Monthly Archives: January 2013

Patient history

Caduceus

Disclaimer: I started writing this post before our vacation and did not finish it because there is so much to tell.  Consequently, I’m wrapping it up today.  It’s incredible to me the amount of growth and change I’m experiencing in my life right now after reading this and then reflecting on where I am today, right now.   I’m excited.

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I’ve been reading a lot online lately about healthy living, clean eating, holistic approaches, medical approaches, stories of others with UC, surgery, meditating, medicating….it’s all pretty overwhelming sometimes.  I think it’s worth covering some personal history to maybe find insight on why it is so hard for me to stick to a relatively raw, 100% whole-food diet, paired with a regular meditation and exercise practice, while maintaining an active social life with others who are eating and drinking whatever they want.  I may be asking too much of myself.  :)  But I feel as if it is doable, just a little out of reach.

I realized after reading my posts that I’ve been focusing a lot on symptoms here on the blog and that mirrors what I did in real life.  I know now there is much more than that, that symptoms are the outcome and the CAUSE of the symptoms is what actually needs to be addressed.  However, this is easier for my brain to grab on to, I guess.  And I know the symptoms are important so they can be recognized.  So here goes: a look at my long, tumultuous relationship with this imbalance manifested in my body and known as ulcerative colitis.

I unfortunately (or fortunately, whatever) did not document a lot of the early going-ons of my UC.  From what I can piece together, when I was 22, I got sick (diarrhea-style) in mid-November of 2004.  I could not stop going to the bathroom for about a week.   So I took a few Imodium AD.  It had my initials in it, couldn’t have been that bad.  Well it stopped the pooping, that’s for sure.  Stopped it up for four days.  And when I resumed bowel activity, there was blood in it.  Awesome.  I had had a tiny drop of blood in my poop about a month prior, but nothing else seemed off and it was only the one time which was easy to write off.  This one I could not write off.  It was pretty gnarly.

The next logical step that I knew to take at the time was to go to the doctor.  I had to do bunch of tests which were super fun and completely necessary (yeah, sure).  My favorite was where I had to put a drop cloth over my toilet so I could catch my poop and put it on a tester thing over three different bowel movements.  This way they could see if there were “potentially invisible traces of blood or blood-like substances”.  So I smeared my blood-mucus BMs all over that thing, haha.  I really did laugh out loud when I was doing it because it was that ridiculous.  But they have to go through their protocol.

After the test came back positive for blood being present (who would have guessed that??), they finally scheduled and performed a flexible sigmoidoscopy where they don’t put you under like a colonoscopy, they just stick a camera up your butt and check out what’s going on locally.  If you know the colon, they go up and to the left but don’t make the first big turn.  Basically, they check out the sigmoid colon (an aptly named procedure).  They determined I had proctitis, which is local inflammation of the rectum.  After the diagnosis, I was given a pamphlet, a prescription, and asked if I had any questions.  Ummm….yes, my main question is, what the F is going on?  Actually I wasn’t super alarmed by this (my apathy is alarming to me now), I was just happy to have a diagnosis and a way to treat it.  Seemed like a 1-2 punch.  1-you have colitis.  2-take this drug and it will go away. At the time, I didn’t know it was an “incurable” disease according to western medicine, unless you have a colectomy (removal of the infected area in your colon).  The doctor may have told me that, but I don’t remember and I’m fairly sure something like that would stick in my head.  I do remember him saying they don’t know what causes it, could be genetics or who knows.  So not to worry, don’t change a thing, just take these pills and you’ll be fine.  In terms of disease genesis, it wasn’t until years later I learned the link between Accutane and UC, or links between stress/diet and UC but I don’t attribute any one thing to me having colitis.  It’s so much more than one thing.

Side story: this flexible sigmoidoscopy provided the ultimate setup for one of my favorite moments in life and also in my UC history.  My parents, the very kind and wonderful creatures they are, offered to come with me to the procedure.  After it was over, as my mom and I walked out of the hospital and toward the car, she asked me if I ever had anal sex with Jon and if I felt that may be a contributing factor to my bleeding.  I was like NO!!!! and also….why didn’t the freaking doctor ask me that???  haha.  Seems like an issue that should have come up during all of the questioning and testing that I had to do for months prior to the flexible sig appointment.  Come on.  Plus, I love my mom for asking me that question with genuineness and without making it feel weird if I had said yes.  Mama’s the best.

So there I was with my little diagnosis and my little drugs.  I started taking 3 pills, 3 times a day along with suppositories every single night.  The prescription brand name of the oral drug was Asacol which cracks me up.  Who was sitting around the table deciding that one?  “Well, it is in the colon.” “Yes, and poop does come out of your a-hole.” “What word can we come up with that sounds like a-hole but also incorporates the colon?” “I know!  Asacol!”

At this point, I had just turned 23.  I didn’t change my lifestyle, my eating habits, anything else in my life.  It was my first year out of college meaning there was still quite a bit of drinking and partying on the weekends, so I continued with that.  I also had no desire to do dishes and I was almost never in the kitchen cooking.  I lived on drive-throughs and take-out.  Cheap take-out at that, since I had no money.  I also routinely processed all of my emotions through my stomach but I wouldn’t figure that out for a few years.  The symptoms got better for awhile and then the blood started picking up again.  They put me on different suppositories.  (I was maintaining 9 pills a day mind you, through this whole thing.)  Better for awhile then the blood came back.  Switched me to medicated enemas.

These were amazing drugs.  To this day, they are the most effective medication for me.  The suppositories and enemas are not used as a long term solution for maintenance care like the pills.  They are intended to put you in remission with the pills being the life-long solution.  You administer one enema every night for anywhere from 1-9 weeks.  The first time I used them, I did a 3 week run of nightly enemas, then tapered off, taking them every other day for an additional 3 weeks, and finally twice a week for 3 more weeks (9 weeks total).  It’s strange because all of these drugs I was trying have the same active ingredient but they are administered in a different form with very different results.  There’s a lesson in there somewhere.  :)  With the enemas, I saw the blood switch off overnight.  Literally.  The enemas would go in and I could feel the entire infected part of my colon cool off while the medicine spread through like a welcome breeze.  It reminded me of the old Pepto-bismol commercials and how it would coat the tummy.  The enemas basically coat the blood/mucus areas and wrap them up in beautiful mesalamine until the blood goes away.

I was SO happy.   Here it was, the reset button I needed to have the colitis go away, have my body be happy once again and I could start fresh.  I would keep the pills going at 9 per day until I could taper off and go to 1 pill, twice a day which was my goal for maintenance.  Whew.  What a load off!  Couldn’t believe I had found relief from this thing which had now been going on for almost two years.  My euphoria lasted a few months post-enema treatment.

Unfortunately, life finds a way, or in this case, colitis found a way to keep coming back and tapping me on the shoulder. “I’m here!” it woud say.  “Pay attention to me!  I’m telling you to pay attention to your body and soul!”  But I didn’t get that message.  All I got was, “These stupid pills and enemas are not working.  I’m not going to take them anymore.”  So I stopped taking them.  I still didn’t change any emotional processing, drinking or eating patterns.  The symptoms and causes were rampant but I didn’t care.  I was in a serious state of denial.  I didn’t talk to anyone about it, I just pooped out blood everyday and went about my business like it was no big deal.  Every few years I would think to myself, “man I should really get this under control and go back on meds.”  I would then take some enemas and/or pills (even tried a different oral mesalamine prescription called Colazal, at least they didn’t put ass in the name), clear up the symptoms for a few weeks to a few months, the blood would come back, I’d get frustrated and go off the pills, cycle starts over.  What a fun, blissfully unaware, destructive cycle.  Apparently, I physically wanted someone to slap me in the face before I got any messages.  I went through this for about 6 years.

I did go back and forth to my GI and was told repeatedly that nothing could be done about this with my diet.  I even found some case studies online of people who had cured themselves with diet changes and took those in to my appointments.  My doctor told me they were anomalies and although it couldn’t hurt to try it, she did not see a scenario where I would stop taking drugs.  I trusted her for a long time.  Looking back, she was not exactly a good fit for me as a health practitioner.  :)  I never actually told her that the Asacol wasn’t working anymore because I knew the next line of defense: steroids.  I was NOT about to go on steroids.  To this day I will not.  I would rather have surgery.  I’ve seen those things and I knew, even in my most non-aware days, that the side-effects would be worse than what I have now.  Prednisone is the most often prescribed for UC patients and it works for a lot of people…but at what cost?  I did a lot of prayer on that and knew it was not a way for me.  If steroids are ineffective after awhile for treatment, then the doctors start prescribing drugs that completely suppress or weaken the entire immune system.  (6MP is a commonly prescribed one for colitis.)  A lot of these same drugs are used to fight cancer.  If those don’t work, they start cutting and remove the infected region through J-pouch or ostemy bag surgery.  This slideshow does a good illustration of the surgeries.   Again, I didn’t know much back then, but I knew this was not something I wanted to put my body through.  I feel blessed that I never was told to go through with these severe medications or surgery, because if I was worse in the beginning, and the doctor had told me to do that first thing or in the first few years…..I probably would have blindly said yes.

During this time, I had many, many nights where I would stay up doing research on the after-effects of having UC for an extended amount of time and my main concern was (still is there sometimes) having this turn into colon cancer.  I didn’t care about what was going on right now, but I was worried that if I didn’t get it taken care of then I would be at a hugely increased risk of cancer.  Most websites will tell you that having UC for 5-8 years really makes the risk factor take off.  I spent more nights than I care to remember just crying about not being able to grow old with my wonderful husband (bf at the time) or have kids or whatever just from this stupid disease.  I had bouts of anger and “why me” pity-parties and all of the stuff that comes along with chronic disease.  I knew I had to do something, but I honestly did not know what.

In 2010, I finally started evaluating my lifestyle choices.  I thought to myself, well maybe it is worth looking at this because obviously these meds are not a long-term solution.  I started going to a chiropractor 3 times a week.  She also had a background in nutrition which was a nice bonus.  First step toward better physical health: check.  Step two: exercise.  I had tried yoga a few times but didn’t like it because I wasn’t very good at it.  I am nothing if not competitive and if I couldn’t dominate yoga, I didn’t want to do it.  What I in fact wanted to do was dance, but couldn’t find a good adult studio in San Diego.  So I started going to every yoga studio in SD that offered a free week of classes.  There are a TON of yoga places in SD and it was fun to check them out.  I ended up at CorePower because they were a little more hardcore than other yoga places.  They sat down and did freaking situps in the middle of class for goodness sake.  I was in.  I joined as a member and started going 3-4 times per week.  Physical movement: check.

Next big step was food.  I honestly did not think my diet was that bad.  Plus I was thin so I didn’t have to ever think about counting calories, which of course means my nutrition didn’t matter (or so I apparently thought).  My first foray into a diet shift was an all-raw food diet at the suggestion of my chiropractor.  She suggested a 5-day cleanse (Mon-Fri) with a juice-only day on Wednesday.  I agreed, but she did not know my insane competitive nature….I said, 5 days?  That’s for lame-o people.  I’m doing it for at least two weeks, if not longer.  I lasted just under 3 weeks.  I did “cheat” and have oatmeal for breakfast for the last week.  The major thing I noticed was not a shift in UC symptoms (which did do well for awhile) but rather my ENERGY.  I had always been a person who falls asleep anywhere and everywhere.  I didn’t think it was weird.  After this 3 week raw food thing, I was bouncing off of walls, and with zero caffeine.  Almost three years later, I rarely take naps and that feeling of tiredness in the middle of the day or early evening is just gone.  I used to be tired all the time.  I am so happy I did that first cleanse just so I could see how easily my body could adapt to something new.

However, as Papa would say, that worked so well that I stopped doing it.  I didn’t realize at the time that the diet/cleanse would have to be a lifestyle change.  I thought it would be a temporary reset and I could go back to my normal food.  So I went back to eating crap food….better than before with the drive-through and take out, but crap nonetheless.  I love anything that comes out of an oven, mostly desserts and breads.  I transitioned to more salads in my lunch life, which is good and continues now, but breakfast, dinner and snacks were not balanced.  Mostly processed, refined flour and lots of meat and dairy.  Back marched in the bloody poop and I pressed on.

I saw an acupuncturist for a few visits which was immensely helpful.  Like all of my treatments, it worked for awhile, then it stopped working (sensing a theme yet?) plus it was expensive.  I know I didn’t I got out of it what I could have had I stayed for more treatments.   I would like to return to an acupuncturist actually.  I loved it.

om

Blah, blah, blah, is this over yet?  haha. I’m falling asleep yet again writing it.  There’s an om symbol so we can have a picture to keep us awake.  Anyway, at this point of late 2010, I’m starting to get the message that there may be concerns more deeply at play than food and exercise.  I experimented with even more therapies: I stopped drinking alcohol for months at a time; I slowly tried to clean up my food choices and started cooking more and more.  I practiced yoga a lot and even did a teacher training so I could teach others about this beautiful practice.  I started brewing my own kombucha (quite delicious if I do say so myself).  All came to a head this past August when I made a strong decision to not be on the meds again which I had resumed in June of 2010, this time hopefully for the duration.  I started the vegan, non-processed adventure.  I started seeing an actual therapist to work through deeper emotional issues.  Last week, I started getting regular massages.  I began the process of shifting my perspective of my “disease.”  Maybe it’s something that I need to listen to rather than be pissed off at.  What is this persistant illness telling me?  Where am I off kilter? What can I do to reverse this damage that I’ve done to my spirit and self-image?

At this point, I’m truly appreciative of having UC.  It’s like a spotlight on where and when I need to focus my attention.  My body/spirit doesn’t like that?  Pain in the butt starts.  “Look at me!  Pay attention!”  It has been a long and interesting road, but I finally feel as if I’m in a place to do that.  I have been blessed with a rewarding job that allows me to only work 30 hours a week, leaving more time for grocery shopping, going to yoga, prepping food and loving my whole self again.  It’s exciting to know that all of the necessary elements are already in my body to heal me!  I just have to set them up for success.

This has been a cathartic opus of an entry.  Bravo for sticking it out to the end.  I’m going to go eat a pepperoni pizza now.  HA!  That was a joke.

ALISA’S MUSIC CORNER

CountingCrowsRecoveringTheSatellites

I had it on shuffle but then “Goodnight Elisabeth” came on so I had to listen to the album.  It’s on “Recovering the Satellites” by Jon’s favorite band, the Counting Crows.  Before I met him, I was pretty sure CC had only written two or three songs after Mr. Jones.  Since we started dating, I’ve now listened to all of their albums about 100 times each and attended 6 live concerts, each of which was better than the last.  Adam Duritz is a haunted soul who writes damn good music and performs it even better.  I’m not sure what I did with my life before “Raining in Baltimore” but I know it’s better now because of that song and so many others.  Thank you husband.

Categories: Colitis, Patient History | Tags: , , , | 6 Comments

Go tell it on the mountain

Hello wonderful friends and family and random internet stalkers,

I received an email yesterday as part of a mailing list from a guy named Adam who runs a website called ihaveuc.com.  His site has been a functional and emotional resource for me.  It’s a chance to read about how others are dealing with UC and ideas for things I can do.  Adam is a very down to earth person and just enjoys running the community.  Anyway, his email reminded me of why it’s good to talk about colitis and to be more open about what’s going on with me.

More to come later, but here’s the email I received.  I thought it was worth sharing.  Some background, Adam was pretty lucky in the grand scheme of colitis and didn’t have symptoms for too long and has been in remission for a few years.  Sidenote: I’m going to an integrative medicine day event at UCSD today which I’m hoping will be fun and educational.  I’ll let you all know how it goes!

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ALRIGHT, SO HERE’S THE DEAL,
last night I was over at a friend’s house for dinner (my wife was out with her girlfriends at some Czech meetup group deal in Mountain View) and I had a pretty crazy realization.

Even though I thought these friends knew all about my colitis, and all of the symptoms that go along with it, I was wrong. I must have left some things out.

We were all sitting down at dinner, and somehow the topic of the iHaveUC website came up. My buddy’s wife started asking me about a few things…one thing led to another and I was reading off somebody’s story with an iPad over dinner.(that’s what you’d expect from me right:) Like most of the stories on the website, they start with an introduction, then a section about symptoms.

I started reading “This went on for 2 years, on and off the Prednisone to stop the bleeding, toilet 20 or more times a day, taking immodium just to go to work”, and then I read out a bit more, but since we were eating dinner and looking at iPads, something told me it wasn’t the time to get into the story much longer.

There was total silence.

Then, after a few seconds, my buddy’s wife asked if I also had bleeding when I was real sick several years ago. “UH, Heck Yeah”, I told her. “I was bleeding like crazy for weeks and weeks, of course I was bleeding.”

It’s one thing to be talking about my “old symptoms” now. Of course it’s easy to tell friends and family that things were awful and really bad “back in the day when I was severe”. It’s easy now to talk about it. But what if I was still severe with nasty UC? Would it still be easy to talk about?

The answer might be “NO”, but at the same time, it can also be a “YES”. That’s up to the UC’er.

One thing is for certain. This disease is not something that the average person learns about. Average people who don’t have UC don’t go reading up on google, or youtube, or the iHaveUC site about this funny thing called ulcerative colitis. Outsiders to UC just don’t do that for shits and giggles, at least I hope not right!

So guess what, I’m happy to report to you that getting the real deal message across is our job. That’s right, the UC’ers of the world have some more work to do. We need to let others know what it’s REALLY ALL ABOUT.

Once you explain the bloody details that active ulcerative colitis can often mean blood flying out of your poop hole and into the toilet for weeks and months on end, that type of thing sticks into people’s brains. And especially if you follow up with telling whoever you’re talking to WHAT YOU THINK, and WHY YOU THINK this is all happening.

If you explain the dirty details about active UC symptoms early on, I can promise that when you’re sitting down to dinner several years later, symptom free and feeling great, the person you explained UC to before won’t be asking you “Did you have bleeding like that other UC person…?”

Just like everything else with this disease, the choice is always UP TO YOU. You can tell people the real deal about UC, or you can hide the reality. I think it’s better to educate the whole story. And you know what, your friends are interested in the details…more than you’d think.

Take care, and I hope you’re ready for the next survey, another one is coming up soon.

Warm regards,

Adam Scheuer

ALISA’S MUSIC CORNER

We recently wiped out our Macbook Pro after downloading something weird…plus with the whole java thing and our Babelcomputer acting slow and funky, we wanted to be on the safe side.  I backed everything up on our external drive but for some reason, the new Mumford & Sons album didn’t get saved, I overlooked it.  I just re-uploaded it this morning and am listening to it right now!  It sounds very similar to their last album but I love their last album so I guess it’s a good problem to have.  “I Will Wait For You” gets stuck in my head for days.  FYI, Phillip Phillips totally ripped off their sound with his first single, “Home.”  I honestly thought it was them on the radio yesterday.  Props to him for being the first American Idol winner to be played on our local indie-rock channel though.

Categories: Colitis | Tags: , , | 3 Comments

And we’re back!

What an amazing adventure.  Over the past few weeks, Jon and I traveled from San Diego to Orange County, Harrisburg, York, Philadelphia, New York, and finally wrapped it up with a 5 night stay in New Orleans.  We left our house on December 21 and didn’t get home until January 7.  It was the second longest trip we’ve ever been on, the longest being our honeymoon.  It was absolutely incredible and made me realize again and again how lucky Jon and I both are and what an extraordinary life we lead.

On the trip, staying with a plant-based, whole foods diet was not a challenge because I didn’t even open it up as an option for myself.  I knew I would try to mostly stay with that, but also knew that I would be sad if I didn’t experience the culture (and food) of the places I was going.  So I had New York bagels and pizza, New Orleans jambalaya and gumbo, bites of meat here and there, cream and cheese sauces, bread, very minimal alcohol (only twice and only a few sips), 1.5 beignets, king cake, and even half of a fully organic decaf latte (I haven’t had coffee in a really really long time).  I never went super crazy and ordered a meatball sub or anything (pizza was definitely the least UC friendly choice I made), but there were definitely a lot of things that my body is no longer used to.

I also went out of my way to find veggie and vegan friendly restaurants, which were very easy to find thanks to the interwebs.  We visited a ton of different juice bars, checked out local whole-foods joints and met some pretty fun people along the way.  We even made oat groats and fresh almond milk in our hotel room.

Overall, my butt and colitis were not happy with me at all.  I also got some version of the flu for a few days where I did nothing but sweat and sweat and feel like crap and sweat some more.  But even in the worst moments of colitis on the trip, they were nowhere near my previous worst moments over the last few years, even when I was on medication.  So I regret nothing and wouldn’t change a thing…including the occurrence of what I can only describe as a super uncomfortable “burny butthole feeling” WAY more than I have experienced since August.  :)  I had a few days of 99% blood-free poop, and three times had the super fun, mostly blood BM.  But typically it was in the middle of that, with a heavy majority of my bathroom trips on the mostly blood-free side.  It’s not fun for me to have any blood, but hey.  I was living life and enjoying every minute with my husband, family and friends.  So I was happy.

Now I am back to life and back to reality (great, now I’m going to have that song stuck in my head).  I’ve juiced everyday since we got back, have been eating great and feeling great.  I even went to a Crohn’s and Colitis support group dinner last night!  It was so nice to meet other people who have UC (or Crohn’s which is just in a different part of the colon) and are going through the same or worse things that I am going through.  I resumed taking a fiber supplement due to some really bad situations on the trip and that has been helping a lot.  I’m hoping my body will turn it around in a few days and be back to somewhat normal and from there, even better and on the road to a more balanced state.

I have to get back to work, but I will leave you with an email that I just wrote to the volunteer coordinator at the Chopra Center.  Sisterfriend has been trying to get me to volunteer at one of their retreats and finally one in March may work with my schedule.  So I wanted to give this woman a little synopsis of me and why I was interested.  It was kind of difficult to write because I didn’t know where I wanted to focus my attention.  How do I sum myself up in a paragraph regarding my health and life goals?  I like what I came up with and wanted to share it with you all.  Thanks for reading and happy to be home!  Happy New Year!!

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Hi Wendi!
My name is Alisa and I am Michelle Beckmann’s sister.  She forwarded me your email address (below) about connecting with you for future events.  I am very interested in volunteering at the Journey Into Healing event in March.  What are the next steps?  Should I arrange a time to meet with you in person or over the phone?  I live downtown so not too far, but not exactly right around the corner either  :)  Let me know what works for you!
Looks like Michelle shared a little about me with you already, but just as a quick intro, I am married, live downtown and have been in SD for just over 10 years.  I grew up in a great family in the OC who I am still very close with.  I have had ulcerative colitis since late 2004 and although I was on and off medication for a very long time, I didn’t start taking my health seriously until about 2010.  I’ve been through a series of different diet variations and have introduced yoga into my life.  I now teach yoga at CorePower about 3 times a week. 5 months ago, I went off the medication again and have been having great success with a whole foods, plant-based diet.  I’m still in a chronic flare, but the symptoms are WAY more diminished and I feel SO much better on an everyday basis.  I am seeking balance from within and working on my meditation practice.  It is hard for me  :)  I am hoping that with healthy emotional, dietary, physical and spiritual practices that I can find balance and be symptom-free from colitis.
Hope you are having an awesome day.  Talk to you soon.
Alisa
IMG_1506
Me and Jon in NYC!
Categories: Colitis | Tags: , , | 3 Comments

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