In one day, my entire life changed.
Friday afternoon, October 12th, it was just after 1:00pm and I was expecting my home health nurse. She was coming to do an exit interview. Little did I know that she would be saving my life that day.
I spent the week moving the guest bedroom downstairs and my office upstairs so that I could make my office a gym. My gut was telling me I should have a bedroom downstairs, especially because my first week home from the hospital I struggled to walk up the stairs just once a day.
Each day I could feel myself fighting to get through. Struggling to breathe, and my muscles were shaking. I kept pushing myself to continue physical therapy and figured I needed to regain the weight and muscle that I lost after being in the hospital for 10 days.
When my nurse arrived, she asked how I had been doing. I told her I was fine and that it was a rough day and I was waiting to turn the corner. That’s how I would refer to my bad days, “waiting to turn the corner.” As I sat there on the couch, she kept asking me questions. I kept changing positions, trying to lay down, leaning to my side but I just couldn’t get comfortable.
As she kept talking, I was struggling to answer her. I was extremely weak but trying to smile and be polite. She grabbed her phone and said, “Something isn’t right with you I’m calling your doctor.” She called my doctor and left a message saying to call her back immediately. Then she called her supervisor to tell her she was concerned because I didn’t look right. I was weak, had tachycardia and shortness of breath. All symptoms that I normally had on bad days, but I was trying to tough it out.
After spending about an hour with me she said, “I’m so glad I came to see you because you just don’t look right. I’m going to keep calling the doctor until someone calls me back. If you don’t hear from the doctor by the end of the day, go to the ER.” I’m sure my chronic illness buddies know that we do whatever we possibly can to avoid the ER. Too much incompetence and lack of knowledge.
5:15pm the phone rang, it was my gastroenterologist. He said that I needed to be admitted right away. He arranged for a room to be ready for me when I arrived so that I wouldn’t have to go through the ER process. I packed a bunch of stuff, with the hopes I would be home in a day but I had a gut feeling that my life was about to change.
For the first time ever, after doing several blood tests they were coming back outside the normal range. They came into my room every hour ordering more and more tests all night long. The entire time that I’ve been sick my blood work has held strong, so I knew something was wrong.
They had me consent for a blood transfusion and started to give me fluids and potassium chloride. They also brought potassium pills in and wanted to give me steroids.
Many years ago, I had a severe psychosis reaction to prednisone. It is listed as an allergy and only to be used in life or death situations. The doctors knew this and were still pressuring me to start them. I was concerned but I stood my ground. They needed to figure out another medication and they did. A steroid that the hospital couldn’t get for two days so I immediately offered for my kids to pick it up if they could find a pharmacy that had it.
I started the medicine on Sunday afternoon, along with a rectal suppository. The goal was to stop the bleeding, it didn’t work. I asked for a consultation with the Surgeon to remove my colon and they tried to persuade me to go on Biologics. I listened so that I could make an educated decision but by the time Monday rolled around I had been waiting 3 days for the surgical consult and still, nobody had come.
There was an entire team of doctors in my room and I finally put my foot down. I was so sick and tired of hearing about the biologic medicines and told them I only considered taking them to appease them. I want to be educated about the surgery and know what my options are. During my last hospital stay, just a few weeks prior, the doctor said the disease was severe and I was a candidate for surgery. They avoided getting me the consult during those 10 days.
I told them that I’m not leaving the hospital until I meet with the surgical team. Finally, they arranged it and the doctor came to meet with me. He walked in the room, grabbed a chair and pulled it up to my bedside. Sat down, crossed his legs and put his hands in his lap, just like my dad would do. The whole day I was praying to please have the surgeon listen to me and at that moment, I knew my prayers were answered. He said, “tell me about what you’ve been going through.” I explained the last 8 years to him and that I was against the medications because my situation is complex. I told him I’m afraid now that if I start the biologic that I will get worse just like I did with the other medicine. Plus, my immune system will be suppressed. I won’t be able to fight an infection and there are rare cancers that I can also get from being on them. I said “I want my life back. I want to be able to go to dinner with my husband, travel, and work without worrying every minute if my condition is going to land me in the hospital. Canceling plans because from one hour to the next I’m a train wreck.” I explained how hard I worked to be healthy with diet and exercise and I’ve lost 25 pounds because I’m slowly deteriorating. I said “I’m afraid if we wait any longer I will be back here in a month or less, probably down more weight and even more deteriorated. Now is the time to do the surgery while I’m strong.”
He said “I agree with everything that you said. For you, this is the right decision. For everything you want to do with your life that you mentioned, you can only get that with surgery.” He then pulled out his prescription pad, tore a page off, turned it over and did a drawing of what will take place. I said “What do we do next? Do you need me to contact the insurance or write a letter?” He said, “you don’t worry about any of that, I will take care of it.” I said “Do you think I’m crazy? I know most people are begging to save their colon.” He said, “No, you are very sure of what you want for your life and the surgery will give you that.”
I did an amazing job getting through the last 8 years with diet, and most people that I have met were on meds for 3-8 years before getting this surgery. I made it this far medicine free. The disease can be controlled with a controlled diet and a lot of the symptoms you will have whether you’re on meds or not. Some people are on meds and tell me they’ve been in a flare for 2 years. What’s the point of the meds then? It’s just damaging other parts of your body.
The disease is unpredictable. Nobody knows how much time they have until their next flare or when they will be faced with life-changing decisions. Therefore, I immediately started my research on having my colon removed 2 years ago. I wanted to know as much as possible because one thing I hate is ignorance when information is at your fingertips. I’m well informed, I have a lot to learn and a new life to get used to but more importantly, I have a new beginning to look forward to.
My husband said he can’t wait to take me dancing again. That made me laugh and cry. It’s the little things that you miss when you’re sick. Trying to spend every minute of the day rehydrating and refueling your body just to go through it all over again the next day. My husband is the only one who has ever seen me at my worst and what I go through every morning just to be able to get to work and get through the day. He’s been an amazing support system and I’m blessed beyond words to have him.
In everything that I want to do in my life, I always wait for it to be confirmed. On Sunday, my son Anthony brought me the medication that the hospital couldn’t get delivered quick enough. He ended up spending the entire day with me. He was able to hear what the doctors said and watched me in agony. By night time, we were laying quietly in my room and he said, “Mom, when you first told me about having a ostomy bag, I thought to myself how much that would suck, but after everything I heard the doctors say today about the risks of the medications and what I have seen you go through over the last month, I understand now and agree you should have the bag. You need your life back.” I did everything I could not to cry. I felt like that was the confirmation I was waiting for.
Anthony is a very smart young man, wise beyond his years. He’s the quiet one and observes everything, always analyzing and doesn’t judge or give too many opinions. For him to speak up and share his thoughts, meant the world to me. I have a lot of respect for him and my daughter. They make me proud every single day and they have stepped up to help me tremendously in these last few months. I don’t know what I would’ve done without them.
Stay tuned…A new beginning is just ahead…