My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

My UC journey

March of 2015 I went out to eat for a friends Birthday party at a local restaurant. I hadn’t been feeling well and had a mild fever but just shrugged it off as coming down with a cold. After leaving the restaurant and getting home that night my whole world turned upside down. I immediately became ill- Vomiting, Diarrhea I could not stop. Every 20 minutes I was running to the bathroom. The pain in my abdomen was horrific. The diarrhea grew more intense as I realized I was passing blood, not a little but a LOT of blood. It was pouring out of me. I screamed crying as the pain would not subside. Everyone I spoke with told me that it was probably just food poising. I took the next day off of work. I did not get any better. That night i could not take it anymore, I drove myself to the ER and my mother met me there. After waiting close to 2 hours to even get to the back of the ER and be seen the nurse told me i more than likely had the stomach flu. She tried to give me a bag of fluids but could not find a vein (I was extremely dehydrated) so she sent me home with a cup of ice chips. The next day it got worse. I felt myself being drained. I had used the bathroom close to 20-30 times in 24 hours. I went back to the ER the next night. I knew this could not be the stomach flu as I felt like I was dying. Another couple of hours to get to the back and a stool sample later they admitted me. I was moved to a temporary room until another room came available. All of a sudden you would think I was a freak show. People came in with mask, gloves; fully dressed in medical gowns and quickly told my mother to back up out of the room and also put this on. I had C-diff- I was highly contagious. I was too tired to even care what was going on. I was quickly awarded a room, Started on IV's and told that i was extremely dehydrated and it was good I made it in when I did. I had no idea what this C-diff was-- I was told that its passed through feces, not washing your hands and then ingested-- I am a complete hand washing freak and knew this was not it, they then told me this could have been someone that had prepared my food and I was completely disgusted. I continued on IV’s for fluids and then was seen by a great man; Dr. Sanders. He became my infectious disease doctor and was so smart. He from the beginning knew this was something that triggered C-diff then just full on plain old’ C-diff. 1) I had not been on any anti- biotics. 2) He said I was one of the youngest patients he had seen with this to the severity at 28. I was started on the Pill Vancomycin. This was supposed to help kill the c-diff that was attacking my intestines. I could not ingest the pill, as soon as it would hit my stomach it would come right back up. They decided then to switch me to Liquid vancomycin. It was very hard for me to hold it down and took a long time for me to take the full dosage but I managed. I was on it for about 4 or 5 days and showed no improvement. I was still having 20 + bowl movements per day in the hospital. I was introduced to a GI doctor that came by like clockwork every morning to see me. This gentleman seemed to not really care of what i was going through, he never once even examined me, touched my stomach, anything. You could tell he was just there for a paycheck and nothing else. He was older and in my case needed to retire. He would stand at the door say how are you feeling? I would say horrible and he would say ok check with you tomorrow and leave. It made me so sad, I felt like no one was helping me and I was not getting any better. I began to feel very discouraged. I could not eat anything, i was malnourished, my hair was falling out in handfuls when i would take a shower. Enough was enough. I decided to take control of my health. I told my hospital doctor that I wanted to fire this GI doctor and request a new one. He told me he was so proud of me for taking a stand and putting my foot down that most people do not have the courage to do so. He told me I just had bad luck and that GI Doctor happened to be on call the night I was admitted. He recommended a woman that he said was outstanding at her job and she was in the next morning to meet me. She examined me asked questions. She immediately ordered me to have two prep enemas and a sigmoidoscopy to see what was going on. Let me tell you the prep was horrible. The next day after the Sigmoid I was told I had Universal Ulcerative colitis and the c-diff was fighting each other in my intestines. She informed me that it was one of the worst she had seen. I was "eaten up with colitis" as she put it. This crushed me. I had never heard of any of this stuff and had always been healthy then boom. My spirits were down; I had not seen my kids in a week then at the time ages 3 and 9. Thank goodness for FaceTime (it helped still feel a little connected) Due to the c-diff they said it was best to not have kids in the room which I agreed. My mother and boyfriend took turns alternating nights with me so i was never alone. I felt like i was never going to feel better. I had not eaten in over a week at this point. I just couldn’t even think of food. I had no energy. I was having magnesium, and potassium IV’s along with the others I was on. They also started me on Prednisone through my IV The Infectious disease doctor decided that the vancomycin was not working and decided to switch me to Dificid, this is normally the last option for people with c-diff due to its a new drug and very expensive. It was my golden ticket. The Dificid was working. My bowl movements were getting less and less in between. With the steroids, dificid and pain meds i was starting to feel not better but manageable. My doctor told me i had to eat or I was never going to get to leave. I was able to eat a few teddy grams. It was my biggest accomplishment thus far. My second sigmoid was the same result, it looked better but i was still pretty inflamed. I have tiny veins that roll; I am a very hard person to stick. So every morning at 6amwhen the lab team came by i would immediately feel panicked. It normally took at least 3-5 sticks to get me. I got scared to even unhook to take a shower because I was scared I would have to have the re do my IV. I would spend days alone while my family worked. This time I mostly slept but when I was awake I would reflect. I think the worst part was being isolated and not able to leave the room. My doctor finally allowed me to be wheeled outside one afternoon by my mother. After day 17 I was finally set free. It was the longest 3 weeks of my life. My homecoming was nice it took me about a month to get over the trauma and gain my life back and honestly I think emotionally I still have not gotten over the trauma of it all. It has been on ongoing battle. Shortly after my follow up i was put on Remicaide due to the Laila not controlling my symptoms. It’s a catch 22 because the Remicaide does keep my UC symptoms under control however I have had many side effects from it. My liver enzymes continue to shoot up off and on so they are closely monitoring that, as well as being diagnosed with psoriasis and now I have been told that I have the begging stages of osteoporosis I'm sure from being on the 60mg of steroids for 3 months. I have severe joint/muscle pain mostly at night and I'm the mornings. About twice a month I get migraines that knock me out of commission for a day or two. I gained 50lbs on the steroids so I’m still working on getting that off. But for the most part I am happy. My UC symptoms are way better than they were. I’ve learned slowly what triggers me to flare and been put on anti-depressants and anxiety medications to help with stress. It’s a long road ahead but I will stay positive and keep going. I have a Biopsy scheduled next month to see the progress I have made so that will show me what my next step will be. I think the main advise I would give any new UC patient is that you are not alone. There are many that suffer and have it far worse than me. I am thankful for all the forums and support groups I have joined that help me realize I’m not the only one fighting day in and day out. It's hard to cope with the thought things will never be "normal" again. That there is no cure. That these medicines that are keeping me in remission are dangerous and could cause even more complications down the road. I have learned to take things one day at a time and enjoy it while I can.  

 

 

 -Kendra Rhodes 29 universal ulcerative colitis 

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