Me and My Crohn’s – Year 7

It’s crazy to think that It’s been 7 years since I got diagnosed with Inflammatory Bowel Disease, some of the moments I remember like they were yesterday, some of them, I think my brain has tucked back into a hidden place never to surface again. Oh yeah, my name is Kyle, I am a 35-year-old 7th grade teacher from a small town in WA state. I guess it’s been a little bit since I last posted a blog with Adam, don’t look at that as a bad thing at all, things have actually been going really well for me and my Crohn’s disease (Originally diagnosed with UC; so, I am grandfathered into the site J)

Since my last posting, a lot has changed in my life, I am now a father of 2 amazing boys, my wife and I are coming up on our 8th year of being married, I have been full time teaching for 6 years now, and I have taken control of my Crohn’s Disease and am healthier than I have been in a long time. I may need to catch some of you up to speed…

When I was first diagnosed, things got bad, like really bad, I went into a spiral with a flare coupled with a bacterial infection called C.Diff that would put me in the hospital for nearly a month. That whole next year was a trial and error to get things under control with medication. I would have allergic reactions to both Remicade and Humira and within a year be back down the road of flaring and infection relapse, something had to change. Enter the Specific Carbohydrate Diet (SCD), my wife and I made the decision to take on the SCD as a means to manage my Crohn’s Disease 5 years ago. Since then, I am on the healthiest stretch with my Crohn’s disease. My wife and I were out of options, the next step was to start taking things out of me, and we just went ALL IN on the SCD, and it proved the medical field and some nay-sayers in my life wrong!

This decision did not come easy, like I said, we were out of options, long term prednisone use and surgical procedures were not something we were wanting to do. So, we used some great internet resources, the “Breaking the Vicious Cycle” book, along with a lot of great people that I connected with on here, and we went for it! We struggled, it was tough, there were days I wanted to just give in, but what was my alternative? Cutting stuff out of me, or CRAZY pills for life?!?!?! I will pass. Through diligence, prayer, and discipline I have been able to regain control of my health, looking back it was one of the hardest, but best decisions we could have made.

Last February, my wife and I made the decision to have a colonoscopy done. I was put with a new GI and he wanted to get the “full look” at what we were dealing with my Crohn’s, and I gave it to him. (Haha!) His response was, “it looks like the diet has done it for you Kyle, you are currently in remission with the disease in your gut!” BOOM! How you like them apples?!?! His concern for the past year has been the diet management, the good news for us is he is not opposed to means of dietary interventions for Crohn’s, now he is skeptical, and I get that, but he is giving my wife and I the reins for things, which is a nice confidence booster in the patient and doctor relationship.

Now I am not cured, and I am not saying that the magic bullet gets rid of IBD. I still have active Crohn’s disease, I have an active fistula that is currently being managed by a seton placement (think of it like a constant drain in your body). This part cannot by fixed by diet, I tried a run at a medication called Stelara last year, in hopes it would heal the fistula, and it failed. So, I am not anti-medicine, but for the current stage of my life, I am pro ‘as close to normal life as possible’. I have 2 growing boys that I want to be active and a part of their life, the diet gives me my best chance at that! I cannot continue to play the medicine roulette game, where you continue to trial and error things and really miss out on giant pieces of life, I just can’t risk losing any time right now. It’s way too important!

Crohn’s or UC can be a pretty overwhelming thing, but there are ways that you can take control of your health. For me, the SCD has given me a chance at a new normal in life, one in which I can be active and present in the life of my wife & kids. I am not giving that up until I absolutely have to, and the continued “good check-ups” with the doctor show that you can have a say in your treatment, and when you are committed and disciplined, remission is possible!

I hope this blog brings encouragement and hope to those in the struggle and also to those who have found success in their treatments. Blessings to you all!




crohns

10 Responses to Me and My Crohn’s – Year 7

  1. Caroline
    Caroline August 11, 2019 at 4:19 am #

    Hi Kyle! I remember your story well as we were diagnosed around the same time and were active on this site. So glad to hear you are doing so well! Diet is an amazing thing and it’s so great when doctors empower us to heal ourselves.

    I’m doing well too- this year got a new GI and received my secondary IBD diagnosis of microscopic colitis! I’m doing so much better after receiving treatment for that. UC has been in remission for a few years and I’m feeling great.

    Here’s to many more healthy years for you and your beautiful family!

    • Kyle
      Kyle August 12, 2019 at 11:00 am #

      Absolutely Caroline! So glad to hear that you are well. It’s amazing what can happen when we take control of our health. Many blessings to you and yours! Take care.

      Kyle

  2. Elinor Thompson August 11, 2019 at 4:46 am #

    Wow, Kyle, it was so good to hear your results from the SCD diet as it’s similar to mine. Yes, like you, I am stuck with IBD and will always have it, but have been able to manage it these last 6 years on the SCD diet. I have UC, but my previous highly regarded gastroenterologist said I had both UC AND Crohns! I was hospitalized 7 years ago this month with a really bad attack and the thought was to try Remacaide or have my large colon removed and live with a bag. I didn’t want to do either but being on morphine for the pain and a high dose of prednisone and not being able to eat, I opted for the Remacaide. I was weened off the high dose of prednisone, which I think helped me the most, but it’s not a drug you want to be on for long. Remacaide may have helped me at first but after a year, I was still bleeding and getting pain and sick after eating certain foods. The prometheus blood test showed I had 100% antibodies to Remacaide a month after my last infusion. I was taken off the drug and continued taking the highest dose of sulfasalazine along with cortisone enemas and saw a surgeon who didn’t want to operate on me until it was a last resort. I, like you, was a teacher (middle/high school) for many years and figured I’d do my own research. I found the SCD diet on line and decided to try it, even though gastroenterologists had always told me diet had nothing to do with the disease. I bought Stopping the Vicious Cycle and used it like a bible along with other books by people with UC, subscribed to IhaveUC and followed the SCD diet very strictly. After 3 months, I started to see real results. I started exercising again and feel that regular acupuncture has helped too, along with getting enough rest. In about a year, I was starting to feel pretty normal. Now after 6 years, I have to say I am in good health, hardly feel I have UC ( except when I cheat and eat the wrong food) and am very active physically. I walk at least 10,000 steps a day and play a lot of golf (I’m retired after nearly 30 years teaching!). I’m amazed at how well I feel. I changed doctors and he immediately did an MRI of my whole digestive system and said that I DO NOT have Crohn’s. I still take a high dose of sulfasalazine and will probably always have moderate UC, but my new Gastro Doc says it’s now a silent form of the disease that some people have. Friends and relatives are amazed that I am so active and look so well and younger than my age ( I’m going to Rome on my 75th birthday this year). I attribute it to the SCD diet. I wish I knew about it 41 years ago when I was first diagnosed with UC! Continued good luck to you in dealing with your disease and following the SCD diet. It’s not for everyone, but it seems to be working so far for us.

  3. Kaushal Gala August 11, 2019 at 6:33 am #

    Good blog, Kyle. It is nice to hear a positive outcome to your IBD via diet management.

    I also have UC since 2016, and diet was the key to help me get into remission. I went into no medication mode right away, and with help of functional medicine practitioner, got control of my IBD.

  4. Wendy
    Wendy Hammond August 11, 2019 at 7:08 am #

    It’s good of you to take the time to post your experience. Maybe it will help someone else who is struggling. I am glad you are relatively healthy considering your disease. Best wishes.

  5. Rodney Bursiel August 11, 2019 at 8:42 am #

    Why don’t you have surgery for the fistula? I had one s few ago and they were able to correct it.

    • Kyle
      Kyle August 12, 2019 at 10:58 am #

      Good question. The fistula is located within the muscle, so the surgery and recovery would be quite intense. Also, my surgeon says there is about a 50% chance of reoccurrence after surgery and with my track record, it’s probably highly likely to return. I am just happy to have as close to normal life as possible at this current time in my life. I am not trying to rock the boat and send my Crohns back into a tail spin. I am so happy to hear you had success in your surgery though, maybe down the road it will be something to consider! Blessings to you!

      Kyle

  6. Carl Bass August 12, 2019 at 4:22 am #

    I have read these comments and wonder why Dr’s aren’t prescribing Low dose Naltrexone. I had UC so bad for almost 2 years taking Prednisone, balsalzide, etc. Then I went to a more “natural” Dr. who changed my diet and put me on Low dose Naltrexone 1.5 mg to 4.5 mg. My UC stopped after 2 WEEKS of starting LD Naltrexone. No side affects and a cheap tiny pill that makes your brain work with your gut to heal you. Its now been 1.5 years with no gut issues. Its being used on almost 20 different auto immune diseases. Thank you Jesus!

  7. Erle August 12, 2019 at 1:49 pm #

    How do we get SDC

  8. Bethany Ryan August 12, 2019 at 3:38 pm #

    Thanks for sharing your story! My 5 yr old tuurned a corner when we started SCD. He’s still on Remicade and MTX but we are lowering doses of both every couple of months since he responded instantly to SCD. It was such a difficult decision to go on SCD since he is so young but I don’t regret it for one second. Our whole family is on it and we love it. He’s growing and his disease is not active. So thankful!

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