Friday, July 26, 2013

I'm the Lucky One - My Struggle with Steven Johnson Syndrome

In my last post, I wrote about my perianal abscess. I had been given an antibiotic, Sulfameth, to help with my infected abscess. About a week later, I started getting real sick. I was having an adverse reaction to my antibiotic, which was called Steven Johnson Syndrome (SJS).

SJS is a rare, life-threatening condition that is brought on by a severe reaction to a medication. The family of drugs that caused my reaction are sulfa dugs. Basically, what can happen to the body is the human skins starts literally burning from the inside out, and it can spread rapidly. It causes flu-like symptoms, and a reddish, purple rash that can spread all over your body including the eyes and mouth. If it spreads to the eyes, patients can go blind. Many patients are admitted and treated in the burn unit in the ICU due to the outer layer of skin falling off.

Thankfully (and I am so so thankful), we caught mine early and mine did not progress as far as it could have. I feel by God's grace my life and future were spared. For the first time in my life, I do not feel like a victim of an illness but so blessed and protected from what could have been. 

On Monday (day 6 of taking the antibiotic), I woke up with an intense headache that continued all day long. I began just not feeling well that day. The next morning, I woke up around 5 am feeling very nauseated, and by 6 am I was vomiting bile and blood. A couple hours later, I noticed large purple and reddish welts all over my face. It looked like blood splattered and stained on my skin. At that point, I knew something was wrong. 

My husband took me to an emergency doctor's appointment with my primary care physician. By that point, my lips and tongue were swollen and numb feeling. She diagnosed me with SJS. This was the first time I had heard of this syndrome. She told me to tell everyone I know and carry in my wallet that I have a deathly reaction to the family of sulfa drugs. 

From my research, I have learned that most people take the full course of the antibiotic and do not start showing symptoms till days later. At that point it is irreversible and too late. This is why I feel lucky. I was able to catch it early, stop taking the drug and have time to flush it out of my system this week. 

Good news is that within 48 hours the rash was nearly gone. I thought I was doing better till a fever of 101.6 struck me thursday evening and continued off and on till tonight (Friday) when it finally broke I think for good. Isaac said a fever is good, because that means my body is fighting the rest of the infection. Having a fever with no other illness like the flu is strange...but still just as miserable. 

I'm sitting in my bed typing this feeling much better, but still very weak and tired. I hope I am on the mend. All I can think is thank you Jesus for saving me. 

I cried one day thinking about what I was spared from. I have been through a lot with my health problems, but this really made me realize how much worse it could be. And I feel so blessed for the life I have. 

All thanks goes to Jesus my loving Father. I do not know why he spares some and not others. But I do know he has a purpose for all of us. And I know he never turns His back on those who love Him. 


Friday, July 19, 2013

Crohns is a Pain in the Abscess

This week, my Gastrointestinal doctor discovered an infected perianal abscess. I scheduled the appointment due to some groin pain I was experiencing. I know abscesses are common for patients who have Crohn's disease due to lowered immune systems. Therefore, this information did not come as a surprise. 


"An anal abscess is a painful condition in which a collection of pus develops near the anus. Most anal abscesses are a result of infection from small anal glands.
The most common type of abscess is a perianal abscess. This often appears as a painful boil-like swelling near the anus. It may be red in color and warm to the touch. Anal abscesses located in deeper tissue are less common and may be less visible (www.webmd.com)."
My GI decided to send me to a general surgeon that day to try and have it drained. 
I visited with the general surgeon. He gave me two options. He could numb the area and drain it in the office. He would have to leave the wound open and pack it with gauze so it would heal from the inside out for a month or so. That sounded awful. 
Or he said he could send me home with antibiotics and see if it would drain on its own. Once the infection heals and is less inflamed, I can come back in September to have the surrounding tissue removed and stitch it back up. This is the route my husband and I chose. 
For the next few days, I was in quite a bit of pain. After calling my primary care physician for advise, he told me to put a heating pad on the area so that is might drain. Heat causes the puss to rise and drain. This advise helped and the pain decreased significantly. I can sit and actually function better now.
"Abscesses are caused by obstruction of oil (sebaceous) glands or sweat glands, inflammation of hair follicles, or  minor breaks and punctures of the skin. Germs get under the skin or into these glands, which causes an inflammatory response as your body's defenses try to kill these germs (www.webmd.com)."
Abscesses  can appear anywhere on your body, but they are most common in the groin area, armpits, on your face and near your teeth. People with lowered immune systems are most susceptible. 
I hope this is helpful for those of you who may discover a strange sore lump. Don't ignore it, go see a doctor. It must be taken care of. 


Sunday, July 14, 2013

Apologies for My Summer Obsession

Hey everyone!

I apologize for my blogger silence for a little bit. I have to admit to you all.....I have recently been somewhat obsessed with watching Pretty Little Liars on Netflix. In less than a month, I am almost done with season 3. Honestly, I would never let me own teenage daughter (if I had one) watch this show. But I can't stop watching it. So much drama, so many dirty secrets and a murder mystery. What's not to love?

haha I am watching it now as I write this blog. So silly.

A couple weeks ago, I went to see my GI doctor for a check up. I was looking forward to this visit. Since March, I had been trying to wean off of Pentasa, an anti-inflammatory I have been on since my diagnoses, and my body was not responding well to the weaning process. I was so determined to get off that drug that I just kept trying to wean for 3 months even though it was causing me to flare and get sick. This drug is a horsepill that I have to take 8 times a day (!) and is my most expensive drug I pay for out of pocket.

Of course since I was flaring I since the start of the wean and I started having joint pain around that time too, we decided it was best for me to go back on the drug for good. My doctor said that my body must need Cimzia and Pentasa to keep my feeling good.

That proved to be correct when after a few days of being back on the drug, my stomach started feeling better almost immediately. Since then my stomach has been doing much better and the joint pain seems to be doing a little better. My left thumb joint still hurts though.

The only negative side effect from start back up with Pentasa is I have noticed my hair falling out when I take a shower. I remember this happening when I first started taking the drug, but it subsided after a few months. I started taking a hair, skin and nails vitamin a few days ago....I hope it stops soon. It's annoying and scary putting handfuls of hair in the trashcan.

Overall, I'm feeling better, and I really feel like this drug combination is that combo for me. At least I hope!

This weekend, I had a plethora of energy somehow. Usually I'm so tired...it's nice to have some energy. I mowed the front and back yard, bathed Izzy, did a few loads of laundry, vacumed and dusted the whole house, cleaned the kitchen and hung curtains while using a DeWalt for the first time! Such a productive weekend.  :)