Just Warning You, It’s kinda long. (that’s what she said) : )

spiderman on toilet

just taking another normal poop break

Introduction:

Stevie B. from Tennessee here. I’ve been a carpenter for ten years but just joined a local police force. I’m married to a gorgeous six-foot blonde named Sara and have an adorable, vibrant 6-month old son named Gideon.

My Whole Colitis Experience:

How about a round of typed applause for Adam and all you wonderful folks out there in Colitisville? *clap clap clap* Sorry, I’ve just been really happy to find this site – It’s really been a great resource and an even greater encouragement! I seem to have experienced a couple different symptoms than many of you so I’d love to get some feedback.

Well, well, well, where to begin…

Up until 2009, I had been the picture of health. Zero issues of any kind. My symptoms began to set in slowly in July or August of 2009, just about 10 months after I got married. (Curiously, we honeymooned in Cancun, Mexico and I did swallow a small amount of water on an occasion or two. I know others believe this may be where they contracted the problem) As a self-employed carpenter I did not have any access to health coverage and thus I did not really have proper oversight or diagnosis for a while.

A doctor at a free health clinic I went to told me he believed I might have colitis and did a colonoscopy, confirming colitis-type inflammation. He prescribed Sulfasalazine and Prednisone, to which I initially seemed to be responding to. When I tapered off the pred, however, I immediately realized that it had been masking my allergy to sulfasalazine. (hives from head to toe)

My first major flare came in January of 2010, when I wasn’t really taking anything. (No money for doctors, meds) At the worst, I was using the bathroom approximately 35 times in one day and could not lay down for a whole hour at night before I had to go. Blood and mucous basically, plus whatever mostly undigested food – typical. I had some wrenching gut pains that would come and go. I also had MAJOR canker sores. (up to 8 at one time) I became so desperate, I decided to go on a fast to try to cleanse my gut. I fasted all but distilled water for an entire week. This certainly helped cut down the frequency but at the end I was even more weak, and was now down to 118 pounds. (150 is normal for me) I know, you think I’m crazy. I didn’t know what to do. What ultimately sent me to a walk-in health clinic was the extreme pain from the sores in my mouth. When I walked in, the LPN was obviously shaken by my appearance. She ordered blood tests and confirmed t hat I was malnourished and anemic (duhh.) and seriously in need of some medical attention. Back to the free doctor! More prednisone. What can I say? The stuff definitely helped knock the symptoms down. I was then put on Azathioprine to “maintain my remission” and was on that for a few months. I never returned to normal though.

My second big flair came in June of 2010 when I was up in Connecticut working and visiting my family.

At the worst, it was maybe 25 times a day,

fblood, mucous, undigested food.

Gut pains also came back. I was weak to the point that I had trouble standing. Finally my dad insisted I go see a proper GI specialist so I did. 50 mg prednisone and started Asacol HD – 6 per day. As with the other times, it definitely brought the flair way down and helped me to get back to functioning after a couple weeks. I had been extremely anemic and my blood count was at critical levels (transfusion time levels) I promised the doctor that I would seek proper help when I got back to TN, but of course I didn’t. (idiot.) I did follow a low fiber diet as prescribed though and even started taking Serovera AMP at one point. My problems never really went away but I didn’t have TOO much trouble functioning.

I had another flare in August or so of 2011 and finally decided to seek some help from a GI specialist, even though I didn’t know where the money was going to come from. This doctor, while pretty conventional, is an incredible guy. He pretty much didn’t charge me anything for the colonoscopy he did and sent me on my way without paying for my appointments more than once. He prescribed 40 mg of pred and put me back on Asacol HD, which they provided me with for free. NIce. As of right now I am currently tapering down the prednisone but am not on Asacol HD because I ran out. Before the holidays I was probably going between 4-10 per day.

OK, I hope that wasn’t too boring. The thing that is different about my case is that with the exception of flaring badly, I don’t seem to have any pain, and very little nausea, gas and bloating like many folks here do. I never seemed to have a problem with gluten or dairy, nor does anyone in my family.

The thing that I seem to have a constant

problem with is thin ribbon-like stool.

The consistency of my stool is pretty firm actually, for the most part and does not appear to contain much in the way of undigested food. It is however always flat and ribbon-like, and has been for the last two years! Colonoscopies have not found strictures, just inflammation and swelling. Does anyone else have this problem?

Eating a low fiber diet led me to end up eating a LOT of junk carbs and gave me a lot of cravings for sweets, which I also ate. Terrible diet, really. After a fair amount of research, I realized I really needed to cut out the refined sugars and alot of the carbs and butter I was consuming. So after the New Year I stopped almost all of my sugar, decaf and most of the carbs. I started implementing parts of SCD and actually just started the introductory diet yesterday. I have noticed a big difference since cutting out the sugar/carbs/decaf and am only using the bathroom 2-3 times a day right now. Pretty cool! I’m still seeing some blood and mucous, but FAR less than before. I am also using a vitamin E enema a few times each week. I do wonder, however, if my stool size will start increasing. It’s been like this for so long!

This post is getting really long I guess,

but I do have questions to ask.

I am supposed to be starting the 26 week police academy this coming week. With strenuous PT 3 days per week, is it possible to do SCD and not lose weight? I am at 150 and if anything, would like to ADD weight. I’m pretty sure I’m absorbing the nutrients in my food, and I think I may be able to work out the discipline thing. I’ve read a lot of others’ posts and the best I can figure is I would just have to eat tons of chicken, eggs and beef, plus whatever fruits are legal for the stage I am in. If anyone knows of an SCD legal weight gainer formula, please let me know! Remember, I don’t seem to get bloating, nausea or pain from gluten or dairy – Is it possible that this could be the one area I “cheat” on the diet with? I really want to see full remission or cure and think this is possible, but I’m just wondering if the timing of starting the diet could really work with starting the academy.

Another simple question: Since I cut coffee out, I have been drinking an herbal tea called Bengal Spice, which has cinnamon, cardamom, clove, pepper, etc. I usually add just a little plain apple juice as this makes it kinda like spiced cider. Any problems with this and SCD or otherwise?

Sorry this is so long. I hope it was worth reading for someone! I have more details, questions and advice, I suppose, but they can wait til next time. Feel free to weigh in, even if it’s just to make a cop joke – I’m getting used to the donut jokes – to bad I can’t eat donuts or drink coffee. : ) Thanks, friends!

written by Stevie B

submitted in the Colitis Venting Area




Ulcerative Colitis Tips


The FREE iHaveUC eBook "Ulcerative Colitis Tips" is made available to all members of the 15,000 person newsletter group INSTANTLY. It is several pages of tips gathered from other people living with Ulcerative Colitis, and has ideas which can be put into action immediately. You will need to enter your email, and confirm the email address afterwards.

16 Responses to Just Warning You, It’s kinda long. (that’s what she said) : )

  1. UC mama January 12, 2012 at 9:57 am #

    Hi,
    Regarding the “ribbon-like” stools, this is the result of inflammation. That’s one of the biggest signs of rectal inflammation. I had it for almost 2 years until I got on prednisone. The pred helped tremendously, but unfortunately from years of chronic inflammation which has now resulted in scarring, I’ll probably never have normally formed stools. It’s funny because you don’t realize how thin yours are until you see someone else’s. Before you gross out, I’m referring to my kids, especially my 11 year old son, who’s quite proud of the “size”of some of his “poop”. Funny kid!

    • Stevie B. January 14, 2012 at 1:22 pm #

      So as far as you know, our junk won’t ever return to normal diameter because of scarring? Geez, I hope not!

  2. JamieIsLame
    JamieIsLame January 12, 2012 at 10:22 am #

    wow, seems like you’ve been having a tough time! my worst flare also started to hit around the same time as yours! just a few months later and i’m doing a tonne better! you know why? because I’ve been taking my meds!

    I don’t wanna give you a lecture, but you saw yourself that the meds did help you! i know, they’re so expensive and so hard to deal with, but you need to find a way to get the money for them!
    The SCD might not be a med free fix, sure, for some people like Adam, it happens to work! but something around 20% of people only achieve remission without medication.

    your colitis is a priority right now, we don’t wanna see you getting sick here!

    if you’re on the police force, don’t you get some sort of health insurance that will cover your meds?

    Also, you said you tried AMP, if you can, you should take that, pred and Asacol HD, you might get better results! (from what i’ve heard anyway.)

    I really feel for you, but you seem to be keeping a high spirit through it all, which is what you need :) It’s pretty crappy being diagnosed with this disease! I hope things start looking up soon

    • Stevie B. January 14, 2012 at 1:29 pm #

      Jamie,

      Yeah yeah yeah… You’re right, of course. Sometimes just “finding the money” is harder than it seems, however. Now that I’ve been hired to a job with proper benefits and such, yes I intend to work more closely with a doc to KO this thing.

      As far as the AMP’s go, I’d love to hear more about your experience. I used Serovera as directed for three months without any noticeable results but recognize that may not have been long enough. There are some who say that AMP’s would be harmful to the flora in the intestine because they are made up of polysaccharides, which are complex carbohydrates. It is these complex carbs that the bad flora live on. This has been sort of a confusing quandary for me.

      Thanks for your encouragement, by the way.

      Steve

  3. garry January 12, 2012 at 5:52 pm #

    for weight gain, try high calorie healthy fats like avocado and nut butters. artichokes work too. i seem to tolerate nuts these days, so cashews are my “go to” snack. i don’t handle dairy particularly well, so for me, as a general rule, it’s “goat cheese or no cheese.”
    hope you see improvement and can add a few pounds.
    garry

  4. Maggie January 12, 2012 at 6:05 pm #

    Yes, your ribbon poop is definitely caused from a swollen bowel due to inflammation. Mine gets pencil thin and it took years to discover why. What a lot of people don’t realize is consuming gluten from infancy could be the biggest cause of UC. I’ve done a lot of research on this. The wheat we eat has been altered since the 1800’s to make it more durable and elastic to get those wonderful donuts you can’t eat any more. I, too, have a sweet tooth so it’s hard not to eat something sweet so those smoothies Adam talks about are great not just for the nutritional value–we have to keep our taste buds happy or it’s hard to stick to any kind of diet. Today’s gluten is poison. There are nut flours, buckwheat, which is NOT wheat or a grain, and coconut flours. Do some research and maybe you can come up with a healthy dessert sweetening with raw honey. To be a healthy policeman you need to stay healthy with a good diet. Good luck, and your story wasn’t too long!

  5. bbalanzd January 12, 2012 at 6:34 pm #

    Hi Stevie
    Probiotic supplements are hugely important for the immune system and for minimizing intestinal inflammation. These good bacteria are found in both the small and large intestine and are our first line of defense against ingested contaminants. The intestinal flora (good bacteria) of healthy people is often out of balance so you can imagine what it’s like for us UCers. Although I no longer have my colon and rectum and therefore am “cured” of this disease, I will never stop taking my probiotics. It doesn’t take much to throw off the balance – antibiotics (kill off all bacteria – good and bad), an improper diet and chronic inflammation for example. I find it interesting that, although it is well documented and accepted that the intestinal flora are a normal and necessary part of the intestinal tract, the medical community does not recommend supplementing it as part of the UC treatment regime. Perhaps this is coincidental but I had stopped taking my probiotics for about a year before I got hit big and fast with my only flare that ended up with surgery…talk about learning the hard way! But learn I did! Hope this helps.
    Bbalanzd

  6. uma January 12, 2012 at 8:21 pm #

    Probiotics and folic acid for the mouth sores this will fix your problems hopefully.

  7. Matt January 13, 2012 at 6:16 am #

    Hey Steve, glad to hear you’re starting to get more stable. I’ve had UC for about 2 years and had similar, though not as severe, issues with maintaining my weight. Lately I’ve actually been able to gain about 10 lbs by really increasing my calories and decreasing the conditioning work. I know taking it easy won’t be an option at the academy so some of the strategies I’ve used were always keeping nut or coconut flour baked snacks available. Tons of good cooking sites out there, and a lot of Paleo recipes can be tweeked to be SCD friendly. I’ve used a lot of shakes with coconut milk for an easy extra 1000 kcal. Also, if you look up glycemic index fruits stick with the ones with higher numbers as these have a greater percentage of their sugars from glucose as opposed to fructose which is a disaccharide and might not be as well tolerated. Good luck at the academy!

  8. UCer January 13, 2012 at 6:29 am #

    Stevie-
    I have had UC since 2004, and luckily, I have never had nausea, cramping, etc. — only lots of blood, mucus, extreme urgency, and loose stools. In addition, I “thought” I had NO problems with diary or gluten either – plus, I had a food allergy test that came back just fine. However, my UC systems did not begin to clear up until I started following the strict SCDiet. It has been the best choice I have ever made. I am much healthier and happier today.

    In the beginning, I did lose some weight but nothing too drastic. Eat lots of eggs, nuts, broiled lean meats, etc. and you should be fine. Good luck!

  9. Stevie B. January 14, 2012 at 1:33 pm #

    Thank you all for your responses, feedback,advice and encouragement. It means a lot! If you have more, I’m all ears.

    Steve

  10. Cheryl January 14, 2012 at 5:50 pm #

    Hi Stevie,

    That’s cool about the police training! Good luck! I have been on the SCD diet for over 4 years and was as sick as you when I first started the diet. This shouldn’t be hard to say, but it is. If a person starts the diet, they should do it 100% percent. I know that sounds scary and unrealistic. I thought that too in the beginning! I just ate very simply to start because I never cooked…I ate out most of the time. I ate a quick egg and zucchini omelette in the AM, then chicken and veggies for lunch and dinner (sometimes salmon). I ate almond butter and an apple or orange for snacks. Careful on the raw fruit in the beginning, it didn’t seem to bother me. I ate a lot of hard cheddar cheese to hold me over while I tried to figure out how to cook things. Good times! It’s all worth it though, life saving. The secret is NO Cheats. You should be great with that as police officers must be so disciplined. I went into remission within three weeks and was off all of my prednisone within six months. I have been off my meds for two years now (stayed on them for a little over three years while my intestines were healing). Some people stop them earlier, but I was too sick to remove them completely. I did wean down on the dosage though which is a great feeling Anyway, sorry so long. Let me know if I can help in any way. Oh, yeah…your weight will naturally come back. Just make sure you’re eating enough calories to support your workouts. Easy for me to say! Eventually you can do full fat yogurt which packs on the pounds.

    • Stevie B. January 17, 2012 at 6:58 pm #

      Hey Cheryl,

      Thank you for your thoughts and advice! I hear what you’re saying about committing fully to SCD. I just got weighed yesterday at the academy and found that I was down 4 pounds from a couple weeks ago. The exercise is wonderful and I feel great but I can’t afford to lose any more weight.

      I’m not sure about when to add in fresh apples and almond butter and things of that nature. I feel that if I could add in nut products it would be mentally a whole lot better. I still have some blood in my business though – I imagine this means I can’t have any nut butters or flours? Also, how does one determine when the “full fat yogurt” is ok to add in? In the past I never had a problem with eating normal dairy products, I don’t deal with gas/bloating/pain like many people with UC seem to. My main deal is just a constricted colon (narrow, ribbon poo) and the blood and mucous. My frequency is down as low as 2 times per day right now though.

      Any thoughts?

      Steve

  11. George in Napa January 15, 2012 at 11:58 am #

    Hi Stevie,
    Like you, I have had a problem losing weight. I follow most (about 80%) of the SCD diet. I have followed Adam’s lead and have been doing smoothies for about a month. I add bananas, a little peanut butter, a little raw honey and anything else that I think that I can tolerate that might be fattening. I also add Plant Fusion brand protein powder. I am very slowly starting to gain some weight. I normally used to weigh 162 pounds. I dropped down to 147 lbs. but I can’t blame all the weight loss on SCD. Like you, I was starving myself (I was eating jars of baby food) before I started SCD because eating anything heavier than that gave me too much pain. Prednisone eventually helped me with the flare and pain. My weight is now at 152 pounds and I’m going to keep trying to push it upward toward 160. I think the smoothies are helping me do this.

    George in Napa

    • Stevie B. January 17, 2012 at 6:45 pm #

      Ahh, George. You mentioned something that I have been trying to find out about. I have been wondering if there was a protein powder that I could use that would be somewhat SCD friendly, low in fiber, etc. You have no issues with this one?

  12. George in Napa January 19, 2012 at 12:13 pm #

    Stevie, I just read to label and could not find any info on fiber. It is gluten and soy free. I am not sure if it is 100% SCD friendly but I don’t feel that it bothers me.
    Here is a link to Plant Fusion http://plantfusion.net/health.html

    Also here is a link to a SCD legal/illegal list that you might find helpful
    http://www.scdrecipe.com/legal-illegal-list/listing/

    Best wishes,
    George in Napa

Leave a Reply