So, I didn't think I would be that person who starts off their blog by talking about themselves. I mean, really? Isn't that a bit narcissistic? However, upon further reflection, I realized that blogging is... well, intended to be a bit narcissistic. Hopefully though, eventually this blog will develop more into a helpful place for those struggling to navigate the rough waters of IBDs. For those of you fully-intact "gastrointestinal people" who are not familiar with what IBD stands for, it is this: Irritable Bowel Disease, such as Crohn's Disease or Ulcerative Colitis. The problem is, these two guys are not "pretty" diseases to talk about. It's not often that topics such as poop, diarrhea, and blow outs come up in everyday conversation (unless you're a mother or father of small children, in which case they might). So many people still don't know exactly what they are. Case in point: Crohn's and Ulcerative are not in any of the spell checkers in the various programs I use. Maybe someday. Until then, we IBDers (as I will from here after call ourselves) need to continue to develop awareness of our diseases, as well as support systems, which help us get through the bad days. Because there can be very bad days when you have IBD. Let me tell you a little about when my bad days started...
I can still remember the date I was initially admitted to the hospital: September 14th, 2006. For me, Crohn's attacked my body quickly and severely. About a month earlier than my admittance date, I had started having to go to the bathroom a lot. And then a couple weeks later came the stomach pains. Never in my life have I felt such pain. It was crippling. Because I work as a teacher, I could not just leave a classroom full of middle school students. So the pain would become so unbearable that when I got a break, I would go into the bathroom, throw up, then lie in a ball on the floor. Not exactly a good sign. My doctor had prescribed me Asacol (for those of you Crohners out there, I'm sure that's a familiar starting place). This was a low-dose steroid that often helps mild forms of Crohn's. Even after a colonoscopy (lucky me! I didn't have to wait until I was 50 years old for my first one), my doctor diagnosed my case of Crohn's as mild to moderate. Two weeks later, he admitted me to the hospital. From September 14th until the week before Thanksgiving, I was in and out of the hospital - though mostly in. They tried everything, but not to much avail. My case got to the point where I landed in the ICU (Intensive Care Unit) for three days because my body had gone into shock. The colorectal surgeon was called in, but my GI (Gastroenterologist) held the surgeon at bay... for then anyway. They were afraid of my colon becoming so toxic that it would burst and send those toxins into my system. I'm sure I would have been more worried about it too if I'd had more energy or had been more with it. I don't remember much from those ICU days, just the cool clogs that my nurses had. Let me just pause a moment to give a shout out to ICU nurses. They are incredible. Best caregivers I had in all my time in and out of hospitals (well beside my mom of course, but we'll get to her later). Like I said in the title to this post, ya da ya da ya da (any Seinfeld fans out there?). Finally, the day came when a colorectal surgeon came to talk to me about the possibility of having my colon removed. This scared both me and my parents, and that conversation, along with some not so great experiences at the hospital, sent us down to Boston for a second opinion. That was the only time I have ridden in an ambulance. Too bad I wasn't really able to enjoy it. At that point, I was in such pain and had lost so much weight, that the jostling of the vehicle made things quite uncomfortable. I remember seeing the lights of the highway pass by.... whoosh..... whoosh.... whoosh. Let's just say that painkillers can do funny things to your perception of the world.
When we arrived in Boston, I had another colonoscopy. The same results: surgery recommended. So, within two to three days, I had my entire colon removed and was given scars, an
ostomy bag, as well as a
stoma. This meant that any stool would bypass my rectum (I told you it wasn't a pretty disease to talk about) and come out the side of my abdomen through what I nicknamed "Stella the Stoma" and into the plastic bag attached to me 24-7. Let's just say that Stella and I never became great friends. Actually, it was more the ostomy bag than Stella. My team of caregivers, including myself, my mom, my ostomy nurse, and my doctors never could find a successful way to make the ostomy bag stay adhered to my stomach. Just recently I found out that it is because my skin reacts to adhesives. Not a great thing when you need a bag to stick to you so you can "poop." Along with the adhesive problem, I never found clothes that really worked with the ostomy bag. Fortunately, I had the bag during the winter in Maine, so I just wore lots of layers, but I never found what the nurses had told me to be true: that you can wear your normal clothes after your surgery, and that the ostomy bag wouldn't affect your wardrobe. Thus, I entered the darkest part of my life. I wanted to die. Despite my
doctors saying I had UC (Ulcerative Colitis) and that I would be able to have a reversal surgery which meant the end of Stella, my intuition told me
otherwise. Which I knew if I was right about having Crohn's, would mean no reversal surgery and the eternal
presence of Stella attached to my side. Here are my memories from this time of my life: eating tomato soup and grilled with my then four-year old niece that my sister made for me; raising my hands in victory when I was able to walk to the mailbox and back; walking the mall with my dad (who would reward me - and himself- with some Cinnabon); filing endless amount of health inurance papers and medical bills; visits with my ostomy nurse who was at the end of her rope trying to get that bag to stick to me; the long process of trying to shower while keeping the ostomy bag dry; losing my hair; drinking shakes with Cod Liver oil; crying myself to sleep; crying on the couch; crying when I tried to walk into church for the first time so overwhelmed with the sight of people; crying. I felt I had lost myself to my disease and to this bag that never seemed to work for me. A once active athlete, I found that I didn't know what to do with myself anymore. I wasn't strong enough to do anything but walk. I couldn't work. Just lots of time to think - not a great thing for those who are depressed. In the end, I never was able to fully accept my ostomy bag, we never made peace with each other. Maybe it is because I'm a rather petite person, or maybe because of the
placement of the bag. Or maybe it was because the pathologist had diagnosed me as having Ulcerative Colitis rather than Crohn's which meant, that I could have an internal pouch surgery, which I wouldn't have been able to have if I had Crohn's. I clung to that hope like a lifepresever, despite my misgivings.
So over the course of another year or so, I had two more operations which took part of my small intestine and formed a
j-pouch, which would act as my substitute rectum. Even for some whose surgery goes perfectly, this procedure does not mean a return to normal bathroom habits. Actually, surgeons consider it a success when a j-pouch patient only goes bathroom (we're talking #2) four to six times a day. For me, I never got down to four to six times a day. For the next year, as I battled back from being a malnourished 84 pound waif, symptoms of Crohn's (which supposedly I didn't have) continued to plague me. I was going the bathroom 10-12 times a day, I had painful fistulas, and I couldn't gain weight, despite downing one or two shakes full of nutritional supplements and fats each day. Though I had returned to teaching, refusing to be kept down by this disease, I was but a ghost of my former self. I still had little to say in the way of weight gain. However, I got enough nutrition that my hair grew back in (curly!). It was a small victory, in what seemed to be a losing battle, that consisted of five more surgeries on anal fistulas. These fistulas were what, after a year and a half of struggling, made my doctors came back to the conclusion that I had Crohn's. Whatever disease it was, it was winning. And then in March 2008, my life changed when my mom found a website for a diet called the
Specific Carbohydrate Diet (the SCD). This diet eliminates all polysaccharides from your diet, which include things like: wheat/gluten, milk and soft cheese, sugar (or any sweetener except honey), starches (corn, potatoes), and preservatives. After reading the site at first, I thought to myself: "what is left to eat?!" Which is the same comment I get from most the people to whom I explain the diet. Despite my doubts, with MUCH support and urging from my mom, I started the diet. Three years later, I continue to follow the diet and am a healthy 115 pounds! Everyone says I look good/healthy. I've learned the best way to get compliments on your looks, is just to get really sick and look really crappy for about a year, and then when you start to return to health, everyone thinks you look great. Seriously though, the diet has made a great difference in my life. I would highly recommend it to those who want freedom from their disease. Do I still struggle? Yes. But that is because my j-pouch never really has worked the way it is supposed to. In addition, because of all the surgeries I had, I have sphincter muscle damage that means I a) don't always have control of my bowels and b) am constantly leaking a small amount of stool. But, I am so far from where I have been that I will take these continuing struggles. There are still good days and bad days. But to be able to go for runs again (on my good days), to be able to work, to be oh so happily married (as of this past June 25th!!), to be able to have the strength to want to live, is one of the greatest victories of my life. This diet has helped me gain back my life. Though still under the influence of the disease, thanks to the Specific Carbohyrdate Diet, and much thanks to all the support of my friends, family, and husband, I am able to enjoy life much more than I could just three short years ago.
And so that's my story. Ya da ya da ya da. I didn't really know that all that was going to come out this first post. I promise my later entries won't be so long-winded! And I hope that future posts will help those of you out there struggling to find your own way to help win the battle against Crohn's. Or Ulcerative Colitis. Whatever it is that we have.
My husband and I
06.25.11
