Ulcerative Colitis Robs You of Your Life

Introduction:

My name is Dennis, and I am 23 years old. I have a Bachelor’s of Science Degree in Biology Pre-med and a minor in Biochemistry from ORU in Tulsa, Oklahoma. I currently live with my beautiful and supportive wife in Tulsa, and we are both applying to medical school (OSU-COM) in hopes of entering as freshman medical students in Fall 2014. I was originally diagnosed with ulcerative colitis in December of 2007 during my senior year of high school. It was terrible but with medication I was able to control it, since it was relatively mild. I have had 3 colonoscopies since 2007 (one in 2007, another in 2012 and the most recent being in October of this year – 2013) and have also been struggling with a nasty little bacterium called C. diff. I have had 6 recurrences of CDAD (Clostridium difficile-associated diarrhea) and have taken vancomycin many, many times since metronidazole (Flagyl) has done nothing for me. I hate UC & C. diff, but I do my best to stay positive and enjoy life as much as possible while I work as a lead supervisor in the transportation department at Saint Francis Hospital – also in Tulsa, Oklahoma.

Some more about me:

I am a typical ISTJ personality if you’re familiar with that system of determining the qualities and personality of an individual. I am very A-type and can sometimes (okay, most of the time) be a perfectionist. But it’s efficient! That’s usually my excuse when I occasionally go overboard. ;) You can imagine how frustrating UC is and how much of a stress-inducer it is when I don’t have control over it. I like to be in control of things in my life; not to sound boastful or too prideful, but I am very pleased with my life decisions, having avoided most of the pitfalls of the teenage years; many people say that I’m very mature for my age. I would rather read a good book by a fireplace with a glass of wine in my hand than go to a club and party it up until I’m totally schwasted. However, I do attribute a large part of my maturity and good decisions to my faith and my belief system.

I enjoy spending time with friends, having an occasional good beer (nothing that I can see through) at local Irish pubs with my wife, and reading medical textbooks in my spare time. I’m weird, right? Who does that in their spare time? Me. That’s who haha. I am also very interested in American history, politics and current events. Most of my friends and family would describe me as very opinionated, but I do listen to other people’s perspectives… if/when they make logical sense that is; haha just kidding. I am also very passionate about medicine and the wonder that is the inner-workings of the human body, hence why I desire to become a physician.

Symptoms:

Currently, I am having the textbook symptoms of UC. I experience extreme urgency (which, in my opinion, is the most annoying and difficult part of suffering with UC), frequent incontinence, bloody/mucous-filled stools, excessive gas, abdominal cramps and pain, and the overall feeling of needing to have a bowel movement but not being able to pass one, if that makes any sense.

Ulcerative Colitis Robs You of Your Life

My story begins at the start of my senior year in high school, back home in Illinois. My awareness regarding a strange problem I was having was very sudden and not gradual at all. One day I used the bathroom and experienced extreme abdominal pain/discomfort. I thought it might have been something that I ate and didn’t really think much of it. Even when I turned around to flush the toilet and noticed some mucous-like portions of my stool as well as trace amounts of blood, I explained it away. Maybe I just ate something kind of sharp, like some chips that didn’t get digested like they should have for whatever reason, and it scraped the inside of my intestines. Or perhaps my intestines were simply sloughing off some old wound I may have experienced or just renewing the lining of the colon. It made sense to me. I didn’t give it much thought and assumed it would go away. It didn’t. I started to experience the same thing more and more as the days progressed and before I knew it, I had blood coming out of my butt on a consistent basis along with painful bowel movements and debilitating urgency. Fun right?

I decided that the best thing to do was to tell my parents, even though I didn’t really want to. I don’t know why I didn’t want to. It could have been embarrassment or perhaps I didn’t want to burden them with something else to deal with when we had just welcomed a new member into our family – my little sister Grace. Taking care of an infant was enough stress for them and maybe, subconsciously, I didn’t want to tell them about it because I felt that I was old enough to take care of myself. Regardless, I told them, and we scheduled an appointment with my primary care physician. After a very short doctor’s visit, my PCP referred me to a local gastroenterologist. He was very local; in fact, he was literally right down the street from my PCP’s office. I couldn’t say I was excited, but I did want to know what the heck was wrong with me. So we scheduled an appointment with the GI doc.

After questioning me for a little while, palpating my abdomen and asking me some basic questions about my eating habits, he expressed his desire to have me undergo a colonoscopy. Yippee. Everybody likes to have a tube shoved up their butt by a complete stranger right?…right… I won’t bore you with all of the details; long-story-short, I was diagnosed with pancolitis (ulcerative colitis that effects the entire colon) in December of 2007. It was somewhat of a shock to me. I had never heard of the disease and didn’t understand how I could have developed it. I was confused, so I started doing research. I figuratively consumed any article or information regarding UC in an attempt to better understand the disease and why the heck I randomly developed it, especially at a young age. I was like a sponge, soaking in as much information as possible. I became an expert regarding UC. But still. I mean, I knew that old people got diseases all of the time, and I even expected t hat I would experience something go wrong with my body when I got older, but not now. Not at 17 years old. I started to think about whether it was genetic or perhaps, was it something I ate? Was it stress or was it a subconscious thing that I had no control over? I didn’t know, but I desperately wanted to find out. Who wouldn’t?

Although I didn’t hide my problems from my parents anymore, I became an expert at hiding what I was dealing with from my friends and my classmates. I was great at hiding UC (still am with people who aren’t very close to me, relationally). I would make excuses for why I needed to use the bathroom so often – bad Taco Bell or food poisoning, whatever seemed believable. I would plan out my lunch or my day in a way that assured I was near a bathroom so that my urgency didn’t seem so urgent to the eyes of others, unaware of my suffering. Even my teachers became very confused/concerned until I decided I had to tell some of them. I can’t say I was “proud” of my effectiveness in hiding my UC, but I sure was good at it. That is, until it got so bad that it was hard to keep my pants clean without crapping myself after leaving class on the way to the bathroom. Those episodes usually occurred only when I was experiencing a flare. When I was in remission, I didn’t even think twice about my Ulcerative Colitis. I took some pills in the morning and some at night and that was it. I didn’t give it much thought, and for a while, I had a pretty normal life; well, normal for someone who had just discovered that they randomly have UC.

I can remember a specific time when I was particularly worried about my UC, but I prepared as best I could. My high school senior zoology class was having a field trip day to, where else but the zoo. I knew there were bathrooms there, but I was with friends and classmates. I didn’t want to be at the elephant enclosure one minute and having my friends wonder where the heck I went the next, without any warning of my disappearance. I planned out our (my group’s) trip around the zoo, being very mindful of the locations of all the restrooms and being near them as often as possible. Everything was going well. The bus rides to and from the zoo were a little nerve-racking, knowing that I didn’t have the opportunity to use a restroom even if I needed one, but I escaped with clean pants. Phew. Lucky me. However, once the school bus pulled up to the school after our trip to the zoo, it hit me. That feeling of, oh no, you better find a bathroom and fast, or you’re going to crap yourself in front of everyone and there’s no hiding that. The moment we got through the doors of the school I bolted towards the nearest bathroom. I could hear my friends laughing and saying things like “well, when you gotta go, I guess you gotta go.” The bathroom was down a LONG hallway and needless to say, I didn’t make it. By the time I got to the bathroom stall and undid the belt of my jeans, most of the bowel movement was already in my pants. And it stunk. Great. Luckily, this was the end of the day, and I didn’t have to go back to class. So I cleaned up as best I could, headed back to my locker, grabbed my stuff and drove home, emotionally and mentally traumatized at what had just happened. I wish that was the only time that has ever happened to me, but it’s not. Over the years, I have had that happen so many times I can’t even remember all of them. It’s sad, and in my opinion is honestly the most difficult part of living with UC: urgency, followed by incontinence. I hate it, and it has robbed me of opportunities in life that I wish I hadn’t missed. All because my colon decided to go AWOL, and I had absolutely NO CONTROL over it.

Forgive me, but I’m kind of getting tired of writing about all of this lol. I’m going to shorten it up and just give you the Cliff Notes version from hereon out. Ever since I graduated from college in May of 2012, I have remained in Tulsa, Oklahoma and have been working at a large and local hospital since then. I started as a host transporter, then was promoted to a senior host transporter and am now a member of about 7 others that are lead host supervisors in the transportation department. I sit in the office more than I used to now, which I feel is a big relief since I’m not constantly on the move. It gives my body (and my colon) a chance to rest from all the physical activity that a normal transporter engages in on a daily basis. Some of us, depending on how hard you work, would not find it strange to walk over 15 miles a day in the large hospital I work for. Add this to pushing and pulling patients as well as equipment around the hospital, and it’s a normal thing to come home at night physically exhausted.

I am currently working on my first year of marriage with my wife while we both apply to medical school. I’m very thankful that she is so supportive and understanding of my UC. It’s not like I can help it. I have almost no control over it, besides the medication that I take, so she doesn’t fault me for having to use the bathroom every time we go out somewhere or even while we’re watching our favorite TV shows (thank God for pause on Netflix). Is it annoying? You bet it is! But what can I do? I work around it as best I can.

Whenever we go somewhere, whether it’s the movie theater or a coffee shop, I bring my backpack with me. Wanna know why? I prepare. I have an extra pair of boxers, an extra pair of pants, wet wipes, hand sanitizer, odor-eliminator spray and sometimes a roll of toilet paper depending on where we’re going. Just in case. I’ve found that being prepared beforehand can really be a lifesaver sometimes. It lowers my stress-level when I don’t know where the nearest bathroom is the moment I walk into an unfamiliar restaurant or a mall. I know that I’m prepared if worse comes to worst. I also try not to wear many light-colored pants or tight underwear that puts pressure on my waist/intestines. Sometimes, I even have to hold my seat-belt because it squeezes my lower abdomen so much and makes me need to use the bathroom within a few second of feeling some movement in my colon! You can imagine how terrible that is when I’m driving somewhere or on my way to work and urgency to have a bowel movement occurs. In addition to it taking my focus off of the road (making it dangerous), it is also incredibly distressing and embarrassing. I don’t really share many things as personal as this, especially on a website with people I don’t really know, and I’m incredibly embarrassed to even mention it, but there have been many, many times when I’ve had to pull over on the side of the road, sometimes in a parking lot, behind an old building or down a dead-end street, hide behind my car or in front of it, depending on where the most traffic is and pop a squat with wet wipes in hand. It’s incredibly embarrassing and not to mention unhygienic and just plain out gross, but what can I do? It’s either that or crap my pants. It happens all of the time. In fact, I’ve even come to expect to have to go through that little exercise if I’m in the car for more than 30 minutes. Sometimes, I don’t make it. I can’t remember how many countless pairs of underwear I’ve had to through out (new ones too) due to an accident that made them unrecoverable and plain-out disgusting. I hate it, and it makes me feel like crap (no pun intended). I’ve even had to do it with my wife in the car, especially on long road trips. She can attest to that. I’m glad she hasn’t left me yet. She’s a wonderful person, and I am lucky to have her.

Anyways, that’s my story. There are undoubtedly many details I left out or that I forgot to mention, but that’s the gist of it. I am currently dealing with a flare I’ve been having for a few months along with a concurrent infection with C. diff. That thing is the worst. And when it won’t go away, it’s even more stressful than the UC. I’m considering trying Humira as my doctor wants to put me on it, after ruling out infection with C. diff of course. So, I’m waiting. Waiting to get better. Waiting to get my life back. It’s depressing at times and certainly stressful, but I try to keep my hopes up. I try to be positive as much as I can. And I try to enjoy my life as much as possible, while dealing with this terrible affliction that I wouldn’t wish on my worst enemy.

So my question is, for those of you also dealing with a flare-up, has anyone tried Humira (adalimumab – weird name. Try saying that 5 times fast!)? Has it worked for you? If so, how long did it take to work? Is it really expensive? Do they have programs that help pay for it, if it is a high cost drug? Have you had any of the scary side-effects the main website warns about? Please let me know. I am so thankful that there is an online community of individuals struggling with UC that I can connect with, share my thoughts with and get some overall support from. When you have UC, it’s really hard to explain what you’re going through to people (even close friends and family members) who don’t have it or have never experienced it. It makes it a lot easier to talk to those who have experienced it and KNOW what you’re going through. Thanks Adam for this website; and thanks everyone for your contributions and stories. They have given me so much encouragement and hop e; and they’ve reminded me that I am not alone in this. There are thousands of others who deal with the same thing on a daily basis.

Oh and one more thing. I know I’m probably boring the mess out of anyone who is actually reading this but I wanted to say a quick (okay, maybe not so quick) word about GI docs. My first GI doc (for which I will write a very scathing review very soon) was one of the worst doctors I’ve ever encountered. He had nearly no bedside manner, was a very cold, distant and overall unwilling to listen to me, the patient. When I suggested things I had read about changing diet or trying other methods, he quickly rejected them and with a disgusted look on his face made me feel like an idiot for even bringing it up. God forbid I consider changing my DIET which logically would influence the health of my colon since everything I eat passes through my bowels. I was studying biology in college and although I had some respect for him as medical doctor, I lost that respect when he decided to approach me with a superiority complex that somehow what I was suggesting was irrelevant to my he aling or that what I wanted to try was stupid and a waste of time.

Well, needless to say, once I moved to Tulsa, Oklahoma and became a permanent resident here I did my research and found a fantastic osteopathic gastroenterologist. His name is Dr. Sheldon Berger and he works for Gastroenterology Specialists Inc. I will also be writing a review for him on this website, albeit a pleasant and positive one, unlike my previous GI doc. I feel much more comfortable with Dr. Berger. He listens to me, is open to trying other methods and even suggested I schedule an appointment with his office’s personal dietician to figure out what works for me and my colon. That’s the kind of physician I can work with on MY health. Long-story-short, I’m very glad that I changed GI docs. One of the best moves I’ve ever made with regards to my health.

Medications:

I was taking Asacol delayed-release tablets when I was first diagnosed with UC in December of 2007 through 2008. Then, due to a change in health insurance that occurred because I was dropped from my parents’ insurance plan when I turned 18-years-old, I needed to switch mesalamine medications from Asacol to Apriso. Asacol was not covered under the insurance plan that I needed to enroll in, and therefore I started Apriso. When I had the occasional flare-up (many times induced by the stress of midterms or finals week during the school year), my GI doctor put me on prednisone, which calmed down my symptoms and put me back into remission.

However, probably around my junior or senior year of college, the Apriso stopped working. I have no idea why, and neither did my GI doc. The only explanation I have is that my disease had progressed from mild to moderate and in some parts of my colon, it had progressed to a severe stage of the disease. This rendered the 5-ASA mesalamine medications ineffective at controlling my UC. The only thing that seemed to help was prednisone, but as anyone who has suffered from prednisone knows, a corticosteroid is not a long-term drug for maintenance of UC, due to various side-effects, some of them being very serious. However, I experienced the usual side-effects – moon-face, some weight-gain and lots of acne on my face, shoulders and chest. I especially hated the acne, but I was willing to deal with it as a trade-off for not having to use the bathroom 15+ times a day.

Then after some time, the prednisone’s effectiveness started to wear off too. Then I was hospitalized in November of 2011 with a double infection – viral gastroenteritis and C. diff. Add this to my already active UC and you have a recipe for disaster. I went into acute kidney failure and was severely dehydrated. After some antibiotics, IV fluids and a 5-day hospital stay, I was back to normal. But only for a short time. I have experienced 5 more bouts of C. diff as they have recurred every-time I stopped vancomycin (about 3-4 weeks after my last dose). I may even currently be dealing with my seventh recurrence, but I am still awaiting the pathology findings on my latest colonoscopy.

I am currently on 40 mg of prednisone, once a day and after my most recent colonoscopy my GI doctor is wanting to move me up to stronger drugs (biologics) such as Humira to control my UC. I’m very wary and don’t know how I feel about that, but I do know this: I want my life back. UC takes away your life, and I’m tired of passing-up wonderful things in life because, heaven-forbid, there is no restroom nearby “just in case” I need to go. It destroys your life, robs you of it, as I’m sure many of you who have struggled with severe symptoms of UC are fully aware of. I want to get better, and personally, I don’t want to think about some of the scary side-effects of Humira. I just want my life back, and if Humira works, I’ll take the risks…

I am currently on 40 mg of prednisone per day having some relief; I also take 4 tablets of Lialda, in the middle of the day, once a day. I’m not sure how much effect or benefit the Lialda is having on my colon since my last colonoscopy revealed moderate to severe pancolitis. As far as I understand, 5-ASA drugs are for those with mild to moderate disease, making them ineffective for treating mine.

Where I want to be in 1 year (hopefully):

In remission and discussing when to stop Humira, if I decide to even start it. I believe that remission can be maintained through lifestyle adjustments, but I’m not convinced that remission can always be found through lifestyle changes alone. I would like to be off of all meds, but I’m not 100% positive that going med-free will be an option for me. I hate the trial-and-error process of figuring out what works for me, but I guess there really is no other choice. Well, there is – continue to suffer with no relief, which undoubtedly, not only makes my physical condition worse but also my psychological condition. And I don’t want that. No one does. After reading many stories on this site, I’ve learned that everyone’s UC is different. There definitely is not only one answer to effective treatment and healing. I may be intolerable to things I don’t know. I try to keep a journal of all foods, bms, etc. because only I know my own body.

I know this website promotes natural treatments for UC which is what I want. I am very hesitant about starting Humira, and I really, really hope that it will work so that I can go back into remission and eventually stop taking it after a year or so. I have heard and read way too many horror stories about all the potential side-effects that real people are experiencing. I don’t want skin rashes, joint pain, fingernails rotting and falling off, higher susceptibility to common infections etc. That’s scary stuff! So I am definitely thinking twice (big time) about following my doctor’s recommendation to begin Humira. I just want to get better, but the more I read about the horrible side-effects of Humira, the less I want to even consider trying it.

Current Medications & Supplements:

Lialda (4 tablets per day), Prednisone (40 mg per day = 2 tablets), a men’s multi-vitamin, fish oil (3 capsules per day), folic acid (1 pill per day), and occasionally 2 gelatin capsules filled with 7-8 drops of pure oregano oil, as I’ve read that harmful bacteria such as C. diff hate oregano oil, and when taken regularly can purge the nasty critter from the lower intestines.

written by Dennis P

submitted in the colitis venting area