UPDATE: Oh Ulcerative Colitis…How I Underestimated You

If you haven’t already, please read first the previous story, “Oh Ulcerative Colitis…How I Underestimated You”

 

Hey guys…well you all couldn’t have been more right! Just to be clear, my wife is fantastic, and I am notorious for ignoring health problems. Plus, I don’t think either of us understood the severity of the situation. So to reiterate, I wouldn’t have made it to where I am right now without her, and when I go back and read this it makes me feel terrible for painting her in that light.

So, The morning after I sent my story, I had to pull over twice on the way to work to rest because I didn’t have enough energy to stay awake at the wheel. Once I finally made it to the office, I spent about 30 minutes in the bathroom and finally sat down at my desk. I felt like I was on my deathbed Tuesday….but I was somehow feeling much worse. After trying to sleep it off for an hour I finally broke down and asked my sister to come pick me up and take me to the ER. My doctor recommended a hospital, and I was getting an IV less than two hours after the phone call. I was severely dehydrated (despite all the freaking water I tried to choke down!) and slightly anemic.after a few hours in the ER, I was admitted into the hospital.

I have been at the hospital since last Wednesday, with the antibiotics, steroids, fluids, and rest I have gotten some slight relief from the volume and frequency of bowel movements. I began with Morphine, Cipro, Flagyl, and saline in the IV along with jello and water as I could stomach it. After a few days went by, I was able to reduce my bowel movements to 15ish times a day. When having these, there was less pain and significantly less blood. Taking this as a good sign…I decided to do some soup broth Friday night. Oooooh weeee was that a reality check! I was jumping out of bed with no notice again and fell right back into my old symptoms. At this point, my days consisted of a pain level 6 or 7 (as good as it gets) until the pain medicine began to lose it’s effect. Usually an hour or two before the next dose. I am doing my best to hold off bowel movements until just before another dose of pain medicine so I can use the relief to rest. The vast majority of my suffering is from SEVERE abdominal pain which is greatly exascerbated by changing positions (getting up and laying back down). Since we have seen such little improvement, the doctors have changed up my steroids and antibiotics a number of times. I received a CAT scan on Wednesday and Saturday to verify that no abscesses had developed in my abdomen (which they haven’t). The diagnosis stands as a severe flare-up, horrific abdomen pain, and increasing distension in my stomach.

I had a consult with a surgeon this morning to discuss a possible ileostomy. He was very clear about not wanting to push it until we have explored all other options, but I was ready to jump on the opportunity given the level of suck this week has contained. Right now, the GI has increased my steroids as a last ditch effort to get things under control. Here I am, 330 AM on the toilet wincing in pain as I count down the seconds until my next round of pain meds.

My question now is this:

I have done plenty of research on the pros and cons of surgery, and told myself that I would be all for it if it were suggested. BUT, my dad and stepmom (who is also a doctor) were flabbergasted that I would even consider it without receiving a second opinion. I know this is my decision, but my stepmother is a very smart woman, and I can’t help but wonder if she has a point…

I will definitely be talking with my GI again, including anyone else I can think of that might be able to contribute. But what about other UC’ers? Do you think she might not just understand ALL of the benefits of surgery? Do I need to reitirate the impact my age has on the feasibility of the procedure? How can I approach this without feeling like I’m snubbing anyone?

Thanks again for everything. This means the world to me.