Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Joined Team UC in July…World Rocked in August!

Introduction:

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 : )

amazing colitis wife

Colitis Symptoms:

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.

My Story:

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.

Colitis Medications:

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.

Goal is to start SCD diet while I am beginning the Remicade process in hope to really make sure Colitis doesn’t show it’s nasty face in my life again!

written by Kyle

submitted in the colitis venting area




Washington

8 Responses to Joined Team UC in July…World Rocked in August!

  1. Adam
    Adam October 4, 2012 at 10:24 pm #

    Hey Kyle,

    Wow, that’s a pretty incredible UC story for sure.

    And one things for sure, UC is NO MATCH for you and your positive thinking. If you keep that going, sky is seriously the limit for you.

    Continue to get the small victories and next thing you know you’ll be schooling the others on the basketball court once again.

    Thanks for sharing,

    Adam

    • Kyle
      Kyle October 7, 2012 at 11:45 am #

      Adam- I appreciate all you do man! This web-site has been a tremendous blessing for myself and my wife!

      Thanks for everything!

      Kyle

  2. KimberlyHI
    Kimberly October 5, 2012 at 12:31 am #

    Oh my gosh Kyle what a crazy story! You have been through a lot! I am recovering from a bad flare myself, and it really takes it’s toll! Well for me, prior to the flare, I was actively jogging and walking the dogs and baby everyday and going to yoga. On prednizone, was still active but gained 25 pounds! My fault for eating so much! But then the flare came back, I spent 4 days in the hospital, and lost that 25 pounds. Well I suppose that was a good thing in some ways but I really noticed when I got home that a lot lost was my muscles, especially my calves and quads. So this past monday, since I am finally feeling better and down to about 3 BM’s a day, I tried a walk and jog, went great but had very sore legs for 3 days! Guess I over did it, really need to slowly work to build those muscles back up.
    Your story is so inspirational! I love how you view the positive, that’s what I try to do as well. Any day I am healthy and can be with my baby and husband living life is a great day for me, just gotta beat this nasty disease :)

    • Kyle
      Kyle October 7, 2012 at 11:32 am #

      Kimberly- I know how you feel with being sore the next day. I have pushed myself a little too hard on certain days, and the next morning I wake up and feel like I ran a marathon the day before. The biggest thing that I am learning is that our bodies just need time, you sound like me though, you are active and ready to roll. I have noticed the hardest thing is when your mind is back and at 100% is not always easy to remember your body is still in recovery mode. Keep the positive things at the forefront of your thinking. It’s important to look at all the blessings we have in life to get through the tough ones. Flares are no fun! I am glad to hear things are looking up for you and we’ll keep you in our thoughts and prayers. Thanks for taking the time to comment.

      Be Blessed

      Kyle

  3. Lisa OH
    Lisa October 5, 2012 at 5:54 am #

    Hi Kyle. You have been through it! Your faith and positive attitude are healing factors for you. I went through a similar situation as you this past winter/spring as well, so can feel your pain. C diff is the worst!! Sadly, my colon became toxic and they had to remove it b/c I didn’t respond to any of the meds. Then my c diff came back a few mos after I was released from the hospital!!! It took 7 mos from the time I was diagnosed (Dec 2011) before I felt like I was regaining my energy and feeling kind of ‘normal.’ It is uplifting to hear about how you healed in spite of your ordeal, and kept your colon. Yay! I have a feeling that you will continue to get better and show UC who’s boss!

    • Kyle
      Kyle October 7, 2012 at 11:36 am #

      Lisa- Thanks so much for writing me! I didn’t realize it while I was in the hospital but I guess I was pretty close to having the colon taken out as well. Kind of shell shocked when my specialists mentioned it to me on our last meeting : ) I am so sorry that you had to go through all of that, CDiff is just a nasty beast! I am praying against it coming into my body again every day! Not a road I want to venture down again. I know it’s a process of getting the body back to norm but it is encouraging to hear there is light at the end of the tunnel, and in this season I am learning so much about being patient and waiting, been a little challenge since I am a very GO GO GO type of person, but it’s been good for me! I will keep you in my thoughts and prayers. Thanks for commenting, it’s good to have people in your life who can relate. I appreciate you!

      Kyle

  4. Anna October 6, 2012 at 1:14 pm #

    Wow, that’s a rough way to be introduced to this lovely world of gut revolt.

    I just wanted to give you a heads up that the prednisone taper can be a bit shocking when you are in that twilight area between therapeutic and body realizing it needs to start making its own cortisol. I woke up at 4am feeling like my knees were exploding when i was tapering from a hospital stay. Called the doc, afraid something was wrong. by 7-ish, it had dulled and i was heading out to do field surveys and the doc called back saying it was normal and sometimes happened if the taper didn’t match your body’s response time. definitely would have been nice to know that beforehand. Though it does make you appreciate how much your body does for you and how much abuse your knees get from daily life.

    One thing i found unnerving was the inability to jump after the muscle loss from the UC flare. you make the motions; bending and straitening your legs and – you don’t leave the ground. Jumping was one of my happy little achievements on the road to recovery….

    C-Diff sounds scary. I’d like to avoid that one. be nice if the overactive immune system would just mob the infectious critters. You’d think it would be all over that.

    good luck in your recovery!

  5. Kyle
    Kyle October 7, 2012 at 11:44 am #

    Anna- I have totally noticed the jumping issue! It was so crazy when I was trying to show my wife my hops the other day and when I went to jump, I DIDN’T. But it’s slowly coming back, but it’s been a growing experience for sure to see how depleted your body can get when things are not working the way they should.

    I have noticed my knees are very sore these days, I am not sure if it’s the predisone or the fact they absorb a lot on the walking because my calf muscles are so low, but that’s been the thing that sits me down most of the day is just the joint soreness on the knees. I appreciate your input though, helps me to understand what is on me and what is on the meds.
    Predisone side effects are just crazy, feel like every week I am seeing something new pop up : ) But I start Remicade next week and they seem to think they will be able to get me off them next month, tapering off 5 mg per week now. Looks like the week after Thanksgiving I will be steroid-less! We’ll see though, you never know!

    Yeah C-diff advice, stay out of the hospital! The infection just hangs out there : ) I’m a month out now though and it hasn’t reared it’s ugly head, so they say if you can get a month out, your usually sitting in good shape. Praying against it daily though! Thanks so much for taking the time to comment, I will keep you in my thoughts and prayers. Us UCer’s gotta watch eachothers backs! Take Care!

    Kyle

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