Ulcerative Colitis Tips


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"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Life Father Like Son

Andy from VancouverMeet Andy:

Greetings, My name is Andy. I’m from a small town in Southern Ontario, Canada. Currently residing in Vancouver, British Columbia, Canada. This should give you some indication I’ve had pretty decent accessible health care. I’m a fairly active guy, prior to my first flare up commuting to work by bike, taking solo bike trips to the Gulf Islands off BC to camp for several days, trying to put on 60 km/day on average. That’s not a super commitment to cycling but you get the idea – I’m all for staying active and I’ve been in decent shape. My wife and I have lived in Vancouver for the past 3 years with our furry little son, Chase, a Jack Russel Terrier. My family is in Ontario. My father was diagnosed with Ulcerative Colitis when he was about 5 years older than I am now. I am 27 years old, and was diagnosed with Ulcerative Colitis on the 21st of November 2012. I really appreciate feedback, comments, advice, and am also hoping any experiences I have to share may help others. Feel free to inquire. ~ cheers

Some more about me:

My passion is photography. I can barely sit still for an hour. I have very little tolerance for endeavors without any intrinsic value. But I pay the bills. Put my wife through university at UBC and am ready to take steps to move into a professional photography career, now that she’s working. I’ve burned a few years in Customer Service but can honestly say that the saving grace of any job can be, and should be, awesome colleagues. My faith is in people; on the ground, living and working people that make up your life. These people are awesome and make everything go. I’m a dog person too. My wife and I share our main hobby of raising our Jack Russel Terrier, Chase. JRT may be the future’s energy source.

Colitis Symptoms:

Currently I’m golden. Apart from the fact I can’t sleep as much as I want to. I would like to sleep 6-7 hours a night but I can barely get 4 hours in. Not for nocturnal bowel movements, but this Predinisone, as awesome as it is for my UC symptoms, is making me pretty strung out. I think its bugging my joints a bit and I’ve got a little moon face and back acne. I can’t complain much now.

Like Father Like Son

I had just finished a one day bike trip that would have just pushed 100 km, round trip from the Swartz Bay Ferry Terminal to Victoria, BC and back. Plus some riding out to the Tsawwassen ferry terminal from Vancouver assisted with public transit to get out of the boring part of town. The following day I was down for the count having been reduced to a brown fire hose.

Previously I had been someone who might have thought they had IBS, not IBD. from the time I was about 16 until the end of this summer (damn you 2012!) I had maybe 3-5 weeks, 1 week or so at a time throughout the year, of loose stool/mild diarrhea. Never any blood with occasional constipation. I knew my gut had some problems with certain foods too, but omission of certain foods was an easy solution up until this fall.

My father was diagnosed at 36 or 37 years old. I knew I was a candidate for Ulcerative Colitis. When my symptoms presented an order of magnitude more severe than my prior bouts I went to the walk in clinic and saw a GP with that specific concern. Given my history and the persistence of my symptoms, and the new presence of blood in the stool (not a tone of blood though, poor an ounce of chocolate milk in the can and pretend its red) which would be my morning or nocturnal movement, I was referred to a specialist and had an appointment within about a month. I stayed hydrated and persevered in the mean time. I’ve been through two failed drug therapies since that have been the climax of my discomfort. Those drugs made my symptoms go to 11 and stay there for about 6 weeks.

Please check out the Medications section for a more complete history and let me know what you think. I’m currently feeling awesome and am in the middle of big choice. My Dr. wants me to try Remicade next. Popular drug it seems these days. I’m on Prednisone now and I know it’s like coke for your bowels, bad long term, awesome short term. But I’m at 2 strikes with him now, well, not him per say just these hard meds, I’m not into meds! and geeze, knock on wood, just about feeling perfect aside from the weirdo steroid side effects. I really want to go holistic at this point. But I need to meet with my specialist and work this out. He’s supportive of diet and all that, he just said something to the affect of “don’t bother now as these drugs do some drastic shit one way or another and you won’t know what’s being affective or not” seems reasonable to me, … he’s Scottish and swears a lot. Casual guy, very personable, and highly accessible as a specialist; I can pretty much just drop in and see him if I’m in a bad way with no appointment or notice and he’ll see me in the wait between the current patient and the next. He’s used to that with UC patients. This is just public health care in Canada. Mind you it’s Vancouver and things here are top-shelf; it isn’t quite equal across the nation unfortunately… no point in getting into that now. I’m fortunate and grateful for it! Healthcare is a Provincial thing in .ca

Colitis Medications:

For the sake of context I’m a 27 year old male weighing about 165 pounds to begin this journey and now at about 155 pounds probably having gained back some weight. Jack rabbit metabolism and my legs basically never stop moving. Both now and prior to meds, my whole life.

My father and I have both turned out to respond terribly to the 5 amino ASA’s. I was given a dose of Mesalamine, aka Mezavant 2.4g/day. that’s right grams/day not miligrams… that seems really high to me.

Never have I had such terrible diarrhea in my life – before or since. Although the bleeding just about stopped. Or I wasn’t bleeding that much anyway and having such frequent bowel movements it was barely visible. Although I couldn’t keep up with it; I was fearing severe dehydration and drinking tons and tons of water and pedialite and coconut water and just simply making my own sport drink mixes, avoiding caffeine and alcohol. Two weeks in I ended up on the throne about 15+ times a day for about a week before I called my specialist and was given a 40mg/day dose of Prednisone tapering off a week at a time by 5mg. Two weeks later with the problems persisting I just quit and called my specialist to tell him I stopped taking the Mesalamine because it seemed to be killing me. He agreed but said the Prednisone was likely keeping the bleeding down and to stay on it.

I was prescribed a longer term of Prednisone, at 30mg/day at that point, the taper was extended to two weeks per dose, so 2 weeks at 30mg/day, then 2 at 25mg/day, to terminate after 12 weeks. Concurrently I was prescribed Azathioprine 150mg/day. This did nothing for about 2 weeks then it seemed to kick in or something as by 3pm, consistently for about a week I was feeling like I had been hit by a bus, and in the final three days began to feel nauseous. I walked into my specialist’s office and told him what was up so he recommended the following day I cut the dose down to 100 mg/day. I was going to do that but had then spent from 3pm to about 5pm vomiting that day with a fever of 102.9 F. I called him and left a voice mail, he called me back the next day and told me to quit the Azathioprine and keep up with the Prednisone. 3 days later, I’m golden.

The weird thing is that while on the Azathioprine, pretty much a week after I stopped the Mesalamine, my gut was made of like kryptonite or something. I could have probably digested iron piles at that point.

Since then life has been good. Apart from all the weird side affects of Prednisone, irritability, 4hrs of sleep per night on average, back acne, increased appetite, and my joints are kinda bugging me, life is great. My stool is like Play Dough. I have a bit of gas but otherwise I’m pretty much back to feeling as awesome as I was in July.

written by Andy

submitted in the colitis venting area




9 Responses to Life Father Like Son

  1. KimberlyHI
    Kimberly January 30, 2013 at 11:42 am #

    Hey Andy! I love dogs too, I have a minpin and doberman. Minpins are like JRT’s as for energy I think. My little guy is almost 6 but has the same energy as when he was 1.
    Well I hope you find a good treatment soon :) I was on mesalamine for years, I took 6-8 of those pills per day. It apparently doesn’t work unless you take high doses. It worked ok for me for a long time but I kept flaring so they took me off it. Right now I am on Remicade and Azathioprine. I am doing well symptom wise for about 4 months now, with side effects of hair loss, nausea, and fatigue sometimes. My doc had decreased the Azathioprine from 150 to 100 for me as well because we think all the side effects are from that medication. I hope to get off that one completely.
    So if you did decide to go on remicade it seems to be pretty effective and worked rather quickly, the down side is it is a long term medication and is a strong medication with risks that are kinda scary.
    You’ll see as you read this site, lots of people find remission with natural no medication options like probiotics, olive oil, and diet like the SCD, you really you have a lot of options to try! Good luck and hope you feel better soon! Oh yeah, on prednizone, I ran a half marathon with no training. It was nuts, I did not think I was going to make it. But that drug is like crack or something. I used to sit up at night and surf the net while everyone else slept!

    • Andy
      Andy January 31, 2013 at 9:54 pm #

      Hey Kimberly, thanks for your input :).

      I feel like I’ve just gone through a lot of drugs that others had over a few years within about 2.5 months. Literally and now figuratively as my specialist doesn’t have many options left. In his eyes as far as drugs are concerned its just a matter of Humira or Remicade. I’m not a huge fan of long term drug therapy, although it has its place and I cant say anything from direct experience. I haven’t been on anything longer than three weeks accept for the prednisone which has a planned ending. So now i’m going to try Remicade and we’ll do the wait and see thing again. This time I’ll stock up on fluids – but I’m glad to hear peoples’ reactions to it are seemingly not so terrible and that when people leave it, it’s only because it just doesn’t work for the most part. I made sure to ask effectively what the exit strategy is for Remicade under various circumstances. Long story short it seems probable I’m off Remicade within a year. And I’m thinking seriously now about how long long-term would be and trying to find out more about people who have been using it for a while. Its a fairly young drug. I know some long time prednisone users who recall times when it wasn’t thought of having such nasty side effects and used a lot more. It makes me a little weary of taking drugs for a long time.

      I’m going to continue to augment my diet and see how things go. Some changes take so long to take affect and others are so quick to have a really really negative affect; this is not so much fun but I do enjoy my juicer at least :)

      Good luck to you as well!

      Andy

  2. MikeL January 30, 2013 at 12:36 pm #

    Hi Andy!

    Glad to hear you’re feeling good and here’s to staying in remission!

    I guess you’re one of the many members in the “Mesalazine makes me sicker” club. Seems like that drug is doing more harm than good. Made me sick too and after quitting that and sticking (only) to Azathioprine and probiotics I went into remission for almost ten years.

    Cheers and thanks for sharing!
    MikeL

    • Andy
      Andy January 31, 2013 at 10:03 pm #

      Hey Mike,

      Glad to hear its been ten years of remission! Thanks for posting that, I’m glad to hear a positive outcome is possible on these drugs. It kinda feels like a scam when the medication acts like poison. lol, which sounds very silly but the thought crossed my mind.

      Cheers,

      Andy

  3. bev January 31, 2013 at 11:04 am #

    Greetings to you from a fellow British Columbian…

    I am one of those people who mo longer believes in meds to treat UC. Just reading your story proves my point. The drugs either do not work at all, make UC symptoms worse (as in my and your cases) or work for a short time, and then fail to produce the same results the next time. I have now come to the conclusion, after 15 years on medication, that meds are NOT the way to go with this condition (oh yeah, I also refuse to call it a disease!).

    Believe iyt or not, I have attained remission for the FIRST time in 15 years without meds! The asacol was making me so sick, that I decided to go off it on my own…much to my doctors’ dimay, of course. I started a good 50 billion strain probiotic (which, by the way, I have found works best on a completely empty stomach, and then no eating after for at least an hour), and I also take fermented L-glutamine powder daily before lunch (which got rid of the last symptom that the probiotic didn’t…bleeding…as it heals the mucosa of the colon). Along with those two things, I keep my vitamin D levels up, which I had no idea at all were low, after getting a blood test for it, and I take one more thing…a natural powerful little anti inflammatory called astaxanthin.

    I have no nausea, no hair loss, no acne, no bad side effects at all!! How happy am I?? Pretty freakin’ happy!

    I am no doctor, but it seems that veteran UC patients know as much OR MORE than they do! I KNOW! Pretty tough talk, but you will come to see that it is true. Doctors go by the book, which tells them to treat UC with harsh overkill medications, one after another as they each fail to work, that can further damage us. Once you get on the carousel, it’s hard to get off of it, nor do the doctors or pharmacy want you to. I know you are new to this, but think about it. Diet also helps alot of people, but on my regimen, I seem to be able to eat whatever I want, except high quantities of wheat. There is also some good reseach on taking straight extra virgin olive oil, read up on that too!

    Cheers, and good luck,
    Bev
    :)

  4. Andy
    Andy January 31, 2013 at 10:53 pm #

    Hi Bev,

    Thanks for all of the advise! I’ve heard that for a lot of people the meds have really not worked. I don’t think my specialist will keep me on the meds if they aren’t working right away or on schedule or produce unacceptable side affects. He’s been great about taking me off of them which has worked very well for me over the past month and a bit. And really this sounds like the last drug he wants to try pretty much. I have been augmenting my diet significantly and been feeling pretty good about it. Really enjoy my juicer. :) its awesome. Fingers crossed things will maintain as the prednisone decreases. I’ll have to be consistant and healthy in what I eat to make sure there aren’t any weird curveballs or extra variables to lose track of.

    I have a lot more dietary things to consider thanks for your input.

    Cheers,

    Andy

    • bev February 2, 2013 at 8:49 am #

      Andy, the things that you are saying should ring true within yourself. We all have intuituon, and it’s usually correct. We just doubt ourselves sometimes, and we really shouldn’t. We know how we feel, and what’s best for us. Alot of times, we just ignore it (denial?).

      I am so happy for you…that you know yourself, and trust yourself. I have been trying to figure UC out for 15 years, and I think that I finally have. I wish everyone with it could figure out what works for them…SAFELY…in less time than it took me.

      If you go to the doctor looking for solutions…you will get prescription meds. Bottom line. They are doing their jobs. If you want to really get better, you have to trust in yourself, do the work, find out what works for you naturally, and then reap the benefits!

      It can be done! I’m living proof!!

      Cheers
      :)

  5. Hannah February 1, 2013 at 9:28 am #

    Hi Andy,
    The one thing I can guarantee you after having this disease for 40 years, taken all the meds out there – including being a guinea pig for the clinical trial of Remicade and most recently Humira – is that everybody is different in how they react to this disease and to each drug or therapy…Sorry Bev – it is a disease. Our colons are not normal and do not function like a normal colon and on top of that there are “back” diseases which we get like arthritis or just general joint pain, back pain, even inflammation scarring of the lungs and eyes caused from UC. I know for me that Prednisone works – short term. Good luck in whatever you try – just be careful.
    Hannah

    • bev February 1, 2013 at 9:58 am #

      No worries, Hannah.

      We all think of UC differently, and that is okay. I prefer to think of it as a condition, even though our colons aren’t ‘normal’ as you say. Maybe I am in denial…lol…I just do not like the word ‘disease’. Just like alcoholism…which I prefer to think of as an addiction…is also classified as a disease.

      I do agree with being careful and very thoughtful in regards to the treatments that you choose.

      Cheers
      :)

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