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!
The Journey to a J Pouch 