Posted 3/7/2012 8:55 PM (GMT 0)
Hi everyone!
My name is Theresa, I am 18 years old, and I live in MD.
One year ago, I began to experience frequent, bloody diarrhea. I saw a gastroenterologist who performed a flexible sigmoidoscopy and diagnosed me with proctitis, which was treated with 5-ASA suppositories.
I then went an entire year without incident - other than experiencing looser stool than normal, there was no increase in frequency or return of blood.
Then, in December 2011, I began to experience a worsening flare of ulcerative colitis. I took a Z-pac for bacterial chest congestion, and immediately began experiencing severe, bloody diarrhea, with painful cramping of the rectum. I went back to the gastroenterologist, who explained that it was most likely a spread of the proctitis, and he labeled my disease properly as ulcerative colitis.
We restarted the same 5-ASA suppository regimen, with no improvement. The cramping pain spread to my sigmoid colon. We then added oral 5-ASA to "attack the problem from both ends" - again with no improvement.
Finally, a lab culture revealed that I had a C. difficile infection. I started 10 days of Flagyl with the encouragement that treating the infection would surely set my ulcerative colitis back on the path toward remission. But it did not. The cramping pains continued to spread, up to my descending colon. Food became my worst enemy. I greatly feared eating - the more food I ate, the more pain I would experience.
Blood tests also revealed that the fluid and blood loss from my worsening diarrhea had caused me to become very anemic - with a Hematocrit count of 30% and an Iron count of 8. The true "irony" of this situation is that I had always joked about being anemic with my friends. For the past year, it seemed more and more fitting. I noticed myself increasingly becoming more tired, less able to participate in strenuous activities. Even walking long distances became a challenge. I attributed this to a general 'weakness' caused by my withdrawal from volleyball, although I always retained a healthy diet (and was on the slender side). If only I had given serious attention to my weakness, I may have been more aggressive when it came to my ulcerative colitis diagnosis and management.
I attempted to attend the University of Maryland, as I had last fall, but I found that I had to use the restroom before walking to class, before entering class, before leaving class - and sometimes, during the middle of class. Every urge to vacate was accompanied by severe pain. My sits on the toilet often lasted 5-10 minutes. Soon, every step was exhaustive. I missed 3 out of 4 of my first Differential Equations classes, because the prospect of facing the 20-minute walk down to the Armory was simply too much too bare. (Most students could make that walk in 10 minutes, but my fatigue and pain would not allow it.) I locked myself in my dorm-room, away from my good friends, and slept entire days away.
Two weeks after class started, I awoke Tuesday morning to severe chest pain. My roommate called 911 and I was escorted to Washington Adventist Hospital via ambulance. They took an EKG and chest CT to rule out life-threatening issues, and as the pain gradually lessened in intensity, they sent me home with painkillers, explaining that gas or temporary skeletal-muscular tightness could mimic the symptoms of a heart attack.
Once home, I found I could not return to school. I re-tested positive for C. diff, and began taking vancomycin instead. I spent one week on the couch, alternatively napping and experiencing worsening episode of pain. I saw a new gastroenterologist, who prescribed put me on high-dose prednisone. Still, I continued to get worse. Once it got to the point that I could not even keep down chicken noodle soup, I opted to go to the hospital.
In mid-February, I was permanently admitted to Howard County General Hospital. I spent 10 days there, where my gastroenterologist attempted to control my disease using more and more potent medications. My C. difficile infection did turn negative upon completion of the vancomycin, but that had never been my primary problem; the ulcerative colitis was.
After a colonoscopy showed the severity of my disease (the gastroenterologist did IV prednisone and IV cyclosporine beget no improvement - indeed, 5 days after my hospitalization I experienced a bowel movement so painful that it left me crying, gasping for breath, and unable to move from the toilet... I had to be carried to bed to be given 1mg of IV narcotic (I refused the full 2, I have always been wary of narcotics) - and after a PICC line was placed to keep me alive via CPN (IV food), an order was placed for my transfer to Johns Hopkins Hospital.
On February 25th, I was admitted to Johns Hopkins Hospital. After another colonoscopy and a small bowel CT confirmed life-threatening, severe pancolitis but a healthy small bowel with no signs of Chron's, I was scheduled for immediate, emergency surgery. On the 27th, I received a total colectomy with the formation of a mucous fistula and end-ileostomy.
Coming out of surgery... I felt great. My abdomen was generally tight, bloated, and aching from the air pumped into it during surgery, the 3 laproscope incision sites were especially tender, with intense stabbing pain where the muscle and tissue had been cut, and the fistula and ileostomy sites looked, well... freaky.
But I felt good. I felt /GREAT/. I was in horrible, intense pain... I felt as exhausted as if I had ran a marathon (and I have never been able to run farther than a mile) and as pained as if I had been stabbed in the stomach at least 5 times (which is in no way far from the truth)... but I knew that this was healing pain. No longer was this the haunting, cramping pain of a body wasting away toward death. No longer did I have to fear the pain's daily worsening. No longer would I have to take immuno-suppressant drugs, increasing my risk for secondary complications (and to this day, I consider it a miracle that the worst side effects I experienced were sweating, itching, and moodiness). No longer would I have to wonder: will I ever get better again?
Now, my life is looking better and better each day. No more than 24hrs after surgery, I stood up on my own two feet, fighting through gas and muscular pains to straighten my torso. I was discharged on March 3rd, and have been recovering well at home since then.
I am gradually weaning myself off of the prednisone and narcotics, though my doctors expect that each will take several weeks. As I was unable to sleep well after surgery (I really ought to have listened to my nurses encouragement to take more pain medicine... but compared to the colitis pain, this surgery pain felt like nothing. The first hour that I felt pain-free, I nearly cried. Eating a chocolate chip cookie, and the experience of /NOT/ being in chronic pain... nothing else in the world had ever felt so complexly /simple/... so deliciously sweet, not just in taste but more importantly in sensation: the very action - the /capability/ - of doing so was a treat far beyond the most sumptuous delicacy most perfectly designed to suite an individual's unique tastes... the experience of not being in pain was beyond expression.) I was originally quite exhausted, but now I spend all day sitting up and going on walks when wanted, and I feel quite refreshed with 6 hours each night with a nap during the afternoon.
Now, I have begun researching post-ileostomy options. /That/ is the area in which I'd like to seek advice... if anyone would like to share their own story, and their reasons for choosing a certain option, it would be very greatly appreciated.
The options I am considering are:
A J-pouch
A BCIR
For many reasons, I am leaning toward the BCIR, but I'm unsatisfied with the amount of information that I can find about either option as of yet, and have not been able to discuss them with my surgeon (my follow-up appointment is one week away).
I know I will have a long time to consider each of these options, as it will take several months for me to heal and regain the 20lbs and the strength I have lost during this ordeal... but I feel that the earlier I start gathering information and planning for my new body, the better my future will be.