In one week I will no longer have an ostomy. This chapter of my life will finally close and I can look forward to the future.
Sitting here I am feeling so many emotions it’s hard to describe to my friends and family. I don’t know if I’m afraid, anxious, nervous, excited, angry, dumbfounded, or all of the above plus more. I feel very emotional and I want to make sure I make note of that so I can remember what this feels like 20 years down the road when I’m trying to remember what major happenings in my life made me the way I am. This past 18 months or so have certainly been a huge determining factor in the path that my life has turned. No one can tell me how I’m feeling or what I’m feeling except for me. No one can understand it unless you’ve walked in these shoes. That’s ok, but it’s hard. The lonely feeling I once felt when I had UC is back and it’s making me a little anxious. It’s not a bad, negative lonely feeling, but it is an unsure one.
To think it all started with a vacation. With a friend I hadn’t spoken to in years asking me on a whim if I wanted to travel to the Dominican Republic, free of charge, free of worry. At the time I loved my job so much and already had a trip planned for a few weeks later to California with my family. I hesitantly asked my good friend and boss at the time if I could go and she hesitantly, allowed me.
I was given a round of antibiotics by my dad, who is a doctor, and which I didn’t take. If I had taken those pills would my life be different? If I had said, “no,” to going on the trip, or if my boss/friend had told me, “no,” what would have changed? There are so many things that would have stayed the same, that I would have never learned, that I would have never experienced, like true pain or loss. Looking back on all of it at this point it all seems like a blur. It all happened so fast. The vacation was amazing. I was never sick the entire trip. I didn’t even feel symptoms of discomfort until a few weeks later. Even when I said anything about them no one seemed to care? And honestly, I was terrified. Why was I going to the bathroom so much? Why was there always such an enormous amount of blood? Why was I in so much pain?
These are all questions I was not only afraid to ask my friends and family, they were questions I was afraid to ask myself. I have to wonder, if I had asked them sooner, sooner than anyone noticed my weight loss, or the tired look on my face, or the bruising underneath my eyes my friend noticed one night while I was bartending, would my diagnosis have been different? Would I have even had an ostomy?
But in situations like this you can’t think to the past. You have to be strong and look to the future. That is what I have been taught and conditioned to do through this entire process. But what I didn’t realize is that some of it I was suppressing, and some of it is finally starting to come to fruition. Could it be a little bit of post traumatic stress? My doctors seem to think sometimes that could happen to me. I have been through so much pain and suffering wouldn’t it make sense? But I am not one to feel sorry for myself. If there is anything I have learned through this process it’s that someone always has it worse. That may be a negative way to look at things to some, but to me, it is me reminding myself that I should consider myself lucky and blessed to be in this certain situation, at this very time.
Does that not give me the right to feel these strong emotions, though? I found myself tearing up at the gym today, thinking about the past. A memory my mind always jumps to is when I really started to get sick, when my GI was trying to prep me for a colonoscopy to check my progress last April. I drank some magnesium citrate to start the process of, by 2 a.m. that night I was sure I was going to die. I was bleeding so much and in such a way I thought I would never wake up from my sleep. I was in so much pain I thought I was living a nightmare. I couldn’t sleep comfortably in my bed, so I curled up on the floor, wondering in my mind what I should do. I was too afraid to take a painkiller and fall asleep, because I seriously was afraid to die. I thought to myself, “Why, why is this happening? What did I do to deserve all of this? When will this be over?”
When I finally did end up taking a Vicodin, I fell asleep and did wake up (obviously) and immediately called my GI. He wanted to directly admit me to the hospital and do the test in-patient, because there was no way in hell I was going to complete the rest of that prep if only the first step almost killed me. I gladly went to the hospital, I needed serious help. I didn’t think he would make me complete any more colonoscopy prep. To my dismay, a nurse came in with one of those disgusting looking jugs of hell. The foul tasting clear liquid, falsely named “Go-Litely.” More like, “Go-Deathly.”
I tried my best to pour the solution over ice, plugged my nose and chugged through a straw. The nurse would come in and check on me and tell me I had to at least drink half. I remember just looking at that gallon thinking, “I am not going to make it through this.”
I pressed the button, called the nurse in and had an epic break down about 40 minutes later. I told her I could not possibly drink anymore. I had nothing left to even go to the bathroom and if I did go one more time, I was sure I would fall over from exhaustion. I hadn’t slept, hadn’t eaten, all I could do was cry. I’ll never forget the look on that young nurses face. She looked at me like she had no idea how to comfort me or what to say. A look of confusion like, “I don’t want to get in trouble from your doctor can you please just stop crying and drink more.” Well, there was no way I was drinking more of it and she finally, after much time staring at me quietly in the dark while I sobbed, took it away.
I know that colonoscopy was the one that told my doctor surgery was imminent. The next day he walked into my room and looked at me disconcerted and said, “Brooke, this is not better.” Of course I knew I wasn’t better. I had been vomiting non-stop for 3 days, I was in so much pain I was convulsing and my colon was rotting my body from the inside out. But somewhere in my naïve mind I still never thought of surgery as an option. No way was I getting an ostomy. No way was I ever going to live without ulcerative colitis.
Now, almost 11 months later all I can think is, “How did I ever live that way?” How did I do it? Why did I do it for so long? I couldn’t answer those questions, unless I just said, “I just did it.” Because that’s what I did. I woke up, went to the bathroom 20 times. Cried in pain. Tried to get ready for some kind of day. Freaked out about leaving the house. Went to the bathroom 8 more times. Left. Would have to pull off the road 12 times, sweating and crying praying there was a bathroom close trying to talk to myself. Would get home. Go to the bathroom 20-30 more times. Took 30 pills to try to get some kind of relief. Laid in bed. Would get up throughout the night at least 15-20 times.
Now that is some harsh reality. And for the past 9 months my reality has been different yet again. No pain. But still plenty of bathroom trips. Trying to figure out how to change my flange. Changing my pouch. Draining my pouch. Timing my eating habits. Thinking and obsessing about what I’m eating. Thinking of when the next time I’ll need to go to the bathroom is. If my pouch is too full I get serious anxiety. It still seems as though the bathroom is my prison. Though my life is improved and my disease is gone, the remnants still remain and my life is still changed.
Monday I will have another life change. I don’t know what to expect. I’m scared, confused, excited, anxious, all of the things I said earlier. It’s a weird feeling to be terrified but counting down the days at the same time. To try and stay distracted, but knowing that I soon again will face more changes. Every time I stopped today all I can think about is my upcoming surgery and what I have been through the past year. Is it really almost over? Is this really going to happen? I’m going to wake up, a week from now, with no ostomy on my stomach? That is so crazy. What is it going to feel like? Does this surgery hurt? Where do I go from here?
All of these questions can be answered by my countless friends who have experienced it. But none of them have had the same, exact experiences that I have. And that means they can’t comfort me and tell me it’s going to all turn out ok, and tell me details of their surgery and what their j-pouch is like, because everyone is so different. I’m just going to have to keep holding on, keep putting on that brave face and roll into that operating room like I have 2 other times before…