Patient History

2 years (ish) later

LoveOkay, I’m a few weeks late with this post.  Okay, almost a month.  :)  But I did celebrate two years (!!!) of being medication free on August 13, despite my lack of pomp, circumstance or blog post about it. It’s a little surreal to think that it has been two years. And simultaneously, it seems like much longer. Especially if I think if it in terms of alcohol! It helps that I’ve been pregnant for all of 2014, granted…still, I don’t remember the last time I was even buzzed, let alone drunk! Strange. I guess my 30s will be defined by different types of headlines than my 20s. I am okay with that.

It has been interesting comparing Year 2 of living drug-free versus Year 1. The first part of any new adventure is filled with hope and motivation and dreams and pie-in-the-sky expectations. After that wore off, in Year 2, I had to M A I N T A I N. Long-term maintenance can be much more challenging than the initial cold turkey decision. It has been for me in a few ways. First and foremost, I started feeling better! This was a blessing and a curse. And as my dad would say, my lifestyle changes were working so well that I stopped doing them. I started putting different things into my diet, in the spirit of “seeing what works for my body”. In reality, it just tastes good to eat a bagel with cream cheese occasionally. I am human after all. As I was feeling better, I lost that direct feedback loop of “eat crap or get stressed out –> have blood in poop”. I didn’t have the blood anymore and consequently, I had to find new ways to remind myself that it’s not a good idea to freak out at small things out of my control or eat random processed sugar at all hours of the day. Of course, after a few days/weeks of poor decision making, the blood would make a comeback anyway, so, good job colon? At least it’s consistent and I know what I’m dealing with. Having strategies to combat the colitis has been hugely helpful during this second year.

Socially, the long-term maintenance has been way easier than the first year. People adapted so easily to my strict eating habits that when I began deviating from them after awhile, they were kind of confused. Especially after I got pregnant and my colitis was SUPER AMAZING. Gotta love the upside of hormones. I was eating whatever I wanted with no repercussions at all. Now that the pregnancy is almost at an end (is it Sept 19 yet??), I am noticing the return of traces of blood, small changes in my acne, slight shifts in my hair, etc. I love observing it and figuring out how to return my body back to balance. It’s like a crazy Jenga game.

I think the hardest part of long-term maintenance is the most obvious: staying committed. It’s like being an addict. You have to take it one decision, one minute, one hour, one day at a time. You have to be okay with yourself when you deviate from the plan. Be nice to yourself and try not to develop an eating disorder.  :)  It’s all a little overwhelming sometimes, which means sometimes you take a break. Relax and eat a cookie and don’t judge it. But don’t eat the whole box either. Work in a little spinach and kale more often. Such a dance.

Speaking of being an addict, I was cleaning a few months ago, and it was stunning how I had hidden the drugs that were maintaining my colitis in various rooms of our house. I didn’t even realize it. I felt like an alcoholic discovering bottles they hid for themselves. I found a bottle of Asacol in the back of the third drawer of my bathroom. I found another half bottle faaaaaaar in the back underneath the sink. I still had three weeks worth of medicated enemas in my closet, just in case. Even though I had long since given up the habit of mesalamine, there it was, lurking everywhere. I knew I had the enemas as insurance in case things got really bad, really quickly and I needed it. However, I had been holding on for such a long time that they expired! The pills were all still good, but why did I have them? I hadn’t taken them in years. As I threw out the final bottle and box of enemas, I started crying. It was much harder than I thought it would be. At the same time, it was incredibly liberating. I knew I was doing right by my body, nevertheless, the finality set in during that moment. Saying I was done taking the drugs was one thing. Stopping the 9 pills a day regimen was another thing. Physically eliminating the option was apparently a whole new thing. Luckily, my incomparable supportive husband was there to give me hugs and tell me I was doing the right thing. He’s incredible. Not sure what I would do without him, but I’m pretty sure it would involve me shooting drugs in my butt through enemas. HAHA! That’s ridiculously gross! But true. Weird.

At any rate, the house is now officially 100% mesalamine free! It only took almost 10 years to get there! It is an interesting, frustrating, exhilarating, educational path, and I’m grateful everyday I’m on it. Plus, since it is a chronic disease, I may as well embrace the journey because it’s not going anywhere! As the name of the blog implies, I feel that I’ve been given UC as a life assignment and the only way I know how to deal with that assignment is through love. Love of self, love of patience, love of mistakes, love of others, love of balance within my body and life, love of food, love of yoga! It’s all very exciting. Thanks to all for the support and hopefully Year 3 will be even better than the last! I’ll have at least one more family member to share it with soon.  :)  LOVE!

 

ALISA’S MUSIC CORNER

In the spirit of love, here’s one of my favorite love songs ever. It captures the emotion of love in such a heartbreaking and accurate way. Makes me cry most of the time when I hear it. I like the studio version best:

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Categories: Colitis, Healing, Love, Patient History, Recipes | Tags: , , , , , , | 6 Comments

What’s in a diagnosis?

hello-my-name-is-001

What’s in a name?  That which we call a rose by any other name would smell as sweet.  Someone smart said that once.

I have been struggling with this concept for a few years now, however in the past few weeks it has come up repeatedly for me.  A diagnosis is the first thing we ask about and want to know things are going wrong.  I did this the other night with a situation that a friend is going through with their sister.  Before I could help it, I found myself asking, “Does anyone know the diagnosis?”  In essence I’m saying, what’s wrong with her and what’s it called?  As if having a name is going to solve all the problems of the world.  That’s obviously not how it is, although it sounds very appealing.  Fortunately or unfortunately, even with a specific diagnosis, we must reexamine our entire life when something is that pervasive and life-changing (like ulcerative colitis or bipolar or diabetes or whatever) to dive beyond the symptoms and figure out what is really going on.

This blog post has been extremely difficult for me to write.  I think it’s because I see both sides of the argument very clearly, and I haven’t decided which side I want to take.  Accordingly, I’m going to break it down as if I’m writing both sides of an opinion piece.  We’ll see if I come to any conclusions….

PRO-DIAGNOSIS

Naming the Game: it’s the way to go!

When I was first struggling with my ulcerative colitis, it was a scary and tenuous time in my life.  I mean, I was 22 years old, no real history of illness, and now there was blood in the toilet at the wrong time of the month.  It was weird.  Especially considering my entrenchment in western medicine at the time, I was desperate for a diagnosis.  Just tell me what’s wrong with me so I can take a pill or have surgery and be done with it.  I heard about a case study once of a woman who was going to the doctor’s office every year afraid of cancer, despite being very healthy.  When she was diagnosed with breast cancer at age 42, she reported feeling relieved.  She had spent such a long time agonizing over the possibility of cancer that once she had a category to put herself in, she felt as if she had a place to belong.  And I think that is the most powerful part of someone slapping a label on you.  Humans are categorizing creatures and it makes us feel good to have a spot to neatly classify things.  “Oh, you have XYZ disease.  Don’t worry.  We have XYZ intervention/medication and that will be fine.  Here’s a group of people to talk to with the same problem.”  By having a doctor tell me I have UC, I was given a starting point.  I could join the IBD support groups and google relevant interventions and feel good that I was part of a select cohort who could understand my pain.

In spite of a common diagnosis though, my UC looks incredibly different from all of the other UC patients that I’ve met over the years.  In fact, from the anecdotal perspective that I’ve experienced thus far, no two patients seem to express UC the same way.  Some have to go to the bathroom 20 times a day.  Some go 2-3 days without pooping.  Some eat meat and bread like it’s going out of style.  Others can only find relief in vegetables and fruits.  Some have tons of blood in their stool, some have none at all.  Some have crazy gas pains and acid reflux, others have never experienced such symptoms.

Which leads me to…..

CON-DIAGNOSIS

Name, schname: what’s the flipping point??!

The importance given to a diagnosis is downright dangerous at times, whether it be for a physical or mental illness. Many people find themselves over-identifying with their disease.  Extremists may even use it as an excuse to do or not do things.  At this point of my life/illness/balance though, I don’t think there is a single diagnosis that I could personally receive that would make me change how I treat it.  Now, this may be a bit unfair given all the work I’ve done over the last 9+ years wrestling with a diagnosis.  If I were going through this process without an initial diagnosis, would I be able to attack it in the same way from the beginning?  It’s cute for me to sit here with 20/20 hindsight and say, “Well going forward, I know this is what I would do” because I’ve already been through it.  And maybe we all have to go through it to figure out what works best for our body.  However I am hopeful that even if I had an undiagnosable disease at this point of my life, I would have solid steps and interventions to make my body the best version it could be.

I prefer to think of a diagnosis as a conversation starter.  “Hey you have schizophrenia?  Great, here’s an area to begin, only know that this isn’t the end all/be all for the rest of your life.”  Even something simple like a common cold is extremely vague and unique to the person.  There are medical and homeopathic remedies that work for one person that will never work for another.  Basically the diagnosis is nice and all, but doesn’t answer the true questions or do the real work of finding a cause and treating that.

A few years ago, The Soloist, with Jamie Foxx and Robert Downey, Jr. was released in theatres and it wasn’t the greatest movie ever, but it deeply moved me.  In 2009 when it came out, I was in a bad place with my colitis and was extremely unclear about what I was going to do next.  None of the medication was working anymore and I was feeling stuck.  The main character (Jamie Foxx) has fairly severe mental illness and it was very hard on his family and those around him who wanted to help him.  In one scene, there is a group counseling session and a character remarks:

I mean, it’s tired. It’s like they can’t find the medication that’s right for me, you know?”

Whew.  I started crying just by her saying that!  haha.  I’m emotional.  Still, it is SO FRUSTRATING despite having a “diagnosis” that doctors can’t seem to help you.  They have a honest motive, yet medicating a chronic illness is so…..ineffective.  It’s hard on the patient and the doctor.

The best scene though was when Robert Downey, Jr. was talking to the man running the support group.  He still was learning about Jamie Foxx’s condition and desperately wanting to help the only way he knew how.  Here is their exchange (I can’t find it on youtube.  It is about 47 minutes in to the movie if you own it or rent it.)

Robert Downey, Jr, talking about Jamie Foxx: What does he have, schizophrenia?

Group Leader: I don’t know.

Well, we should hook him up with psychiatric services and find out, right?

Yeah…I don’t get too hung up on diagnosis.

What do you mean?

What do I mean?

But how do you help someone if you don’t know what they have?

Look at these people. Every one of them’s been diagnosed more than you can imagine. And as far as I can tell, it hasn’t done them any good.

But he needs medication, right?

I’ll tell you one thing he doesn’t need: one more person telling him he needs medication.

This scene made a lot of sense to me on many levels. To be fair, it comes out of an exasperated situation where people are at the end of their rope.  Would the group leader have the same opinion if all them had never been given a diagnosis or talked to a professional at some point?  Probably not.  I guess at the end of the day, the diagnosis is important only as much as it can help you.  As long as you (or your practitioners and healing helpers) aren’t falling on your disease like a crutch, then it can be productive.  Writing things off simply because of a disease title…well I can’t seem to wrap my head around that one.

I’d love to hear your opinion!  Either here in the comments or in an email or in person next time I see you!  I am fascinated by this right now and want more input as my opinion forms….and then of course I’ll change my opinion 50 times after that.  :)

 

ALISA’S MUSIC CORNER

The Beatles!  Maybe you’ve heard of them?  I’ve been listening to them a lot this week.  They have so many ridiculously amazing songs; it’s hard to pick one to talk about.  I’ll pick a cover actually.  The best cover of Let It Be (in my opinionated opinion, of course) was from the movie Across The Universe.  In the movie, they took Beatles songs and made a musical with only a small amount of dialog which was interesting.  The intention and creativity behind the song choices was very well done despite the movie itself being kind of slow.

On the DVD extras, they show behind-the-scenes footage of the supremely talented woman chosen to sing Let It Be.  This is not on the youtube clip, but the director had asked the woman to simply think about the 1967 riots in Detroit and the meaning of the lyrics as she was singing.  Those riots raged for 5 days and included the National Guard, army, tanks and machine guns.  The riots left behind 43 dead, 1,189 injured, 7,200 arrests and over 2,000 buildings destroyed.  It is devastating to think about.

Wow, I must be my father’s daughter, bringing it to war culture out of nowhere!  Nevertheless it gives you a little context for this clip.  Those darn Beatles sure know how to write a moving song.

 

Categories: Balance, Colitis, Diagnosis, Healing, Patient History | Tags: , , , , | Leave a comment

One year later

calendar

A peek into my day today:

  • Wake up!  Hooray, I’m still here!
  • Take two probiotics
  • Go to the bathroom….another great bathroom trip!
  • Get dressed, grab my fresh green juice and head to yoga
  • Have an awesome yoga class with one of my favorite teachers, Tara
  • Come home, eat a homemade Clif bar, finish my juice, get ready for work
  • Simmer my ayurvedic tea for 10 minutes before putting it in my adult sippy cup
  • Head to work, eat leftover yellow curry with lots of veggies and brown rice/quinoa for lunch
  • Snack on nuts, dried mango, grapes, fresh orange/carrot juice
  • Come home, take my multi-vitamin, triphala and curcumin with aloe vera juice
  • Put the SCOBYs into the new batch of kombucha I started last night
  • Eat a salmon burrito and black beans with my beautiful husband
  • Write a blog entry
  • Take one more probiotic
  • SLEEP!

Whew!  Why is today so important that I felt I had to chronicle the whole thing?  Because today is the official one year anniversary of me not taking any medication.  It completely snuck up on me!  It doesn’t seem possible that I haven’t had a hamburger for a year.  How have I survived?  It has been an interesting road.  The experience has been a struggle at times, but worth every second in the end.  If you could look back even just a few years, this daily routine would have seemed ridiculous!  I mean, everything I do is shrouded in hippie-ness.  I love it, it’s just odd to reflect back on how much has shifted over the years.  Gradual changes and tiny steps… and then one day you look around and it’s all new!

I need to once again thank YOU, my friends and family for your seemingly unending support during this last year.  You have all been really patient with my strange food behavior and my sober ways.  Especially when I was being uber-strict, it was tough to maintain socially.  But no one ever made me feel bad or weird or whatever for doing what I was doing.  In fact, it went the other way, where many friends and family members shifted their own approach to food as a result of this blog and how I’ve been eating.  Most notable are my two amazing parents.  Over the last year, my dad has lost 100+ lbs, my mom completed yoga teacher training and actually started some self-care practices….my dad is even walking!  These are things that I used to only dream about.  I’m insanely proud of them.  So thank you to you all for making that happen through your understanding.

In terms of the colitis itself, I keep getting better and better!  This last month in particular has been really smooth and virtually symptom-free.  It’s pretty incredible.  I’ve already started to ease up on my eating habits, and have transitioned into being more flexible with bread or cheese here and there.  I’ve even had a few drinks!  Gasp!  haha.  Still no meals of steak and ribs or anything like that, but I found that I was becoming a little obsessed with the food I was eating.  And as I am constantly reminding myself, it’s not ALL about the food.  I didn’t want to develop an eating disorder, which I could feel brewing.  So I instead found patience with myself, allowed a moderate amount of processed foods to enter my body and I took them in with love.  For the most part, it is okay when that stuff happens.  I can feel in my body where it is off after I derail from the plan, but the whole system is nowhere near as sensitive as it was.  It’s pretty exciting.

At this time last year, I was having 3 or more painful bowel movements per day that were mostly or entirely blood.  I wasn’t even moving real product anymore.  I had the “burny butthole feeling” virtually all the time.  I was bloated, gassy and pretty sad about the whole thing.  I was still taking 3 pills, 3 times a day of asacol and its effectiveness had gone to zero.  I knew I had to make a drastic change (well, many drastic changes), but even so, it was a risk.  Thank goodness it paid off, and then some!  I’m so glad it did.  What a difference a year can make!

Here’s to many more years of learning, growing and continuing down the path of healing!  Cheers!

 

 

ALISA’S MUSIC CORNER

Rent

 

I think it’s safe to say that I grew up listening to the musical Rent.  I think I’ve seen it three times?  I forget.  But I must have listened to the soundtrack at least 200 times (almost as many times as Les Mis).  Every time I hear “Seasons of Love,” I fall even more in love with the whole show, and most of the time I end up in tears.  I can’t think of a better, more fitting measurement of this last year, medication free.   Measure in love.  Enjoy!

Categories: Colitis, Healing, Patient History | Tags: , , , | 8 Comments

Supplementary manifestations

Light on the end of railway tunnel.

Supplementary manifestations….sounds more lyrical than “new stuff,” or “current updates” doesn’t it?

There’s a lot to share, but I’ll try to keep it to a reasonable amount of words.  I had a follow-up appt with my GI at the beginning of the June (seriously, has it been that long since I wrote on here??).  He went over the photos with me and re-iterated how well everything is going.  Two things that stood out:

1-I don’t actually have any ulcers right now.  What?  Yeah, apparently it’s just inflammation and mucus.  Although this is good news, it is confusing and frankly, disorienting….which is probably a good thing.  I think it makes for good character development to have your freaking world rocked every now and again.  I’m so used to identifying with these damn tiny little ulcers that I have to now redefine myself.  Do I have to change the name of my blog?  Maybe I should dye my hair a new color.  Do I have to get all new friends and buy new clothes?  I hope not, it all sounds like a lot of work.

2-the “healthy” part above the inflammation is still classified as “inactive colitis” according to their biopsies.  Although this should not have come as some huge surprise to me, it did.  Basically, this stuff doesn’t go away easily, or at all.  It’s like the UC is saying: “Hey, in case you forgot, I will be with you for THE REST OF YOUR LIFE.  Just making sure you don’t forget and F things up again!”  I realize it’s not a big deal in the grand scheme of things, but goodness, it would be nice if it just freaking went away already.  And for good.

The doctor patiently explained again why a daily medication would be helpful.  It would reduce the chance of another bad flare by 50%.  He likened it to a vitamin that you take in the morning, just to make sure everything is running smoothly.  He explained it as a topical intervention….it goes directly to the colon, where it needs to and only affects the first few levels of cells.  The one he wants me to take is not an immuno-suppressant like many other UC drugs are.  It’s safe and relatively harmless on paper. He complimented me on all of my hard work and said I was 90% of the way there.  This just helps you get to that last 10%.  It all sounds very natural and easy when he says it.  :)

Fast forward to a yoga class I took on Saturday with one of my favorite teachers.  After working us really hard for 60 minutes (I thought I was going to die a few times during the flow), he had us sit and meditate.  He asked us to think about our greatest teacher in life.  What it is that keeps us inspired and focused.  What keeps us coming back to our mat.  He asked us to thank those teachers and pay respect to all of them.  I just sat there and cried like a crazy person.  I have had amazing, humbling, brilliant teachers.  But none of them comes to close to changing my life like UC has.  What choice do I have but to be grateful for this annoyingly efficient teacher and spotlight?  And I’m close.  I’m ridiculously close.  I’m 90% of the way there.  I don’t want to turn it off now with a prescription.  I’m still a work in progress.  Maybe I always will be.  But at least I’ll have found my way by listening to my mind, body and spirit.  I know what I’m doing may not work for everyone, but I am absolutely happy that it’s working for me.

Which leads to my other MD appt I had in June, this time with an integrative, Ayurvedic, yoga teacher who just happens to be my new primary care physician.  She is amazing.   I am grateful to have her on my side.  We had a two-hour appointment where she went through the most comprehensive health history that any doctor has ever walked me through.  She (ironically? fittingly?) said the same thing as my GI: Alisa, you’re almost there, we just need to tweak that last 10%.  The HOW was different though.  She prescribed VSL#3 which is a behind-the-counter, super strength probiotic.  I didn’t fill that prescription either.  I’m so stubborn!  haha.  I already have a probiotic that has been working great for me, therefore I’m happy with it, no need for the VSL.  She did make a number of recommendations that I am following, though.  In terms of herbs, I’m now taking triphala, curcumin (turmeric) and aloe vera juice.  I’m also supposed to be doing a digestive tea daily with fennel, coriander and cumin, but I’m still working that one into my routine.  In terms of lifestyle, she recommended more restorative yoga, warming foods, soothing activities, and of course, less stress overall.

For today, there is a growing light at the end of the tunnel: I won’t always have to have colitis as a reminder to be nice to myself.  It’s fine for now (that’s for you, Papa!) but it’s not exactly a sustainable situation.  Knowing that makes it that much easier to let it go, which I’m doing slowly.  I’m learning how to be a real person, functioning in a healthy way on my own, without the help and guidance of my colitis.

ALISA’S MUSIC CORNER

Does it make me a teeny-bopper if I love the new Bruno Mars song?  Is that who buys his stuff?  I don’t even know.  I’m not saying I celebrate his whole catalog, but I’m digging his new wannabe Michael Jackson/Earth, Wind & Fire song, Treasure.  I never got into disco music overall, but this song is just fun.  Check out the music video and you’ll swear it’s actually the Jackson 5 dancing around.  Despite what I said on my last post, I do love when people rip off other people and do it just as well or better.  So keep on rocking it, Bruno.

Bruno-Mars-Treasure-Video

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

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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