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