My Crohn’s Story…

My story…

In the summer of 1995, I began to notice blood in my stool.

At first doctors believed I had some type of parasite but that theory was quickly laid to rest following the initial round of tests. I was put on the docket to see a gastroentrologist and I was scared. After extensive testing via a colonoscopy and endoscopy and a pint of blood work, they felt what I had was something called Ulcerative Colitis, however, there was little known about UC. In a nutshell, the lining of my colon was full of bleeding, painful ulcers. At that time the only sure fire treatment was a steroid called prednisone. It was awful. I quickly gained 30 pounds, creating wounds and scars in my skin which can be compared to the scars from a fire victim. I’m fairly immune but to this day, I get still get stares while at the pool. Emotionally, I was a hot mess. It was hard to talk about – very few people had even heard of Ulcerative Colitis and its cousin Crohn’s Disease. I was a college student who just wanted to be a college student. After an extended period of time on prednisone, I began to experience swelling in my knees and horrible back pain. I was scanned and found to have osteopenia at age 20. At that point prednisone was no longer an option for treatment of the ulceration in my colon. By this time, the Mayo Clinic was calling my name. I was the first of 100 patients in a trial for Remicade infusions. As the infusions began, the doctors were decreasing the prednisone in increments until August of 1997 when I was finally free. And, then my body went haywire. Most prominent, my face was covered in painful, horrible looking cysts – some with yellow and green drainage. Biopsies at the Mayo Clinic came back as unknown to what was causing the cysts and other symptoms. All the while, I kept wondering why all of this was happening.

Fast forward through fresh fruit diets, meatless diets, an all processed food diet (to aid in the digestion of food to move through the colon with more ease), fasting, cleansing, liquid diets, natural remedies such as slippery elm, fish oil, barley, drinking aloe vera, going gluten free, then dairy free. Heck, I even tried a potato diet. If there was a chance I could get relief, I tried it. There were chemotherapy drugs, sulfur drugs with migraines as a side-affect, CAT scans, MRIs, a surgery to remove my gall bladder, blood work, kidney infections, dilation to my urinary tract (later to be discovered to be covered in endometriosis), chiropractors, reflexology, yoga, weight-loss, weight-gain, diarrhea, constipation, c-diff and a surgery to remove endometreosis on my bladder, uterus and colon.

I was diagnosed first with Ulcerative Colitis. Several years later, the diagnosis was changed to Crohn’s disease. Today, its believed that at some point during the last 20 years, I’ve presented with both.

There has been very little that has actually helped my symptoms. Or, if it did help, awful side-affects were present. Through it all, there have been some wonderful times. My husband has been my rock. Even before we were married he had helped hold my bed pan during a hospital stay. That, my friends, is love.

Over the course of seven years, I was extremely fortunate to have three beautiful children. Although each pregnancy was filled with challenges, I can’t imagine life without them and I would do it again. After my youngest son was born in 2008, I needed a blood transfusion. At that point, my hemoglobin levels were chronically low. During the c-section which delivered my son, I lost a large amount of blood. Receiving blood was a necessity. I had been too low on iron for too long and the doctors began urging me to try something new. It was an injection. An injection which came with a booklet filled with warnings about cancer. It was however touted as a miracle drug that was helping many others with severe Crohn’s. Aside from the possible side-affects which tend to haunt me during treatments, I couldn’t even imagine receiving a shot. And, doing it at home. At the urging of family members, I chose not to begin the injections and went back to trying crazy diets.

In March of 2013,  I hit rock bottom. I couldn’t take care of myself, let alone three kids and a husband. My house was a mess. We were nearly three months past Christmas yet my Christmas village was still out. I spent my days in the bathroom, bathtub or bed. The crazy part is that I was in total denial that my health was at a very dangerous point. I ended up in the hospital for almost a week. Following that visit I began to see a nurse practitioner who worked with my doctor. It took her six months but in November of 2013, she began injecting me with Humira. She told me that in six months I’d be giving myself the injections. I laughed.

Despite starting the injections, symptoms including the bleeding continued. I hadn’t even considered the fact that the injections may not work. It was a huge disappointment. Considering the fact that the inflammation hadn’t occurred overnight, we waited a few more months.

In May I had to travel for work. My husband had been giving me the injections up to this point. The night I was suppose to have my injection, life was crazy and we forgot. The next day we had planned on giving it just before I left town. We forgot. Before heading out I wanted to watch part of my son’s baseball game. I decided we could do the injection, which must be refrigerated, at the ball field so I packed it in the cooler with ice packs and headed to the game. I was an hour into my trip when I realized we had forgotten AGAIN. I had no choice but give myself the injection. So, sitting in a rest area bathroom stall, I closed my eyes, pinched my thigh, hit the button and counted to 15. To my surprise, it hurt less! Since that day, I’ve never looked back and have injected myself every time. If you are considering Humira but can’t imagine giving it to yourself, I’m here to tell you that you can do it!

By August, there was still continued bleeding. In order to determine which treatments to explore next, my nurse practitioner wanted to know exactly where we were at. In September 2014, I had a repeat colonoscopy at almost exactly one year from my last. The results were shocking. Although there were parts that weren’t quite healed, the sigmoid colon was ‘beautiful.’ That’s exactly what the doctor wrote in my report. The reason I was still experiencing bleeding was because the very end of my colon still had inflammation. It had taken 10 months, but finally, progress had been made. As long as I’m having regular outputs, today I have very little bleeding.

To be continued….

updated 1/31/15

 

The information below was written in March of 2011….

 

I realize the word “hypochondriac” might be going through your mind right now.  However, all of these topics work hand-in-hand.  In 1995, at the young age of 19, my digestive system first began to fail me.  The first few years was full of tests, new doctors, trips to the Mayo Clinic and unanswered questions.  Irritable bowel disease, not to be confused with Irritable bowel syndrome, can be allusive with various combinations of symptoms.  In my case, it’s chronic bleeding, mostly in the last 32 cm of my sigmoid and pain throughout my abdomen.  However, through the years my symptoms have changed, stopping doctors in their path.  What was originally thought to be Ulcerative Colitis was then diagnosed as Crohn’s disease and then again as UC.  For the first several years I dealt with diarrhea and for the last 7 or 8 years with chronic constipation.  The sigmoid colon is where a large majority of nutrients and fluids is absorbed.  When it is not working properly absorption rates decrease thus decreasing output rates.

Today, fifteen years later, we know that a person can present with both diseases, as in my case.  As times have changed so has the number of people affected by Crohn’s and UC and more is now known.  Both ailments display a wide range of symptoms making treatment somewhat of a guessing game.

In the midst of my digestive problems I began having repetitive kidney infections.  Eventually my doctor decided I needed to see a specialists who found scar tissue blocking my urinary tract.  This was taking care of by dilating the urinary tract three separate times.  This all occurred after the birth of our first son.  During an exploratory surgery of my female packaging they found I had extensive endometriosis around my uterus, bladder, urinary tract (which explained the scar tissue) and sigmoid colon.

So that takes care of the first three ailments.  The anemia, I believe, is tied into both the Crohn’s/UC bleeding and excessive bleeding from my uterus and hemorrhagic cysts which are constantly growing in my ovaries (these are cysts filled with blood).  I truly believe that everything is and has been working together.

I hope by sharing my experiences I can help others who are faced with similar challenges.  In turn, I hope that you will also find this my blog as a safe, comfortable place to share your own experiences.  The goal is providing everyone with a collaboration of information.