Monthly Archives: May 2013

Colonoscopy prep

First of all, thank you for all the kind texts, emails, comments and in person comments (real life comments? is that allowed?) about my recently reported reduction in inflammation.  It is truly amazing how lucky I am to have such great people in my life.  Thank you.

Also, many people have been asking about the colon cleanse that I went through instead of taking the drugs that were prescribed for the procedure.  I did not make this decision lightly, and no I didn’t consult my doctor on it.  I did write him an email about a week prior, asking if there were any alternative supplements or anything like that I could take, but didn’t exactly let him in on my plan.  Like so many things in life, I figured it would be easier to ask forgiveness than permission.  This was a dicey maneuver on my part, I realize that.  But it made no sense to me (still doesn’t) why you would ask someone who has diagnosed UC to take such a strong laxative.  Many UC patients have daily symptoms of diarrhea, bloating, stomach cramping, and painful passage of stool.  Then the doctor wants you to take something that induces diarrhea, bloating, stomach cramping, nausea and for many people, vomiting, anal irritation and painful passage of stool (which, granted, probably just comes from all the pooping).  To me, it just doesn’t add up.  Additionally, every single person I talked to who already had a colonoscopy said things like: “The prep is the WORST!” “Good luck, the prep is terrible!” which didn’t add to my excitement.  As a result, I decided to take matters into my own hands and change it up.

There is a decent amount of work that went into the prep, so I created a new page for it.  I hope it serves as a good reference if you ever want to take on this challenge for yourself.  I will say that it was a challenge.  As you may remember, I tried a three day liquid diet in December and it was too hard to stick to.  I didn’t get into too many specifics in that post, but it was a difficult time emotionally, physically and mentally.  I broke down after only a day and a half and made soup for goodness sake.  I didn’t take it seriously enough and was still trying to maintain my everyday life, despite taking in zero calories.  Now that makes no sense.

This time around, I had a larger incentive to “do well” because of the scheduled colonoscopy.  If I didn’t clean out my colon, they couldn’t see what they needed to, and I’d have to reschedule the whole thing.  I did not want that outcome.  Plus I knew that I was breaking new ground by not going the normal route.  I wanted to be an example for other UC peeps to follow (and anyone else that may want to try it for their own colonoscopy).  I was very mindful of clearing out my calendar, and only committing to one social event for the weekend, which is a big deal for me.  I knew I had to let my body fully relax and come into a place of healing on its own, without trying to add in extra stressors.

Check out the new page, feedback is always appreciated and encouraged.  :)

ALISA’S MUSIC CORNER

Over the last year or so, I’ve been semi-obsessed with Allen Stone.  One of my favorite live songs of his is a cover of Bob Marley’s “Is This Love“.  The arrangement is just killer, beautiful harmonies, etc.  The other day, I was watching an old episode of Parenthood (I love that damn show) and in the background, I heard a woman singing the same freaking arrangement!  I immediately jumped on the google machine to figure out this mystery and it turns out that Allen Stone is just ripping off Corinne Bailey Rae’s version!  Granted, he still kills it.  His is a much bigger production with the band, etc.  But the concept was hers…I think?  Who knows, really.  Kind of goes back to an old argument that I’ve had with Jon and the Pirazzinis over whether or not a song is “better” if the person singing is the one who wrote it.  I still stand to the fact that just because a person wrote the song doesn’t make it inherently better when they perform it.  Some songwriters are terribile performers.  Some performers are terrible songwriters.  But for better or worse, wind was definitely taken out of my sail when I found out the innovative arrangement I fell in love with at an Allen Stone show had little to do with Allen Stone himself, other than his great taste in covering cover songs.

Oh yeah, back to what I was listening to.  :)  Corinne Bailey Rae on Spotify, of course.

corinnebaileyrae

Categories: Cleansing, Colonoscopy, Patient History | Tags: , , , | Leave a comment

Good news, everyone!

And I actually have good news, not like when Professor Farnsworth says it.  One quick caveat: this will be one of the more graphic and/or gross blog entries, so if you’re not into a lot of specific details and photos of my colon, you will want to skip this post.

After 3.5 days of colon cleansing in preparation for the colonoscopy on Monday afternoon, the procedure went off without a hitch and although my butt was very sore, the doctor reported that I have ulcerative colitis!  haha.  Seriously though, the inflammation is classified as moderate and goes up about 30cm.  No cancer, no weird polyps, no fistulas or anything crazy.  Just inflammation, bleeding, and of course, lots of tiny little ulcers.  This is phenomenal news for a few reasons.  First, did I mention no cancer or anything crazy?  Also, yes, 30cm may seem like a lot.  It’s about a foot of ulcerated colon.  But your colon is just about five feet long, so I’m going with the fact that 80% of my colon is in fact, healthy and functioning well.  It’s just that last little bit of the digestive system that we are dealing with.  Also, I confirmed yesterday with my last GI that previously, I was at 50cm of inflammation.  That’s fifty.  As in, 20 MORE centimeters than was measured on Monday.  As in, I have successfully reduced my “disease” by 40%.  Which is freaking crazy to me.

I just googled “20 centimeters” to see if I could figure out comparable things that are also 20 centimeters (it’s 7.87 inches if that helps you conceptualize it).  One of the top hits is a “2005 Spanish film about a narcoleptic transsexual woman’s life as she works to get the surgery to fix her “20 centímetros” problem.”  HA!  I did not see that coming!  I’m going to brainstorm and come up with other family-friendly things that are 20cm so I can say “I’ve healed about as much as this size 4 women’s shoe!”  Or something less weird.

IMG_2015Here’s my hospital ID tag, and of course a shout-out to UCSD Health System which has been really great, esp compared to my last GI dept, which I’m realizing more and more didn’t exactly fit me, at all.  As for the ID tag, I haven’t had one of these on…ever?  I don’t remember having one.  The only other time I did anything close to this was for my wisdom teeth removal in high school and I don’t think I had one then.  The entire colonoscopy experience was kind of surreal.  I had oxygen going in my nose, a blood pressure cuff on the whole time, a white plastic clip thing on my pointer finger, an IV, those weird sensors on my chest….as my friend Kirsten put it, the whole set-up makes you feel sick even if you’re not actually “sick”.  It was strange.  There was no general anesthesia, I was put into “twilight sleep” which was a combo of a nice sleepytime drug and a heavy pain killer.  I was pretty darn out of it, but still could remember quite a bit.  I was on my left side, and it kind of felt like someone had their hands around my waist and their fingers were digging hard into my stomach repeatedly.  Apparently when they got to the end of the colon, they tried to get through to the beginning part of the small intestine, but it was super difficult to navigate so they gave it the old college try (his words) but then figured it wasn’t worth the discomfort that I would go through since there was no sign of inflammation at that point anyway.  That part was unquestionably uncomfortable.  It wasn’t painful per se (probably because I was heavily sedated), but it definitely was not a fun experience.

After it was done, they called Jon right away, gave him results and he drove me home (thank you husband!).  I don’t remember much over the next few hours except that I got to eat again finally!  Yay!  As the universe would have it, there was a colitis support group meeting scheduled for that night at 6:30pm so although I was still kind of out of it, I strongly wanted to go because the speaker was a integrative nurse practitioner who has had UC for 20+ years and who also works with UC patients.  She uses medication as a last resort and was off meds for a few years herself at different parts of her life.  It was great to get new ideas and hear her interpretations of my results.  Most interestingly, she showed me on my body where the disease approximately goes (up to about my left hip bone).  I’m really glad I went so that I could share my super-recent experience and also the alternative prep that I did.  I’ll be writing a detailed explanation of what I did to prep instead of the prescribed laxative in the next blog post.

So here are the results in all their glory.  First a legend of the colon and where the pictures were taken:

Colon legend pic

Basically from the most healthy to the least healthy pics: 4, 6, 7, 8, 9, 1, 10.  I’ll just show a few here, but you can see the healthier colon looks more like a sausage or something in texture and granularity.  The medium part where it starts to get bad (pic 8) is starting to get smoother, almost more homogenized looking.  Then in pic 9, you can start to see a few ulcers and in pics 1 and 10 you get a very clear look at them.  The last time I saw my colon, it was like the worst part of pic 10, but everywhere.  It looks much calmer now, which makes me so happy.  The search for balance is obviously not even close to over, but I’m getting there, piece by piece.  And this improvement was a huge boost of energy for me to keep going in the direction I have been!

Colon shot 7

Colon shot 8

Colon shot 10

All in all, the experience was an interesting one.  Not positive or negative.  Just interesting.  I’m not exactly looking forward to my next one in a few years, but at least I can say that I know what I’m getting in to.  Due to the ever changing nature of disease, I’m supposed to have a colonoscopy every two years now, or every year depending on your doctor and the severity of the disease.  For me, the fear and nervousness that I had was mostly surrounding the effectiveness of my prep.  Now that I’ve gone through the whole thing once, it will make the next 30 a lot easier.  :)

ALISA’S MUSIC CORNER

I’ve been listening to Macklemore and Ryan Lewis all day.  While I must admit that I do love Thrift Shop, the rest of the album is markedly different…and really amazing.  I am super impressed.

Macklemore

Categories: Colitis, Healing, Patient History | Tags: , , | 4 Comments

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