The Loooooonnnnggg Road

Introduction:

My name is Alex, I am 33 living in Long Island NY. I was diagnosed around 25 yrs old, and mainly symptom free until I moved back to NY from California almost 3 years ago. A few months after arriving in NY, i started to show more symptoms, blood, mucus, and frequency started to increase as control began to decrease.

Some more about me:

I like to surf.

Symptoms:

3 BM’s a day, mostly formed, appear thin…..better than it used to be, still certainly not “normal” and not quite where id like to be.

The Long Road

So, some of my story is included above, and i have posted on this site a few times in the past. My absolute lowest point was 2 Decembers ago……about a year and a half. I was hospitalized for 7 days, and was barley able to crawl out of there with all my guts still in me (against doctors recommendations) My scope had shown severe pan colitis, and I strained mightily on the toilet to pass essentially all blood an average of 30+ times all day and night. I weighed 120lbs.
I feel as though i am currently well along the road of recovery (even though i was told I would be unable to recover from the severity of my condition), but it seems to be a verrrrry long road. I am used to even a horrible sickness or injury taking weeks or at most a few months to heal. like I said…..my recovery started 1.5 yrs ago. It has been slow, and definately not in a straight line. My purpose for writing is so that if anyone is going through what I have been through I hope maybe my experience can help.

There has been many time where I have thought I was not recovering because I could not see improvement, or sometimes things would even get worse for a while. I have tried many thing during my recovery, and honestly can not be 100% certain on which ones worked or didn’t. I do have some strong beliefs in this area, and would like to share my current regiment as i belive it is the best one i have followed so far. first and foremost, i have followed the specific carbohydrate diet since i was released from the hospital. I can tell you, if it is working for me…….then it definitely doesn’t work fast……..this is a tip for anyone who decides it doesn’t work for them after a few weeks.

Also i have greatly reduce what i eat from the diet. Still no nuts for me. Fruit is just starting a little. These are cautioned in the beginners diet, but for me the time period of introducing them within a few weeks, was just way too soon. I also caution against the yogurt, probiotics, and fermented foods. i think these are all important and beneficial….but need to be started slowly in some cases. i was thrown into a flair by starting out on a high dose probiotic. i found it best to try the yogurt for a bit….then i had to stop….then i brought it back……did this till i could handle it. now i take it like medicine every morning. I also take 1 scoop l glutamine in the morning. im not sure this does all that much, but it doesnt seem to hurt, and i believe i t is mildly constipating…..which for me is good! Next suppliment that i want to rave about a little….because i think it works, and i haven’t seen anyone mention it yet here, its called “intestive”….. you can google it. I dont want to plug them too much, but i really believe that it is helping me, and i hope someone else can find relief with it as well. I take a sacharomices probiotic, as well as a bifido probiotic. I also am currently still taking asacol hd 6 pills a day. my hope is to discontinue the asacol within the next year, and eventually just have a yogurt and fermented food regiment to keep me in remission…..but that is getting a little ahead of myself.

Thanks for listening, hope this helps. I wish you all the best. Thanks Adam.

Medications:

asacol hd 6 pills
bifidonate
intestive
sacharomices
vit d3
digestive enzyme with meals

written by Alex

submitted in the colitis venting area

3 Responses to “The Loooooonnnnggg Road”

  1. ColleenMay 26, 2013 at 5:55 pm #

    Hi Alex,
    Like you, I’ve been on SCD (for a year) as well as supplements and it’s been a long road, but I’m moving forward, as are you, and that’s what matters, right. Life is so much better now than it was a year ago, but over the course of the year, I’ve had ups and down and had to tweak my supplements to really get on what I hope is the road to remission. It’s a constant experiment. I sometimes read stories on this site (and others) of people who had miraculously quick turnarounds with SCD or supplements. I so wish that had been me, but it’s not–in all cases for me, the natural route has been a slow one. But a progressive one. I committed myself to 2 years on SCD and I’m half way there, and very grateful for the healing that this diet has given me. Like you, I had to cut back on a lot of the legal foods for the majority of the year. I am finally at a place where I can introduce more, without paying for it. Even some nuts. Fingers crossed. As with you, the yogurt is my morning medicine. It took a while for my body to be OK with that too though. But once that happened, my healing really improved. I’m happy to stay on SCD forever if it keeps me well. I’d really like to hear more remission stories–not necessary how people got into remission as there are plenty of those stories on here already, but more what the steps of remission felt like. For me, it’s been a slow subtracting of symptoms. Glad you’re feeling positive, as I think that’s key, as is a good night’s sleep. Hope the surfing in LI is as good as in SD. Stay well.

  2. steve lorandMay 27, 2013 at 7:10 pm #

    Alex Hi,
    thank you. Your story is very helpful.
    steve

  3. shelly in maineMay 29, 2013 at 4:53 pm #

    Alex,
    Great to hear you are continuing on your Wellness journey. Glad you posted a follow up.
    Best and good health,Shelly

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