A Severe Case of Pancolitis

Introduction:

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.

Symptoms:

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

11 Responses to A Severe Case of Pancolitis

  1. Joan H
    Hope July 5, 2013 at 3:42 pm #

    Hi Zach – Thanks for sharing your story. You are amazing! Brave and tough! I wish you the best in your recovery and thank you for your story. We’re all in this together. Best to you – Hope

    • Zach July 5, 2013 at 8:53 pm #

      Thanks for your comments Hope. I’m on the mend and was able to get to some yard work, so my strength is coming back, it’s good to move around again, take care – Zach

      • Joan H
        Hope July 6, 2013 at 10:19 am #

        Hey! Yard work is awesome! I think everyone on this site would say the same thing :) Every step you take, is a step in the right direction. Thank God, huh? Pace yourself and try not to be mad at yourself if you have to slow it down a bit, or have a day when you’re not able to get to the yardwork – you’re still in recovery. But I have to say, being new to this site myself, that it’s a great place of encouragement and hope, and I realize – like I’m sure we all do – how much little steps mean so much. So congratulations, and I’m really glad to hear you have some energy coming back – fantastic news! – Hope

  2. paige July 5, 2013 at 4:18 pm #

    Your story is very similar to mine! I wish you health and happiness!

    • Zach July 5, 2013 at 8:54 pm #

      Thanks Paige, much appreciated!

      Zach

  3. Bethany July 5, 2013 at 4:50 pm #

    Zach,

    Your story is amazing and inspiring. I am also looking into pursuing surgery options and was only diagnosed 9 months ago. I have tried and failed on pretty everything and my colon has decided it doesn’t like me anymore. You are truely brave and thank you for your story. I pray for a fast recovery and continued good health!

    • Zach July 5, 2013 at 8:57 pm #

      Hi Bethany,

      My best to you and your decision, take care – Zach

  4. k July 6, 2013 at 1:24 pm #

    Hello Zach, I wish you all the best in your recovery. It sounds like the really hard parts are now in the past.
    I too had emergency surgery (three days after I was correctly diagnosed with uc) in the 1970s. Ended up with an ileostomy as the j pouch hadn’t been “invented” yet. That was nearly 40 years ago now, but it hasn’t been too bad; certainly much better than trying to live with uc.

  5. shelly in maine July 6, 2013 at 4:57 pm #

    Congrats Zach…great add to the site. Not sure if you’ve checked out the other surgery stories, but they will be very helpful if you have any questions. Also, Curtis has some cool shirts and stuff he’s designing.
    Continued health and healing, Shelly

  6. Iqbal Naiyer July 6, 2013 at 6:00 pm #

    This is so co-incidence or what? I am from San Francisco but I was working in Portland since November 2012 and On – May 31st, 2013, after suffering for 3months and being on 8-diiferent anti-biotic trial and error by doctors finally through colonscopy I was diagnosed with severe Pancolitis (UC) as well. as per doctor, it may have come from environment we live in, food we eat and stress so may have other reason.

    Currently I am doing better, and regaining so weight but for sure this SCD diet is really have worked on me and I am going to stick with that for a while and slowly but surely will add some illegal diet which “breaking the vicious Cycle” did not mentioned healthy way of cooking,importance of organic, no focus on lowering the inflammation, specially processed food allowed as long as if legal, i.e. juice, lard) ignore the healing process of fresh juice, mineral broth and/or fermented product other than scd yogurt.

    for more info please go to site below
    http://www.youtube.com/watch?v=fvxexIuEF0c

    Good luck to you Zack and wishing youy for faster recovery.

    Iqbal Naiyer – San Francisco

  7. FRANK O'SULLIVAN November 19, 2013 at 1:58 am #

    Hi Zack,

    It’s November 2013. As I write this Iam geting over a pancolitis flare and my G.I. says that surgery may hve to be an option for me down the line. How are you doing these days post-surgery? What sort of things are allowed on your diet? Are ou now able to lead a normal life? Anything else you would like to mention about post-op life?

    A little worried by all of this so your response will be appreciated,

    Kind Regards,

    Frank

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No matter what, colitis flares don't last forever, don't forget it:)