All Is NOT Lost

Roger W fIntro:

I’m a thirty-nine year old single lighting technician in the film industry. I was diagnosed in June of 2012 but had mysterious symptoms for years that I blamed on working 12+ hour days and eating off a catering truck. I’ve had two colonoscopies and one partial sigmoidoscopy.

I’ve written a rather long version of my story with UC at www.bonsaiyourego.com. Twitter: @bigmeanbunny

Some more about me:

Other than a sadistic ability to work long hours in weird places I’m an avid yoga practitioner. I live in Vancouver, BC, Canada.

Symptoms:

I currently have no symptoms.

My Story:

I find myself increasingly frustrated with the stories I read on ihaveuc.com. I sympathize with everyone as I myself suffer from the same disease and know how terrible and frustrating it can be. I also understand how unpredictable auto-immune diseases are and that there are no tried and true rules about managing them. However, I don’t understand the lack of success I’m constantly reading about.

My Doctor initially described my UC as moderate to severe after my first colonoscopy. My first remission was short lived as I made very few changes to my lifestyle and diet and hoped that the Asacol would be enough once I’d tapered off the prednisone. I barely made it six months. My second flare was less severe but my Doctor recommended I start taking Imuran. After doing some reading I decided I’d need to get a lot sicker before I took a drug such as Imuran. I did another run of prednisone (which I tried to taper off a little quicker but not dangerously so) and this time I fully committed to the Specific Carbohydrate Diet and started taking a daily packet of VSL#3. I eat homemade yogurt as well as one store-bought, technically non-SCD compliant grass-fed yogurt containing only milk and bacteria. I also eat sauerkraut and kimchi daily in the hopes of eventually replacing the VSL#3 with probiotic food (or at least reducing my usage to every other day.). There are a few supplements I also take:

AOR Boswellia Serrata Extract (liquid caps only, not the powdered)
AOR Curcumin
AOR R + NAC SR (not necessarily for UC)
Vitamin B, C, D, and K.
Krill Oil
L-Glutamine (10-50 grams a day depending on my schedule)

I didn’t consciously cheat on my diet for the first six months although I know that a little snuck in via the catering truck (what do you mean there’s sugar on the carrots!?!) I’ve allowed only a few occasions of mild cheating in the subsequent four months (a few trips to my favourite Taco and Ramen shops and a few beers on a trip to Spain) otherwise I maintain the practices of SCD. I juice every day (kale, carrots, lemon, apple, beet) – although I don’t believe this has magical properties…. it’s just tasty and a nice way to start the day. I still drink alcohol semi-regularly (SCD compliant) and eat red meat frequently without a problem. I also still regularly work 60-80 hours a week but I have more energy now than ever, in spite of the lack of carbs. I add grass-fed butter to everything I can (even my coffee, which i drink two or three of every day without complication).

This has been an amazing learning opportunity as it wasn’t until I had my hand forced by UC to clean up my act that I realized how much I medicated myself with the food I ate. When I was tired, I ate. When I was unhappy, I ate. When I was celebrating, I ate. And the things I ate were exactly the foods that the data suggests create an environment perfect for Ulcerative Colitis. Without those crutches I was able to really examine my relationship to food and the environment (internal and external) that cultivated the desire to fill myself with the wrong things and for the wrong reasons.

I’m not claiming to be perfect. I’ve failed at maintaining a consistent meditation practice and I still work too much in too high stress an environment. These are all things I’m working on, including drinking less, although for reasons other than my UC; I just don’t sleep as well as I’d like/need with a couple drinks in my system. I just want people to know that all is not lost. After my last scope the doctor didn’t even bring up the Imuran and said I could wait three years for my next colonoscopy unless I had complications. Perhaps one of the many things I’m doing is working and perhaps I’m just lucky the second time around and everything will go sideways sometime soon. Either way I feel like the best thing you can do is be your own advocate. Have the discipline to do what you need to do to make yourself healthy and believe first and foremost that you CAN be healthy. It sounds cheesy but you’re worth it.

written by Roger W

submitted in the colitis venting area

Adam iHaveUC guy

Adam Scheuer, founder of iHaveUC.com

Hey Roger,

Way to go with tackling the symptoms you were diagnosed with and dealing with for even longer.  I think you’ve got a great way of handling things, and definitely keep us posted on how things continue for you.  I wish you well with trying to move away from some supplements and “supplementing” with natural foods as well to get the good stuff you need/want.

There’s one thing I wanted to let you in on, and its no big secret, but since you’re an important member of the site, you aught to be clear on…

You wrote in your story:

“I find myself increasingly frustrated with the stories I read on ihaveuc.com….I don’t understand the lack of success I’m constantly reading about.”

So here’s the deal from my point of view.  And bear in mind I’m the person who has added the 2,000 plus stories to the site (every single one) and I’ve read multiple times each one, and spoken to thousands upon thousands of UC’ers over the 5 years since starting the site.  Anyways…

The most common time that people come and visit the website is…drumroll please… when they are the middle of a flare up.  Either right after their diagnosis when they are still trying to figure out what the hell UC is, or when symptoms come back.  So that said, you are actually a somewhat rare case (I’m sure you’re not suprised by that amigo…I read your blog you billionaire you!), and by “rare” I mean in when you are actually sending in your story with regards to your current UC symptoms.

So what does all this mean.  Well, whatever you want it to mean.  It just is what it is, and as I’ve certainly found out, people with UC need a place to vent what’s on their minds with other UC’ers since there aren’t many good places to do that…yet.

Keep on rocking what you’re doing.  I think you’ve got a great thing going (super similar to what I’m up to, and yes, it does work well for many).

And do me one favor, (now that I’ve setup your account and added your picture to the system…) WRITE SOME COMMENTS on other people’s stories after you read them!  I’m super positive others would like to hear from you!!

Adam




Ulcerative Colitis Tips


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34 Responses to All Is NOT Lost

  1. Roger W
    Roger February 19, 2014 at 1:41 pm #

    Canucks? No. Calgary Flames. And Team Canada all the way.

    Perhaps a section for success stories is called for. :)

    • bev February 20, 2014 at 6:57 am #

      Oh…it’s the Canucks for me…and then the Leafs…I know I know….not since ’67

      And YES, go team CANADA!!

      • shelly in maine February 20, 2014 at 2:27 pm #

        Bev,
        Gold for Canada and silver for U.S. women’s hockey. :-)

        • bev February 20, 2014 at 2:33 pm #

          I know!! I can’t believe it…I thought we were going to lose…and then overtime!!

          Thanks, Shel…:)

  2. bev February 19, 2014 at 2:28 pm #

    Excellent post Roger! Thank you.

    I too am off all meds, in remission for the first time in 15 years, and prefer to manage UC with probiotics and L-glutamine. The meds always made me feel…well, like shit basically! Oh, and they never really worked either. I never went any further than asacol and the odd steroid enema…I vowed and still do, never to tale any more meds, especially Imuran, Remicade or any other immune suppressors.

    From a Penticton-er to a Vanouverite…cheers my fellow British Columbian :)

  3. Sher February 19, 2014 at 8:17 pm #

    Roger,

    That’s great your doing well… My first few years were not bad either, I had many months of feeling well… But Adam is right, when feeling well your not searching the web for support (hopefully you’re out enjoying your health), which some people take for granted.

    The “lack of success” you refer to, can be explained in my case by trying remedies, whether it be meds, supplements, diet etc. that work well for weeks, months and for whatever reason fail, out of nowhere! And the joy of having to use the restroom over 15 x/day… constant abdominal cramps, blood, loss of energy, weight loss, etc etc returns! We seek the comradere of others in our similar situation that can relate, give advice, or just listen to our story… And can say, “yeah, I’ve never met you, but I can relate, I’m here for you…and here is what helped me”

    It’s a very frustrating “disease” to have, there is no simple answer, there is no two of us with all the same symptoms… what works for one does not work for all. We are in this together… and I’m here to listen… good or bad.

    Be well!

  4. Roger February 19, 2014 at 10:56 pm #

    Hi Sher, Just to be clear, I have no problem with people venting their frustrations and seeking the support of understanding people on this website. I think it’s important to sound off, which is exactly why I wrote in. My breaking point was when I read the urgent post by a gentleman who wanted to warn people of the dangers of eating breakfast at McDonalds. After reading story after story of people struggling to string together a very long period of remission while taking very serious medications I just grew too frustrated to keep quiet. What are people doing if it’s coming as a surprise that eating at McDonalds will make you incontinent when you have an IBD? Just how serious an effort are all the people struggling to remain free of flares putting forth? Honestly? Are they really sticking to the SCD when they claim to have tried it? Did they give up after only a few weeks?

    I know it sounds like i’m claiming to have all the answers. I certainly do not. I’m fine with red meat and certain liquor. Others are not. I get that. I get that there aren’t rules written in stone about UC. But i’m highly doubtful of the claims people make about the programs they’re on given the failure I read about. If/when my UC goes sideways I’ll be the first to report it. I’m grateful every day for how well my guts are working for the last while. But I never forget that the cost of that is constant vigilance and adherence to a regimen that isn’t always fun. I’m provided catered meals at work and every day I walk past the dessert, and put only olive oil on my salads and hold the gravy and refuse the daily trays of candy and donuts and soda i’m surrounded by while everyone eats their hearts out. It sucks. But that’s what it takes. Are the people out there who are struggling, if they’re honest with themselves, really doing what it takes?

    • Sher February 20, 2014 at 11:57 am #

      I completely agree! Thanks for clearing that up! We all have to “live” and enjoy the special treats life has to offer! I as well, drink a glass of wine… have a french fry or two here and there, especially when my symptoms are under control. We deserve it :-)

  5. Donna G
    Donna G February 20, 2014 at 8:51 am #

    You’re brutally honest Roger, so glad you’ve attained remission. SCD has worked for me as well, and I think incorporating cultured foods has really made a difference. After all of those years of shoving pills down my throat honestly this diet is a huge relief.

    Donna

    • bev February 20, 2014 at 9:35 am #

      I think it’s just so frustrating listening to and watching other UCers go through the same damn things that we all have! Jumping through all of the hoops. Trying all of the meds, diets, natural remedies….it is all so exhausting isn’t it? This condition is still treated the exact same way by doctors as it always has been. The drug merry-go-round until one by one, they all fail, and it’s simply because there are no concrete answers for UC.

      We all just have to take care of our respective conditions in any way that works for each one of us. I am sure learning that.

      I don’t want anyone to get the wrong idea that I am tired of hearing others’ stories. On the contrary! I am just tired of no solution….

      :)

  6. shelly in maine February 20, 2014 at 2:19 pm #

    Ah so true Bev,

    And let’s not forget…remissin is great if you are in it, but we all know a flare can be lurking around the corner.

    Roger, you’re opinions and pathway are yours to share and vent. This site is for venting, but not at the expense of others. We all read things that are frustrating as I was reading the contradiction between yoga and the food cart and drinking. So i say, people in glass houses…
    Please share your successes and read stories of people who have had to have emergency surgery because their intestines/colons have burst and would die otherwise, or EIM’s that many of us have, extreme loss of blood, factors we can’t control, genetics, etc, etc. There are children and babies diagnised and they were not eating at a food car.
    Please be patient and empathetic and,most of all supportive. I am a lifer of UC, symptoms forever before being diagnosed by 15(I’m now 45), been off meds now for over 2 1/2 years, (SCD, natural meds, vsl RX, exercise, etc, etc…no McDonald’s or food car for me! :-) )my family is riddled with Crohn’s and UC-extended family, too…this is no fun ride, meds or no meds, it is a constant, ever changing battle/rollercoaster shitty ride…I wish this on no one!
    Be well, Shelly

    • bev February 20, 2014 at 2:22 pm #

      Well said, my friend. Flares can just pop up out of nowhere, leaving one at a loss as to why….

      :)

      • shelly in maine February 20, 2014 at 2:35 pm #

        :-) Thanks Bev, we know how fragile our existence with UC is…I feel like I’m living a functional flare now for however many months that the ear/sinus infection set off. So many things we can’t control and then our bodies are out of whack and our immune systems seem to get confused and worn down fighting the other things and boom!

        Roger..if it was as simple as SCD for all don’t you think there would be no UC?

        • bev February 20, 2014 at 3:02 pm #

          I feel the same. I am still not 100% and may never be, since that flu shot…

          • shelly in maine February 20, 2014 at 5:04 pm #

            Hey Bev…you will feel better I just know it!
            I have a thought or two for you…I’ve recently tried to mess with dosages of vsl,took a break from it, spiked it, added back in Chinese herbs, etc…and I think it helped get the bleeding mostly stopped. Maybe something like that would help…especially messing around with your 3 things and even a jump in the ldn to spike your system or mess
            it up to confuse it back to healing itself. I think our systems get stagnant and need a boost of sorts.

            Just a thought???
            Well wishes, Shelly

          • bev February 20, 2014 at 5:46 pm #

            Great ideas for sure!

        • Tara B
          Tara February 28, 2014 at 8:58 pm #

          Shelly,
          I agree, I am currently in the middle of a sinus infection/cold, or something. I am new with UC and this is my first time being sick with it, so I’m not sure what to do. So I am very afraid to go to the doctor and I am trying to take lots of vitamin c and drink lots of fluids. Really dont want to have to take antibiotics! But I may have to, and just double up on probiotics?? What does everyone else do when they get sick?? Any advice please?? :)

          • bev February 28, 2014 at 10:40 pm #

            Tara, you don’t necessarily have to double up on the probiotics, but you can…DO take the probiotic four hours apart from the antibiotic. That’s how you deal with HAVING to take an antibiotic.

            It really sucks to have to take antibiotics at all….but sometimes you do have to.

            Don’t stress. The probiotic will keep you safe if you space it out right.

            Cheers
            :)

          • shelly in maine March 1, 2014 at 6:13 am #

            Tara…first, take a deep breath, relax and try not to panic. I remember your story and didn’t post because you got some great info. It is very overwhelming to be bombarded.
            So first, deep breath, second…don’t try and do everything at once and third, try not to put so much pressure on yourself! Stress definitely will make things worse.
            As far as the ear/sinus..I went to my primary care(he’s a D.O.) he asked me to rake antibiotics despite knowing potential side effects…we discussed the options and he said amoxicillin…best for this and UC…with probiotics spaced, I thinkn2 hours. I freaked and never took it and went to my chiro/homeopath and he gave me 2 rounds of drops to fight infection..pretty well worked. Kept healthy diet and exercise…2 key points.
            I am a UC lifer and for sure…UC is different for everyone as is the “fix” but with some basics for all. Yes, I do the SCD, but about 98% now depending on symptoms. I didn’t jump in 100% at first..gave up milk products and bread/gluten..read Breaking theVicious Cycle, Adam’s book, SCD lifestyle site., Pecanbread stages site. Later to comfybelly and Against All Grain site. I am very picky so the diet is exta hard for me. After a stability -about 6-8 months,I added in occasional gluten free oats for breakfast and i was starving! Almond flour doesn’t agree with me too well, but there are other alternatives like coconut flour, etc.
            The other important thing is to eat as natural as possible with few ingredients..try and stay away from process food especially a lot of those gluten free products..It is super important to Read labels, keep a journal from foods, to bm’s, etc. It is a lot of work to have UC, but knowledge is power. Baby steps and patience…and lots of support…your family will be a lot healthier, too.
            Hope this helps..positive,healthy thoughts, Shelly

          • Tara B
            Tara March 1, 2014 at 4:59 pm #

            Bev, I have been taking 1 probiotic in the am and 1 in the pm starting yesterday, I feel a little off just because of the cold. Not going to the bathroom once a day like I was before getting sick, Just once every other day. I am feeling a little bit better today but I will go to the doc tomorrow if I feel worse. I keep pushing it off.

            Shelly, Thank you for the advice, Your right it does get overwhelming. I write everything down and come back to it later, like all the supplements that people take and they help. Just taking the 2 things right now and probably going to add the l-glutamine. I have cut down on starches for sure. I eat a lot of healthy salads and even tried zuchini for the first time last week and love it!! :) I did think about asking for drops. Maybe if thats an option, if not then I will ask for amoxicillin. Your right though about freaking out. I am definetely way more cautious about what I put in my body whether cold meds or food, supplements… anything scares me.

          • bev March 1, 2014 at 5:04 pm #

            I wish you all the best at the doc….stupid colds and infections….why do we even have to get them, right???

          • Tara B
            Tara March 1, 2014 at 6:51 pm #

            Bev I know right?! And I am usually prone to ear infections during the summer and fall months so that is going to be fun this year!

          • bev March 1, 2014 at 8:27 pm #

            Ugh. A couple of years ago, it was UTIs for me. I had three in six months! Who knows why, Luckily I haven’t had one of those infections since. I sure took a lot of antibiotics when I had them three times in a row. I kept having to get a stronger one each time.

            It was horrible!

          • Tara B
            Tara March 6, 2014 at 7:43 pm #

            I used to get a lot of yeast infections a few years ago, then started taking acidophillus and it helped a lot but before that I was constantly taking diflucan for it. Hey Bev, I am sure you have answered this a thousand times but how much of the l-glut do you take a day??

          • bev March 6, 2014 at 10:53 pm #

            I take a heaping scoopful…which is included in the tub…however much that is! It’s about a tablespoon I guess. I’m not sure what that is in grams.

    • shelly in maine February 20, 2014 at 2:24 pm #

      sorry about the typos and some wrong words….my tablet won’t let me edit!

      Roger…you are a good writer-read some of your blog. Perhaps you’ll write of you interesting journey someday. :-)

      • bev February 20, 2014 at 5:45 pm #

        Funny you should say that Shelly, because I’ve been taking one probiotic capsule first thing in the morning, and then another at bed. It is working! Yet, it didn’t when I took one in the late afternoon! Go figure, huh?

        Things are pretty darn good right now, don’t get me wrong…but they were BETTER before the flu shot. I wish I had never gotten it this year…coulda shoulda, woulda!!

        • shelly in maine February 20, 2014 at 6:11 pm #

          ;)
          good thing you were doing well when you got the shot, imagine if you were already having issues! So there’s the positive spin and you’ll surely get back to 100% with some tweaking.

          • bev February 20, 2014 at 10:55 pm #

            I just love this site, and you Shelly…this is what this site is truly all about. Support, venting, ideas…it’s the best most wonderful thing to have in our lives as a UCer :)

  7. Allison-3
    Allison February 22, 2014 at 5:08 am #

    Roger-
    Awesome that you have found remission! I think we are all on a journey of self discovery with UC- and some get on that ship right away and some take some time. Before UC, I was a workaholic, I didn’t know how to relax and I had a big stupid ego that made me a total perfectionist. UC brought me to my knees and it took me longer than I thought to accept UC, be vulnerable and shift my attitudes and perspectives. In hindsight, dealing with the emotional aspect was more challenging than being physically ill.
    And I don’t think you meant to come off as harsh- because It also sometimes frustrates and pains me to hear people make silly mistakes but, with that said- it so important to try not to judge and just be SUPER SUPPORTIVE… I used to eat a chocolate bar everyday even though I knew it made me sick- but I couldn’t let them go at the time. Duh right?- but that was where I was fighting for chocolate bars!!
    UC is not just about diet- it is about examining every aspect of our lives and that is a very individual experience. UC has been mega-brutal but I’d like to think that I really am a much better person for it. The most important thing I have learned is to cultivate compassion for myself and others. We are all in this world doing the best that we can.

    Continued health-
    Allison

  8. Tara B
    Tara February 28, 2014 at 9:01 pm #

    Nice story Roger! Thank you for sharing. Its nice to hear positive stories like this. I feel like I should be a part of this community more often, sometimes life just gets in the way. I keep thinking I will start the SCD diet, but I dont, I feel I am at a place right now with probiotics(Ultimate Flora Critical Care)(Thanks Bev!!!) And extra vitamin d capsules. So I dont feel the urge to do it. I also watch what I eat and will try something everynow and then and see how I am the next day.

    Tara

    • bev February 28, 2014 at 10:43 pm #

      The pleasure is ALL mine Tara, when I hear something like this. I just love it when it works!!

      Keep on keeping on!!

      :)

  9. Mary March 1, 2014 at 12:20 am #

    Tara, do your research on wild oil of oregano. I recently took it for a chest infection (5 drops 3 times per day for a week) and I felt a big improvement within 24 hours!

    • Tara B
      Tara March 1, 2014 at 4:51 pm #

      Thank you Mary, I will look into that.

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