Flagyl, Cipro, Elavil, Tramadol, Vicodin, Darvocet just to name a few) and at one point I was taking 48 pills per day plus shots of Methotrexate – a mild chemotherapy drug. Aside from the horrible side effects from Prednisone life had gotten a little better but not enough better. I was back in surgery almost exactly a year from the date of my diagnosis to have a foot and a half of small intestine and the first part of my large intestine removed.
1996 – 2007
The next nine years consisted of me going back and forth between remissions and flare ups and on drugs and off drugs to try to control my guts. My restroom usage never was less than 3 to 4 times a day. The urgency was always an issue and not being able to “hold it” was a big concern. This was mostly attributed to the removal of intestines and I just had to find the right balance of Imodium to help. However, during these difficult years I did manage to meet and marry my husband. I learned to live life regardless of Crohn’s and learned how important it is to plan ahead. Of course I only realized this was a good idea AFTER I ended up having to use the restroom while stuck in a 2 hour dead stop traffic jam. Luckily I was with my husband and mother-in-law and she had some paper towels and bags in her car. And we were surrounded by semi trucks so no one saw me do the deed in the car. Embarrassing – yes. Funny – it is now. Memory I will have forever – absolutely. Breaking in my mother-in-laws brand new car – PRICELESS!!!!
I prepared to have a total hysterectomy during the summer of that year. I was informed the surgery would be complicated because some additional pre-op testing showed that I did have active Crohn’s and I may come out of the surgery with less intestine and/or a ostomy of some sort. I was totally prepared for that. No more running to the restroom with fear of not making it there quick enough AND no more cramps and periods every month really sounded good to me. The hysterectomy went wonderfully and I came home and never had another problem with my stomach. My Crohn's didn't interfere with the surgery after all, and I didn't need an ostomy like originally thought. I felt great and things were looking up. Until I needed my gall bladder removed in June of 2008. But that was gall bladder issues and not Crohn’s.
I started having some stomach pain and my restroom issues seem to return; complete with urgency, waking me up out of a dead sleep and the identifiable food that leaves my body no sooner than I can swallow it. Active Crohn's was found and Prednisone was started yet again. Right around this time is when this blog began. I survived this flare up of Crohn's and have pretty much chronicled every major medical issue that has happened since.
2009 - 2011
I have had trouble with pancreas divisum and pancreatitis in the past years. I was treated at Indiana University/Purdue University Gastrointerology Department for this in 2010 and also spent some time at my local hospital for pancreatitis. My family doctor and nurse practitioner also diagnosed me with Fibromyalgia and sent me to a Rhuematologist who agreed with their diagnosis. I have Vitamin B12 and Vitamin D deficiencies and fat malabsorption problems as well. Through all of this I managed to go back to school and get my state license in Practical Nursing! I'm a BEAST!
2012 - 2014
Every day I still have some kind of pain. I have chronic diarrhea that will never go away and can only sometimes be slowed. This keeps me running to the bathroom all hours of the day and night. I am depressed a lot but I really try to stay positive. I know things could be worse and for a lot of people with Crohn's things are worse. My life has been turned upside down from all of these complications from Crohn's disease. But, I have a lot of faith in God. I believe that He makes all of these circumstances work for good somehow. Okay, most days I believe this. Some days, it's just really, really hard being me. But I have to laugh. Because without laughter I can't do this!
I use this blog as an outlet, a timeline and a personal journal. I want to help others realize what it's like for people like me. I also want to help others with IBD know they aren't alone. I'm here, I'm your advocate. I care and I honestly understand your struggles. And I want to make you laugh. Shannon Doherty was quoted as saying she doesn't talk about her Crohn's disease because it "isn't sexy". (Apparently breast cancer is sexy to her because she has no trouble chronicling her story about that on social media.) She clearly doesn't know me. We with belly trouble all know pooping is damn sexy! We make this look good!
2014 - 2015
I worked as a Hospice Nurse one day in 2014. I had to stop working due to being sick. I made the decision to file for Social Security Disability. So far I've found this to be a huge mistake but I am in too deep now. It's late in January of 2015 and due to my not being able to work we have lost our house, we've had to file bankruptcy, and my husband works very hard but he makes barely enough money for us to survive. I have lost a lot. I feel nothing but guilt and shame and the depression that comes along with that is the nasty kind that makes me want to end my life every single day. I've lost a lot of my positiveness because there just isn't any. Social Security is not coming through. Bills are piling up. Doctors still cannot help me. I'm very slowly dying because my own body hates me. But I want to write. I want to help. I want to find happiness again. It's time to rebuild.
In November 2015 I was finally approved for my Social Security Disability. It took several months for the payments to begin - like 5 more months - but it has really helped my family financially. I'm very grateful. I'm still trying to figure out what can relieve my pain and diarrhea, though I mostly just live with it. Not having to work allows me the opportunity to stay very close to the bathroom at home. We've even taken to going to the grocery store in the middle of the night as to avoid crowds and I really don't leave home unless it's of major importance. Our daughter has graduated high school and will be starting college this fall (2016). I'm so proud of her. Life seems to be going along regardless of how much I want it to slow down. I'm hoping the bulk of the dark days are behind us and I've settle into a new normal of not sleeping much and not doing much because of the never ending insomnia, continual diarrhea and pain. But at least we have a roof over our heads, food in our cupboards and laughter in our hearts. That's all we need anyway, right?
Summer of 2018 - Present
Situations outside of my control caused me to leave my home and have a go at life on my own for the first time since I was newly diagnosed with Crohn's disease. But for the sake of my mental and physical health this step was absolutely necessary. It's a struggle and it's scary and all the healthcare I need is a huge concern. Social Security Disability really isn't much to live on, especially when there are doctors, medications, tests and treatments that come with the territory of having problems that qualify you to be on disability in the first place. It really doesn't seem fair. However, I have gathered every ounce of inner strength I have and I'm doing it. I've lost a lot - again. I have to rebuild - again. But it's time to focus on my health now. So that's what I'm doing.
Thanks for reading.