Crohn's Awareness Week: Day 2 Medications #crohns #ibd #crohnsawarenessweek

Even when I convinced myself I had IBD (Irritable Bowel Disease) bathrooms were always my place of refuge.  At 32 I suffered horrendous bouts of illness that I won't even begin to describe nor did I tell my doctors the truth as to what I was going through. They mentioned gastroenterology and I ran out the door. Back then the only answer was predisone or surgery. I was lucky enough to wait out some pretty bad flares. I was really lucky not to have killed myself through negligence.

I am not saying that what I did was right, I'm just saying I am an extremely willful person.  It was more important to me to have panic attacks due to stress than to admit they were related to my inability to digest food. Over the years, I have developed an ability to put pain out of my mind as long as I am distracted. It is at night that the spector of disease rises up to block peaceful sleep from my mind.  And it is sleep I crave most of all. I work hard at telling the truth about this disease because my inclination is to deny deny deny. That does no one any good, least of all myself. It is the one reason I committed to writing blogs about my journey. I want to make sure I never forget what can happen again. 

I was first diagnosed with Ulcerative Colitis. UC strikes the colon but the ulcers aren't deep into the intestional wall. With Crohn's disease the ulcers are much deeper and can even perforate the wall. UC stays in your colon while Crohn's strikes anywhere from your mouth to your, well you know what. I was happy with a UC diagnosis as removing the colon cures the disease. Not so with Crohn's disease. It happily skips around the digestive track leaving little (and big) ulcers that hurt and bleed. 

Right now, Crohn's is behaving. While it is active, it is only mildly so. Mildly being some pain, sometimes bad sometimes not, some bleeding, sometimes a lot sometimes none at all. And I stay away from all foods that do not agree with me like anything acidic. My diet is strict. I do not touch processed foods, have done away with all sugar and rely only on meat and vegetables with small dashes of fruit, seeds, and nuts. So far it is working. I have been on many medications and will list them along with my reactions. Which are sometimes very funny. 

Prednisone 

I love and hate prednison. I went searching for a picture of myself that I took a few years back when my cheeks looked like chipmunk storage bins. I can't find it, but trust me when I tell you your face gets round, you eat like crazy, and it becomes hard to sleep. On the plus side it calms the flare  and another plus is a superbly clean house. Steroids are never fun, but they work. Not only does prednisone kick ass on Crohn's but it also makes the arthritis pain go away.  Unfortunately, you cannot stay on it for long. 

Lialda

For some Lialda is a great first responder for Crohn's disease. It works by decreasing swelling in the intestine. It does come with side effects which were for me, intolerable. I was very nauseaous and vomited frequently. Mesalamine can worsen the disease and that it did as well. My belly swelled, I developed horrible cramping that was much like labor and I developed a fever--just the opposite of what is suppose to happen. A few months ago my GI wanted me to try another 5-ASA drug. I tried it for 2 weeks and when the pain became bad I went back to his office  and politely declined to continue on with the medication. I know I frustrate my GI but it's not like it's my fault. I seem to be allergic to everything under the sun.

Imuran

Imuran is most often used to prevent rejection of a kidney transplant. It lowers your body's immune system. It is also used to treat UC and Crohn's. Almost immediately after taking my first pill, my fever went and stayed at 100 degrees. For months I was so ill. I called the office, left messages about this chronic fever, until one day, my fever spiked to 103. I called my husband to pick me up at work and take me to the hospital. They addmitted me immediately for sepsis and one hell of a case of cellulitis that came about from an absess.  I spent a week in the hospital and was told to check in with my GI in about a week. He said to stay on my meds, which I did, but was called a month later to get off the Imuran as my liver enzymes had increased dramatically.

Humira

Humira is a biologic used to treat many things like Uvea of the Eye, Crohn's, UC, Psoriasis, RA, and many more immunological issues. As I look back, no matter the side effects, it really was a better drug than anything I've taken. Since I was taking Imuran and Humira together I think I put many of the side effects of Imuran on Humira's shoulders. Plus, it was early on in the course of my worst flare ever and I was just plain scared to death of the 'big boy' medications. I was used to toughing it out except this time I couldn't. 

Remicade

Remicade is delivered through an IV and was the first drug to put Crohn's into remission. Unfortunately, I was allergic to it too. I developed eczema and psoriasis. In addition, my skin turned dry and brittle. One day I woke up to eczema up and down both backsides of my legs. After a quick injection of Kenelog the rash cleared up but my skin issues remained. Then I developed psoriasis in my fingers which led to chronic infections. At one point, six fingers were infected but that is down to just one. I am waiting on another referral to another dermatologist to try and get it fixed. I have been off Remicade for one year and am still waiting for the skin issues to clear up. 

I do a lot of research on my medications and just a few years ago I was told by my doctor that no way was Remicade linked to skin issues like psoriasis and eczema. Now when you do a Google search the side effect is everywhere even to the point of recall and lawsuits. I wish I had stopped Remicade sooner. It would be nice to have usable fingers again that didn't hurt every single time you bump them against something. Plus the peeling skin is pretty ugly and the staff infection comes and goes then comes again. 

As you can see the nail is completely deformed and the infection literally flares and retreats. Right now it is retreating but it will be just a few weeks before it comes back if history holds true. When coming back the entire joint to the top of the finger swells red and throbs. I soak and do all the stuff you are suppose to do and it gets better and then it comes back. I have been on every antibiotic there is and nothing touches it. So until I see the new specialist I live with it. 

One caution to Remicade users. Treat your skin like gold. 

Tomorrow I'll talk about the emotional ups and downs of Crohn's disease.