Summer Time SCD Update!

Kyle with his wife

Kyle and his wife

Happy Summer IBD Family!

Hope you all are enjoying the sunshine and HOT! The wife and I just spent 10 days over on the east coast touring the cities of Philadelphia and New York and had ourselves a blasty blast of a time! Owning up the eateries SCD style. Things worked out pretty well, had to do a handful of pretty bland meals but we found several spots that made things work for us : ) There is a great spot in NY called “Hu-Kitchen” that is a “Paleo” spot but the SCD and Paleo are pretty close with a handful of differences but this place was great! They cooked everything with Virgin Olive Oil and coconut oil and it was spiced up with different herbs and spices to make the taste delicious! Hard Rock Cafe was another spot that was very accommodating and a burger spot in Philly called “Burger-Fi” was a quick spot to grab a bite SCD style, just make sure you get it “Green-Style” with no “Fi-Sauce,” I encouraged them to bring it over to the west coast!

My current state with IBD is kind of a state of confusion, I am still rockin’ out things SCD style. I had a sig-flex at the beginning of June and to quote my GI he said, “Kyle if I didn’t know you I would have no idea you had Crohns.” He didn’t notice any inflamed areas or any strictures or scar tissue issues. Such an encouragement to my wife and to keep at the SCD, only problem was I was hoping that I might be able to get some answers from the flex as far as why I am still experiencing constant cramps in my gut, primarily on the left side. Still wondering, why the cramps, I asked my GI if there was any other way to find out answers, he sent me to get a CT scan of the upper abdomen and once again I got another excited call from my GI celebrating at how great everything looked in my gut. I was once again excited, but still confused as far as why I am still experiencing stomach pain.

My BM’s are once a day in the morning and for the most part of solid and formed, had a week or two stretch there was loose BM’s in the morning, think there might have been some illegals in the juice I had to drink for the CT scan, but were still semi-formed, No D going on. But I still have these constant cramps, some days are definitely more of a pain than others. But never curled over laying on the floor like in a flare state but honestly just a constant grip on my left side of the gut that is just there. Heat pad at night helps me get to sleep and for the most part I tend to sleep through the night. So…. What to do?

My GI has recommended a one week 20 mg of Prednisone, hoping that there may be some smoldering IBD inflammation going on that a dose of preddy might clear up. He also mentioned the idea that there could be some unsettled bacteria going on in there and talked of the possibility of a 10 day dose of an anti-biotic called tetracycling (sp?) coupled with Flagyl as we do not want to stir up the C.Diff again.

I guess I am to a point now where I just have no idea what the best step for me to take is. I am loving the fact that I am so close with getting back to a normal feeling again, but I would love to be able to kick these abdomen cramps as there really hinder me on a day to day and can wear on a guy dealing with it day after day. I am so thankful for the comments from my last post but am hoping that someone or hopefully someones might have some advice on their own experience or thoughts of what could be going on.

I am now almost a year out from my last flare and I know healing the gut takes time, but I am not getting any positive steps with the gut cramps, it is the same feeling as I had when I was first coming out of the flare last September. If you guys could drop any insight on things I would just be so thankful, feel like we are just kind of playing a guessing game and that is not where I want to be. I am so appreciative for Adam and all the IBD family members on this site. You guys all rock!

written by Kyle









19 Responses to Summer Time SCD Update!

  1. Adam July 31, 2014 at 1:43 am #

    Hey Kyle,

    Thanks once again for sending in your story, dang amigo, I was going through before getting it published and I think this is lucky number 12 for you, twelve posts…(way cool of you to share what’s up once again).

    I’m super happy that you’re seeing some positive results from how you’re going about treating your IBD right now, especially since I clearly remember the first communications we at the site had with you way back when….right:) And even more than anything, it’s great to see you wanting to get to the 100% mark (heck, we all deserve that right senor???!!!)))

    I’m wondering if there’s a simpler fix to getting you totally over the hump. And what I mean by that is something to try instead of antibiotics and prednisone. I’m no crohn’s expert, but I’m pretty sure I’d want to try all sorts of other things before jumping on any antibiotic train ever again. As you know from some of the related posts (and even the gut bacteria interview I did at Stanford University witht the immonologist and microbiologist scientist), whenever we/you take antibiotics, it is similar to playing Russian Roulette (please dont ever play that game…and I’m sure your beautiful wife would never let you get close to that one either), but seriously, its proven that it is impossible to predict the state of our gut bacteria as a colony or “collective group of strains” post a round of antibiotics.

    Prednisone short taper…not end of world, but I hate that stuff as much as the rest. To many evils, not enough goods in my opinion.

    So…what to do…

    I think I’d take a look at your diet right now. What are you eating. Heck, you know my personal email. And since you’ve hooked the site up with so much in terms of great helpful to read stories over the years, send me a detailed list of what you’re chowing on on a regular basis. EVERYTHING. Breakfast, lunch, dinner snacks etc…drinks (don’t forget your drinks senor…too many people think drinky drinky stuff doesn’t play a role in bloody you know whats …and cramping for that matter. So bust me the details. Or heck…put them down in a comment below here and I’ll try to let you know my thoughts on what I’d reconsider if it was me. And if there’s some good stuff I think you should add…i’ll let you know too.

    I’m peaking right now in terms of my health which is cool. Yes, i do have many more years on SCD eating and post diagnosis from UC (which for some who haven’t heard or know of Crohns…they are darn similar, many reading this site will be diagnosed with Crohn’s someday…and no need to trip…it happens, hard to distinguish between the two for many a good GI docs…again, no tripping out please.)

    Alrightee good sir, you be good, cheers to your lady for sticking by your side and bringing you around NYC.

    laters,
    Adam

    • Kyle
      Kyle August 1, 2014 at 1:58 pm #

      Adam – I will create a weekend journal of everything that I eat and shoot it to you on Monday. Thanks so much for being willing to help! I appreciate it brother.

      Kyle

      • Adam August 2, 2014 at 3:50 am #

        Sounds good Kyle, have a great weekend and chat soon:

  2. Marlee July 31, 2014 at 3:47 am #

    How frustrating, to be having pain and the docs not be able to figure out why! A couple thoughts crossed my brain so I thought I’d pass them your way. You mentioned having a flexible sigmoidoscopy. How long’s it been since you had a full colonoscopy? As you know, the flex-sig can only see up there so far, so I would wonder if the doc needs to visualize much farther up to see anything. You mentioned having Crohn’s, not UC, so maybe there IS inflammation somewhere up higher causing you pain. Sounds like he thinks he looked at everything with both tests you had, but I wonder sometimes about what a CT can really see other than major malformations. I read your post a couple times, but still wasn’t clear. How long have you had these cramps? You said “it is the same feeling as I had when I was first coming out of the flare last September. ” Does that mean they went away for awhile and now they’re back? Or you’ve had these same cramps constantly since last September coming out of a flare? Anyway, if it were me I wouldn’t be taking any meds yet to treat inflammation or infection your doc is not even sure you have. But that’s me. Antibiotics (for a bronchitis) are what completely messed me up again after a 5 yr. remission, so I joke that I may never take antibiotics again for anything unless I’m in a hospital dying!!! If you DO opt for the Prednisone, I’ve never heard of 1 week of it. At the least, it’d be several weeks since you’d need to taper off it. Even at 20mg, you’re never supposed to just stop it! So maybe you meant a week at that dose and then tapering. Just wanted to mention that in case you don’t know tapering off is important. And I would say if your doc doesn’t know that, you need to be seeing someone else. So, have you ever seen a naturopath and tried any alternative therapies? Supplements like boswelia, curcumin, aloe, L-glutamine, slippery elm, moringa, probiotics, things of that nature? Acupuncture? I’m in the process of trying these things, one at a time, to see if anything helps. So far, the couple I’ve tried haven’t helped, but some people swear by them. (I did find aloe gel, from a freshly cut leaf, to help in the past, but haven’t tried it more recently. It is naturally anti-inflammatory, anti-bacterial, anti-fungal. Read about it and see youtube videos on how to get just the inner gel from the leaf. You don’t want any of the brownish stuff that oozes near the base of the leaf when you cut.) If you’re open to anything like that, buy a small plant, try a little for few days and just see how your body feels. There’s actually a lot of conflicting info. out there about some of these supplements, but you know, they don’t have the known side effects that Prednisone and other conventional drugs do, so I’m willing to try them! And lastly, how to deal with the cramps now. The thought of a TENS unit crossed my mind. Has anyone reading this heard of using one for bowel cramps? Maybe a few sessions a day to help interrupt the pain signal would help. Have no idea if it’s in any way contraindicated for bowel issues, but it’s used for back injuries and such. That wouldn’t address the cause but may help you deal with things for now. I don’t have crampy pain, so I’m not much help. Surely someone else will comment on what they do. Best wishes!

  3. Kelly July 31, 2014 at 4:25 am #

    Hi Kyle,
    I have been lurking on this site and facebook and watching Adam’s videos for a couple months now, so I’m don’t have a long history here. I have a confession though: Right now, I am being a huge moocher, because I haven’t ponied up for the book. Sorry, Adam, it’s in my plans, though, cross my heart. ;)

    Anywho, I agree with Adam and Marlee on the pred and antibios. It’s gotta be rough having those symptoms and there being no evidence showing up as to why you have them. I would be hesitant to risk messing up an almost-all-the-way-good thing with either of those options, though. Your doc sounds pretty cool as far as docs go, but he is still trained to respond to your concerns with “ok, let’s try this pill”.
    If you had this before, and it went away, did it just fade away on its own, or did you take meds for it? I agree with Marlee, and would not use the scattergun approach and “treat” something you may not have. As Adam alluded to, it may be a matter of subtracting something from your diet, not adding a med. You are so close! Stay the course! That’s just my 2 cents. ;)

    • bev August 1, 2014 at 7:25 am #

      I agree with Adam and Kelly…don’t let anyone talk you into meds. They just are not the answer, no matter what.

      Are the cramps so bad that you really think that you have to ‘resort’ to those nasty old meds? No offense, Kyle…but I’d rather have the cramps (lord knows, we UCers can handle pain…lol). We UCers’ long history of meds and their side effects are way beyond this, no? Do you REALLY think taking more drugs will work? Ask yourself that.

      Cheers, and great vibes,
      Bev
      :)

  4. MG July 31, 2014 at 2:36 pm #

    Hola Kyle:
    Have you ever tried Bentyl for the cramps you’re suffering. This is de pill I take and works for me. I actually take the 20 mg twice a day ( you can take it up to 4 a day). I’ve been struggling with UC for almost ten years now. SCD diet is great. Really helps people like us.
    Also the help of our Lord helps me to continue fighting this disease.

    • Kyle
      Kyle August 1, 2014 at 2:13 pm #

      Does the Bentyl help you with the cramping? Do you have any side effects? I am just exhausted by these cramps and if I could get something that would take a little edge off it might make things a little easier on life. There is power in prayer and I am lifting it up every day, relying not on my own strength but strength from the Lord. I would of been done with things a while ago, but the Lord keeps me fighting. Let me know. Thanks!

      Kyle

      • MG August 1, 2014 at 3:45 pm #

        Yes. It help me. Side effects? Some sleepiness. There are other medicines for cramps but I find Bentyl the one with less side effects. Ask your doctor about this pill.
        Good luck!

        • Kyle
          Kyle August 1, 2014 at 3:54 pm #

          Might be worth an ask of the GI. I am just needing some type of relief. This has been an ongoing process since I first got diagnosed over 2 years ago now.

          • MG August 1, 2014 at 4:34 pm #

            Yes. Ask your doctor. What you can lose? It’been working for me for years now.
            God bless you.

        • Kyle
          Kyle August 1, 2014 at 6:30 pm #

          Did u have to take it for a while before you felt it working or did u notice change right away? Got a script in now. Gonna chat with Adam too see if we can tweek the diet a bit. I may try them out and see. Thanks again!

          Kyle

          • MG August 1, 2014 at 9:52 pm #

            At first I took it for a while. Not to much time. I started feeling better almost immediately. I took one before breakfast and one before going to bed. After a couple of weeks, one before bed. Once I was feeling better I just took it before going to bed. Now I take the pill just when I feel the cramp is coming. Thank God those cramps are not bothering me for a long time.
            I don’t know if this pill is going to help you. Ask your doctor. Try it for a few days to see what happened.
            I understand perfectly what you are going through. Remember that actually you feel much better that months ago.
            I read that you are a teacher. I was a teacher too until last year I retired. It was awful when I have to run to the bathroom and I had 30 kids
            on the classroom. Most of the time I asked another teacher to watch my class for few minutes.
            I’m pretty sure that that’s not going to happen to you.
            You are taking the right steps.
            Good luck!

          • MG August 1, 2014 at 9:59 pm #

            Generic name for Bentyl: Dicyclomine HCL
            I took Tab. 20 mg
            I think you can take it in capsules.

      • Mary August 2, 2014 at 4:04 pm #

        Hi Kyle, you have achieved great results so far with your condition and you will beat this! Prednisone, as you are aware, is a nasty drug (but a life saver as well)! My son was put on 2 x 40mg tapers this year and he suffered with mouth ulcers, many sore throats, headaches. It only gave him relief at 40 mg from his abdominal pain and with each taper further problems arose, eg nausea and vomiting.
        Anyhow, he was in a lot of abdominal pain and we convinced him to have a number of accupuncture sessions. They not only used accupuncture needles, but gave him abdominal massages. After the first visit he was in a lot of pain with gas (the smell from him was quite vial!). This lasted 3 days and then no pain, no gas – it was amazing! It seemed there was a lot of bacteria which needed to be released. He is under the care of a great doctor now and takes a special antibiotic along with glutamine, astaxanthin and a 200 billion probiotic. Still takes 6 mp (been on it for over a year) but it has done absolutely nothing for him, so I hope he is confident enough to stop it soon. He said to me the other day, he feels the best in 7 years (since diagnosed) :). Also, you may want to go on line and look at a program called Lateline, ABC australia. Prof borody was interviewed regarding FMTs and one of his patients (who was a Crohns sufferer ) was interviewed and described how the Prof cured her Crohns with FMT. You may find this interesting.
        All the best Kyle and I hope you get relief very soon!

    • Kira H
      Kira h August 8, 2014 at 12:09 am #

      What is Bentyl? I am so sick of the cramps!!! I am a teacher too – going back after a yard leave of absence – I tried a year off to see if stress relief made a difference but it didn’t. I am most likely headed for surgery( consult on the 15th) but ya never know… Thanks for sharing your stories.

      • MG August 8, 2014 at 2:44 am #

        It is a prescribed tablet or capsule. Relieve spasms (cramps) in the stomach and intestines. Ask you doctor about this pill. Generic: dicyclomine.

  5. shelly in maine August 1, 2014 at 6:02 am #

    Hey Kyle..great news on the results. I know I had asked you about the flex vs to whole kit and kaboodle…is your Doc sure he got in there far enough? Well, you know how I feel about antibiotics..scared to bitsies and the meds only if necessary!

    Here’s some thoughts…you can go back to the beginning with your SCD diet and basically try the elimination diet(something my Dr. suggested at 1 point you can look it up, but basically you start with a few things you know work for you and add things back in 1 at a time). Long and tedious, I know. What I did learn was that i had to follow the very basic SCD, pecanbread site…stages. I could not do what Adam did as i could not tolerate and still can’t much of the meat, spices, etc. I also have issues with eggs and sometimes 1 day is okay and another not. I think our guts constantly change so check out your probiotics, too. May need to keep tweaking. Like Adam said…there are many hiddens in our foods and drinks and things bother us that we often don’t realize.

    I think natural is the first route to go…you’ve already come this far. Perhaps a holistic. Dr. And certainly think about Acupuncture…it didn’t work for me, but i know many it has…what do you have to lose except $!!

    Best of luck. Keep us posted and stay positive…you’ll get there! :-) Best, Shelly

  6. Emilie September 14, 2014 at 1:33 pm #

    Hi Kyle,
    A fellow uc’er and elementary teacher. First, I am so sorry about your pain. I started having a lot of upper abdominal pain and finally was diagnosed with celiac by a biopsy. I am adhering to a strict gluten free diet and feeling much less pain. Also, in the past I had used acupuncture to help relieve pain. Best of luck.

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