Tails from a Toilet Seat

Introduction:

I am 47 years old, and have had UC for 22 years approximately. I usually will suffer 2-3 flareups per year. Currently, I teach at the college (very close to the bathroom, unless the damn cleaning lady is cleaning it), and I have a traveling Mechanical Repair business (not such a great career choice for bathroom locations). I have a post-graduate degree, and a son, who I pray can avoid this “offal” condition.

Current Colitis Symptoms:

The usual…

My Story:

Year 22, Flareup # 45 maybe?? I’ve lost count. It seems like it is flare to flare, though I have had several longer term remissions.
Currently, I am flared with the usual toilet of blood, fatigue, 20+ bowel movements often with nothing more than blood. One day there will be little more than blood and straining, the next day is blood plus more loose crap than I would think possible from a cow.
My ankles and calves are swelling, especially in the morning. Is this normal? Normal for UCers?
I recently (within the last month) completed a prednisone taper. Now it’s back.

Does anyone who lives in a colder climate like Canada,

notice a relief of symptoms in warmer climates?

Like during a vacation to Cuba, Mexico, Florida, etc.??

Every year at or around Christmas, I flare bad, for a long time like 3-5 months. But if I go on a vacation, the flare stops, or goes into a time-out. Sometimes, I’ll move the bowels 2-4 times in the airport, board the plane, and not have the need till our destination. Then all is normal, until the return to Toronto.

As for Doctors, ….

I just read Adam’s book. It sounded like my life story, but for 20+ years instead of 2. But where I live, there is one GI Doctor. If you don’t like him (I don’t) then it is 2 hours away to the next one. About 5 years ago, I asked my family doc for a referral to another GI doc for a second opinion. My family doc said that I should think very carefully about that as the only local GI Doc would be pissed that I wanted a second opinion, and that he may drop me. Unbelievable!
So I suck it up and always know where the closest washroom is. But, as some may know, and I have experienced several embarrassing times, a 15 minute drive between washrooms is about 7 minutes too long.
I’m glad I found this site. I have been telling my GI Doc about stress and eating certain foods but he doesn’t believe in the correlation.
and believe it or not, have never heard of the correlation between alcohol and symptoms. (or maybe just blanked it out, lol) It always seemed a good way to drown the misery.
Thank you for the help, I’ll drop the drinking WAY down to a vodka once in a while, and start the diet asap.

Where I’d Like to Be in 1 Year:

Symptom free to start. and 30 lbs lighter. and independently wealthy, in Hawaii.
colitis beach bum

Eric relaxing it on the beach in a few more months!

My Medications Side of Things:
Well, strangely enough, several years ago, I was in a car accident that banged me up pretty good. The Doctor prescribed Oxycotins. I took about 5 out of 200, then stopped because I HATE PILLS (go figure).
4 or 5 months later, I had a nasty flareup. My body ached along with the other “normal” symptoms of blood, frequent …. you know. So I took an Oxycotin left over in the medicine cabinet. Pain went away, and no bowel movements. That was the easiest flareup ever. The bad side of the Oxycotins, I found out much later is that they can be highly addictive. They didn’t bother me in the slightest for addiction luckily, but they did work very well for the symptoms.

 written by Eric

submitted in the Colitis Venting Area —add your story too




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Canada, Oxycotins, weather

21 Responses to Tails from a Toilet Seat

  1. Midwest Dave
    Dave May 11, 2012 at 1:44 am #

    I don’t know if this helps any & god knows everyone is different but I’ve heard both sides: warmer weather hasn’t done much for some individuals when they’re flaring. For me however, being from Wisconsin, I only flared in the winter when I was sedentary. I had one brief flare in August one time but I had started Remicade infusions which curbed it quickly. I wish there was some sort of research or statistic or maybe even Adam can do -or has already done- a poll to see how people are affected by weather. I’ve just moved to California and just being able to see the sun continuously let alone keep the windows open has done wonders for me. Summer weather has always put me in a calm state of mind which I think helps with the uc. And welcome to the boards btw-

    • Eric May 11, 2012 at 8:52 am #

      Thanks Dave.
      I agree. I think there is a temperature/weather correlation. Also there is a mental factor involved.

      Have you been VERY interested/focused on doing something, then an hour or 2 or 3 later sit up and think, “gee, it’s been a long time since I had “the urge”? Then suddenly GET the urgent urge, and run for the closest bathroom?

      My girlfriend and I enjoy motorcycling. I have found that when I’m starting to flare, or flaring, I only get “the urge” as I approach a rest stop (and every rest stop, with a maximum of 4 minutes grace. “PLEASE, let the toilet be open!!”)
      I’ve noticed it time and again. Often the urge happens when I think of “where is the washroom?, or “how long has it been?”

      ANYBODY ELSE?????

  2. Eric May 11, 2012 at 7:05 am #

    You know, there is one significant advantage that UC, Crohns & other IBSers have over almost everyone else,
    We get to stop and ponder things.
    How many of your friends rush, rush, rush, from one thing to another non stop from morning to night with out stopping to smell the roses?
    Would Adam have created a website and written books without stopping to take the time to have the idea?

    How many creative brainstorm ideas have you mulled over, while perched on the think seat?

    I’m willing to bet that many of the world’s most influential ideas where created while gazing at the towel rack.
    It’s true that we are not smelling roses, but we are stopped.
    We have an opportunity to make our lives and this world a better place through creative thinking time. We have an opportunity that few have.

    Read, ponder, create, the world is waiting outside that door.

    Happy movements,

    Eric

    • Adam
      Adam May 11, 2012 at 8:05 pm #

      Hey Eric,

      I was thinking of you earlier today, I don’t think I need to tel you exactly when, but you are right on with your ideas! We sure are lucky to get a few extra moments of relaxation aren’t we!!

      Have a great weekend, and thanks so much for sharing your story with us,
      -Adam

  3. noelgallagirl May 12, 2012 at 9:16 am #

    Hi Eric,

    You sound like a wonderfull addition to the site!

    Come to think of it, I usually do have flares in the late fall and winter months! Not is the spring and summmer. Could be the cold and flu season, and the fact that at times, we might be prescribed those nasty antibiotics. Not to mention the lack of vitamin D from less daylight. I live in Penticton, BC, Canada, so I certainly feel you! I was born and raised in Toronto, on Avenue Road and the 401! Way back in the late 60s and early 70s.

    As for doctors, well don’t even get me started! I am not happy with ny GP, nor my Gastro doc. They are both extremely close mined, and in my small town, there are also few alternatives. I have chosen to go off the UC meds, so I am deemed ‘difficult’. Oh well, it matters not, to me! I am on probiotics and feeling 95%, not 100% better! No pain, looseness, nausea. Just a bit of blood on the odd day. That’s just e, tho…I am not advocating stopping meds for anyone else.

    Cheers, and welcome!
    Bev:)

  4. Sue May 12, 2012 at 12:54 pm #

    Hi Adam I’ve just been to see my consultant and he has told me that I am all right I don’t need my tablets any more he didn’t examin me or any thing I’ve had uc for years how can I suddenly be better in January I was bleeding for days I was put on steroids by my own doctor and at the moment I’ve been feeling like crap for days I’ve been in bed most of the time how can a consultant who only sees you every couple of years tell you your cured

  5. Eric May 12, 2012 at 3:30 pm #

    Thank you noelgallagirl.
    I stopped all my meds about 2 or 3 years ago. lasted oh let’s see….from about May (coming back from Cuba, party party drink eat drink etc. no symptoms) till September flare.

    Among many other things, I am a Refrigeration & A/C mechanic and I hear they need those in warm places. Could be the solution.

    BC rocks though. My brother spent many years in Tofino where I would visit. Extremely cool!…but not cold like here about 150 kms north of Toronto, just north of Owen Sound if you’ve heard of it.

    I just started that terribly boring SCD diet and things are settling, so Cheers to a good spring, summer!
    Eric

    • noelgallagirl May 13, 2012 at 6:59 am #

      Eric!

      Owen Sound?! Of course I’ve heard of it!! I have family scattered throughout Ontario…Timmins, Chapleau, Noth bay, South River, Sundridge, Thunder Bay, Orillia, Peterborough…I could go on and on, but I won’t. I have one big ass family (not big asses…lol)!

      So, are you on any meds at all, now? also, how do you think you acquired UC? With me, I believe I got it from taking accutane in the late 90s, and a few other strong antibiotics for various illnesses in the following years. I’ve had UC since 1999, 13 stupid years.

      I hope SCD works for you! It works for alot of people…like Adam, but I think you must really adhere to it. This damn disease is so different for everyone who has it, so it’s trial and error, it seems. I’m afraid every day, that the bad symtoms will return. Since stooping the asacol, I feel 95% better. I’d like it to be 100% though, if you know what I mean…

      Bev:)

      • Eric May 14, 2012 at 3:28 am #

        Hey Bev.
        I’m on Asacol now 6-8 aday.
        The doc almost freaked out when I told him I was off them.

        I tried the diet for 2 days, almost fell asleep while eating, it was so boring. My symptoms really decreased a lot.
        Then I cracked last night! A maple danish, a palm bay, a normal starchy dinner with girlfriends family, rye and pepsi, in that order.
        and this morning a 2 hour drive to Barrie, fingers and legs crossed. yikes!

        I’ve had the disease over 20 years. Really I have no idea how it started.
        btw, what is acutane?

        Eric

        • Bev May 14, 2012 at 7:04 am #

          Hi again Eric,

          Accutane was and is a drug prescribed for acne. (I cannot believe it’s still even legal to prescribe it, it’s screwed up more people) I took it four times in the 90s. Back then, there were no warnings on the label about it causing UC, and other bowel diseases! Too bad…I never would have taken it. I wish I could go back and do it all different. I started bleeding as soon as I was done taking it, and I’ve lived the UC nightmare ever since. It’s staedily become worse over the 13 years. I have pancolitis, now, which just means the whole colon is involved. Fabulous.

          My doctor was none too happy about me going off the asacol, either, but I feel so much better off of it. I was having such bad symtoms, I thought I would just try going off of it after 13 years on it. It seemed to be doing nothing for me at all. I was taking 12 pills per day, and I just took one less every day, until I was completely off. All of my pain, looseness, urgency, and nausea is gone. I thought the nausea was because of the UC, not the drug! The only remnant of symptoms now is a bit of bleeding…and I’ll live with that!

          Anyway, if you could track back when your disease started about 20 odd years ago…you just might find, that you took antibiotics alot around that time…or that you were on a holiday and got the trots, and took antibiotics to cure it…it’s amazing, really, how most of us poor UCers got this way from drugs and/or antibiotics…I wonder sometimes, why us, and not everybody who took any of that stuff…are we just more sensitive to those drugs??

          Cheers,
          Bev:)

  6. Lara
    Lara May 14, 2012 at 7:58 am #

    Eric: Accutane is a medicine used to treat acne. It has been linked to causing IBD — both UC & Crohn’s Disease.

    I just did a project on IBD for a class & found it’s more common in urban areas & northern climates. However, I couldn’t find any data to explain why that occurs. But it is interesting & maybe one day we’ll find out why this happens.

  7. Bev May 14, 2012 at 3:39 pm #

    Hi Lara..

    Very interesting…less vitamin D perhaps?

    Who knows.

    Bev:)

  8. Eric May 14, 2012 at 5:54 pm #

    It’s natures way of saying, “GET OUT OF THE COLD! YOU HAVE NO FUR. GO SOUTH!”

    As I mentioned before, I go to Cuba, eat drink very merry, no symptoms.

    Bev, if I think WAAAYYYYYY back, early in the disease was a bad time in Dominican Republic.But I don’t remember the antibiotics.

    Night!
    Eric

    • Bev May 15, 2012 at 9:46 am #

      Right-O Eric!

      Cheers:)

  9. Wendy
    Wendy May 23, 2012 at 12:47 pm #

    I didn’t want to wait and read all the responses before I wrote my reply. My dream is to live in Hawaii with lots of money too! Ha ha. I LOVE Hawaii, but I’m not rich and there’s a huge chance I never will be :(, but you never know.. maybe. I did notice when I went to Hawaii for the first time in December that I did feel GREAT even though I was still not recovered from a flare in October of that year yet. I could only sip water and drink herbal tea the whole time I was in Hawaii. My husband tried to talk me out of it because I was so ill, he was scared I’d have to get medical attention in Hawaii and be stuck there for however long it took me to get better. I can’t think of a better place to be stuck! Saved on the food bill while we were there too.

    I did feel better with the warmth but I can’t tell if it was my attitude and appreciation of warmth in one of the coldest months of the year and if I’d feel better anyway, or if it helped me. It probably does help being in warmer weather because your body is always fighting an infection with UC and when it is cold as well you have to generate energy to keep warm, so it must be a little more relaxing to be in the warmth.

    Another thing is, my doctor (surgeon) was the same way! I didn’t like my surgeon and I wanted a different one. NO ONE at Sanford health would refer me to a different surgeon, not my GI doctor, not the nurse practitioner for the GI doctor, not the patient advocate, no one. I finally phoned Mayo Clinic myself and asked them if they would see me and suddenly they obtained the referral. Amazing. Also, so what about the doctor becoming upset if you don’t like him/her. He/she, being a surgeon, should (or doctor) be more mature than that and realize some people just don’t get along and it makes sense to get a different opinion anyway. That makes me trust the surgeon even less that they would become upset over that.

    I’m a lot happier with Mayo Clinic and I feel way better about the decisions and less of a victim that people think they can make regarding my own body. If I want to die slowly of UC that is my choice, if I want to take meds, it’s my choice, and if I want my colon removed, it should be my choice. That’s how I feel anyway. Best of luck with your UC.

  10. Eric May 23, 2012 at 7:19 pm #

    Thanks Wendy.
    I’ll add the latest Doctor BS….
    I’ve been in another very bad 20-30 times a day flare in the last few weeks. I was out of Prenisone and every med except Asacol. So I call the specialist 2 weeks ago to say give me more prednisone or something else to help out. The receptionist says the doc is busy, I’ll ask him what to do and call you back.

    10 days later, I phoned back and said HEY!!!!! Somebody get back to me.

    So she phones back last Thurs, 10 mins before closing (not open on Fri!) By the time I get the message, it is after 5 and I’m remaining screwed for another weekend, a long weekend.

    So I call again 1st chance after the long weekend yesterday, 1st appt available the 31st. I say, “Umm, well ok if that is the 1st available. Could you call in some prednisone to stop this flare please?”

    “I’m sorry, the doctor is not available till the end of the week to call in for your medicine.”

    I’m asking for another referral to another GI in another city.

    I’m trying the SCD diet but it is difficult to remain true to it, so results are less than perfect.

    Wish I had access to the Mayo clinic, or at least a GI that gave a shit.

    ERic

  11. Eric May 24, 2012 at 6:11 am #

    Well I’m trying the SCD diet, though I don’t know what I’m doing. It is very hard for a guy who lives alone (though I have a fantastic girlfriend), and works two jobs to cook and adhere to the diet. Therefore I eat VERY little. like 2 eggs in the morning boiled, then my dog gets one. Or just a lunch. and some days only dinner. ANY TIPS FOR A BUSY GUY??
    But I’m still 220 lbs, with a bloated gut. It makes no sense. ANYBODY ELSE WITH RIDICULOUS BLOATING AND SWOLLEN ANKLES??

    I just started probiotics, and things are definitely improving. but I started less than 24 hours ago. My fingers are crossed.

    I honestly don’t know how everyone does it. During a flare, how do you work, make money to survive????

    Eric

  12. Johnny Drama
    JohnnyDrama May 26, 2012 at 4:10 pm #

    Hey Eric,
    Good story, I was actually thinking about posting something similar to this…
    Any ways first off, I recall seeing a news article about colder climate and IBD.
    http://www.medicalnewstoday.com/articles/240352.php ( I recall seeing one a bit differnt,but cant find it)
    Okay so I’m almost positive that weather plays a role in my symptoms.
    I was diagnosed back in the winter of Jan 2011, I live smack dab in the middle of the USA, 21.5 years and counting. Yes my goal is too graduate get me a job, and move west. I really want to live in California or Oregon. Although I totally agree with Wendy about Hawaii! I really think the depressing short cold days of winter really affected my UC. I went a whole year with out really any blood symptoms until Last Feb. I think the cold, lack of sunlight, and just short days are depressing for anyone, so it definitely makes things worse for the UC. It seems like now with the warm weather I feel lot better. I can go outside with my dog, frolf it up, fish, camping, outdoor festivals and what not… And I do it all with out alcohol, no need that shit man, That’s poison for the colon.
    I also see you are saying its hard to follow the SCD diet, C’mon bro, it aint that hard!
    I been follwing that diet like it my job since day one.
    It takes awhile to get used to, but I live alone currently too, work part time ,and go to school full time and still follow it. Its rough at times man, but you gotta plan your meals in advanced.
    I always got my morning breakfast of 6 eggs(only 2 yokes) diced up green pepper,and some cheddar cheese on top,followed by a banana and somekind of fruit to wake me up. I been cutting back on my OJ, because Im thinking its not getting along with me currrenty, so Ill eat like a few slices of pineapple or maybe a peach( never eat any fruit peelings)
    Then lunch I usuually eat chicken with some veggies man. Try to find a grocerie store that cooks Rotisserie chickens. I never eat fast food, but if Im having one of thoes crazy days where I got a test and work and I just need to eat soon, I go to trustworthy store and get one, One store makes these Tyson Rotisserie chickens and its pretty much all SCD legal, I usually buy some vegetable steams and a piece of fruit and bam thats a gosh darn good meal!
    BUT my final meal I SWEAR upon is my evening FISH Salad. Yeah I feel salad is very important!
    OVERALL MAN best of luck to you up in Canada( I heard you guys got some good herb up north)!
    PEACE OUT
    Johnny Drama

  13. bustamove May 31, 2012 at 9:29 am #

    Eric,

    In my research of UC it seems that I came across a statement about the majority of UCer’s are in the northern hemisphere and in the northern parts of northern hemisphere. I’m in Boise, Idaho and winter comes along and my immunity seems to go dormant right about the same time that the access to decadent food and drink increases. The last two years I’ve had flares in the middle of December and have not been able to get off the prenisone until late April. My body reacts like it is in hibernation. This year I was able to go to New Orleans at the end of March and wow what a difference a few days down there made. It only took a day for my energy level to perk up. I’m seriously considering going south for next winter even though I would miss my husband terribly.

  14. Hopskotch June 2, 2012 at 4:09 pm #

    Thanks for this post, Eric! You must be my doppelganger in a parallel universe, as we’re the same age and both teach at a college. Except I’m female, and my arch-demesis-building-bathroom-cleaner is male. :-) And I was considering writing a similar post, but mine would be on *warmth* causing flares! All my flares except the very first have started when the weather heated up. I’ve mentioned this to the doc, who has confirmed this is a problem known to GI docs but they don’t know why. (FWIW, I live in a warm climate.)

    I’ve got a few suspicions:
    1) Medication storage. Asacol claims it wants a “controlled room temperature of 68-77 degrees.” In San Diego, that’s tricky, since most folks like me don’t have A/C. But apparently docs and pharmacists do, because they don’t see that as difficult. Anyway, they all seem to agree that you can’t refrigerate them. So I’m now experimenting with drawers and cabinets away from sunlight – with thermometers in them that track temperature over time. And I’ve got a portable A/C I can fire up if the pills start breaking a sweat.

    2) Being sedentary or not. As Dave points out, this can happen in winter, but in my case, it’s more likely in summer. I’ve noticed during my latest flare-turned-to-IBS marathon, if I have to sit for long periods, I get noise alarms from my colon. Hmph, here I thought I was being so good by focusing on getting work done! OK, back to my normal ADHD jumping-bean state. :-)

    3) It could be just plain heat/sweating. Heat certainly does make my colon get “active,” but I guess that may be normal operation aggravated by UC or IBS. I think sweating must stress your system, so I guess that could affect things too. Though you’d think if it were this obvious, medical research would have figured it out by now. *shrug*.

    Anyway, thanks for the post and best wishes for a low-toilet summer!

  15. Hopskotch June 2, 2012 at 4:32 pm #

    Oh! I forgot an important possible connection in my previous comment (which is in moderation queue, so may or may not appear before this one):

    4) Sunlight and/or Vitamin D. In cold climates, people often don’t get much sunlight in winter – while in hot/sunny places, we tend to cower in the shade in the summer. Some recent labs just showed my Vitamin D at low end of normal range. Doc says low Vitamin D has been linked to inflammatory bowel disease, so recommends I take some supplements. Some supplements aggravate my colon, so I’ll experiment with that slowly… but anyway, could be another possible weather link? (I’m pretending here that sunlight = Vitamin D, but obviously it’s more complicated than that. Could be one, the other, or neither.)

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