Flaring Like Some Boot Cut Jeans

Kyle with his wife

me and my wife!

Greetings all my UC peeps!

How are all of you doing this fine and lovely day to be alive? Can’t complain here, well I guess that’s a little bit of a fib as I am currently dealing with a pretty brutal UC flare : ( What’s crazy is since beginning my blogging here on Ihaveuc.come I have not been able to blog about a flare because since last August’s crazy flare/c.diff battle, I have really had a solid grip on the UC life.

So on the amazing side of things, my wife and I just recently moved to a new city where we were both given full-time jobs. Praise the Lord! But I guess one of the downsides of moving to a brand new city and starting a brand new full-time job is that it can rise the nerve level on life a little bit and I think that pushed me over to the flaring side of life.

So it all started about 3 weeks ago, I started noticing that I was having loose bowel movement in the afternoon. During the morning BM’s I was seeing a little unformed but for the most part they were formed and solid. For about two weeks I was averaging about two BM’s a day. Like I said morning was usually looking good but afternoon was usually D style.

I dialed everything back on the SC diet and restarted the intro diet. I downloaded the phase list off the SCDlifestyle web-site and had been following closely to that. Adding one food every two days and making sure to note if anything triggered any type of symptoms. Things were not improving, started seeing a little more blood and the urgency in the afternoon was increasing. I have been noticing that I have been losing weight, I have not been weighing myself because I am trying not to get worried but I am noticing my legs and arms are losing size. The cramping has not been as intense as it has been in prior flares but my lower left side does always let me know it’s there but it is not keeping me up at night.

So after the increase in blood I decided it may be time to make a phone call to the GI. He advised me to start taking Lialda and if things didn’t clear up in the week that I may need to add a steroid to kick things. He had given me some samples of Uceris and advised me to start up on those if things didn’t improve. Lialda has never been effective for me but I am following the GI’s orders and have started the Uceris.

The first day after taking the Uceris, I noticed one of my best morning BM’s in the last couple weeks, which was followed by one of my worst BM’s that afternoon, noticeable blood in the bowl and on the TP. The following day was much of the same, increasing from 2 to 4 BM’s that day with no form and a red tint in the bowl after BMs.

So now what right? I am scaling the diet way back, living on the intro for the next 3 days and making sure that I stay fully hydrated. I will be calling my GI this week to get his opinion on things once his office opens. But I feel like I gain so much wisdom from you all so please feel free to comment and answer questions with your opinions or advice.

1. Has anyone had any experience with Uceris? What is your feelings on it? Did you see improvements? What was the timeline before you started seeing change?

2. I feel as though I am following the SCD step-by-step but am not getting much love from it, what are your thoughts on coming out of a flare using the SCD?

3. Obviously work is a huge concern of mine but I want to make sure I am being wise concerning my health, not putting anything before it, what advice do you have for working during a flare? Any tricks or tips that can hold off the urgency or D to get you through the day?

4. Medications and SCD? Do they mix or not? Noticed that there are some illegals in the medicines, is that an issue with SCD?

Hope you all are doing well. Don’t worry I am fighting. I am trusting the Lord to bring about healing of this flare, believing in faith that He will bring about a healing once again. I am thankful for the grace that I have in Jesus and am confident in His provision and hand upon my life.

Blessings,

Kyle









12 Responses to Flaring Like Some Boot Cut Jeans

  1. Kyle
    Kyle September 22, 2013 at 8:52 am #

    UPDATE

    I figured I would update you guys with the new found news of my flare. My wife called it like Babe Ruth called the homerun, as soon as I started taking the steroid and noticed an increase in symptoms and pain, she immediately called the doctor and requested a C. Diff lab be taken.

    I tested positive for C. Diff and now am on a 10-day anti-biotic called Dificid. I am currently at the lowest weight I have been since middle school. I am weighing 127 pounds with little to now energy or appetite. The big things for me right now is to make sure that I am holding liquids. The doctor has suggested that I drink water and gatorade to keep my electrolytes up. I know gatorade is not SCD friendly but right now we are just kind of going with what we need to to rid my body of the C. Diff.

    So now for the second time in just over two years I have had my world completely wrecked by this destructive bacteria combined with a UC Flare. I am super hopeful with this anti-biotic but know that I have a long road ahead of me.

    One thing the Lord has revealed to me in a major way through all of this as I cried out in excruciating pain and exhaustion “WHY ME?” Is that I would never wish this on anyone, not even my worst enemy in the world. This combination is so brutal that I wish no one has to go through it, so if it is me that get stricken with it, so be it, but I hope this means someone else is not having to deal with it. I love you guys and this is something that no one ever deserves to take upon themselves, loved ones, friends or family. If you begin taking steroids for a flare for a flare and things get worse, ask to be tested or C. Diff.

    That’s the update. I will keep you all informed as improvement is happening because it will happen!!!!!

    • Richele
      Richele September 23, 2013 at 6:49 am #

      We love you too, Kyle. I’m so glad we are all here for each other, it really helps so much!
      My dr has suggested Uceris for me too, but only if I start to flare while coming off of 6mp and Remicade. I’m skepticle. We’ll see.
      Be well!! Rest rest rest.
      Richele

  2. Gail September 22, 2013 at 11:33 am #

    Kyle, sorry to read about what you are going through right now. Can I suggest to you to avoid dehydration, instead of Gatorade (which has tons of sugar – probably your second worst enemy), drink pure, organic coconut water. It will balance your electrolytes naturally. Also, don’t forget the probiotics. You certainly need them for sure since you are now on anti-biotics again.

    Hope things improve soon for you.

  3. KimberlyHI
    Kimberly September 22, 2013 at 11:49 am #

    Hi Kyle! You and your wife are super adorable in the pictures! Sorry you are not feeling well. If I remember right you were on remicade and built antibodies to it right? Did you decide to skip humira and other meds and try SCD instead? I ask because I’m on remicade now and I haven’t built antibodies but it is becoming less effective so I wonder what will happen if it stopped working completely. I want to switch to lialda but it may not work for me, I think mesalemine meds may not do much for my flares anymore. But I don’t really want to go the humira route either.

    I haven’t had to take uceris nor have I ever had C-Diff (thankfully) but I do know that stress definately triggers my flares and I flare everytime I move and start new jobs ect. I can’t seem to get out of these flares without meds. Even if I don’t eat and just do clear liquids I will still be sick. It’s awful to be in a flare anyway but when you just start a new job it’s scary. 3 weeks into a job I was doing my best to hide the fact I was sick. After 3 more weeks I broke down and had to go to the ER. I ended up missing another 3 weeks of work to recover. So I probably should not have waited but I was worried about taking time off to recover at a new job, didn’t even want to take time off to see the doctor. Definately agree with you-your health comes first. If I had gone by that rule I probably would not have gotten so sick. I likely ended up missing even more work in the end anyways. Luckily they were very understanding.
    Get well soon!

    • Kyle
      Kyle October 16, 2013 at 9:32 pm #

      Hey Kim! I tried Humira for two weeks but started getting theses weird red spots on my feet and had this pain in my right shoulder, so my GI told me to stop it immediately. Lialda has never been effective for me, my GI told me that I can choose to take it if I want but for the big picture of my UC it really just doesn’t cut it.

      I am currently on a low dose of prednisone and will be continuing the SCD to treat my UC. I had to go away from it for the last 3 weeks as my weight dropped dangerously low and my GI put me on a “eat everything bad for you” diet to try and gain some lbs. I am slowly getting my weight and strength back but as I have learned from last year it is a time thing. My patience is growing daily : ) Keep fighting!

      God is Good!

      Kyle

  4. Michelle September 22, 2013 at 12:32 pm #

    Hello Kyle.
    In 2005 I had started the SCD while I was healthy. I had hoped I could get off of my 6MP, colozal and Canasa. However, in February of 2006 I took an anti-biotic (Omnicef) for the first time in years and ended up with a horrible case of c-diff. I continued the SCD. My weight plummeted. I battled with c-diff on and off for many months. I finally had to give up the SCD to get any calories I could in whatever food I could tolerate. I ended up in the hospital for 10 days in November 2006. On top of the c-diff and UC I got pancreatitis. I attribute that to my dosage of 6MP and the drop in my weight. The hospital was the best thing for me though. I got my IV steroids and a huge dose of vancomyocin. Everybody is different and will find what does or doesn’t work for them. For me, I think I should have given up on the SCD a little earlier on to try to keep my weight up. I also would have demanded a stronger dose of vanco up front instead of smaller doses that worked for a couple of weeks and then I would get sick again as soon as I finished my course. I wish I had also been more informed about fecal transplants for c-diff. I probably would use that as a first route if I ever had to deal with c-diff again. I wish you the best of health. I hope this ends for you soon. Stay positive and try to enjoy that beautiful wife and new job!!

  5. Juliet
    Juliet September 23, 2013 at 8:55 am #

    Hey Kyle!

    Lucky you have a caring and clever wife xxx I’m flaring now. Taking Asacol (as maintenance 6 x 800mg per day – it doesn’t work!) and on prednisone. My symptoms had disappeared but sine decreasing prednisone to 25mgs per day back with the bleeding and watery BMs! I’ve tested negative for C-Diff twice now! I’m not so sure the results are that accurate though… I’ve been on the SCD but since last Friday when symptoms worsened ive not been too good. I’ve lost 20lbs in about 2 weeks so something’s certainly not right!

    I’m off to see a naturopath doctor this week but I’m thinking I shall ask my GI about some more tests too! It sucks that we are all either suffering now or have done so in the past. It seems that you have a great support system and you know what you’re dealing with. It will get better. Maybe the D-Diff is the reason the results from diet were affected too??? I’ve never heard of Uceris! My GI wants me on remicade as its the only drug I’ve not had apart from methotrexate and she’s reluctant to put me on that cos I’m female :-)

    Keep us posted with how you’re doing xxx

    • Kyle
      Kyle October 16, 2013 at 9:36 pm #

      Remicade worked great for me, while it worked! I only made it through 6 infusions before my body said “No More!” I broke out in hives and my GI pulled the plug on the Remicade. I am kind of out of options for meds, gotta stick with the SCD and trust it’s gonna get me to a place of remission.

      Not gonna lie, my GI did bring up the idea of surgery, but praise the Lord we are not at that place yet. I am praying the SCD keeps the knife away from my GUT. Reading and talking with different UCers if you stick with it, there is much success.

      Blessings,

      Kyle

      • Sandy October 22, 2013 at 11:57 am #

        Hi Kyle,

        I’m also Christian with UC and have been in prayer for healing. I was diagnosed in 2001. Medications used over the years were, Rowasa and Lialda. I am not one to be compliant with medication as of late due to the side effects. Doctors have suggested and written prescriptions for many others which I was afraid to take…I have a strong suspicion many of these meds exacerbate a flare over the long haul, as well as causing extra unpleasant side effects. Currently have been in a flare for several weeks and do use Rowasa Enemas (least side effects). I’ve noticed improvement as far as bleeding and pain. I’ve also been following a whole foods approach diet, along with, turmeric, tart cherry juice, pharmaceutical grade fish oil liquid and will be starting probiotics soon. In answer to prayer, I believe, I found Adam’s website. The website has been a true blessing! A year earlier I purchased the book “Breaking The Vicious Cycle” by Elaine Gottschall. Read it through, tried it a bit and thought it was to hard to stick with. Fast forward a year, Adam’s site brought it to my remembrance! Another book I believe I was led to is, “The Maker’s Diet” by Jordan S. Rubin…HIGHLY recommend! Will keep you and your wife in prayer, as we all know this UC is tough on our families as well.

        Take Care,
        Sandy

  6. Juliet
    Juliet September 23, 2013 at 8:56 am #

    *C-Diff

  7. Jeff O
    Jeff September 28, 2013 at 9:44 pm #

    Hey bro,
    My fiancee, who has UC, and I really enjoyed your post. Th anks for your witness. God is good.
    Peace,
    Jeff

    • Kyle
      Kyle October 16, 2013 at 9:37 pm #

      Amen Brother Jeff! It’s so crucial to have support from your spouse as this disease can be brutal. Keep the Faith! Be Blessed

      Kyle

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