I am a 26 year old that was diagnosed with ulcerative colitis at 1.5 years due to malnutrition and neglect. I had to have a temporary ileostomy put in at the age of 3 and a permanent ileostomy put in at the age of 5 that included the total removal of my large intestine and rectum.
Since then, I have had multiple revisions due to the stoma site becoming problematic. In 2005, I was referred to Mount Sinai Hospital in Toronto under the care of Dr. Zane Cohen to deal with a complex ovarian cyst that needed to be asperated. At that time it was also deemed that another revision had to be done. In 2007, I attempted to put in a Koch pouch to make my situation easier. However, the valve kept slipping and this resulted in 3 corrective surgeries until late in 2008 when it had to be reversed back to an ileostomy.
In 2010, I started to experience explosive episodes where my system would back up to the point where it would literally explode and the force of the explosion would make my appliance fall off. In 2011, it was determined by doing an ileostomy injection that this was due to a narrowing of the small intestine. Unfortunately, the surgery was inconclusive and this problem was not found. The only thing that was done, was the bowel was unknotted. My doctor told me that because the problem was not found, it could potentially happen again. 2 months after the surgery, the episodes started up again and it took 2 more years and multiple tests to diagnose that my bowel was trying to function on my right side when in actuality the appliance was on my left. Waste was going backwards, backing up until it couldn't go anywhere else and explode. Also, because of the bridging of the bowels, this was creating an internal hernia. This problem was corrected on July 17th, 2013. This surgery also resulted in another revision being done. In September of 2013, I started experiencing sensitivity and pain in my stoma that felt like I had been punched in the stomach. It has actually gotten worse, and the stoma itself feels very rigid and rubbery. I have a great deal of difficulty moving it to look underneath it. I presented this problem to the enterostomal nurse mid-November and she noticed a separation between the skin and stoma at the 6 o'clock positionand what could be a suture under the skin at the 3 o'clock position. I immediately booked an appointment with Dr. Cohen but couldn't get in to see him until January 27th 2014.
At the end of November the pain was incredibly intense and I ended up going to both Grand River Hospital and Mount Sinai but both sent me home with some pain pills after only doing a basic x-ray as my situation was not dire enough.
After seeing Dr. Cohen on the 27th and presenting this problem to him again, he explained that the stoma has no nerve endings and there is no reason why it should be sensitive to touch or hurt at all and that he was going to have to make some calls to get some answers. I now have an intestinal scope booked for February 19th. Could anyone shed some light on this problem if they have ever heard of it? I have had a stoma for 23 years and never dealt with anything like this before. These symptoms are completely foreign and unfamiliar to me. Could this even be a version of "irritable stoma syndrome" resulting from the 19 surgeries that I have had all to fix the various problems over the years. Any suggestions would be greatly appreciated.
