I’m going to shed some light on the past 10 months of my life in regards to dealing with ulcerative colitis. I’m hoping to educate and provide some insight on something I’m sure not many people are familiar with. I’ll try to keep it clean and not provide so many graphic details, and I apologize in advance if it can’t be avoided and you’re grossed out by stuff like this. I’ve become pretty numb to the details since my diagnosis.
What is ulcerative colitis?
According to the CCFA :
Ulcerative colitis is a chronic disease of the large intestine, also known as the colon, in which the lining of the colon becomes inflamed and develops tiny open sores, or ulcers, that produce pus and mucous. The combination of inflammation and ulceration can cause abdominal discomfort and frequent emptying of the colon.
Ulcerative colitis is the result of an abnormal response by your body’s immune system. Normally, the cells and proteins that make up the immune system protect you from infection. In people with IBD, however, the immune system mistakes food, bacteria, and other materials in the intestine for foreign or invading substances. When this happens, the body sends white blood cells into the lining of the intestines, where they produce chronic inflammation and ulcerations. (http://www.ccfa.org/what-are-crohns-and-colitis/what-is-ulcerative-colitis/)
The above website also lists the signs & symptoms, which include the following:
bowel movements become looser and more urgent
persistent diarrhea accompanied by abdominal pain and blood in the stool
stool is generally bloody
crampy abdominal pain
General fatigue is also not uncommon. There’s no known cause, though there are theories, and there is no known cure, besides surgery, which seems to cure a large majority of cases. There’s also the increased risk of colon cancer.
I first noticed something was wrong in mid-December. I was having increased bowel movements accompanied by bleeding, which obviously isn’t normal. I saw my primary care physician in New Orleans, and he ordered blood and urine tests and a stool sample to rule out Clostridium difficile, along with referring me to the gastroenterology department for an appointment. My stool sample came back normal, but there was an indication of infection by an increased number of white blood cells in my blood test.
I saw one of the nurse practitioners in the GI department, and we went over the possible diagnoses and set up a colonoscopy (fun!). I’d heard from close friends how enjoyable the bowel prep was, and I was not disappointed (this is where a sarcasm font would really come in handy.). I’ll spare you the details here. The colonoscopy was done on January 4th. I was able to speak with the doctor immediately after I came around, and he said all signs indicated ulcerative colitis. I wasn’t too surprised at this point, considering how bad my symptoms were.
My journey with meds
I was immediately prescribed Lialda, which is supposed to reduce the inflammation related to ulcerative colitis. Well, a couple hours after taking my first dose, I ended up in the ER due to some mild itching and swelling in my mouth and on my lips. I figured it was best to play it safe. The ER doc prescribed me with prednisone, a corticosteroid, and thus began that journey, which still isn’t over, even as surgery is on the immediate horizon. I found out that prednisone, when I’m on a high enough dosage, is really a miracle drug, for lack of a better term, except for the side effects (lowers bone density, acne, increased appetite, among others). It curbs my symptoms enough to where I can get through the day comfortably overall. But once I taper below a certain dosage (usually in the 20-30 mg range), my symptoms come back, in turn, making my days a bit more miserable, something I’ll get into more later.
Sometime in March, after I started seeing one of the GI docs regularly, I was started on Imuran, an immunosuppressant. Since UC is an autoimmune disease, Imuran lowers the body’s immune system to prevent the body from attacking itself. At least that’s the idea. Imuran also increases your chances for developing lymphoma. I took Imuran daily from March until early July. It seemed like it was working for a short period of time, but once I started tapering down on prednisone, my symptoms would just return. Quite frustrating, especially since my hopes were high that Imuran would work.
So now we’re in early July, and I’m just getting back from a convention in Las Vegas. Before going, my doctor and I discussed the possibility of starting either Humira or Remicade, both biologic medications, both fairly serious drugs. The main difference is administration: Remicade is given through infusions, where I would be at the infusion center at the hospital for a few hours once per month or so, while the drug enters my body intravenously. Humira is administered through self-injections once every two weeks. Both also increase the chance of the development of lymphoma, and both are also immunsuppressants, increasing my chances of becoming sick or having a simple cold turn into something serious.
Once I got the Humira in the mail, I had to go to the doctor’s office so a nurse could show me the ropes when it comes to self-injections. Needless to say, I was nervous. I had my iPod and headphones with me, and I was blasting some West Coast gangster hip hop:
The nurse who showed me everything was absolutely awesome. And patient, which was important because I was definitely taking my time with the process. I’m not a huge fan of needles, and even though you can’t see the needle at all, it still made me a tad nervous (understatement of the year). When I say my hands were shaking more than current day Muhammad Ali, I’m not exaggerating. I got through it though, and I felt proud the next day when I injected myself at my apartment (after psyching myself up in my living room) without any assistance (except for the gangster hip hop of course).
So from early July up until about two weeks ago, I was injecting myself with Humira once every two weeks. It got easier as I got used to just getting it over with, and it’s only painful for five or so seconds the medicine is going in. But I don’t really miss it. Both my doc and I thought Humira was doing its job. But once again, my symptoms made a return as I tapered down on prednisone (sigh).
How UC affected my life
I’ve had an eye-opening journey dealing with UC since the beginning of the year. I’ve had both positive and negative experiences, and I’ve really gained a new perspective on life. And unless you have the gift of being really, really good at empathizing, there’s a decent chance a lot of this will be hard to fully grasp. That’s not an insult at all; it’s just reality. Before I had this disease, I had a hard time understanding just how tough it was to deal with when discussing it with one of my very close friends. But I’ll do my best to portray everything.
At its worst, UC is a terrible, terrible disease. There were mad dashes to the bathroom. There were plenty of days where I just couldn’t leave my apartment. Sometimes I couldn’t get out of my bed, except to go to the bathroom. There were plenty of days where I couldn’t eat and had to find a way to stay hydrated as much as possible. The pain would be bad lying down and just get worse during bowel movements. I played a lot of solitaire and other logic-based games on my phone while in the bathroom in order to condition my brain to think clearly under pressure (sounds weird, but I’m pretty weird overall), an important skill to have as a poker player. It was really hard to pinpoint if certain foods were causing increased symptoms, so I just decided to stay away from fried foods and cut back on processed foods even more than I had previously done.
Fatigue played a large enough role as well. Sometimes, after driving 20-30 minutes from work to home through New Orleans traffic, I would just sit in my truck for 5 minutes and rest before going inside. After going grocery shopping, I would get the bags upstairs and just sit on the sofa for 5-10 minutes due to exhaustion. I haven’t been in the best cardiovascular shape, but stuff like this shouldn’t have been making me feel this way. Bowel movements exhausted me, especially on the more active days.
Going out in public was quite stressful at times. I’d always make sure I went to the bathroom before leaving the house, but I always felt the need to know exactly where a bathroom was located due to urgency issues.
UC made going to work in New Orleans tough sometimes. I was very fortunate to have co-workers and supervisors who were super understanding about my situation. I made the best of it and got to work as often as possible, but there were days where I physically could not go, especially if there was something to attend early in the morning. I felt guilty, but I realized there wasn’t much I could do except find a way to get better. I found myself in a similar situation at UNLV once I started to taper down on the prednisone. I ended up missing 5 of my first 16 or so days of work and class. But when it came to having people around me who easily understood my situation, the ball bounced my way again. I couldn’t have asked for a better response when filling them in on my disease and future plans regarding it. I felt bad because they gave me such an amazing opportunity, but ultimately it came down to my health having to come first, especially since it’s affecting so much of my life.
Running a low-grade fever is another symptom of UC. The first time I encountered this, I also managed to get a stomach virus at the same time. So not only was I experiencing painful bowel movements accompanied by blood, I was running about a 100 degree fever and vomiting. Those two days were not very fun. I also remember being on a road trip for a couple of conference basketball games with Dillard University. We were going to Tennessee, then straight to Arkansas, then coming back early the morning of Mardi Gras. Well my body decided this would be a great time to catch a cold and run a fever off and on, which was only exacerbated by the lack of sleep I had over the 4 days, and I was sick for Mardi Gras day. Early in the week leading up to Good Friday, I began running a fever, mostly at night. No matter what I did, I could not stay hydrated nor get rid of the fever for longer than a few hours at a time. So I ended up in the ER on Good Friday with an IV for fluids and steroids to stop the fever and curb the UC symptoms. Needless to say, I missed visiting and eating crawfish with my family that day. I really picked great days to get sick.
I ended up in the ER one or two more times over the next few months, my last visit being in July. Each time, my main problem was dehydration. It was after this last visit that I decided to try a new diet, the Specific Carbohydrate Diet, which centers around foods with simple carbs and avoiding foods with complex carbs, which our bodies may have a harder time digesting. It seemed to be working at first, but I was also on a high dose of prednisone at the time, so it’s really hard to tell. This diet also takes a lot of time and dedication, along with a lot of money over the long run if you go all out with the cooking. I ended up adding in other foods and just using it as a base, but I learned a lot about eating along with a ton of good recipes while exploring the lifestyle of the SC Diet.
Along with affecting work, UC affected a lot of other important aspects of my life. While working and living in New Orleans, I was playing poker part-time at night, mostly during the week with some weekends mixed in. There were plenty of nights where I had to stay in instead of going out to play, as much as I really wanted to just get out of my apartment. It affected plans with my friends and family. It was hard for me to plan something far in advance, and early morning activities were nearly impossible for me to attend. I felt guilty, but it just gave me the drive to find a way to get healthy as soon as possible. It’s no fun to have to tell people you can’t make it somewhere at the last minute because your gut just will not cooperate.
I took my digestion for granted before UC. I love food, and I love trying new food. I like eating a wide variety of food, and I didn’t envision something like this happening to disrupt that. Who would? I never really thought I’d have to deal with something like this at such a young age, but it happened. And it has helped me discover a lot about myself.
Even though there were times where it was nearly physically impossible for me to do much, I remained positive about everything. I knew I would get better; it was just a matter of when and how. Just like any other serious disease that affects life daily, UC is something that requires a positive mindset overall. There are inevitable setbacks, but without persistence and confidence, this disease will eat you up (no pun intended, for once). It’s mentally taxing. I firmly believe playing poker for so many years and experiencing the inevitable variances involved with that lifestyle really prepared me to deal with something like this. I’ve been able to keep an even keel about everything most of the time.
The Next Step
Right now, the next step for me is surgery to have my colon removed. Here’s some brief information on the surgery:
It’ll be a three part surgery, and the entire thing should be over with in about 8-10 months, assuming no setbacks along the way. The first part of the surgery will include the removal of my colon (most likely the entire colon since my disease is pretty advanced at this point) and the creation of a stoma. A stoma is an opening in the lower abdomen where the small intestine has been routed, allowing the passage of waste into an ostemy bag, which will sit on the outside of my body under my clothes, out of sight. This will most likely be temporary. The second part of the procedure will take place approximately six months later and will consist of (probably) the removal of my rectum, along with the creation of the j-pouch reservoir from my small intestine. This j-pouch will act like the large intestine to help complete the digestive tract. The third part of the surgery will connect everything together, allowing me to have “normal” bowel function.
The goal of the surgery is to rid myself of ulcerative colitis and its symptoms forever. There are risks involved of course. My small intestine may not be long enough to create a j-pouch, which will cause me to have an ostemy bag for the rest of my life. If this happens, I’m ok with it. That’s how frustrating this disease is. There could be inflammation with the j-pouch, commonly called pouchitis, which may or may not be long term. There’s also the chance that symptoms could come back, which could indicate that I actually have Crohn’s Disease (another form of Inflammatory Bowel Disease) rather than UC. Some positives of the procedure are that I should be symptom free, my bowel movements will eventually be pain free, and my risk of colon cancer would be gone. Ideally, I’d be going to the bathroom 4-6 times a day, which may seem like a lot, but that would be a relief for me, believe it or not. It’ll be a different lifestyle than most, but it’s one that I’m looking forward to making the absolute best of.
Going through everything I’ve been through with this disease has shown me a lot about persistence and adjusting to the adversities that life throws at us. It’s human nature to take certain aspects of life for granted, and it’s a shame that it takes life events like this to open our eyes to that fact. But that’s just reality. As humans, we should be more aware of how fortunate our situations are, and we should work to make the best of each situation. Look for the silver lining, the light, whatever you may call it. It’ll go a long way, trust me.
All of this has given real meaning to the phrase “live life to the fullest”. Or for the swagged out readers, “YOLO”. We really only get one life on this planet, and it’s our job to make the most of it. After this surgery, I will never have a normal digestive system again. Never. That’s a strong word, a serious word. But I refuse to let that slow me down in any part of my life. I’m already looking forward to getting back in the gym as soon as I can. I’m looking forward to traveling and playing poker full time and just enjoying life. I’ve had the urge to go skydiving lately, even though I’m really afraid of that feeling of falling. But once you really, truly grasp that concept of “YOLO”, those fears take a back seat, and experiencing and getting the most out of life takes the wheel. I have a ton of goals that I will accomplish, and I’m sure a lot of them will come out in my writing for however long I do this (or for however long you read!). I’m honestly excited to have this surgery done so I can live life completely.
I wouldn’t be where I am today without the people I keep close by. My family has been more than helpful, supporting each decision I’ve made, even if they don’t fully agree with it at the time. My closest friends who have been hearing about my issues since they began are such good listeners (or good pretenders). It’s helped a ton to have people to talk to about this while getting advice in return. A very close friend of mine, Jeremy, also has ulcerative colitis, and has had it for some time. We also have similar overall lifestyles (poker players, laid back), and I know there are times where I would have been lost with this disease if it weren’t for his advice and words of encouragement. He also introduced me to a friend of his who had the surgery done years ago, and I can’t even begin to explain how big of a help it’s been to talk with someone who’s been through this (and how many questions I’ve bugged him with). And last, but most certainly not least, is my lovely girlfriend Laura, aka Lovely Laura (just adding to the alliteration). She’s been the most patient person during this entire ordeal and has stuck by my side the entire time, which has taken a lot of strength on her part as well. Everyday, she has heard about what I’ve been going through, and she’s always available for me to vent to and get advice from. I couldn’t ask for better.
It’s full-steam ahead from here on out. I’m going to enjoy life to the fullest and put myself in a position to accomplish each and every goal I have. Good luck keeping pace!
“He who is not courageous enough to take risks will accomplish nothing in life.” -Muhammad Ali