Coping | IBD | Ostomy
I was lying under a blanket on the floor of my closet. My body was puffy from the high doses of Prednisone I was on. Earlier that day, I had gone to see a nurse who marked me with two X’s where I was to have an ostomy placed the next day.
As I lay there screaming and crying, my husband was kneeling next to me, patting me on the back and feeling completely helpless while I was having a complete and total meltdown.
“I can’t do this!” I screamed and wailed at the top of my lungs. The neighbor who shared a wall with us must have thought I was undergoing some sort of torture. “I’m not strong enough.”
“Yes you are.” Dave patted me on the back again.
Tears streamed down my face as I continued to cry. Yesterday, I was walking down the aisle as my sister’s Maid of Honor. Now, here I lay in all my glory. Hungry from fasting and ravenous because of Prednisone. “No… I’m not strong enough.”
“Sweetie! We’ll get through this together,” Dave said… though not completely sure how he was going to be strong through all of this.
I don’t remember much about the day before surgery. Maybe I’d blocked it all out. So many family members were coming out of town. My grandparents on Dad’s side. My mother, my father and my husband’s mother. Not to mention several friends and my godfather and his wife.
They’d all gone out to eat. Dave stayed with me and we were preparing for the next day. No special prep was done outside of not eating and a quick shower with Hibeclens the next morning. My house was a disaster. I’d been so sick for so long that the housework was definitely plentiful. The stove was covered in cooked-on food. The microwave had splatters all over the inside. The floors were unswept, unmopped and cluttered with various items that stayed wherever they fell. Cat hair was balled up in several places throughout the house and there was a strong smell of pet from both the cat and the ferret that hung in the air. In my normal state, I would have been horrified to find my house in such disarray. Right now, however, I was too sick to care.
I had hemorrhoids the size of grapes. I was having 15+ bathroom visits a day when I wasn’t on heavy pain medications and muscle relaxers to help me get through the day. My bowel habits weren’t so bad at this point in time because I hadn’t eaten anything. But I was still weak. Somehow, two weeks previous, I’d mustered up enough energy to cook several freezer meals for both me and my husband to survive during my extended recovery from surgery. It was probably only because of Prednisone that I was able to do that.
Dave somehow coaxed me out from under my blanket of shelter and we climbed into bed for what turned out to be an almost sleepless night. Tomorrow, a part of me was going to die. I woke up around 5:30 the next morning and dragged myself into the shower for a Hibeclens rinse. I made sure to wash twice to be sure I was prepared.
Dave and I said goodbye to my father (he would follow us later) and we left for the hospital. I was almost in tears. I felt numb. Hungry. Tired. We “checked in” and waited. I looked at Dave, “This is a mistake!”
“No, it’s not.” Dave said, though not entirely convinced himself.
Dave’s mother showed up. I couldn’t even look at her. I didn’t want anyone to see me in my weak state.
They called us back and started prepping me for surgery. I kept looking at Dave, “Maybe this is a mistake!” After all, I hadn’t had anything to eat so my colon was sort of “resting.” Maybe that’s all my colon needed! A rest!
One of the nurses came in to take my vitals and I started crying. “What’s wrong? Are you afraid?”
“I’m afraid of my ostomy!” I said trying to pull myself back together. My insides were going to be sticking outside of my body. This is not natural! I could not accept this. The nurse didn’t know what to say. Dave didn’t want to admit it, but he wanted so badly to pick me up, carry me out, and go home… but he had to be strong… for me. And I had to be strong for him.
The nurse left. I kept wondering if this was all a mistake. Maybe I should go back! I feel alright. Then the nurse came back in. “I have another surprise for you.”
“The doctor says you need to do an enema. Either you can do it, or I can. It’s whatever you want.” She handed me a box.
Ugh. “I can do it.” I said numbly. “I’ve done this MANY times.” Thankfully, this would be the last time.
She walked out, my husband turned his back on me and I administered the enema. Immediately, I jumped up and ran to the bathroom. Everything started streaming out with a vengeance. The burning, the cramping. It was torture. This is madness! Why does it hurt so bad!? There’s nothing left in there. But it continued. Would it ever end? On and on my colon kept pushing and pushing. The pain was excruciating. But it was only blood and liquid coming out… and then it was nothing but blood. It felt as though I was in there for hours. I heard my doctor enter the room. “Is she ready?”
“No, she’s still in the bathroom.” My husband replied.
A few more moments passed and when I was sure my colon was finished with it’s emptying, I exited the bathroom. “This,” I said in all seriousness, “is NOT a mistake. I know that now.”
The anesthesiologist came in to wheel me into the operating room. With one last kiss and an “I love you.” I was escorted out into the hallway. This was it. The moment had come.
My mind was swimming. I don’t know if it was from fright, medications or blood loss. A large, muscular black man came over next to me. He was like a big teddy bear; kind and comforting. “I’m here to give you your epidural. It will sting, but your legs will get cold and tingly.”
“Ok.” And it did sting. But soon, the cold and tingly sensation took over. That’s the last thing I remember. According to my husband, this Teddy Bear called my husband just before surgery and said, “I have someone who wants to talk to you.”
My voice was heard on the other end. Dave says he doesn’t remember what all I said, but I told him, “I am surrounded by bright, spiritual lights.” I wonder what else I told the doctors and nurses.
When I woke up, I remember feeling a pain like no other. But it wasn’t my colon. This pain was different. This pain was one of victory. I had finally destroyed my arch nemesis who meant me harm. He was vanquished. Defeated. Dead.
Thus began my new life. My journey to healthier, happier days. The battle was far from over, as I’d soon realize… but life now was much more manageable. The part of me that died wasn’t just the physical organ that was removed. My sense of hopelessness and defeat died, too.
We are Heroes in our own right!! I had my Dasy in November of 2014, my pal, my savior…It’s our new normal together and we are learning to live and get along;)
Question to you all, supplements what do you take as far as probiotics and vitamins
What diets do you keep
I’m still searching for good nutrition and supplements.
Thank you so much for the post girl!!
I’m going through this now, I undergo a permenant colostomy, proctectomy and reconstructive surgery for Complex Fistulating Chrons disease next Thursday 28th April 16. yes I’m scared..Of the pain and that I’ll hate myself after. but it cant be worse than now..Ive had 11 years of this. I have to trust it will be OK.
Thank you for reading, Mariana! For a while my doctor had me taking meds to slow down transition time. I was also anemic, and deficient in vitamin D and B12 for a while. You’ll need your doctors to check your labs. Everyone is different. I also drink kefir as a probiotic. 🙂
Joanna, IBD is so scary. I’ll keep you in my prayers. If you have any questions, please feel free to email me. I don’t mind questions and if I don’t have the answers, I can definitely find them for you. Sending love your way.