My name is Zach, I live in Portland, Oregon and I am 32. I lead an active lifestyle so when I was diagnosed in the middle of a flair, I was perplexed and surprised.
Some more about me:
Portland is pretty awesome, it’s nothing like Portlandia projects, by the way. I mean, yeah there are plenty of hipsters and plenty of silly stuff that they do. I just want you to know that we have our fair share of diversity.
I have had all symptoms of UC: I was diagnosed with a severe case of pancolitis so my colon was inflamed and irritated completely which gave me runny and bloody stool, bathroom visits 20-30 times a day, weight and appetite loss, and an overall decline in health.
A Severe Case of Pancolitis
When I was diagnosed with UC in May 2013, I was relieved to find this site. Thanks are in order to Adam for setting this up and thank you to the UC’ers whom have written their story, it has been most comforting to find others with the same struggles, it gave me hope when I was at the end of it. Here’s my story:
Like I said, I was diagnosed in May 2013 and my symptoms began in April. I didn’t think anything of it and just thought is was a bad case of diarrhea. I tried my usual change in diet, which worked for a bit, but my trips to the bathroom kept increasing so I moved on to over the counter medications like Imodium AD which also helped…for a while. My bathroom visits increased, my stool became more liquid, and I started to feel a bit of pain in my abdominal region. The real surprise is when I started bleeding. This concerned me so I made a visit to the ER and they could tell me nothing, and the only advice they offered was “well…no news is good news.” I don’t blame them because they are not specialists, the doctors ran panels of my blood and found no infection and no parasites/bacteria to be concerned about. It is quite amazing how hidden the disease of UC is but how much it can affect the body, I was absolutely wrecked but the Emergency Room doctors could not give me an answer as to why so I made an appointment with a family health care doctor. The usual tests were run, the same as my ER visit, and I was scheduled for a colonoscopy…however, it was 5 weeks away from my current visit to the health care professional, again, I don’t blame the docs because of how well hidden UC can be, and it was well hidden in myself. The only symptoms I had seemed to be (again) diarrhea and because I looked healthy, I was maintaining my weight at 172 lb., I was actively working 40 hours a week, and keeping a social life, the doctors were not concerned…this was all about to change rapidly. I was frequenting the bathroom on average 25 times a day and blood was in every bowel movement I had, it became more painful, and I also became more tired. I was not able to keep up at work or do the things I’d like to do with my friends outside. Also, I began to loose weight. I couldn’t wait any longer for the colonoscopy, so my girlfriend looked around for a specialist and found the Oregon Clinic’s West Hills Gastroenterology department. We made an appointment and they quickly diagnosed me with UC and gave me the answers I was searching for. The doctors scheduled me for a CT scan the next day, I was relieved, I thought “we are gonna beat this thing.” I didn’t know how severe it was until the next day.
It has been about a month and a half since the first sign of symptoms, the day was May 22nd and I had my CT scan. Before the results hit the Oregon Clinic, I was wrecked: I was in constant pain, I was pale, I was tired, light-headed, nauseous, making trips to the bathroom 30 times a day, and had lost about 20 lb. Again, I couldn’t wait any longer so I checked myself into the hospital. I stayed for three days, where they ran a colonoscopy and found out how severe and inflamed my colon actually was. After my hospital stay, I was prescribed Prednisone and Valcyte both for my inflammation and also because I had the CMV virus which my doctor explained to me that most people have it and do not notice that it is there. However, with UC it may complicate the recovery of my colon, so again, I was placed on Valcyte (an antibiotic).
My first week home, I took my medications religiously and on the times I needed to. I bought the book that everyone recommended, Breaking The Vicious Cycle, and started making my own yogurt. I was prepared to completely overhaul my diet, and I did. I kept away from fiber because of my inflammation, I ate single simple sugars, did this, did that, etc…but it was not enough. I was growing more tired and fatigued, still visiting the bathroom 20-30 times a day, and the pain was getting worse. I made one last trip to my local drug store to pick up some items. A scale was an important one because of my weight loss. To my surprise, I was still loosing weight. Since my hospital visit I lost another 10 lb. placing me down a total of 30. Concerned, I went back to the hospital where they found I had lost a lot of blood and was anemic. This was going to be a longer stay.
The first meeting with my doctor he explained the stages of what we were going to pursue. The first round was a seven day intensive drug treatment consisting of IV’s of steroids, antibiotics, another dose of steroids, and whatever else they had, basically they threw the kitchen sink at me. The possible second round was another drug called Remicade, which was explained to me as a “game changer” for people who have UC and crohn’s disease. The doctors called the method “rescuing the colon” which sounded serious and kind of freaked me out a bit. Lastly, if the drugs did not work then we would have to pursue surgery, a whole and total colectomy. With all the options presented the doctors were calm and informative so I felt that I was in the right hands, and I was, the Oregon Clinic employs some of the best gastroenterologists in the country, so I was relieved. We spent a week on each option, one week for the intensive drugs, and one week for the remicade. I believed the remicade to be working, I felt good, my strength was up, I was walking around, the pain had subsided, my color returned to my face…all good signs. However and again, the severity of my UC and inflammation of colon was horrendous. The first option and remicade did not work. On the last day of my second week something snapped in my system and everything started to evacuate itself, including my blood. I was bleeding internally in my colon and out of it, I was crashing hard, almost lost consciousness twice, and I needed a blood transfusion. The last and only option to pursue was surgery. Flirting with the idea of going home the day earlier, I was quite thankful that I stayed another day, who knows what would have happened if I had gone home. So,…we went in for an emergency total colectomy. I knew it needed to happen and prepared my self throughout my hospital stay just in case things went down this road.
The surgery was a success, thank you to Dr. Patrick Lee and the staff for their quick and calm sensibility. My recovery time in the hospital was about a week. I had a lot of ups and downs, aches and pains, but overall a feeling of relief that I was finally on the mend. I also was able to watch the 2013 NBA finals in it’s entirety…still can’t believe the Heat pulled it off, or that the Spurs let it go (however you look at it).
I am writing this exactly two weeks after my surgery
and I feel like I am definitely on the road to recovery.
To summarize: I spent three weeks in the hospital, I’ve lost 35 lb. (fat and muscle), I’ve never been this tired and weak of strength in my life, I haven’t been to work in 6 weeks and probably won’t go back for another two, but I feel totally and utterly relieved. I’m happy to say that I am eating full meals again, of course eating sensibly and healthily, but also testing the boundaries (high fiber, like salad is a definite no if people are wondering). I’m up and walking around, my abdomen is tight from the surgery and I need to sit throughout the day because of some pain from my incision and removal of my colon. All in all I’m on the up. If I could offer an Ulcerative Colitis sufferer any advice, it would be practice patience as best you can, and surround yourself with supportive family and friends, mine kept me from becoming emotionally broken .
The severity of my UC was fast and damaging. All in all, it took 3 months from my first symptoms, to my surgery, to my couch where I am writing this now. Never in my right mind did I ever see this coming. I guess there are some things that you can plan for and there are some that you are totally at the mercy of, unfortunately I was at the mercy of my UC. My eyes have been opened by my experience and I hope to take the compassion and patience with me that others showed me while going through this hardship. I still have two more surgeries to complete the ileo-anal pouch, or j-pouch, but I am not worried because of the care and knowledge I received from the doctors and nurses whom worked with me. I can’t thank my family and friends enough for coming to my aide and time of need, especially my wonderful and loving girlfriend. All their emotional support carried me through this whole bad dream.
My best to the suffering UC’ers out there, my thoughts are with you and know that you are not alone in this.
written by Zach
submitted in the colitis venting area