Ulcerative Colitis Robs You of Your Life

Here is a fairly recent picture of me

Here is a fairly recent picture of me

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

32 Responses to “Ulcerative Colitis Robs You of Your Life”

  1. Krysta RuppOctober 26, 2013 at 6:06 am #

    I have had UC for 6 years. I am 34 niw and was diagnosed at 27, within a month of giving birth to my first child. It has been a long toad and i now have 3 kids. My following pregnancies were difficult and resulted in premature births. (They ar doing great.) I have been through many meds and have recently began Humira. I have been on Humira almost 4 months. I have not had any major side effects besides headache, itching, and an ache in my side after i take the shot that lasts the rest of the day. I am currently in a flare for which Humira has not helped and is getting worse. My GI doc has increased the dose now to once a week. We will see if that helps. My next step is to try to SCD diet. But with three kids and a husband, its daunting. (I am tired!)I have tried vegan and gluten free already without any success. I would not be scared of Humira as it has helped many many people achieve remission which makes it worth a try. Good luck!

    • Dennis P
      Dennis PorebskiDecember 31, 2013 at 1:14 pm #

      Hey Krysta, I’m glad to hear that Humira is working for you. Thank you for sharing your story. I was wondering if you were hesitant in trying Humira. I’ve read all of the scary side-effects and even the potential for developing lymphoma and other cancers as well as TB or fungal infections during use. I REALLY don’t like the sound of that. It also has the potential of increasing my risk of contracting these infections or developing malignant cancers since I am a young adult male. Great. I know you’re a mother and wouldn’t fall into the aforementioned category, but I was wondering if you knew the potential side effects before you started Humira and if you did, whether or not that made you consider and re-consider starting the medication, weighing the risks versus the benefits? I would greatly appreciate your thoughts/opinions as I am in the stage of getting back to my doctor about my decision to either start Humira…or do nothing at this point, which he obviously frowns upon and is not in favor of as UC is a chronic condition that doesn’t get better on its own.

    • Dennis P
      Dennis PorebskiDecember 31, 2013 at 1:16 pm #

      *might start working for you once you’re out of the flare…sorry about that haha

  2. JasonOctober 26, 2013 at 6:17 am #

    Sorry to hear that you have to go through this. I was diagnosed in January 2012 and within 3 months my symptoms were horrible. I’ll spare the details since I’m sure you’re quite familiar with them. By that June I was in the hospital getting IV steroids. It was a miracle! I thought I was cured. Guess again…..symptoms came back, started Remicade and had horrible side effects plus it did absolutely nothing for me. Ended up in hospital again in October for another round of steroids and decided at that point it was time for surgery. I had part one of the j pouch surgery November 14 of last year and my takedown this past January. Without question the best decision I’ve ever made! I feel better now, and am in better shape than I’ve ever been in my life! The recovery from surgery was a little rough at times but worth every second. I don’t take any meds at all and the disease is gone! I myself strongly suggest surgery since it worked so well for me. But that decision is up to you. Good luck my friend, I sincerely hope you kick this disease in the ass just as I did!

    Jason

    • Dennis P
      Dennis PorebskiDecember 31, 2013 at 1:18 pm #

      Do you have a normal diet now that you have a J-pouch? Are there any foods that are off-limits for you? I don’t want to consider surgery and then not even be able to eat some of the foods that I enjoy. I feel like that would be a total waste, plus, I’d be missing my damn colon! Lol

  3. JackieOctober 26, 2013 at 6:21 am #

    Dennis,
    I stopped meds for my UC 6 years ago. I treat myself with turmeric, aloe juice, probiotics, red raspberry leaf tea, cayenne tincture, oil of oregano, and slippery elm, and diet. The quality of your herbs are important. Obviously diet is huge ! I’ve had many GI’s tell me no need to change it. I have not found 1 dr who actually helped me. I took to my own research and trial and error.

    I also had cdiff which I had to diagnose myself, which led to my UC in the first place. Look into FMT for your cdiff infection.

    • Dennis P
      Dennis PorebskiDecember 31, 2013 at 1:19 pm #

      What did your doctor say when you decided to take matters into your own hands and treat your UC naturally? And do you have any more flares or are you completely “cured” now that you’ve been off of meds for 6 years? Do you have to continue to take the supplements in order to stay in remission or are you healed?

      • JackieJanuary 2, 2014 at 7:25 am #

        I’ve had doctors try to discredit me, my herbs, etc. This past September I had to get a colonoscopy done and was bullied into taking asacol again. I’m allergic to it and the dr told me I was making up side effects. I caved and took 2 doses. I was in agony and vowed never to take it again. The doctor was and is a total jerk! I obviously stopped going and took to my herbs and diet hardcore again. I Was able to get into an almost full remission in about 8 weeks.
        I made an organic cayenne tincture which really threw my body into a healing mode!
        I still get bouts of diahhrea and mucus at times, but no blood, no urgency, and no poisonous medications! I eat as organic and non gmo as possible and that helps tremendously.

        • bevJanuary 2, 2014 at 7:33 am #

          Wow…great post Jackie…bullied into taking asacol…boy I hear that! It’s almost unbelievable that some doctors do this, but that’s exactly what they do. I too cannot take asacol. It made everything worse and made me so ill I wanted to end it all. So glad I didn’t! My doctor didn’t believe that asacol could make anyone so sick I also had terrible systemic side effects fron the steroid enemas that the doctor said could not happen either. Needless to say, I’m off all of the drugs now and just try and manage this mother on my own, naturally.

          I feel a million times better and I want to live again! I’ll never ( yep I’m saying NEVER) take a med for UC again.

  4. Wendy
    WendyOctober 26, 2013 at 6:56 am #

    I had that issue with a crappy surgeon. I just left him and went to Mayo Clinic (much better). He was the only surgeon in our area that could remove a colon. I also totally know what you are talking about with the urgency being the WORST part of dealing with UC. I hope you are out of the flare soon. I am in a flare. I lost 20 lbs in the last couple of months. I got the bleeding under control with astaxanthine and supplements and vitamins. I refuse to take drugs, although, if it gets bad enough I will. I just think drugs are a mast in the case of UC as far as my experience is concerned and drugs don’t actually cure anything.

  5. Allison-3
    Allison TranterOctober 26, 2013 at 7:26 am #

    Hey Dennis-
    So sorry to hear all you are going though. You seem to have an amazing attitude and that is half the battle. I also earned my Biology degree while in a 2 year active flare of UC. I can look back and laugh at the times I crapped (and peed) my pants and passed loud, smelly gas in Microbiology lab (you know how close you are with your lab partners). It was rough- and so embarassing, stressful & isolating.
    with that said- one of the best things you can do is research THIS website (and you are here). I have received life saving advice and support from Adam and all these peeps. It is comforting to know that I am not alone in UC.
    First off, You need to clear up the C-diff once and for all. It mimics UC and may even cause UC (read the research). Personally, drugs only masked my symptoms and I chose to STOP pursuing that road. GI docs are in the Dark Ages- my first doc told me I’d have a lifelong illness, be on meds my whole life and eventually need surgeries. Dr. Death sentence- I said “can I heal my colon? can I change my diet?” He chuckled and said NO dear. He literally sneered at me! Total PRICK. I was devestated.
    Of COURSE food matters. Just like it matters for diabetes and arthritis and all kinds of diseases. Remember, as you are pursuing your medical degree not to let yourself be fully indoctrinated into the cult of pharmaceuticals. Also, pharma can’t make money on telling us to go and eat the right food….??? I think GI docs have the best intentions BUT they know what they have been taught and they BELIEVE in the pharmaceuticals. I think they don’t want to be labeled “quacks” if they put their faith in nutrition and stress reduction. I can only hope it will eventually change!
    I was also a Type A and that is not always the best for UC. I have learned to relax and now I just strive for Type B+. Yoga, meditation, dealing with my emotions blah! blah! blah! Kudos to your wife- she rocks!
    Read Breaking the Vicious Cycle- SCD diet. I am drug free, pain free and living a pretty normal life. When I stress too much or stray from my diet my body lets me know- but now I am committed to LISTEN and honor it.
    Best of luck with med school and your health and healing-
    Allison

  6. Shannon D
    ShannonOctober 26, 2013 at 7:36 am #

    Reading your story reminds me a lot lf myself, I was too diagnosed at age 17 and running to the bathroom in school all day long and the car rides definitely remind me of myself and how bad some trips would be, I feel your pain. I recently went through a terrible flare and was hospitalized for 22 days. I went from having 10 inches of my colon for 5 years to all of a sudden 75% infected and all of my medications stopped working. I was on prednisone, mesalimine and aprisio. My doctor had/has no idea why my colitis flared like it did and why the medications stopped working. He also tried remicade for my final medication option but that didn’t touch it either. I finally was brought with my only option which was surgery and believe me I cried and cried, I am 22 years old and the thought of surgery scared me so bad but let me tell you, it’s not as bad as you think and I feel a million times better. No more worrying where bathrooms are. I am still healing from surgery I just got it 2 weeks ago but I can already tell a huge difference. I really hope medications keep yours under control and you won’t need surgery but if that’s what it comes down to, please don’t be scared and if you have any questions at all about the procedure or how the pouch is feel free. Getting this surgery being only 22 years old definitely opened my eyes about life in general. I hope things get better for you and keeps all of us updated. You’re also so lucky to have such great support from your wife! Having the support around you really helps. Good luck with everything and I agree with you about your hesitations about humira. I had never taken it but I have also read about it and all these medications are very iffy the more serious UC gets. Good luck to everything.

    • MattyOctober 26, 2013 at 2:52 pm #

      Hi Shannon I’m about to get the j pouch done very soon i have a few questions I you wouldn’t mind talking about it?

    • Dennis P
      Dennis PorebskiDecember 31, 2013 at 1:25 pm #

      Hey Shannon! I’m glad to hear that you are pleased (in hindsight) with your decision to go through with surgery. My question is, now with a J-pouch, are you able to eat normally like you used to before being diagnosed with UC? Are there any foods that are off limits for you? Do you feel any different now knowing that you don’t have your colon? I know that’s a weird question but is your life normal?

  7. NandaOctober 26, 2013 at 8:12 am #

    hey dude,

    I am so glad you posted this, i was diagnosed with UC in 2008 whilst doing my A level exams i am now 22 and working as a physiotherapist in a hospital. I totally understand how hard it is to do your job when you have to rush to the loo every 10 minutes. i am struggling big time at work, it takes me 1.5hrs to drive to work and i do exactly the same thing as you, 3/5 days i also have to stop on the side of the road and do what you do! your wife is amazing to be so supportive, you are so lucky. You are totally right, this disease robs you of yor life and it has stopped me doing so many things too, i am worried about my career and will probably have to find myself a boring office job so i can be close to a toilet and not relied on too much (like in the middle of treating a patient that i can’t leave alone, needing to go to the toilet is so embarrassing!!).
    I am also on asacol at the moment but the damn things pass right through me and i can see the whole tablet in the toilet bowl which means its not working! I’m not sure what my next step will be!

    I just wana say that you are not alone, you have the right attitude, don’t give up on your dreams and i hope everything works out for you!

    • Lauren BOctober 26, 2013 at 9:22 am #

      Haha dude I’m like the women version of you! You don’t know how many times I’ll be in the middle of working an have that feeling of “oh crap (no pun intended) I gots to go..” And now being able to. Being young and dealing with this sucks badly! Guess we’ll grow up stronger then normal people out age! Good luck as you go through this journey :)

  8. Lauren BOctober 26, 2013 at 9:17 am #

    Ok first of all I have to say I love your attitude and humor about this disease! Using humor definitely helps me get through the days (I mean heck we’re goig to be dealing with this disease forever.. Might as well laugh a little).

    So I started humira and have had a really good experience with it. I do have some urgent bowl movements here and there (once or twice a week). But my energy levels are back and I am feeling a lot better! My insurance is covering it as of now (I feel very blessed about that). I do know that humira had a program that will help with cost (from what my GI Dr. Told me). I suggest getting on it and off of prednisone! Prednisone is so so bad for you!
    Good luck as you go through this bro!

    Ps. Lucky you for finding an awesome women who will go through this journey with you!! What a blessing :)

    • Dennis P
      Dennis PorebskiDecember 31, 2013 at 1:30 pm #

      Hey Lauren B! Thanks for sharing!I’ve read all of the scary side-effects of Humira and even the potential for developing lymphoma and other cancers as well as TB or fungal infections during use. I REALLY don’t like the sound of that. It also has the potential of increasing my risk of contracting these infections or developing malignant cancers since I am a young adult male. Great. I know you’re a female and therefore wouldn’t fall into the aforementioned category, but I was wondering if you knew the potential side effects before you started Humira and if you did, whether or not that made you consider and re-consider starting the medication, weighing the risks versus the benefits? I would greatly appreciate your thoughts/opinions as I am in the stage of getting back to my doctor about my decision to either start Humira…or do nothing at this point, which he obviously frowns upon and is not in favor of as UC is a chronic condition that doesn’t get better on its own.

  9. mjOctober 26, 2013 at 12:21 pm #

    Hey Dennis,

    I can totally relate, I had the worst urgency/incontinence this year, worst than I have ever had in a long time. I’ve had UC for about 13 years now, since I was 17. Even car trips on the way home, if something held up traffic it meant I wouldn’t reach the bathroom in time. Or if I was walking to work, I would have to run into the local hospital bathroom (it was the closest bathroom on my way) and clean myself up, before going home and then going back to work again! Impossible to live life like that.

    I was sort of ignoring my flare for months, letting myself get overworked, overstressed and not watching my diet. Ended up having a hospital stay from exhaustion/dehydration and got put back on Prednisone 50mg (which did nothing for 2 weeks) and Pentasa. I don’t have any experience with Humira so I can’t help you there unfortunately.

    The key thing that’s changed my life is I reduced all my stress (cut down on my extra workloads) and started the SCD diet. I’ve been on this since my hospital stay, and it’s like I’m free again, seriously. I did a lot of reading online, I got Adam’s amazing ebook and bought Breaking the Vicious cycle, and thought I had nothing left to lose, give the diet a go.

    Now I have one BM at night/early am, and then usually nothing all day, maybe once again at night (this compared to 6 times one night and like 5 times during the day minimum). I don’t have to constantly moniter my pain levels, where the nearest bathroom is, how this food is going to feel once I eat it… it’s de-stressed both my mind and my bowel.

    My GI told me diet doesn’t make a difference either, but when he saw how well I was doing on SCD he said “well it doesn’t hurt to keep going on it”. Diet makes a HUGE difference with UC, don’t listen to anyone that says otherwise! hehe.

    I also take probiotics everyday, 3 times a day and am going to re-introduce L-Glutamine soon. Staying off all other supplements for now (and I used to take heaps of different things, including protein powders for gym).

    All the best with your treatments, I hope you find something that works for you.

  10. MattyOctober 26, 2013 at 2:49 pm #

    Hi nice to read your post my situation is very similar to Jason above I haven’t lived with colitis for very long but it did come on aggressively and I had my colon perforate in 2 places and had to get sugary Jason is right sugary can be tough but the end result is worth it if u don’t want to live with it I’d consider surgery as well but that’s up to u I wish u all the best and hope you get better

  11. PeterNZOctober 26, 2013 at 6:04 pm #

    Dennis my precious,
    You could talk to Sheldon about a little course of Methotrexate….
    Colitis doesn’t ruin your life. It just is life mate.

  12. umaOctober 26, 2013 at 6:25 pm #

    You MUST try probiotics Garden of life Primal Defense has put my UC of 22 years in remission. It is three years now and i do not have a symptom. And my advice is not to touch wine or beer as they are a strict no no for UC ers. Just try these you have nothing to loose. You will be on the road to recovery .

  13. kOctober 27, 2013 at 5:16 pm #

    Dennis, I so agree that ulcerative colitis robs you of your life. I am forever grateful for the surgery that gave me back a near-normal life. k

  14. CorboOctober 28, 2013 at 12:54 am #

    Dennis,
    I feel your pain mate and I can draw a lot of similarities between your story and my own. I’m only 21 and I was diagnosed in April 2012 in the U.S. while at college where I was studying and playing baseball. I had been in a constant flare for almost 4 months. I returned home to Australia for the (US) Summer for treatment where I was prescribed medication before I returned to college in August 2012. Ultimately all the medication did was allow me to get out of bed each morning but didn’t help my condition at all. I had to withdraw from college in March 2013 had the two part surgery (proctocolectomy + pouch construction + ileostomy and ileostomy reversal) on July 25th and October 9th. Both my surgeries went well despite me having some complications afterwards that extended my stays in hospital but nothing permanent. I’m currently recovering from my reversal but I feel better than I have for almost 2 years! I’m currently writing my story now and plan on submitting it to ihaveuc shortly.
    Also, it’s great you have a wonderful wife who is making this journey with you. I’m not married but have a fantastic family and friend support base that has helped me immensely.
    I hope all goes well mate, goodluck! Any questions – hit me up.

    • Dennis P
      Dennis PorebskiDecember 31, 2013 at 1:43 pm #

      Hey there Corbo! Thanks for sharing your story! I was wondering if you have any limitations on the foods you can eat after having surgery? Are you eating normally? Can you have all of your favorite foods and drinks or are some things off limits? Let me know please. Thanks!

      • CorboJanuary 2, 2014 at 10:41 pm #

        No mate I didn’t have any limitations. However, due to a few unfortunate complications (abscess, adhesions) I ended up having another surgery in November 2013 and I have my ileostomy back. Although this time it’s functioning a lot better and I’m living a normal life and don’t notice the bag until I have to empty it. My reversal is scheduled for Feb 5th.
        As for the foods, I could eat anything I wanted again without any issues after my reversal. However, when you have a stoma you have to avoid foods that don’t digest easily (corn, some vegetable and fruit skins, nuts, etc) to avoid a potential blockage.
        Hope that helps! Cheers.

  15. JohnnyFCOctober 28, 2013 at 4:02 am #

    Hi Dennis,

    i was diagnosed in August 2008 with UC as a 24 Year old. I am not going to sit here and say that it doesn’t suck because it does. Life would be more simple and less restrictive without UC. Just try not to think about the things you CAN do instead of the things you can’t. be prepared, which it sounds like you are doing and just try to stay as positive as possible. there is a lot to live for.

    I work full time full time at a Car dealership, i recently got engaged and have a home loan. sometimes i thing how am i gong to get through this all with UC, but i find a way.

    Just stay positive.

    Johnny
    Adelaide, Australia.

    St

  16. Mark from Boston
    MarkOctober 28, 2013 at 11:26 am #

    Hey Dennis,

    I completely agree with you – the urgency of BMs is definitely the worst part of UC. I’m 31 and was diagnosed just over a year ago, never having had any bowel issues whatsoever for 30 years of existence. To go from not having a single symptom my entire life to dealing with full on UC flare literally over the course of a few days was incredibly frustrating. I have tried pretty much every medication out there so far, with the exception of Humira and Remicade, which are kind of the last ditch options out there from a medication perspective. None of them (even Prednisone) brought me into remission. Each medication brought me a little relief from my symptoms, but none of them brought me remission.

    I have been experimenting with fecal transplants, with the help of my incredibly supportive and awesome wife, who is a registered nurse. We’ve done a significant amount of research on it and from what we have read up, and from personal experience, I can tell you that this is ABSOLUTELY one thing that you must try before going to the biologic meds. It’s basically free, outside of purchasing the equipment up front, and it put me into remission within just a few days. Gross? yes, but the results are undeniable. I strongly recommend looking into this before you go down the Humira route, there’s nothing to lose in trying it out and I can personally tell you that it has definitely worked for many UC’ers out there.

    • Dennis P
      Dennis PorebskiDecember 31, 2013 at 1:48 pm #

      Hey Mark! Thanks for sharing your story! I’ve heard of fecal transplants, but only for eradicating C diff from the lower intestines, not for treating UC. Did you have C diff or just UC? And did you have your doctor do the transplant or your wife? lol. What kind of equipment is necessary and doesn’t the fecal material need to be from a close relative or something like that? What a weird topic haha but hey, I don’t care. I want to get rid of this disease.

  17. SherOctober 28, 2013 at 8:25 pm #

    Dennis! Wow it’s funny to talk about crapping your pants online w/ complete strangers, but only here can soooo many relate, what I used to do in a horrible flair when even a 20 min car ride felt like an hour, I’d keep those plastic disposable glad ware containers from the dollar store under my seat in my car, if the urgency was so bad id pull over, try find a somewhat secluded area, put the container on my seat, put my jacket over my lap n go in the container, use a wet wipe, put the lid on and throw away in the nearest dumpster! Always worked and never had to change nasty clothes once I got to work or home! Luckily no one ever noticed a thing.
    I’ve had this uc thing for about 12 years and yes it does suck, I tried every med you name it! Most of them worked for a while… they all seemed like forever to kick in, but the benefits always wore off! I was throwing money down the toilet (he he)! Finally I said if I’m gonna feel like crap and be flairing on alllll these damn meds I might as well feel like crap and flair on no meds and not deal w/ all the other side effects, ( kidney infections, bruising, nausea, etc) and so I did it, I quit! I started doing Vit E enemas taking vitamins and feeling better, not perfect, but better. When I changed up my diet and went gluten free about 4-6 months later I felt normal for the first time in 6 years! That lasted for a year until recently.. Damn weather change! But I’m not giving up, I’m gonna keep on pressing on, and I heard from someone on here before, do the best you can everyday, if your best is lying on the couch or barely getting out of bed… Don’t feel guilty, we get tired, we need to conserve our energy, let it be what it is. I spent so much time trying to do so much to feel “normal”, but it just wore and stressed me, now I know when I’m not feeling well to relax, take it step by step and not over do! I wish you and everyone else the best success and remember everyone goes through something, this just happens to be our something, it’ll make us stronger!

  18. Polly
    PollyNovember 1, 2013 at 1:30 pm #

    Hey Dennis,

    I echo Allison’s comments above!

    Thanks for sharing your story… Many parts of your story overlap with mine… It hit me especially hard a few times… I was fighting back tears and laughing at the same time with your comment about Netflix! Thank you Lord for understanding spouses that do not complain about all the times we run to the restroom and have to pause the Netflix. Hahahahahaha…

    Your body is in such an inflamed state right now… you need to get the inflammation down… and unfortunately it seems that Western medicine doctors are not trained in that area… you could try a nautropath or a Functional Medicine physician… or an herbalist… I would recommend getting gluten out of your diet right away! You can cut gluten, corn, soy, MSG, processed foods, etc… I would start taking some probiotics (and lots and lots of them), some Vitamin D and some turmeric to get your inflammation down.

    Breaking the Vicious Cycle is a great read, Wheat Belly is another one… there are tons of them! I suggest treating yourself to the Almond Flour Cookbook… oh, and of course Adam’s book “Feeling Crappy to Feeling Happy” is a wonderful read!!!

    I’m so sorry for what you’re going through, but this experience that you’re going through is going to make you a fabulous physician.

    Hugs, it will get better!
    Polly

  19. kJanuary 3, 2014 at 8:33 am #

    Hi Dennis,
    I had an emergency ileostomy three days after I was diagnosed with uc in 1975 – 39 years ago now. (J pouches hadn’t been developed yet.) The ileostomy gave me my life back. I still consider it a miracle.

    In several of your December 31 posts you ask j pouchers about their diets and any restrictions. I can only respond regarding my ileostomy, but I eat 99% of what I want. Am only careful with very fibrous things, such as raw green beans, which I eat sparingly and chew well.

    In now rereading your account (I first read it when you posted it in October), I must say you are a much braver guy than I am. I wouldn’t have had the physical or emotional courage to face what you have faced over the last 6 years. Here’s hoping 2014 is a very good year for you.
    k

Leave a Reply