We all endure pain…but in the end-it is how we handle that pain which builds our character…

I often feel as if I’m stuck in a body I no longer recognize.  It’s as if my insides are winning, and my body’s appearance on the outside now displays all the damage from Ulcerative Colitis.   Whoever said this was an invisible illness was wrong.  If you have Ulcerative Colitis and live with the pain on the inside and behind closed doors, eventually your outside appearance will reflect what your insides are yelling at you.  The pain will ultimately wear you down so much, beating every last ounce of energy you had, until there isn’t any other options left but to choose the inevitable.  We all suffer in silence and deal with the embarrassment and daily struggles of living every single day.  What happens when you realize you have nothing left and no other choice-you fight some more.

The weeks after getting out of the hospital I remember feeling the withdrawal of the pain medicine, and being extremely sick and fatigued-to say the least.  It was a hard transition, as I was still taking meds for not only the pain, but also for the C-diff I had acquired while in the hospital.  I was sent home with a bunch of medicines and also a limited amount of pain medicines, as Toxic Megacolon (TM) was also a worry for my doctors.  I remember being warned repeatedly, while in the hospital, that if I asked for too many pain medicines that TM was a likely possibility.  Obviously, the pain far surpassed anything I could tolerate, and without much thought I continued to take the pain medication.   I took Dilaudid in the hospital and Hydrocodone when I got home.  After being on the pain medicines for so long, my body became used to having those drugs, and I experienced what I would later realize was a withdrawal.  I remember laying on the couch tossing and turning and feeling as if I was going to puke.  I did a few times, and it took days of feeling not well to feel “better” again.  That feeling of unbearable pain mixed with prednisone, and about half a dozen other medications didn’t help much during the withdrawal process.

I remember being at home and feeling absolutely miserable, everything was getting to me, and unfortunately for my family-no one was safe.  Life wasn’t fun for several weeks, and continued even beyond when I began to deal with the trauma of losing my colon.  It was an emotional roller coaster, to say the least.   I was lucky enough to have had my family around during such a difficult time, and it was a hard process.  A decision I had to make that wasn’t easy.  In my mind, I had exhausted all of my options.  I had tried the holistic route, I tried the medical marijuana route, and I had tried every drug imaginable.  After my Remicade ordeal, I was no longer a desirable candidate for Humira or Imuran nor was I brave enough to experiment with the drug Entyvio that was approved by the FDA in May 2014.  The road was narrowing with less and less options and the only path left, or so it seemed, was the road that would lead to the removal of the diseased colon from my body.

During my first meeting with my surgeon Dr. Ramamaoorthy (in mid August-2014), she explained everything and it all sounded relatively routine.  She explained the three step surgery to me in relatively simple terms.  Step one, go in cut out the diseased organ (colon) and create the stoma.  Step two (three months later) go in and create the “J Pouch” while rearranging my insides completely-in conjunction with tacking up my fallopian tubes out of the way (as to not create more scar tissue and keep them out of the way of the J Pouch).  Step three (3 months later) the final surgery and “the takedown” of the stoma and the reconnection of my stoma back on the inside.  It all sounded simple, straight forward, and as I mentioned earlier, routine.  However, I should have known I would be the extraordinary case that wouldn’t go as planned.  From the beginning of this entire diagnosis of Ulcerative Colitis I have been given a hard time-from the Doctor’s misdiagnosis, to the lack of proper medical treatment at Balboa Naval Hospital, to my stay at Pomerado Hospital that, certainly did not go as planned.  It took me awhile to understand the process and what would be happening to me.  In fact, I feel like I was in such a whirlwind of pain and anticipation that I couldn’t even recall what she said to me-lucky for me…my family was right there to remind me.

I can’t describe the pain well enough to help any of you who don’t have UC understand what it’s like.  All of my life, I’ve eaten whatever I wanted…without much consequence- be it weight or anything else…and now I could only eat bland food.  As everyone’s suggestions were taken under advisement-the message my body was giving me was clear…there wasn’t anything I could eat and no magical recipe of foods that would make the pain stop.  Coffee, my love for coffee, was a distant memory in the weeks leading up to my first surgery.  So on top of the physical pain, and the continuous embarrassment, was the daily emotional stress of figuring out what to eat and when to eat it.  If I had to leave the house (for a doctor’s appointment), I would refuse to eat anything several hours before and while I was out of the house for fear of an accident.  At times I considered starving myself, hoping that would help my colon relax and feel better.  Emotionally, I was a wreck.  I was angry, sad, fearful, hopeful—but angry.  The prednisone didn’t help my anger (that’s for sure).  Everyone in the world can think they understand…but until you’re walking in the shoes of someone who has UC…you have no idea the pain we’re enduring.  Depression usually follows a diagnosis of UC (and I wasn’t the exception).  You realize that a part of your life is over; the part where you can eat and not worry-have a drink and not worry…or do anything and not worry.  Car rides became scary, and even trips to Target became scary (as it’s a huge and overwhelming store).  Anywhere I went, where I didn’t know if there would be a public restroom close by would send me into an anxiety filled panic.  There’s a saying, “You know you have UC when you choose where to shop and eat based on their public restrooms.”  This was how I lived my life for 8 months before I realized, this wasn’t the kind of life I wanted to live.

Pretty and PiNk 💓

In the weeks leading up to my first hospital visit, I had tried everything. I was drinking liquid chlorophyll mixed with aloe vera juice (which was a disgusting combo, tolerable, but not ideal).  I had also tried VSL#3, which I still have in my refrigerator and refuse to throw out because they were so damn expensive-not to mention it was hassle trying to get my insurance company to cover it.  Apparently, insurance will only cover the powder packets of VSL#3 and not the pill form.  I had a prescription from Dr. Lee for the VSL#3 (pills)…but somehow this was an over the counter medication-go figure?  So, needless to say, after calling several people trying to get it straightened around I was switched to the powder packets of VSL#3…and a 30 day supply was somewhere around $50.  However, for the pill form it would have been around $100.  All this for a probiotic that “might” work.  I wasn’t really sold on the idea that this probiotic could be my key to remission, but I thought I needed to make an attempt and a probiotic couldn’t hurt.

By mid June, it was getting to the point where I didn’t feel comfortable leaving my house anymore.  I would get the urge to go to the bathroom and sometimes I couldn’t wait.  Ulcerative Colitis was running my life one day at a time, one hour at a time and I lived each minute with worry and in distress over when I would need to run to the bathroom next. I soon realized that if I needed to leave the house, I couldn’t eat anything prior to leaving or it would become an uncomfortable nightmare.  Going to lunch with friends and grabbing a casual drink were no longer options-I stuck closely to the people who knew my situation and knew it well.  The only thing worse than having Ulcerative Colitis is having to explain to new people what it is and what it entails- 98% of the time no one has heard of this let alone understands what it is.  It was depressing and uncomfortable to talk about, I was sad at what my life had become.  I used to go to the gym all the time, that was my release. As I started to lose weight, which was a direct result of not being able to eat healthy and everything going right through my system, even eating became depressing.  I could eat burgers without a huge problem, anything else was a risk I wasn’t willing to take.  All fruits and veggies were to abrasive for my colon, it seemed that almost anything I ate was irritating the lining of my large intestines.  

I have always been a girl who could eat anything, even if I didn’t like it-I’d eat it.  I was never a fussy eater and I considered myself to have a well rounded diet. Sure, I loved my fast food and still do-however, even after a few fries on my 30 second drive home from the drive through would send my colon into spasms.  Eating simply wasn’t worth the pain and embarrassment anymore. I even thought to myself, I wonder if I just stop eating completely what would happen.  When you’re in so much pain, things cross your mind that normally wouldn’t.  Soup was irritating to eat, even broth…I wasn’t sure how much longer I could handle the pain.  The worst part was, and still is today, that people look at you like you’re fine.  I didn’t look sick, but my insides were screaming at all times.  I was in a constant state of panic-wondering where the bathroom was and if the urge hit…would I even be able to make it.  I was a prisoner inside my body.  Even today at my doctors appointment, I was weighed in at 96 pounds…and the girl said to me “oh your tiny, I want to be tiny like you” and my response was “I don’t recommend this diet, it’s not worth it.”  Do I think she meant to hurt my feelings, no, I do not. However, it sickens me to look at myself this skinny-I itch my side and all I feel is ribs, I look in the mirror and all I see are bones.  Body image issues are also a huge part of having this disease, either your blown up on prednisone or your losing weight and nutrients because you can’t keep anything inside long enough to absorb the nutrients.

One day last June, I thought, I’m going to try medical marijuana-and in the state of CA it’s relatively easy to obtain.  I was hesitant, as growing up in NY I was always told drugs are bad, don’t do drugs, avoid the crowd of people who do drugs.  Here in California, it’s somewhat the norm.  So, I looked up the local dispensaries in the area and called one.  I told them I had UC and I was looking to buy some medical marijuana-the man who answered the phone was very nice (I found this company called Raw on yelp)…he told me where I could go to get a Medical Marijuana Card.  So I drove to the facility paid my $40 dollars and went into a private room with a computer screen.  The receptionist told me that a doctor would come on the screen momentarily and that I would talk face to face with him (like facetime). So I waited nervously, and the doctor came onto the computer screen and asked me what my symptoms were.  I told him I was diagnosed with UC and I have a lot of pain.  Which, was all I needed to say apparently because his response went something like this, “Absolutely, you should be taking medical marijuana-it has been proven to help patients with UC and it is especially helpful if ingested.”  AKA…pot brownies.  After, obtaining my MM card I asked my friend Kelsey if she would go with me to pick out some pretty smoke pieces.  She agreed and we made plans to go to Pacific Beach, CA (otherwise known as the mecca for smoke pieces in SoCal). There were probably half a dozen smoke shops within a two block radius.  So we went into two different shops before I found the perfect pretty in pink smoke pieces that I had to have.  They screamed my name-as anyone who knows me knows my kitchen is pink themed and cupcakes.  I loved the concept “cook for the cure” that KitchenAid does in support of breast cancer awareness, now if only I could get someone to endorse “cook for colitis”-we’d be in business!

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