A Long Road It Has Been…

Introduction:

Hey everyone. I have been posting here for a little over a week. I thought I would share my story so you can know me and maybe I can post a picture and become a part of this place. Please feel free to laugh at my expense anytime. :)

My name is Steve. I am a 30 year old living in small town Pennsylvania, just outside the historic grounds of Gettysburg(if anyone ever cares to visit, give me a heads up and I’ll be happy to show you around as long as you promise to be as non-touristy as possible :P). I have a pit bull named Kieran who is an amazing dog and a great example of what pit bulls can be. My hobbies often include camping, climbing, reading, learning, music, and so much more. One thing people are often surprised by is how quiet I can be(I can be shy sometimes)…I have an addiction with tattoos, meeting awesome people of all sorts, and always trying to be the best person I can be. Nice to meet all of you and I would love to hear from you, no matter who you are.

My Symptoms:

Right now, I am experiencing loose stools and frequent BMs…with only a little blood and mucus. Comparably, I have had horrible days I wish not to remember so I will not take this time for granted.

My Story:

My story began in the summer of 2005, as I was about to start college after taking a few years off after high school. At the time, I was working a blue collar job here in Gettysburg and everything was going well for me. I had great friends, a family that was growing with a niece on the way, an awesome relationship, and more. I felt like I was finally finding myself, my place in this world, but little did I know it was all about to change.

I kept it to myself but I was really stressed about starting college—how would I do, would I have enough money being an adult student, etc. My worries led to some stomach discomfort a few weeks before classes were to start but I didn’t think much of it. It was not until the night before classes that I had my first real UC symptoms…urges, cramps, a little blood, etc. I went to the emergency room but the doctors could not find anything so I was told to see a GI doctor. I went on with the semester, experiencing steady symptoms not knowing what I had because I did not get in to the GI until November. He scheduled a scope for a week before Thanksgiving and I learned that day I had UC. He told me then to expect my entire life to be different.

Honestly, up until that point, I had done quite well managing things. I only missed part of a morning thanks to the craziness that is digestive issues(the professor probably figured I lied because he saw me on campus later—I didn’t want to miss a full day of classes—, gave me a pop quiz, and probably docked me attendance points). I ended up with an A- in his class because of it, with all other classes being As. And to think…what if I had not gotten sick?? My subsequent classes have been the same when I have been able to attend…all great grades.

So my mom drove me home that day and I started on prednisone. I saw instant improvements but knew I could not stay on steroids for life. For one, I was never one to take medicine(I didn’t take my first pill until I was 16—I practiced swallowing M&Ms :P). Two, I have always loved studying the human body so when I read up on all the treatments for UC, I started to feel awkward. It all sounded like band-aids to me…not true fixes of whatever the underlying issue was. That felt very wrong to me. I had already discussed the possibility of foods being a trigger with my doctor as it was what I noticed. He told me it was not likely but avoided the questions saying we would talk more in time. Regardless, I tapered off the prednisone in December as I was starting asacol. My symptoms started to reappear, specifically painful cramps and a little blood that my doctor considered par for the the course.

When he told me that over the phone, I stopped and immediately looked up the side effects of asacol. I read some positive stories but I also read a lot of horror stories with symptoms like mine showing up…needless to say, that was the end of the asacol for me. I just couldn’t fathom taking a medicine that was supposed to put me in remission making my symptoms worse. I remember sitting at the computer crying just wanting real answers. I ended up finding a story on some crazy old internet database about a doctor who had UC in the 50s I think…he didn’t believe in a natural treatments given his training but his wife read a book by a gentleman. She repeatedly would leave the man’s number under his dinner plate and he called it one evening. The man lent him a book and within a few weeks, the sick doctor was no longer sick. He was vibrant, alive, and no longer in fear of losing his colon…all from altering his diet.

I was inspired but skeptical so I did more research and I found David Klein’s story…a fellow UC sufferer who was near losing his colon who also saw correlations to his health and his eating. I bought his book, Self Healing Colitis and Crohn’s, with a great deal of hope because I felt without it, I was going to die. I know, probably a little extreme but I was just finding my way and now I have this illness that doctors do not seem to understand. Their treatments are drastic and often with serious side effects. I didn’t want to be a shell of myself. I wanted to be able to take my dogs on walks, backpack across Europe, hike the Appalachian trail, etc.

I remember waiting for the book like Adam describes waiting for his yogurt maker on another part of the site :) I was so happy to get it and I read it within the hour. I was all about it. Everything made sense. So I made plans to heal and rest over my break. I also planned to take a semester away from school, hoping the extra time would put me in a great position for the fall. I just had to wait to taper off the tiny bit of prednisone and I could start juicing. Over that break, thanks to my UC, the relationship I was in ended abruptly so I was torn apart without ever getting a chance to get better.

I kid you not but I didn’t care about getting better anymore. All of it was a constant reminder of her because she was there through it, even the awesome store I found where I could get organic produce. I got sick of sitting around in my own pity so I went back to work at a pizza shop I worked at in high school…still sick. I hoped to heal while working but it didn’t work. I ended up giving away my dogs so they could have a life where people could play with them(by the next spring, I adopted Kieran because I couldn’t be without a dog and he helped me not give up). Long story short, I worked, attended school that fall, and did everything without medicines. I just dealt with the symptoms and put on a brave face…never letting anyone see my weaknesses.

That was about two years into my UC…in the five years since, I have tried different doctors, different medicines, all made me worse, had one short hospital stay from severe dehydration, low blood counts, had jobs, been out of work, etc. I’ve been raw at times with great health, others so addicted to cooked foods I felt like I would never win. I can be honest and tell you for most of it was mildly depressed…living with very little money, having almost no life whatsoever, just stuck…being the only one to help my mom after a heart attack when my brothers have their health and I do not…having a friend kill himself and knowing I had suffered like I think he was…even talking about all of ii here makes me feel pretty horrible because I have let this illness control so much of my life and that is so unlike me. I am persistent. I am a fighter…but I have let UC win when I know better. Fast forward to a few weeks ago…

I had some pain in my side that was new. It was paralyzing when it would strike and I would have the urge to vomit. I knew something was wrong so I started juicing, just trying to get nutrition to my body without eating anything my body would have to breakdown. At all costs, I wanted to avoid the hospital and put an end to this illness once and for all(I knew if I went to the hospital I would be stuck on medicines again and be forced to eat their food, most of which is not good for a UC sufferer—soda, coffee??) Oddly, juicing seemed to increase the pains intensity—maybe because my intestine was narrower—but it passed. I think it was an a partial obstruction so I said that was it. I had to win this battle and get my life back. Eating raw is pricey when I have to travel so far to get food a few times a week so I was just searching YouTube one day. I found Adam and heard about SCD…he had some bacon and some sort of squash I think. This excited me because there are only s o many ways you can eat raw. Now I can go into a regular store and actually make a meal. I can lift and workout without emptying my wallet on calories. I will get to be an uncle again and also plan awesome dates for ladies I meet…lol. The list of perks goes on and on. I love the idea of eating mostly raw but eating with SCD in mind as well. I think it will offer me great health in the future.

I know it is quite the road ahead of me until maybe I am fully happy…not so much in getting well but getting my life back to where I want it…I want to climb by the end of the year as a goal….but this place has given me hope and ironically, I love reading about all of you so I thank you for that. I hope to be around a lot so I can help you and you can help me. Thanks to Adam for creating this place, thanks to all of you for reading, and may you find great health in your lives.

Where I’d Like to be in 1 year:

I want to be working consistently obviously, maybe get back to school but more importantly for me would be the small things…like being able to go on a road trip on a whim to see friends and meet many new people or being able to finish work on my mom’s house for her, saving her money and raising the value of the house. Or even being able to sit through guitar lessons or be able to finish/start new tattoos. I want to definitely reconnect with my brothers as we have not been close in over a decade and the same with my dad. I would love to get Kieran certified so we can visit sick people in the hospital. Oh, so many dreams…if I put them here, I will have to make them happen so if you’re wondering why…now you know!

Colitis Medications:

My experiences with medications have not been great and my studies have shown the body goes into a UC state because it is trying to rid itself of toxins. So unless a doctor tells me I may die, I honestly will try to avoid medications at all costs…short of a probiotic or the like. Speaking as someone who at one time wanted to be a doctor to help kids who grew up with orthopedic deformities like I did, I think western medicine is great…but at the same time very centered around using medications and surgery as treatment. All medications have side effects and will change the body in unintended, possibly negative ways…it reminds me of when I was making windows in 2005. If my frame saw was not cutting properly, the maintenance guys would adjust the frame welder to skirt the issue, and eventually, my saw would get worse and we would have to shut down production until it was fixed. Why not fix the saw where the problem is originating?? Just like our health…why not look at the actual underlying causes of the illness and attack it there? In the end, we have a better chance of reaching lasting health that way, with no ill side effects or new illnesses as a result. Just my two cents…

written by Steve

submitted in the colitis venting area




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14 Responses to A Long Road It Has Been…

  1. Bev August 23, 2012 at 2:06 pm #

    Steve!

    Band-aids…great description for UC medications. Band-aids.

    Like you, asacol made me feel even more ill. I stayed on that nasty drug for 13 years. 13 years that I can’t get back. I don’t dwell on that fact, tho, because if I did, it would really depress me. I’ve been so depressed at times during the past 13 years, that I actually considered going into the garage, and starting up the car…anyway…no more of that!! Very unlike me, too, to be down in the dumps. Very. I hear that, Steve!

    You are a pretty special guy. I reda all of your posts. You are deeply feeling and compassionate. Thank goodness that you found this site, because it would absolutely NOT be the site that it is without YOU, my friend. You make us all feel better, Steve.

    Thank you from the bottom of my heart for sharing your story. It hit home like hell!! I felt like crying in alot of places because you described perfectly how I was feeling thoughout some of this unwanted, yet interesting, journey that I’ve been on since being diagnosed.

    We really ‘LIKE’ (I don’t want to use a stronger word here, lest you think I’m nutso…lol) you on this site Steve!! You’re one of the good ones!!

    Thank you again, for being here, and being you.

    Cheers,
    Bev:

  2. Steve August 23, 2012 at 3:13 pm #

    Thank you for the kind words Bev. It means a lot. In all honesty, this site is a great help to me so I thank Adam and everyone here for that. As much as I have had days despising UC, the strange reality is that UC has led me to explore parts of the world I was unaware of…be it meeting some really amazing people, a new breed of dog I never would have adopted prior, studying Nutrition in college as opposed to Education, etc. A journey indeed!

    • Bev August 23, 2012 at 4:35 pm #

      I meant every word.

      You are like a gift…and we all need more people like you in our lives. On this site, as well.

      I’ll stop now…I don’t mean to sound corny!

      Cheers:)

  3. shelly in maine August 23, 2012 at 5:24 pm #

    Hey Steve,
    Finally! Great to finally hear your story and I totally agree with Bev…it is great to read your informative, well written and thoughtful and insightful responses…a la touch of humor!

    I answered you back on the post (Elite athlete) but not sure you saw it. My story…I posted about a month ago”Grimm Reaper Uc…1 year Med free…take that” and a year before that. I would love for you to read it and see there is life with UC, as Adam so adamently -haha i made a pun-“Adam-ently”!:-) pointed out in a recent video post!

    I think taking control and setting goals are key. You seem to be a the perfect point…As I’ve said before…UC is a war and you just have to keep fighting and winning the battles!

    Best, Shelly

    • Steve August 23, 2012 at 6:32 pm #

      haha. I did respond Shelly, both places I believe. As we speak, I’m trying to resist the temptation to make a “corny” UC joke in reference to Bev’s post like you did with Adam’s name. :) Thanks for the support. I have to laugh inside because if any of you were to meet me in person, you probably wouldn’t think I was the guy behind all the writing…I’m super quiet and very unassuming.

      • Bev August 26, 2012 at 8:20 am #

        As am I, Steve…as am I…

        We quiet and unassuming folk are out there…’lurking’…don’t mean to sound sinister…deeply thoughtful and caring…

        Bev

  4. UCinNYC
    UCinNYC August 23, 2012 at 5:27 pm #

    Hi Steve! Thanks for posting your story! I bought David Klein’s book as well, but I haven’t read it yet. I’ll have to give it a look.

    I love the fact that you re-homed your dogs so they’d have people who could play with them, but you ended up adopting another dog anyway. I’m so glad that Kieran has given you hope. Pit bulls are awesome. :) I’m a huge animal lover. My cats have been an enormous comfort to me in all of this.

    I totally know what you mean about UC leading you in new directions. I’ve only been sick for a couple of months, but this illness has really made me question how I was living my life and it’s prompted me to make some changes for the better. I was just drifting before, and now, life seems very short and precious. Sucks that I had to get this sick to come to that realization, but I guess that’s life. :)

    I wish you all the best as you pursue your dreams! You mentioned guitar lessons. I can relate to that. I’ve been trying to learn to play for years, LOL! I really need to get back to it. There’s a meditative quality to practicing an instrument that must have a healing effect on the soul. What kind of stuff do you like to play?

    • Steve August 23, 2012 at 7:03 pm #

      I would definitely urge you to read Dave’s book. Even if one chooses not to follow the raw diet, there is information there that can help the SCD lifestyle and anyone suffering from UC or Crohn’s, or really any digestive disorder. I’m only trying SCD because eating raw is pricey when the nearest really nice organics store is almost 50 miles away. I mean, I’ve made it work before…but with gas prices, yikes. It would be so much easier if I were closer to there and could go more often. I suppose I could attempt to bike that far someday(me and my ideas), but would a pack full of produce last? I smell an adventure coming on when I am able to ride for a long enough distance again.

      I was sad to let my dogs go but they needed more exercise so it felt right. Shortly after I ran into a stray female pit bull that was actually the neighbor’s dog but I had no idea. We literally ran into and scared one another—she growled at me but instantly followed me everywhere like we were long lost pals. The sudden loyalty floored me and I knew I’d have to adopt a pit bull after that, as so many never find homes because they get such a bad rep in the news. I found Kieran and I know I sound biased but he’s by far the most awesome dog I have owned—even though his first owner did bad things to him. 60lbs of mean looking wussy who happens to be afraid of kittens…

      Lessons…I’ve wanted to truly learn forever(do more than teach myself a few chords) and before I got sick, I made myself too busy. Now that I am sick, I dread the idea of being in the middle of a lesson and having one of those infamous UC “Uh oh…gotta go” moments. I’ll play anything…once memorized the notes to “Mary Had a Little Lamb” because I didn’t know how to read music and my good memory has to be good for something, right? I’m mostly into rock, but love everything from the Chili Peppers to indie stuff I find on YouTube. There is a great young artist by the name of Juliana Richer Daily there if anyone wants to check her out. If I could just play jams with half her talent, I could waste a lot of time and love it. Music absolutely helps me when I am not feeling so hot.

      Clearly so does writing. lol. Maybe someday you’ll see my name on books at the bookstore. :)

  5. Tracy August 23, 2012 at 5:42 pm #

    Hi Steve,
    Thanks for sharing your story. I also feel very “stuck” in my life trying to deal with UC everyday. It gets so tiresome. I have been in a flair since September 2011. I finally went on azathioprine on July 31. Felt like I had no other choice than to give in to medicine. I had to go on short term disability towards the end of July. I miss my old self. I just want to feel better so I can find that happy, silly girl that I once was. I try to stay positive but its so freaking hard to do. Thanks again for your story.

    Tracy

    • Bev August 26, 2012 at 8:22 am #

      Tracy…totally understand feeling like you have no other choice but to go on the meds…that’s how we sometimes feel, don’t we?

  6. Steve August 23, 2012 at 7:37 pm #

    Hi Tracy…thanks for writing. The “stuck” feeling is hard to describe but I know we all have to go through it at some point or another. It is refreshing to see I’m not the only one who experiences such things.

    Are you still in the flare even on the medicine? I think I found your story on the site—if not, I apologize and you can disregard what I am about to say. That Tracy said she was hoping to maintain remission through diet but felt the way to reach remission was through medications(“Medicine or Not? I’m Wondering About Imuran” was the title). I am not encouraging you to stop your medications but if you are still flaring in spite of medication(in regards to what you wrote to me), I would look at your options. Especially if you want to have remission through diet…because the best way to reach remission? Honestly? It would be without medicines and focusing on lifestyle changes like diet, lowering stress, etc(if the medicine(s) are not helping, they are just an extra burden—toxin for your body to clean up—on your already taxed body)…again, that is if you are flaring while on the medications. If the medication is helping, stay on it while making the diet changes. I’d be happy to help given all I know…just shoot me a message. Most of all, have fun and and know you can be that silly girl again. It’s not so easy changing old dietary habits while your body seems to be betraying you but it does work if you really try. Hope this finds you well. Steve

    • Bev August 24, 2012 at 2:07 pm #

      Yes, yes, yes!!

      Once again, another great reply Steve!

      Why keep taking the drugs that AREN’T working???

      • Steve August 24, 2012 at 6:59 pm #

        Well after some of the recent studies I’ve seen around…one this morning on the way big pharm selects who to use for their trials for biologics concerning UC…I’ll steer clear even more so. Not that it is much of a surprise but they specifically pick patients who are in the best position to succeed. In other words, if you have strictures, some of your colon removed, are too sick, etc…you can’t be part of the trial…yet many doctors jump from medicine to medicine like with “20” who just posted her story without ever a thought of how it will affect said patient. There is literally no structure of treatment for UC/Crohn’s/IBD illnesses. The fact is there are many ways to treat without the nasty medicines because it is just the body reacting to an invader so to speak. That invader is not a virus or a bacteria. It is far more simple…like years of not getting enough sleep or eating heavily processed foods and the whole gauntlet. The onset of digestive illness is just the body’s way of trying to clean out the problem because it is one of the first systems to stop working properly in a flight of fight state…not to mention, as we evolved(or if you believe a higher power made us), we weren’t meant to ingest thousands of chemicals that are not even digestible by the human body…in other words, when you eat (x), there are likely chemicals in (x) that your kidney and liver are working to dispose of immediately—all to give us convenience/taste/lower costs. The average American walks around with between 10-20 lbs of undigested food in their digestive tract…just food for thought, no pun intended.

        Thanks Bev…I apologize if anyone gets sick of my “rants” as I would if I didn’t learn the stuff first hand, however, it is no disrespect to those who want to live however they choose…my mind just never stops, a lot like the Energizer bunny…

        • Bev August 26, 2012 at 8:47 am #

          Steve, NOBODY gets sick of your so called rants.

          Absolutely not. Please don’t stop. You are helping us and even making us really see and understand things, I think. All of the years that we eat whatever we eat. All of the medications we have put into our bodies from the time of perhaps, infancy. Antibiotics, accutane for acne, UC drugs, and countless other things…what are our bodies to do with all of this? Break down? You bet they are. I suppose we could ask ourselves…what do we expect? What do we thing would happen??

          Why do some of us get UC? Or any other diseases? Mmmm…I wonder!

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