Optimistic

Hockey player with colitisIntroduction:

25 Year old Canadian who loves to play Hockey and Bass Guitar. Diagnosed with UC in August 2012 and currently trying to figure how it is going to affect my day to day life and what changes I need to make in order to cope with the disease.

My Symptoms:

Bloody Stools, Diarrhea (Nocturnal), Cramping, Weight Loss

My Story:

I will never forget the night my poop changed my life forever. I was having a multi-day bout of diarrhea (nothing I have’nt dealt with before) when at 3AM in the morning, I woke up cramping and with a nasty urge to go #2. This was the first time I had blood present in my stool and then the worrying began that something was definitely not right. After a day or two of this, I decided to go to the emergency room to see what the doctor had to say about my condition. I gave a few stool samples and he informed me to wait a few days to see what the results would bring back. He recommended that I avoid any sort of anti-diarrhea medication unless it was absolutely necessary, so I did exactly that and had to wait over the weekend until the results were back.

Monday rolled around and the Doc informed me that the tests were negative for any bacteria or parasites, so the cause was basically unknown from his standpoint. He suggested I wait until Friday to see if things would clear up. In the meantime, I am now about a week into this whole bloody stool thing and I have yet to have a decent nights sleep during that time as I was getting up 2-3 times a night to use the bathroom (most of those nights, I would just stay up as the cramping would be too much and as any of you know, trying to sleep in a flare up is almost impossible). After a few days and my condition worsening, I decided that this is not going away and there is definitely something wrong, so I get into contact with my doctor and he scheduled me an appointment with a GI Doctor for the Friday he and I were initially suppose to meet again.

Friday finally gets here and I have my wife take me into the city hospital (I live in a small rural community, so in order to see a specialist, you have to travel). Throughout the day I go through the normal paces of questions, examinations, etc. until it came time to see the GI. He performed a Sigmoidoscopy on me and discovered that I had moderate-severe ulcerative colitis. WTF.

Of course, during my sleepness nights, I was on the internet desperately searching for people with symptoms/storys similar to my own, so it was not a complete shock as I figured there was only a handful of things I could have had. In all honestly though, when I heard I had UC, I actually breathed a sigh of relief that it was not Colon Cancer as that thought had been hanging around for sure during the dark days of my first flare up.

The GI showed me the pictures from my scope and it was pretty red 20-40cms in (that is as high as he went as he did not want to cause any damage). My first question to him (in hindsight, it was probably the wrong question to ask) was will I be able to go on my European Honeymoon in a week. His response of course was “I would’nt count on it.” My world came to a crashing halt with that statement and the reality of this disease somewhat sunk in. Of course I did not have cancellation insurance for the trip, why would I, I was 25 years old and invincible. Well I guess I won’t make that mistake again…

Following the scope, I was admitted into the hospital to undergo Solu-Cortif IV injections. I did notice a difference almost immediately with the injections from my daily trips to the bathroom going from 10-15 to about 6-7. However, after the 2nd day in the hospital, my progress basically just sat at a standstill and I was not getting any better. I was still having to get up in the middle of the night and the bloody diarrhea was still present (what I would give for a solid poop at this point!!). As the week in the hospital came to a close and my condition not improving anymore, I began to get really, really scared as to what was going to happen. Of course it did not help that I spent my entire stay surfing the internet reading stories from people who had `the-worst-of-the-worst` experiences with colitis (year long flare-ups and recoveries, negative responses to medication, etc.). I knew the next drug on the list was Remicade (of course I researched the hell out of this) and I knew that if I stepped on this train there was no looking back, so panic began to set in. The GI did check on me everyday, but I got the typical, we dont’ know what causes it, no need for diet change, etc. answers from him, so I think I began to wonder if I would ever be better….

At the end of my week, the doctor figured that I was fit enough to go home (it was a long weekend and he was taking off, so there really was not much point for me using up a hospital bed) so he prescribed me Prednisone and Asacol to take and I was to be back on Tuesday for another scope to see if things changed. I remember leaving the hospital thinking that I would be back next week in the same spot I am now.

The first thing my wife and I did after picking up the medication was go to grocery store. After eating basically everything they gave me in the hospital, I figured it was time for a diet change to see if that helped with anything. We bought the basic BRAP supplies and chicken. After about 2 days and still feeling the same, I decided to try a herbal product call CLT-X that worked for my dad when he flares-up. It contains Slippery Elm Bark, Wild Yam Root, and Marshmallow Root and Ginger Rock. I did my research on those herbs and really was not convinced that they would do anything to help my current state of health. Regardless, I was not getting any better, so I figured what can it hurt. That night I had a semi-solid, brown poop. I was still cramping and feeling like my colon was full, but finally some progress. I am sure other UC’ers can relate to the feeling you get when finally see something other than blood in the toilet. It was honestly probably the most relieved I h ave ever felt in my entire life. Was it the CLT-X? Did the Prednisone kick in? Was Asacol to blame? I have not idea, but with my new diet and pills, I decided to stick to what produced results and get back to 100% health.

Anyone who has had a flex-sigscope that is not planned a day or two before I am going to assume has to get or give oneself an enema. I for one am not a fan of these things. I have had 3 of them in the last 2 weeks, the first before my first scope and the next 2 before my last one. They suck. It especially sucks when you give yourself one (a test in mental strength and courage in itself) only to find out that it is effective for 2 hours after. I laugh at this now, but at the time I wasn`t too happy hahaha. Regardless, the scope did still show my colon was inflammed but thankfully there was some improvement down low (20cms in), so things started to look up for this guy. Not to mention that I was feeling better each day leading up to this, so I kinda figured the progress would show.

It has now been about a week since I had my first semi-solid brown BM. I am now down to 1-3 Brown BM`s a day (I`ll have the odd small, small trace of blood but nowhere near where I was at). I have been back to work (big stepping stone for me personally as I could not see how I could effectively do my job and deal with this flare-up) and for the past 3 days, I began taking VSL3. I would not say I am back to 100% yet as I still hear my colon growl and I will get the occasional cramp, but at least I am making progress.

Yesterday, I went to an acupuntuce clinic. I was put into contact with a guy through work who had a really bad case of colitis (80lbs. lost and ready for colon removal) and he referred me to this acupuncturist. He absolutley sweared by this guy, he said that in 3 weeks, he was basically cured from his near-death state. He was in really, really bad shape I guess and left the hospital against the doctors orders as they were ready to remove his colon and he would not allow it. Anyways, I go to see this acupuncturist and he tells me that in addition to the acupunture, there are some dietary things I need to change if I want to eliminate this disease entirely from my life. He said that I should start eating lots of brown rice, drink 2 liters of water daily (not in large quantites, but small amounts), and eliminate meat, wheat, dairy, sugar and junk food from my diet completely. I am not sure if I am going to commit to a diet like that (I would love feedback on this part) as toast, white rice and chicken has been working really good for me so far. I know alot of users on here are SCD diet participants and swear by their results, so I don`t know what to think. He also creates his own tea and medicine which I bought ($220, ouch) and will pick up next week.

Before I close up this post, I would like to present a few questions for the users to comment on (if you do take the time to comment, I thank you greatly):

1. I still do not feel like I am back to 100% and my stools are not where I want them to be (still feel and look thin). I have without a doubt been getting better, but I have started to taper off the Prednisone and I wondering how close am I to seeing this flare up through? I realize that I am on the upward, but I still fear I am one bad bathroom trip away from being back to where I was, so any feedback would be appreciated.

2. Am I taking too much stuff? As I mentioned, I am currently on Prednisone, Asacol, CLT-X, VSL3, and soon to be other eastern herbs (I have no idea what they are yet, but I will find out). In addition to the meds, I am taking a vitamin supplement and calcium.

3. If my flare up returns, do I immediatly go to the ER? I will obviously use my own discretion on this one, but I would like to hear what everyone else does.

4. When should I start to expand my diet from BRAP and Chicken? I am very cautious to do this as I am afraid to see the negative effects in my next BM.

5. Has anyone had success with Acupunture or herbs in dealing with their colitis?

Thanks for taking the time to read my story, I know this site and other people`s stories helped me get through my hospital days and made me feel that there was a light at the end of the tunnel. I would like to thank Adam for creating this site to allow all of us to discuss our disease, it truly is appreciated.

Where I’d like to be in 1 year:

Solid BM`s and a Honeymoon in the books

Colitis Medications:

I began IV injections of Solu-Cortif for a week in the hospital. I did notice an immediate improvement in my frequency of BM`s, but they were still the same as before in regards to being loose and bloody.

Upon my release I began Prednisone and Asacol as they were prescribed by my GI. I am pretty sure the Prednisone made me light headed after I took it (50mgs was my initial dose) but I have tapered down slighty and really do not feel any sort of side effects from it.

I began a herbal drug called CLT-X after being on the Prednisone and Asacol for a few days as I was still not seeing any results. I did notice results with this, but I think it is hard to say whether the CLT-X was the reason or if the Prednisone and Asacol finally took effect. This I will probably not find out until my next flare up….

I ordered and started taking VSL3 as I read some really great reviews on this pro-biotic and actually seen it mentioned in literature a dietician gave me while I was in the hospital. When I began taking the VSL3, I was on the upward swing of my recovery, so it will be tough to state the role in which the VSL3 will have helped, but I have a 2 months supply and I fully intend on giving my gut some good bacteria after years of eating junk.

written by Alberta UC Victim

submitted in the colitis venting area




hockey

5 Responses to Optimistic

  1. Dallas September 12, 2012 at 6:31 am #

    Give it some time. The initial shock of finding out you have a chronic disease is overwhelming in itself. Find out what works for you–sometimes it’s trial and error. The good news is remission is possible and flare ups don’t last forever. It sounds like you’re on the right track and open to suggestions. You said it best–progress, not perfection. That’s a good thing to remember. What works for someone else may not work for you, but a common theme for us UC’ers seems to be removing refined sugar and wheat from the diet. That has certainly helped me. The bottom line is you are not alone.

  2. Allison-3
    Allison September 12, 2012 at 12:26 pm #

    Hey hang in there! I whole-heartedly agree with Dallas. This is a complicated disease and each individual’s system is unique. I say RESEARCH! RESEARCH! RESEARCH! and it sounds like you are already on that track.
    I was DEVASTATED when I was diagnosed… I was a Type A superwoman… running, yoga, ballet, 2 kids, entrepeneur, part-time waitress, I loved to GO-GO-GO. Years of that lifestyle and all the underlying physical and emotional stress I was “running” from landed me at Feb 2010.
    The good news was… when I started to really let go of control and accept that it was going to take time to get better, that was when I started to get remarkedly better! Now it took me a year to get out of my flare (but remember it was YEARS in the making). I started with drugs for 30 days and then ditched them… it is one decision I am glad I have stuck with.
    The philosophy of “mainstream” medicine is to treat symptoms (not find the cause = find the cure). I was so scared about what the drugs were doing to other systems in my body (UC was enough for me)
    For me it was a lot of relaxation and a complete change in diet (gluten free, caffeine free, sugar free, low grain, lots of veggies and fruit, quality meat or eggs with every meal).
    This too shall pass! Journal about your feelings and keep a food journal- it helped me immensely.
    And you are ABSOLUTELY going to be healthy again. Hope is my best friend and has been my beacon during dark nights. (I imagined a little lighthouse in my soul). Whatever works, right?
    Keep living and get lots of LOVE!
    Allison

  3. Bev September 12, 2012 at 5:00 pm #

    Hi Alberta UC Victim,

    i am in British Columbia…another fellow Canuck stricken with this stupid disease…

    Anyway, I am in complete remission. I took asacol for 13 years straight, and although it worked at first, it slowly stopped working, and started to just make me feel nauseated and gave me looser and bloodier stools. I think all of the UC meds eventually cease to work. I decided to try a good probiotic (CRITICAL CARE ULTIMATE FLORA by RENEWLIFE) to see if it would help. Within days, I felt different! The pain and cramping went away, and things firmed up. I was floored, actually. Somehow, the good bacteria was gone from my colon (perhaps from antibiotics over my lifetime, or the accutane I took in my twenties), so, I suppose I really needed the probiotics. Long story short, I was feeling SO good, that I went off of the asacol…even tho my doc said I`d be on it for life. After going off it…I felt better and better! There was still a bit of blood, so I asked the healthévitamin store clerk what I could do about it. She recommended L-glutamine…and I`ve never looked back! 7 months in remission now…without drugs!!

    The last thing I want to say is, I am an avid exerciser…for about 30 years now (I used to teach aerobics and weight training), and I still do it all five days per week. I believe in healthy eating, but I don`t have to watch what I eat at all! I don`t know why, but taking the probiotic capsule and the L-glutamine every day has completely healed my colon. I also take a 4mg capsule of astaxanthin because it is a natural anti inflammatory.

    You have that great Canadian attitude, my friend! Things will work out great for you. I feel it. I wish everyone would try what I take and just see if it works. You can take too many things, but then you won`t know what is working and what isn`t.

    Cheers for now,
    Bev:)

  4. Trevor W September 13, 2012 at 7:05 am #

    Hello fellow Albertan.

    Chillin in Calgary here and read your story. Canadians have IBD more than any other country…….Saskatchewan has the worst case of all the provinces apparently. Get lots of vitamin D and probiotics and try the SCD diet. Worked wonders for me. I started with a sigmoidoscopy and the doctor was shaken up afterwards saying “this has been happening for a long time hasn’t it? I waited for like a year. I just couldn’t except this disease or believe it. I just ignored the stuff in the toilet, until after I had my first child it got out of control.

    Anyway…I did the research, denied the idea of taking meds the rest of my life and went drug free. Stuck religiously to the SCD and 2 months later I had a colonoscopy. Got the pics of my colon and it looked pretty damn good to me. He said it was “moderate”, but looked mild in my eyes compared to the other pics I’ve seen.

    Good luck man….Us Canadians don’t get enough sunlight in the winters I think…..we lack a lot of Vit D. It’s very essential for health. I work inside all day so I usually take a liquid version of Vit D3 and I’m good to go.

  5. Tania September 26, 2012 at 7:08 pm #

    I was diagnosed with UC in April 2010 after ending up in the ER following my 2 week postpardum check up. For 6 months during my pregnancy I suffered unknowingly with UC and lost nearly 2/3 of my blood. I was admitted and had to have emergency blood transfusion. I finally found a compentent doc who diagnosed me (the GI doc before put me on a high fiber diet thinking I had hemroids from the pregnancy). To make a long story short, my doc put me on predn and asocol and said I would be on meds for at least 10 years. He said “think of yourself in prision with your meds@. Well, that just wasn’t going to work for me and I began research and reading and research and reading some more. I found a book called “curing Chrons and colitis” which explained the way the body digest food and WHY it attacks itself with poor diet. Once I got my sever flair under control I changed my diet drastically and within a few months dropped all meds. Diet is a HUGE influence in my flairs and I know if I’m not eating well I will get a flair up or if I’m under extreme stress AND poor diet. I was hospitalized again in July 2011 for that reason and again after the flair I hanged my diet and was well again. I just moved cross country and lost my job and ny beloved dog …I’m under a LOT of stress so yup, another flair. That’s how I found this site. But I know I need to control the flair then get back on my right diet of looooots of fruit and veggies. All fresh! Good luck and don’t lose hope. You CAN be whole again!

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