For the first time ever in my life, I didn’t care if I died. That’s crazy for me to admit, but it was true. Anyone who knows me knows that I would NEVER want to leave my kids. If you’ve read some of my other blogs you know that my son has made me promise him since he was little that I would live forever. Even knowing that, I was so sick that I didn’t know how I’d make it another day.
Having an ostomy bag never scared me, not even the first time I saw it. I was more fascinated that this bag was going to give me my life back.
Less than 24 hours after surgery I had a problem with my catheter. I had excruciating pain and thankfully my sister was there to help figure it out. They usually leave the catheter in for a few days but ended up removing it. I was so weak I could barely get up out of bed.
My hubby put the portable toilet in between my bed and his couch bed so that I would only have to stand and could sit immediately. It’s in a moment like this, where you’re sitting on a portable toilet, bedside, that you really feel your most vulnerable.
In the middle of the night I got up to use the portable toilet and my hubby told me that he loved me and leaned in to kiss me. I felt more love than I thought was possible. Then, of course, I cracked a joke and did everything I could to not laugh because of the pain.
2 days after surgery, I started coughing up blood which was definitely eventful for my husband. I was choking and trying to say “Go get help!” He had to go running to get help. I’m pretty sure I’ve caused some PTSD in him now.
The doctor had an ENT Specialist (Ear, Nose & Throat) come to see me. He explained that when I was intubated they messed up my uvula (the little thing that hangs down in the back of your throat) and also my throat. They had to switch my meds to liquid or IV and I ate a ton of ice chips. It took 3 weeks to get better and I’m still not 100%.
The 5th day after surgery I started having severe nausea and the doctor was so worried that I had a blockage. He had to stop all food and drinks so that they could do an X-ray. When I got to the X-ray I could barely stand on my own. It was so hard for me to breathe and my legs were shaking so bad. I didn’t know how I would survive another surgery if they found a blockage. Thankfully, it was a false alarm and after 2 more days of severe nausea I turned the corner and asked if I could go home.
The first week home was brutal. I could only walk to the bathroom, which was 66 steps round trip from the couch to our guest bathroom. I would count every single one, every single time so that I always knew how much farther I had to go. I could shower as long as I took only 5 minutes. Every muscle in my legs, arms and hands would shake. It was very hard to do anything. I could make myself food as long as it was something fast. Other than that, I was laying down, working on my laptop, trying not to move.
Now that I’ve gotten to the point where I can stand longer than 5 minutes, I’m trying to get into a routine. Waking up early like I usually do. Making breakfast, showering and starting my work day. I’m preparing myself for when I’m released back into the real world. Mentally I’m so ready but I don’t want to mess up my recovery so I’m staying patient.
I’m able to eat every single meal at the dining table now. Something I haven’t been able to do for over 6 months. It’s the little things like this that make me emotional. You don’t know how important the small things are until you are completely debilitated.
I hope that anyone who reads my journey realizes that no matter how healthy someone appears to be, that’s not always the case. People with chronic illnesses do a hell of a job pretending to be “fine.”
I am so grateful to the surgeon who listened to my personal story and saved my life. This past year that I have been out of Kaiser, every doctor and nurse who has become a part of my medical journey has taken my situation so seriously. If it wasn’t for them I don’t know where I would be. Every single day, I just wanted to fight the fight of this brutal disease but I knew things were changing fast. I just didn’t know that it would literally be overnight.
I encourage you to be an advocate for your own health. Nobody knows your body better than you. Stay factual when you talk to your doctor. Keep records of everything. Keep a journal to refer back to. You never know when all of that information will help someone save your life.
What many people don’t understand about having Ulcerative Colitis or Crohns Disease is that having your colon removed does not “cure” you. You still have the disease but you will hopefully have a better quality of life. Everyone has a different definition of quality of life. For me, I just wanted to be able to go for a walk with my hubby and dogs, sit at the dinner table with my family, go to the mall with my daughter, go to a movie with my son. continue to travel, go to Disneyland for my nieces birthday. Those were all things that became impossible. If I did attempt to do it, I was in misery. Counting the seconds til I would be home.
I remember when the home health nurse first came to see me after my first hospital discharge. She had to assess my capabilities and asked me, what does a day at Disneyland look like? I just shook my head no. I said, “that would be impossible for me. I can’t even go to the grocery store, let alone walk a theme park.” You have no idea how lucky you are to be mobile, without limitations until you lose that freedom. This disease is like being in prison and I couldn’t live another day like that. When I say it’s unpredictable, you have no idea what that means unless you live it.
To all my Ostomate Buddies that I’ve met throughout this rollercoaster, I love you guys! You inspire me to keep kicking ass. You have prayed for me and you have given amazing tips which is why I was able to fight through this recovery and stay so strong. Thank you, I’m forever grateful!
Looking forward to new beginnings, cheeseburgers (Grass-fed beef of course), french fries with ranch and ketchup and chocolate chip cookies!!! No this will not be my daily diet but it will be nice to know that if I do indulge, I won’t bleed to death. 😉
Stay tuned…the best is yet to come! #ConnieToThe10thPower