I Hate My Guts, Trying Not to Hate My Life

Meet Sarah:

My name is Sarah and I am a 33-year-old Boston native who hates her guts. I was diagnosed with UC in October 2013, but my symptoms began right around the end of July/beginning of August. Blood was the first sign something was wrong, even before frequency, pain and fatigue. I went downhill pretty quickly. At my first colonoscopy they diagnosed Ulcerative Proctitis. Things might have been “manageable” except for the fact that my chemistry is quirky. I suffered a bad reaction to Mesalamine, worsening my symptoms, and was hospitalized. The doctors threw the book at UC and it laughed in their face. I’ve had two flex sigmoids with biopsies, confirming that the UP progressed to full-blown UC. I began Imuran and Remicade and am just now seeing signs of improvement. The silver lining in all of this is that the first colonoscopy revealed a polyp which turned out to be a pre-cancerous type (advanced colon cancer in 10 years if unchecked). My younger sister then had one, where they also found several of those polyps. Both of us are now annual colonoscopers for life, but we dodged a bullet. I suppose things do happen for a reason.

Some more about her:

Before UC I was a normal and active young woman! I’m a writer and aspiring author, a wine enthusiast, artist, traveler, wife and pet-parent to two French Bulldogs. I love the outdoors, namely hiking, snowshoeing and snorkeling, and I’m a pretty adventurous eater. (At least, I used to be.) While in Australia I tried Kangaroo and Crocodile, and I have to say, Croc is some of the best white meat I’ve ever eaten! (I wonder where that falls on the SC Diet?)

Symptoms she’s Dealing with:

Though my symptoms have lessened in severity, I’m still experiencing blood and mucus in my stool, frequent bowel movements, bloating and cramping, strange left-side pain (sharp or stabbing as opposed to typical cramps), severe fatigue, and occasional nausea and weakness. While on steroids and some of the other drugs I also experienced severe insomnia, mood swings, blurry vision, dizziness and a lot of agitation/restlessness, as well as odd muscle tremors.

I Hate My Guts, Trying Not to Hate My Life

My story opens with me noticing bloody stool on an otherwise ordinary, unremarkable summer day at work. It was right around the end of July, maybe August 1st, and I was too busy with my job and planning our vacation to pay it a great deal of attention. Of course it didn’t go away, and while on vacation I became concerned because I was beginning not to feel well. I was also starting to go more frequently. By mid-August I was alarmed enough to call the doctor, and healthcare being what it is, I wasn’t able to get an appointment until the 30th. I was given a Mesalamine enema and an endoscopy/colonoscopy was scheduled for October. Unfortunately my intestines weren’t going to wait that long. I deteriorated so quickly over the next week or so that they “rushed” my endoscopy/colonoscopy for September 10. There they found an esophageal yeast infection, pre-cancerous polyps and a pretty advanced case of Ulcerative Proctitis. They told me to continue the Mesalamine enemas and put me on Lialda. I was also told to go gluten-free, and to eliminate anything from my diet that caused bloating, cramping, etc. Basically, no fresh fruits and veggies, and low-to-no dairy. I felt like I couldn’t eat anything.

Food restrictions heralded the beginning of the end of my life as I knew it. My husband and I had begun to talk babies, but of course that was swept off the table. My social world revolves around food and wine and activity. I had to cancel a fall foliage hiking trip with friends, as well as a winery visit/wine tasting and an apple-picking excursion. Me on a mountain without a bathroom? HA! Even me being out in an orchard was out of the question. There was no point in joining my friends for the winery because it’s not like I could drink (and I am passionate about wine, so I was heartbroken). Even visiting farmer’s markets was out of the question. My entire Fall calendar was obliterated and my social life took a nose-dive. I was too tired to write, and some days even to read (and though I’m starting to feel better, many days this is still the case). Essentially, I’ve become an unwilling couch potato. My husband travels for work, but it’s not possible for me to join him now. I’m literally being left behind while everyone else moves on with their lives. I tried to find positive outlets, such as starting a blog about my Ulcerative Colitis experiences, but I can only liken those efforts to applying a Band-Aid to a gunshot wound. They didn’t cure the actual problem. It was (and still is) difficult to stay positive, especially when I’m physically not feeling well. I’m fortunate to have a fantastic husband and really supportive family and friends, otherwise I’m not sure how I would’ve made it this far.

Back to the saga. The Lialda lasted for all of 13 days before I was having terrible stomach pain, nausea, chills, pale or white stool, bad non-stop headaches, extreme fatigue (almost to the point of confusion/disorientation) and anything that I ate triggered a bathroom visit about twenty minutes later. I was hospitalized on a Monday and discharged on a Thursday afternoon. During that time I barely ate (my first meal, the BART diet, was on Wednesday night) and they realized Mesalamine was to blame, so gave me IV prednisone. When I was released I was given a hydrocortisone enema instead of the Mesalamine enema and was put on a low dose of oral prednisone. Everyone assured me that the proctitis would abate in a couple of weeks.

Well, it didn’t. It got worse. I was going 6-10+ times per day, filling the toilet with blood, falling asleep standing up, etc. They increased the dose of prednisone and added Sulfasalazine to the prescription mix. That was a horrible combination. I was still working full-time but sleeping about 2-3 cumulative hours per night. I was dizzy nearly all of the time, I had blurry vision, mood swings that left me in tears at the slightest provocation…I’d never felt so terrible. The proctitis/colitis was bad enough, but the side effects from the drugs pushed me over the edge. Because I’d responded so well to the IV prednisone they decided I should do five days straight of IV infusions. (This was over Columbus Day weekend). So I did. The blood stopped for a whole day and I thought, YES! It’s working. Alas, no. It came right back, stronger than ever. They took me off Sulfasalazine and put me on another type of Mesalamine drug. I was concerned, given my history wi th that drug, but they assured me the chemical composition of this would be kinder. It wasn’t. I noticed the headaches and left-side pain returning, and then out of nowhere my hands turned red and swelled and I got a rash. They took me off that immediately and scheduled my second flex sigmoid.

The second flex and the biopsies showed that the proctitis had progressed to full-blown Ulcerative Colitis and moved a good way up my colon. My doctor put me on Uceris and told me we were out of “normal” options and were now facing the big boys – immunosuppressants. She put me on Imuran and told me to review the material on Remicade and Humira and choose which one I wanted. After doing some in-depth research, talking to other Crohn’s and Colitis sufferers who’d done one or the other (or both), I chose Remicade. My doctor agreed, saying it had been around longer and more was known about it. I’ve just been weaned off the Uceris, I’m weaning off the enemas, and I completed my third dose of Remicade. My frequency is diminishing (3 times per day versus 10) and the quantity of blood is decreasing as well. With the steroids out of my system I’m sleeping nearly all the way through the night, which is helping a ton. I’m also gaining back the wei ght I lost (a mixed blessing) and reintroducing things like fresh veggies and fruits into my diet. I hope this continues and that I’m able to enter remission for the new year. Time will tell!

Medications / Treatments:

Meds that didn’t work for me: anything Mesalamine–enemas, Lialda, etc.; Sulfasalazine; Prednisone oral & IV); Uceris; Hydrocortisone enemas

Meds that seem to be working: Imuran; Remicade

written by Sarah A (from Beantown)

submitted in the colitis venting area