Posted 11/6/2013 9:46 AM (GMT -7)
I am finally taking the advice of some of my friends to seek a support group online...my hope is that sharing my experience, especially in the last year, will serve as a way to let others know they are not alone, and to know of what some doctors have suggested for treatment of my colonic issues.
Ever since I can remember, I have had issues going to the bathroom. Between straining, having difficulty evacuating, urgency and occasional accidents, to intense pain, bleeding, and extreme abdominal discomfort, to looking like I was pregnant from my abdomen being extremely swollen and bloated. You name it, I experienced it. From the time I was about 17 until 27, I suffered from severe rectal prolapse. I had no idea what it was during that time frame. All I know is that I had something that looked like a long penis sticking out of my butt each time I "tried" to go to the bathroom. There had been more than a few occasions when I'm guessing a large part of my intestine came out of my body d/t my straining and literally dangled out of me, spewing into the toilet water.
A year ago, after this disgusting incident repeated itself, and after talking with a friend who was in medical school, I finally made an appointment with my primary care doctor. He told me my symptoms were textbook complete rectal prolapse and told me I needed to see a surgeon. After meeting with one surgeon I did not like out of Hahnemann Hospital, another surgeon in Freehold, NJ who I did like (but insurance canceled my surgery 2 days before), and finally my awesome Bryn Mawr surgeon, and after tons of tests, including defecogram, xrays, CT-scans, rectal exams, barium, s urgery was scheduled for January 11, 2013.
I had my laproscopic resection rectopexy on January 11, 2013; however, all did not go well. I was supposed to be in the hospital for 3 days; I was in the hospital for a week. I was, as my surgeon said, “dogged” by awful complications, neurologic, and cardiac symptoms for months following this surgery. My bladder stopped working after the urologist put in a stent to be safe with this surgery. I continued to have bladder issues until April 2013. I also started experiencing numbness in my arms, legs, and face; lost blocks of vision, sometimes for days at a time; and was having severe chest pain and shortness of breath. I was hospitalized for fear of having a stroke due to neurologic and cardiac issues for a week in March. After another round of tests, they discovered I had a bicuspid aortic valve (congenital, born with this, just found it by accident when doing repeat echocardiograms for symptoms), and now had complicated migraines (which I never had before prior to surgery). Pretty much from January until May, I was dealing with symptoms off and on of all of the above issues, found myself in the ER a total of 3 times, and admitted to the hospital one of those times for a week. Additionally, I was still having difficulty going to the bathroom, would not go, or would have explosive diarrhea.
My GI doctor from Bryn Mawr, a referral of my first surgeon from Bryn Mawr, started me on Linzess (290mg) and told me to pair that with Miralax, meanwhile I still was taking Senna (2-4 tablets daily), and if that still didn’t work, ducolax. I was constantly uncomfortable and there seemed to be no real relief. I definitely learned how to work through it as I had two full time jobs and graduate school. But it was not, and still is not, easy.
Around May 20, 2013, when attempting to go to the bathroom, I felt an all too familiar feeling...I had relapsed with rectal prolapse. When I called my surgeon, He referred me to a surgeon out of the University of Pennsylvania. I had to go through the embarrassing demonstrations of it all, and now had to go through repeat tests of Barium, x-ray, CT-scan w/ contrast, and another awful defocogram. After all results were back in, there was a partial rectocele along with internal hemorrhoids and of course the rectal prolapse. He scheduled surgery for June 21, 2013.
I had an open rectopexy on June 21, 2013 at the Hospital of the University of Pennsylvania. Had bladder complications yet again, and suffered from a severe migraine most of my time there. I was in the hospital a week. about a month after surgery, I developed extremely painful and deep left-sided abdominal pains. I could barely stand. They sent me to the hospital, at which I was admitted and stayed there 5 days. I was in quarantine for a chunk of the time I was there, as they feared I had developed C-Diff and also feared I had a fistula due to gas escaping from my vagina anytime I had diarrhea or attempted a bowel movement. After discharge, he sent me for a rigid proctosigmoidscopy to check for a fistula on August 19, 2013. This came back negative.
All the while this was going on, my GI doctor began wondering if there was a larger, underlying issue with my colon, particularly due to the irregularity of my bowels, recurrent prolapse, nausea, and constant abdominal pain. He sat down with me and told me he wanted to try a test of his own to see if we could reset my colon to baseline again – basically I would have to do the awful whole big bottle of miralax paired with 64oz of Gatorade. He said if this doesn’t work, and things return to my normal, we might want to consider sending me to Temple University for a full gastric emptying studying. If that came back with what he suspected might be going on (colonic inertia) he would suggest we discuss the option of having a colectomy performed. We would not discuss that until I went through these two things, but he said at this point, that might be the best option I have at relief.
The cleanse failed and I was back on my linzess, miralax, senna concoction and was back to the usual abdominal pain, irregular bowels, seeing food particles, having huge masses being extremely difficult to pass, etc. Back and forth, zero relief, but constant cycle. I called my GI doctor, told him. He contacted Temple University and got me signed up for the 4-day complete gut gastric emptying study. I ate the bland and isotope-radioactive-drenched egg sandwich, did not take my medications or pain killers, refrained from alcohol and caffeine, and went back daily for scans. A week later, my GI doctor called with the results. The test showed that my stomach and small intestine work just fine (which is excellent news!) but my colon was significantly slowed and indicated global colonic inertia. He said at this point, he wanted me to meet with his mentor at Temple for a second opinion, then he would contact my surgeon and get him on board for the colectomy as he did not feel there was any other feasible option to offer me true relief.
I met with the 2 nd opinion Temple GI doctor on September 17, 2013. He seemed to concur with my GI doctor, but said it was important to go for an anal mamometry to make sure that my pelvic floor muscles functioned properly; if they would not, I would also need an ileostomy. I went through the anal mamometry on September 23, 2013. Awful and embarrassing test. After I had met with this 2 nd opinion doctor, I called my GI doctorafter which he felt it was definitely time to contact the surgeon and get him on board.
I met with my 1st surgeon from Bryn Mawr on September 25, 2013. He said it all made sense to him that the underlying and big issue was the colonic inertia, but that is not the first thing that doctors like him think about when a 28 year old, seemingly healthy, young lady walks into his office with a history of rectal prolapse. Regardless, he was completely on board for the subtotal colectomy. He would leave the rectum in place and remove the colon up to the small intestine and reconnect the small intestine to the rectum. If, in a year, I am still miserable and having issues going to the bathroom, and pelvic floor physical therapy is getting us nowhere, I know I would need to get an ileostomy…but we are hoping that it does not come to that.
My laparoscopic versus open subtotal colectomy is scheduled for Friday, December 13, 2013. I am definitely scared, but at the same time, wanting it to be over and done with so I can move on with my recovery to hopefully sunnier days. The misery I have dealt with for so long never remits, and even if I for a second feel like it could get better, my body shows me the complete opposite. As of late, I have been having increasing amounts of rectal bleeding, abdominal pain, bouts with painful diarrhea, and a constant fear of the prolapse returning before this surgery. My surgeon has been absolutely wonderful and has been answering all questions and concerns I have via email – which is completely reassuring to me of his investment in making this a success. I know there will likely be complications, and I know things will seriously suck for a while after I have the surgery. My baseline hospital stay is a week, according to my surgeon.
I hope that someone out there will appreciate this novel I just wrote and know that they are by no means alone. I often times feel completely alone…then I google and find support forums, such as this, and feel a bit better knowing there are other people out there.
I embrace any comments, support, questions, advice anyone who has gone through something similar, especially the subtotal colectomy. I do apologize for the length of this all.
Thank you for your time.