My name is Kyle. I am 28 years old and hail from the Evergreen State of Washington. I joined team UC in July of 2012. I am currently working in a school district seeking a full time teaching position. I also serve as a youth pastor in my local church and am sold out servant of Jesus Christ. I try to stay very active, current days it looks different, but I love all sports. I love playing basketball and running. I have an amazing wife, who I have been married to just over a year now, and let me tell you I married up! I would be willing to debate anyone that I got the cream of the crop : )
Currently I am still dealing with inflammation which of course give me a wonderful tightness in my stomach at all times. I just came out of a severe flare but am having normal BM’s going about 2-4 times a day, but they are formed and solid : ) The things in life you never thought you would be excited about! I am currently on a low res, low fiber diet as my gut is still recovering from the last flare. Slowly introducing fresh veggies and fruits back into the diet.
On July 18, 2012, I was diagnosed with Ulcerative Colitis. At that point the Dr. said that there was just some mild inflammation and put me on two Lialda pills, told me after 7 days I should see much improvement. Well, the improvement didn’t come in 7 days. 2 weeks after my colonoscopy I was still experiencing diarrhea and having 4-8 BM’s per day.
The beginning of August is when everything hit! The night of July 31st, I started getting the sweats and chills at night, and began seeing blood in the diarrhea and was having extreme stomach cramps to the point where I wasn’t sleeping. I was then put on 10 mg of predisone for 4 days but saw no improvement. I made an emergency appointment with my specialist on the morning of August 6th, was dealing with serious dehydration and because of the diarrhea was so bad I was malnourished. The Dr. immediately put me on an all liquids diet, gatorade and protein shakes, and bumped up the predisone to 20 mg a day. The hope was to kick this thing in a couple days. Well, Wednesday came and I was still in bad shape! On August 8th they recommended that I got into the ER and at the least get pumped full of fluids.
I got right into the ER, which was nice because the last time I went I spent 8 hours, 7 of that in the waiting room. They begin getting fluids in me, as I was severely dehydrated, and took a blood test. They were unsure whether to admit me or not, but when the blood results came back, they contacted my specialist and realized I needed to be admitted. They admitted me due to a Colitis flare but because of the diarrhea they had to put me in isolation. It was a big joke at the beginning because we already knew I had Ulcerative Colitis. The hope was to get the flare under control and release me within 24-48 hours. After 3 days in the hospital with no improvement came the required stool sample and they realized that I had also at some point contracted the bacteria known as C-Diff. Which to treat Colitis and C-Diff is two different routes. So what was a maybe 24-48 hour stay in the hospital had now turned into a 2 ½ week trial and error of trying to get both things under con trol. The C-Diff I had contracted was also a resistive strain so I was put on a 21-day anti-biotic known as Vancomycin.
The saga continued in the hospital. I received my 2nd colonoscopy in a month and what was mild inflammation was now deemed “severe” Ulcerative Colitis, as my lower large intestines was now seriously inflamed and lined with ulcers. Because I was still in the middle of a colitis flare, I was still losing blood during BM’s. I had to receive 3 blood transfusions because my hemoglobin kept dropping. They had put me on TPN to help get me the nutrients my body wasn’t getting as I wasn’t able to eat anything but an all liquids diet. Because I wasn’t able to eat and hold food, my weight had dropped down at one point to 132 pounds. Which being a 6’0 male was very low. At the start of 2012 I was weighing in at roughly 165, always been a skinny guy, but 130 was freshman in high school weight.
Finally, after 3 weeks we finally begin seeing little improvement. I had ran the full course of the Vancomycin, was moved down to 12 hour TPN treatment, and beginning to see some form in the stool. My diet was increased slowly but I begin a low fiber, low res and it was sitting well in my gut. On my 27th day I was asked to take another stool test to see if the C-Diff had returned, 33% of cases come back. Finally, after a 29 day stay on the 9th floor of the hospital, my C-Diff results came back negative and I was given discharge papers.
When I first got home I was put on 2 weeks of at home IV treatment, getting the TPN for 12 hours a night. It was a wide awakening when I first got home as I hadn’t realized the effect this disease and hospital stay had on my body. I had experienced serious muscles atrophy and loss. Prior to I was very active, playing basketball 3 days a week, running, and never one to sit around. I had my eyes opened when I first tried to walk up the stairs in our apartment. After 2 weeks of the at home TPN treatment I was given the green light to get my pick line removed and begin doing my best to put on weight and regain my strength.
That is where I am at now. I am currently in the process of getting Remicade treatments set up. Tapering off the steroids, and getting my body back so that I can return to work. I have been off work for 2 months now. I have been told that my body will return back but it was take some time, I have been given a time line of anywhere from 4-8 weeks before I will be able to maybe jog, I am able to get around on my own now, walking is my daily exercise, and standing I can do, but not for long periods of time. Calves lost pretty much everything, so puts a lot of pressure on my knees and quads being on my feet. I know it will be back and I keep myself focused on the little victories I see every day.
What is amazing to me is all the things that I took advantage of when I was healthy. Before for me to run to the store was no big deal, for me to go play basketball was no big deal. Now for me to walk to the mail box is a HUGE victory!
Going through all of this has been the hardest thing in my life thus far, but I have learned and grown so much. God has opened my eyes to so many different things that I know this was not by chance that I went through all this. He has a purpose and a plan behind everything that he does (Romans 8:28). I believe with all my heart that he is preparing something as a result of all of this. I don’t believe that just because, but I believe that because of what I have seen him do already in the middle of the worst situation of my life. My wife and I have received blessings bigger than I could ever imagine during this tragic time in my life.
I know I am going to come out of this entire situation stronger than ever, and I will not let UC control me!
Where I’d like to be in 1 year:
I would love to be back to a neutral state where I am not concerned every day that UC might show it’s ugly face in my life again! Symptom free would be amazing and being able to live out life in a normal way would just be the icing on the cake.
Currently I am being tapered of predisone at 50 mg right now then down to 40 mg and then 5 mg a week after that until I am at zero. Also taking 2 Lialda pills in the morning and getting prepared to start Remicade treatments within the next 2 weeks.
written by Kyle
submitted in the colitis venting area