I am 39 and have had my now permanent colostomy since mid-1990.
Back story…
I was born in 1976 with an Imperforate Anus and nearly half of my intestines dead, and was immediately given a colostomy and the removal of the dead intestine. The first abdominal wall surgery was performed, marking the beginning of scar tissue/adhesions. In 1979, a rectum was formed and a pull-through and reversal of the colostomy were performed along with lysis of adhesions and removal of more intestine. That was the second abdominal wall surgery performed, continuing the creation of more scar tissue. From 1980-1985, there were a couple more times I went in to remove adhesions, and each time a little more intestine came with it. Sadly, each time I went in to remove adhesions, it still caused more scar tissue.
Even with the pull-through and constructed rectum, I never had full control. In 1989, I began getting sick a lot and was having to have IV antibiotics a lot. The antibiotics caused diarrhea and went right through me, deteriorating the muscle tissue around the rectum, causing the need for something to be done. In the spring of 1990, my surgeon presented us with the option to take the Gracilis muscle (runs down the inner thigh attaching at the knee) and wrap it around the rectum, replacing the old muscle. I would be given more control if successful. It was decided I would have the procedure. Three days later the muscle bled out and died. In a life and death call, I was given a temporary colostomy. Once again, more abdominal wall trauma and the building up of scar tissue. In 1991, I had my first Nissen Fundoplication performed on my stomach and esophagus. More abdominal wall trauma. In 1997, my colostomy was made permanent. In 1999, a second Nissen Fundoplication was performed.
Due to many abdominal wall surgeries, scar tissue and adhesions had intertwined with my intestine/colon, and a parastomal hernia had formed. In January 2012, I had a total obstruction. Major surgery was once again performed to remove the obstruction and repair the parastomal hernia. All was a success, though two more feet of colon had to be removed, leaving me very little. Intubation was tricky due to scar tissue in my airways from previous surgeries, and I was told the next intubation might not happen. It was said the adhesions were holding the colon together, and when removing the adhesions, the colon would just fall apart in the surgeon's hands. I was in the hospital for about a month. It took two weeks for my stomach to actually work again, and a feeding tube was placed for three months to help with nutrition. I was told then by my surgeon that this would happen again, just the time we would never know. I was also told that next time any amount of colon taken out would leave me with a “short-gut.”
Later in 2012, I began having the same symptoms as with the obstruction, and CT scans were done that showed a new parastomal hernia, and smaller abdominal wall hernias in the incision sites. I was told then, based on my last surgery, that the risks of surgery outweighed any benefit and that I should follow a low-residue (very unhealthy) diet, but was never given guidelines and ways to supplement the diet with nutrients I lack from the diet. I was also told that I would feel good about 20% of the time and bad the other 80%. That is the story I have heard for the last three years.
This year I have already had several ER visits and CT scans due to obstruction symptoms. Not finding total obstructions, but areas in the colon that are kinked and looped in several places within hernias. I now have four very noticeable and problematic abdominal wall hernias along with the parastomal hernia that is making appliance fitting more and more difficult. I am missing work due to pain, and the inability to bend over because of pain and getting sick due to one of the hernias in the waistline has interfered with performance. I feel like crap no matter what I eat, feeling nauseous after pretty much every meal and hurting later when it passes through my colon. I am being scheduled to see a new surgeon for a second opinion. I am not necessarily looking for them to say surgery is the answer, but to help me with a good maintenance plan to keep me running. The 80-20 has reversed, feeling bad 80% of the time sucks, and I would like some answers.
I have become very anxious and depressed and have started seeing a therapist for the emotional and psychological strain this and a lifetime of issues have taken their toll on me.
My story may be unlike a lot of yours here on this site, but I bet there are those I share some commonality with. I invite any comments, suggestions, and encouragement.
