It has taken me a week to begin this post. Part of it is the fact that I am still trying to wrap my brain around the entire event and all that has happened over the past 3 weeks. Part of it is a bit of shame and embarrassment. And then part of it is I’m still trying to understand it all. But at the encouragement of my mother, I’m going to use my little platform to share my story. She made me realize that I could be helping someone else make the decision…maybe someone else won’t feel so alone.
Now you’re probably like, What the hell is she talking about? Well, as most of my readers know I suffer from Ulcerative Colitis, specifically left-sided colitis. I was diagnosed a little about five years ago and after I had my son my disease took a drastic turn. I began to have joint issues, my hair fell out, my skin would become sensitive to touch and the sun, etc. I had extreme pain most days in back, my side and stomach. I had frequent bathroom visits that mostly consisted of bloody diarrhea that left me feeling nauseous and in pain after each visit. These are some basic symptoms, unfortunately for me with no more health insurance because of my pre-existing condition and just not a lot of knowledge of the disease itself, my colitis got out of control. When I say out of control I mean it took over my life completely. I was unable to be really social. I was unable to work. It took a toll on my ex and our relationship, and eventually he left. I suffered from depression and had more emergency room visits than I could count. In 3 years I’ve had 3 in patient hospital visits, 2 miscarriages and I went from a healthy 128lbs to 106lbs. Colitis was killing me.
Now through all this I found a way to have a baby, move to a different state, provide homemade baby food for my son & daily dinners/lunches for my ex. I started a foundation and worked on building its programs. I did birthday parties, dinner parties, Disneyland trips, home-schooled my son and worked a few different part-time jobs. Don’t ask how I did it… I truly don’t know. I guess I didn’t feel I had an opportunity to really be sick, so I just acted like I wasn’t and lived. But I wasn’t living. I was dying. And it finally caught up with me about three weeks ago when I finally went to see my Gastroenterologist after having a flare up for about 5 weeks. I was hardly able to sit up, let alone stand. I had been taking prednisone for 5 weeks without any improvement and the Vicodin seemed more like a low dose of infant Tylenol! I was weighing in at 106lbs and was severely dehydrated. He took one look at me and told me to he was calling across the street to Cedars Sinai emergency room to make sure that I would be admitted. And so my grandmother helped me across the street where I find myself in the worse pain I had ever felt in my life. Imagine someone taking shards of glass and raking them up and down your back while simultaneously stabbing you in your side while your insides feel like they’ve been set on fire. Between the pain and the nausea, I was left in tears while I waited for them to call my name. This wasn’t the first time colitis pain had brought me to my knees sobbing like a child, but I had made up my mind that this would be the last time. I had decided that it was time to look into long-term treatment, Remicade.
Remicade was something that had been brought to my attention a few times by various doctors and other IBD patients. I had watched my younger cousin with Crohn’s Disease go from constant flare ups to a normal existence in a matter of months. All I kept hearing is, “I got my life back!” As I laid on the gurney thinking about the last two years of my life and realizing that I could count on one hand how many months I was in remission than flare up, I decided that I too wanted my life back. When I was admitted, a plan went into action with a team of doctors to try to figure out where to go from there. I assumed that they would be the first to jump on my Remicade bandwagon! I mean it seemed to be the hit miracle drug for IBD patients who were finding themselves in constant flare up. But after a few days of no change in pain and no response to the heavy steroid dosage, a new plan was presented to me. Colectomy! My head started swimming! Colectomy? Colectomy as in that surgery where you remove my colon out of my body, forever?! As in I will not have a colon anymore?? WOW! Wait, what happened to Remicade?! The last time someone presented the idea of a colectomy to me was when I was diagnosed with UC. My doctor told me my UC was not that bad and that a surgery like that was a long way off for me! Like a long way off! In fact he said something like, we’ll discuss it when you’re 40 and done having children. Well, I’m not 40! Hell, I haven’t even turned 30 yet and I’m certainly not done having children! So, wait, huh?! Don’t you think we’re jumping the gun here. Then there was that thing about the pouch on your hip that you have to poop into because you no longer have a colon to hold it for you. So, you’re telling me that I am starting off my newly single life with a freakin’ pouch on my hip that will hold my poop, I may not be able to have children and I’ll be colon-less… all before I’m 30?!
I shut down. I stopped listening to what they had to say. My ears started to ring and I found it hard to breathe. In the past year I had moved from Los Angeles to Texas, virtually halting my whole career, my boyfriend had left me, I had to move back in with my mother, I lost so much weight I couldn’t fit into my clothes and now, now they wanted to take my colon and replace it with an ileostomy bag! Clearly God was angry with me! Clearly. I begged that the surgery be the last option, let’s just give the medication a chance to work. Well within 7 days the brought the surgeons in to talk to me. What I didn’t realize is that I was basically a ticking time bomb of internal bleeding. My colon was beyond repair. Trying to do anytime of fusion intense medication only had a 50/50 chance of restoring my organs and saving my life. The medications needed two weeks to get into my system and apparently there was a very good chance that my colon could perforate in that time and then medications don’t matter because we are talking, lights out! So, I’m listening to this surgeon make his case for the colectomy. It seemed that there was a lot of advancement in the five years since it was first presented. Turns out, the colon is replaced with something called a J-Pouch. I still will have to have an ileostomy bag, but for only a few months and not a lifetime. I also will still be able to have children, it will take careful planning, but it’s possible. Okay, so it no longer sounded like a death sentence, but I still wanted to see if we could keep me intact and try the medication. They agreed…….until, the results from my second colonoscopy came in. Apparently there were parts of my colon where the tissue was so thin, they were surprised I hadn’t had a perforation yet. The doctor told me I had a good solid two months at the most to live in the condition I was in. That it was all up to me how I wanted to handle it. I could definitely still try the medication route and wait to see what would happen. I’d continue to be hospitalized, and they could keep trying to help me manage my pain as best they could. And in that waiting to see if the medication begins to work I could also have a rupture, bleed out or have to get a feeding tube because I was very malnourished. OR I could just get the colectomy. And then they left me with my thoughts.
At that moment I swore I heard Jax say, “Mommy!” and I knew there really wasn’t a choice. I needed to live. I wanted to live. Colitis had taken two years of my life and had stolen a lot of things from me…I wasn’t going to let it rob Jaxon of having a mother. And, I just wasn’t ready to die! So colectomy it is! And on April 7th, the amazing doctors at Cedars Sinai removed my colitis infected colon from my body and made me a stoma. And in an instant I became colitis free! The crazy thing is how amazing I felt just in a day. I mean aside from the surgery pain, I felt better than I’ve felt in 5 years. All of my symptoms disappeared over night! It was as if I was a totally different person. For the first time in a long time I felt healthy! I felt human! I felt alive! My incision pain felt like a paper cut compared to what I had been living with for the past few years. I started to wonder how I even lived like I was living. How was I able to function like I did on a daily basis in that kind of pain? Living colitis free for those first few days was an almost an out-of-body experience. I had forgotten what it was like to not wake up in pain from head to toe.
So why am I broadcasting this? Well, for one I’m a little tired of being embarrassed about my condition. There is nothing to be embarrassed about! Having any kind of autoimmune disease or IB disease is hard to live with, because for the most part people can’t really understand what you are going through. Half of the time, they don’t understand your condition. It leaves you feeling ashamed, embarrassed, alone and frustrated. I would spend hours online looking for online communities or stories of mommies who were walking in my shoes and I couldn’t find any. And I know someone is out there right now trying to make the decision and it’s a very scary one! A VERY SCARY ONE! But if this is the best thing! A few months of an ileostomy bag is better than the pain you are feeling now. Yes I have my days, and it’s still very hard for me to look at. But I know it’s a means to an end and it’s temporary. IT’S TEMPORARY! And you are not alone.
All I know is I’m alive, I’m colitis free and my son is trying to learn how to ride his scooter… I’d say I’m pretty blessed!
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