Recently underwent total colectomy with Ileorectal Anastomosis

I am new to this forum but have visited and read many posts over the years and am looking for others who might have had a similar experience. I am a 40 year old man that developed UC at age 35 (yeah, quite late in life). My case was quite severe from the beginning as the UC affected my entire colon -other than the sigmoid and rectum (again, little strange that this area was spared when it is more common for UC to affect the rectum).

My conditioned worsened so quickly I was put on Remicade, 40MG of Pred/day and Asacol. All of this worked enough to function for about 4 years but remission was never really achieved. about a year ago the Remicade caused Drug Induced Lupus, Cryglobulanemia, Raynaud's and symptoms of arthritis. I tried Humira, Cimzia and other TNF blockers but they all caused the same lupus-like symptoms. So, with no other choice I started "interviewing" surgeons.

In April I chose a GI Surgeon that seemed the best fit, had the right credentials and plenty of experience. Plus, I just plain like him.
On April 9th I underwent a total colectomy with an ileorectal anastomosis and temporary loop ileostomy. For those that have not had to research surgical options this simply means the surgeon cut my colon off at the terminal illeium (small intestine) and attached it to the rectum. This surgery was a choice for me (that many UC patients don't have) since the UC had never affected my rectum it was healthy and my surgeon assured me better bowel control in the long term. Now here is where things went really south and I am looking for others with any feedback or similar complications.

-7 days after the surgery I was released from the hospital. Moving quite well, pain was well controlled with very little narcotics and I was eating solid foods (like double cheeseburgers). Life seemed grand.

-3 days after returning home I noticed I had the urge to urinate but could not. Severe abdominal pain and a low grade fever (about 100 degrees) started as well. I went the next day to see my surgeon who ordered blood tests stat and would not allow me to leave his office until he had results.

-1 hour later I was admitted and rushed to ICU for complete renal failure, severe anemia (crit was at 12) and the rest of the blood work was a mess (everything too high, too low, etc.).

Later that day -After 4 units of blood, CT Scans, MRI's, Sigmoidoscopy, endoscopy and unbelievable amounts of different drugs streaming through my IV my surgeon came in with his findings.
1. Severe dehydration caused the renal/kidney failure.
2. UC had shown up in my rectum - in a serious way and caused the severe cramping and bleeding (thus the crit of 12). Even though I was told the bleeding from my rectum was normal before leaving the hospital the first time.
3. I had three major abscesses in my abdominal cavity - likely due to a leak at the anastomosis. Drains were placed that night to begin draining the abscesses.
4- My adrenal gland had basically stopped working and produced almost no cortisol - due to the large doses of pred and how quickly they took me off the pred after surgery (only 5 day taper).

Well, I ended up spending 6 weeks in the hospital as they tried to get things back on track. I continued to develop abscesses during that time (9 in total). However, I was told they could not repair the anastomosis surgically until the UC cleared in the rectum. Oh, and to add insult to injury I became so ill that my Epstein-Barr reactivated and I came down with contagious mononucleosis (cherry on top!)

So here I am 3 1/2 months after the surgery and the UC has finally cleared in my rectum by using Rowasa enemas and 10mg/prednisone per day. However, my surgeon would now like me to "wait a couple of weeks" to see if the anastomosis will heal now that the UC has resolved. In the meantime I develop about 1 abscess per week and have to have a drain installed - almost like clockwork.

I am not here to tell a sob story as I read many posts and I always empathize with each individual as we all share the same horrible disease. I am just wondering - has anybody else had an anastomotic leak? Do they heal "magically" on their own"?

Also, has anybody else undergone the ileorectal anastomosis surgery? I know this is way less common for UC patients and my surgeon even warned me that complications were more common with this surgery (due to the difficulty of attaching the small intestine to the rectal stump).

I guess I just needed a forum to throw it all out there - this thing has been a train wreck and I am frustrated with this "wait and see" approach.

Any thoughts, ideas, comments are appreciated.

So sorry that you're having such a rough time with medical/surgical treatment. A while back there was a middle-aged member named UCRick who posted here about his surgeon's decision to do IRA & then gave us the aftermath. As I recall, his surgery was done by an older doctor in Colorado, who left about an inch of rectum for the connections. He also put UCRick on an oral 5-ASA med post-surgery to protect the remaining piece of rectum from UC re-inflammation-- which is always possible if any colorectal tissue is left behind at surgery. After ca. 1 yr recuperating UCRick posted that he was doing well. You might be able to look up his posts if they're still archived on the forum. / Old Hat (30 yrs with left-sided UC; presently in remission taking brandname Colazal)

Yes, Prometheus Labs aren't known for their accuracy in testing; in fact so little merit is given to their testing that the Cleveland Clinic no longer reviews their labs when assessing patients for UC surgery. My CR surgeon told me back in 2001 that he found their testing faulty. Well the good news is that you are regaining your health and can postpone further surgery by continuing on UC meds.

sue

Wow NiTi,
Thanks for the link. I meet with my surgeon again on Tuesday and I plan to be armed with as many questions and alternatives as possible - and this really helps.
Since the ileorectal anastamosis is the most likely to leak of all GI resections I need to know what to ask.
Thanks again,