It started with happiness. With energy. With relief.
I remember sitting in my hospital bed and for the first time in many months feeling relief. I was hooked to a pain pump of dilaudid and for the first time in months I wasn’t in pain. I recall laughing and conversing with the people that came to visit me in my hospital room dropping off gifts for me to spend my time on. Coloring books, crayons, puzzles. In a way I regressed back into a child. I was scared, weak, tiny, and in this big place where finally people were there to take care of me. I could breathe a sigh of relief. I would sit in my hospital bed and color pictures or play with play-doh as if I were a child passing the time, and I was glad to have nurses and doctors trying to make me better. Things are going to be okay I thought.
It was all fake. The new “energy” that I felt was just high doses of steroids being given to me through my IV. It was the three blood transfusions I had received since I had lost so much blood by then. It was the IV nutrition trying to replenish the lost nutrients. In truth I wasn’t getting better. The steroids were not working, the transfusions didn’t really raise my blood levels, and the TPN feedings were…well, at least they were helping a bit. But no matter, I was happy there in the beginning. I was hooked up to this and that and things were going in and out of my body and just for once it felt good to have more than just myself taking care of me.
The months prior to those six months I had barely held on. My life was stolen from me. I am in every way a driven, motivated, competitive person in a teeny little blonde girls body. If I am told that I can’t, I do everything to prove that I will. So when my sickness caused me to fail the whole semester, quit my job, and move back into my parents house I was devastated.
Why did I have 3 blood transfusions? Because every day, without fail, I would stand up from the toilet and stare at a bowl full of blood. A clear sign that my large intestine was bleeding so bad and was so inflamed. The blood loss caused me to be anemic and extremely weak and tired which resulted in my fun life dwindling down to laying in bed and making trips to either the bathroom or the kitchen. The pain was pain that I never knew could exist and it was there every single day. I was so tired of the pain, and from the pain. I was also going to the bathroom on average 15-20 times a day but at my worst I counted 52 times. 52 times in a day that I stared at my blood loss staring back at me. During the night I would experience high fevers and usually after making several trips to the bathroom I would come back to my bed freezing cold and sit there and convulse because the pain and the fever made that happen. Once I finally fell asleep I would get night sweats that were so bad it was as though someone had thrown a bucket of water in my bed from sweating out the fever. Then I would wake up the next day and do it all over again. The medications that were not working, the pain, the fevers, the shaking, the laying around watching my life go by.
I was 95 pounds. I was bleeding internally. I was in excruciating pain. I had fevers. I couldn’t walk sometimes from the arthritis that often comes with IBD. I was having accidents.
That, for a young girl was terrible. To me it was the end of the world. I couldn’t tell anyone. HOW could I tell them that blood was coming out of me when I used the bathroom? How could I tell them about the pain, the fevers, the accidents, the medications, etc? I was so embarrassed and so alone. I was so so so alone.
And ashamed. That too. I don’t know why I felt ashamed, but I did.
Sick. Embarrassed. Isolated. Disgusted. Ugly. Scared. Alone. Ashamed. That is what I was. I was no longer a college student on my way to becoming a teacher. No longer a driven, smart, successful young woman. No longer a talented dancer. No longer pretty. I was nothing in my eyes if I had this disease.
So after months and months of being sick and all these failed medications I was hospitalized. And in the beginning I was okay, until the strong IV steroids were not helping, my white blood cells were still too high and my blood levels still too low. They say, it’s time to talk to a surgeon Sara…
Enter Doctor F. He explains to me my options as far as surgery. I had three and they all involved removal of my large intestine. Either take out the large intestine and rectum and go for a permanent ostomy, take out the large intestine and connect the small intestine to the rectum, or take out the large intestine and rectum and create a ileo-pouch (j-pouch) out of the small bowel and connect it to the anus. Option 3 was the winner. Doctor F explains what life should be like after surgery. I am told things like since you have ulcerative colitis (I didn’t. I was misdiagnosed and actually have Crohn’s disease but they didn’t know that back then) that you will no longer have to take medications anymore. You will no longer have to worry about being sick like this. You will live a good life. You should feel better as soon as you wake up from surgery like most patients do. They stop feeling sick, they are relieved because the diseased organ is gone.
Fast forward a month later. I didn’t get out of the hospital in a weeks time like I was supposed to. I didn’t feel better like I was supposed to. I had this ostomy bag now. I could see my small intestine, right there! Right there sticking out of my stomach. My insides were sticking out of me and I at first didn’t know how to adjust. I went through a little depression, panic about what clothes I would wear, thoughts about my future that was now sure to be lonely because no one would ever love me like this. It seemed as though nothing was going the way it was supposed to go. My ostomy output was so fast and liquid some nights that I literally had to set my alarm clock on the hour to wake up and empty the bag or it would burst. My family was falling apart. My brother was away, my mom was trying to hold it together and visit me but all I could do was yell at her because I was depressed and angry and took it all out on her. My sister was young and scared and wouldn’t come visit me and my dad was away for long periods of time working. In some ways it brought all of us closer together, but in so many other ways it drove us to our limits. Illness hurts family in so many ways.
I was supposed to be getting better but my pain was worse. It was scaring me because it was even worse than before I had surgery and this time pain medication hardly helped. I needed a break from the pain so badly because it was keeping me up at night and causing me things mentally that I don’t even know if I can ever explain. All I remember is just wanting out. Wanting to have a test where they would put me to sleep so I could escape, wanting another surgery so that I could have anesthesia and be knocked out, wanting to die. I just wanted it to end so badly and sometimes I wished for death. I wasn’t supposed to have my 2nd surgery to take down my ostomy and start using my j-pouch for three months but I was progressively getting worse. I was back on IV feedings and in constant pain. Soon I was in even worse pain and was constantly throwing up large volumes of bile. It was decided by my surgeon that we had to get me into surgery to fix the problem and that we would take down my ostomy then to see if maybe I would do better without it and just start using my j-pouch early.
So around month 2 in the hospital I had my second surgery where we found that adhesions were strangling my small bowel and that was causing the extreme pain and constant vomiting of bile. Again I was told that things would get better now and I lied to myself and tried to believe that it was going to get better. Doctor F tells me that most of his patients who have a j-pouch go to the bathroom a lot more in the beginning. He says to me that my body will take awhile to adjust and that I can expect to use the bathroom about 7-9 times a day and maybe even 1-2 times at night. Me? I don’t go to the bathroom at all. For days I can only just hardly use the bathroom or on a good day I go 2-3 times. This has doctor F stumped and we discover that I have a motility disorder. Then he says we will try a catheter and see if that helps drain my j-pouch because I must be getting backed up.
So now I am around 90 pounds and I have a tube coming out of my behind. Because of said tube I had to wear a hospital gown with no underwear on because how can you wear underwear over a large tube? Nurses had to empty the waste that the catheter collected. I was mortified. My dignity near gone. The pain? The pain was still there.
Month three. One day I am laying in my bed with my mom by my side and I start convulsing out of control. In no time nurses were being rushed into my room and I was being covered in an ice blanket. I wake up 3 days later in the ICU not remembering what happened in-between. Turns out I had spiked a fever of 105 or 106 and was rushed to the ICU because I had a terrible blood infection from my central line.
Month four. My tooth chips. The first of many due to years of malnutrition, steroids, and vomiting taking it’s toll on my teeth. I lay in bed running my fingers through my hair pulling out clumps. It’s mechanical. I don’t even care, I do it to pass time. I throw the hair balls on the floor and admire how much is there. I have been wearing adult diapers at night because my body was not used to missing it’s large intestine and it didn’t know how to work. I was so weak and in pain that someone else always had to clean me up and put me back to bed.
Month five: Someone had been doing everything for me for a long time by then. I was showered, dressed, and cleaned by a nurse or a loved one. I wasn’t eating at all but still being fed through my IV. My family eats Thanksgiving dinner in the hospital cafeteria while I watch them because I am still unable to eat. To make matters worse in my family my uncle had recently been diagnosed with brain cancer and had brain surgery and was put down the hall from me in the hospital. I hardly turned on the lights anymore in my hospital room, I was so depressed. I was tired of the doctors, nurses, and hospital staff waking me up at all hours to draw blood or do vitals when I had just finally caught a wink of sleep. I was tired of the pain and the way that this shook my family and friends. I told everyone to stop visiting me and was a jerk to anyone who did. I was just scared. Scared that I would never get better and that the rest of my life was going to be this way. I knew that I couldn’t live like that. I couldn’t take the pain for much longer. Nurses started to try and cheer me up by doing my hair and makeup or pushing me in a wheelchair around the hospital.
Month six. Month six not much happened. They were trying to get me off IV feedings and off pain medication. I was working with a pain management specialist and really just existing in the hospital for the TPN and the pain meds. My days consisted of someone pushing me around in a wheelchair or me wandering around by myself. It was December and my room was ready for Christmas and then…I went home.
I went home and I got worse. I lost more weight and I slept for hours and I still wore adult diapers at night. But over time I steadily got better. That is a small part of what my six months were like. I don’t know if I have ever described them besides just saying I was in the hospital for six months. I try not to scare others who are going to have surgery but I do want someone out there that has a lot of complications to know that they are not alone. During all of this I didn’t have friends like I do today who have Crohn’s disease or ulcerative colitis. I didn’t know anyone and I was so embarrassed about all of this that I lived it by myself. That is something I try to prevent for all of you. I don’t have a nice ending for this blog, I am tired and need some sleep.
Goodnight my strong friends.