Hello all,
I joined the forum to respond to a post about an ostomy reversal that I happened across, but now that I'm here, I thought I'd introduce myself. Some of it is pasted from the other post. I guess you might call me a success story. At least I've been around for a long time!
I've been diagnosed with Crohn's since 1971, back before they had any idea of how to treat it. I became ill at college and while I was home for Thanksgiving, things went down hill very quickly. The local GP told me that I had "what President Eisenhower had" and that it would pass. Then the fistulas started. They just had no clue about what to do. There was a surgeon involved in the medical group and no one wanted to offend him by suggesting he was out of his depth! I wound up with massive complications from bad choices by my original group of doctors and they nearly killed me. I finally got to a competent surgeon who operated on me immediately and literally saved my life. I was hospitalized for nearly a year (in a month, out a week, etc.) and finally rejoined the world in 1972. I then began to live my life with a vengeance, having realized what a gift it was!
I've had two resections along the way with a pretty good run in between. The second resection was done on a semi-emergency basis in 2006 and resulted in an ostomy. The ostomy sucked and was dehydrating me to the point where I needed to go to the hospital weekly for IV fluids, just to keep up with the fluid loss. From day one, I was looking for a way to have the ostomy reversed. My surgeon convinced me to wait at least a year before he would consider it. He and my GI wanted to monitor how things were progressing and let my bowel rest and get in better shape. Between the earlier resection and the current one, they wanted to give me the best chance possible. I'm so glad I listened! I waited almost nineteen months before the reversal. The reversal was a success, but not without some complications. The surgery was every bit a major as the resection was, if not more so. My bowel had a difficult time restarting and that created some problems and a longer stay in the hospital. Additionally, because of all the belly surgery, I developed massive hernias, which resulted in two additional surgeries, where plastic mesh was put in to hold me all together. All in all, it was four major surgeries in just over two years.
Was it difficult? Yes.
Was it worth it? Most definitely Yes!
Would I go through the surgery again to reverse the ostomy? In a heartbeat!
Since then, things have settled down pretty well. I'm on 6MP, but nothing else on a regular basis. I take prednisone when I feel a flare coming on, which fortunately isn't too often these days. I hate prednisone because it make me depressed, but if it works....oh well! If I take the prednisone early enough, I usually don't have any significant symptoms to deal with. I've had Crohn's for so long now (more than 40 years) that it takes something pretty dramatic to get my attention. I always figure that my ambient, walking around pain level would put a normal person in bed for the day. LOL! I can't complain much. I've really been pretty lucky with the disease compared to lots of other folks that I know.
Through it all, I've been determined to not let it rule my life and so, I pretty much do what ever I want to do in spite of it. It's a distraction to be sure and sometimes it jumps up and bites me in the ass, so to speak, but it has never stopped me. I've certainly paid a price for it, but it's been worth it to have the freedom.
Happy Hew Year!
Scott
I joined the forum to respond to a post about an ostomy reversal that I happened across, but now that I'm here, I thought I'd introduce myself. Some of it is pasted from the other post. I guess you might call me a success story. At least I've been around for a long time!
I've been diagnosed with Crohn's since 1971, back before they had any idea of how to treat it. I became ill at college and while I was home for Thanksgiving, things went down hill very quickly. The local GP told me that I had "what President Eisenhower had" and that it would pass. Then the fistulas started. They just had no clue about what to do. There was a surgeon involved in the medical group and no one wanted to offend him by suggesting he was out of his depth! I wound up with massive complications from bad choices by my original group of doctors and they nearly killed me. I finally got to a competent surgeon who operated on me immediately and literally saved my life. I was hospitalized for nearly a year (in a month, out a week, etc.) and finally rejoined the world in 1972. I then began to live my life with a vengeance, having realized what a gift it was!
I've had two resections along the way with a pretty good run in between. The second resection was done on a semi-emergency basis in 2006 and resulted in an ostomy. The ostomy sucked and was dehydrating me to the point where I needed to go to the hospital weekly for IV fluids, just to keep up with the fluid loss. From day one, I was looking for a way to have the ostomy reversed. My surgeon convinced me to wait at least a year before he would consider it. He and my GI wanted to monitor how things were progressing and let my bowel rest and get in better shape. Between the earlier resection and the current one, they wanted to give me the best chance possible. I'm so glad I listened! I waited almost nineteen months before the reversal. The reversal was a success, but not without some complications. The surgery was every bit a major as the resection was, if not more so. My bowel had a difficult time restarting and that created some problems and a longer stay in the hospital. Additionally, because of all the belly surgery, I developed massive hernias, which resulted in two additional surgeries, where plastic mesh was put in to hold me all together. All in all, it was four major surgeries in just over two years.
Was it difficult? Yes.
Was it worth it? Most definitely Yes!
Would I go through the surgery again to reverse the ostomy? In a heartbeat!
Since then, things have settled down pretty well. I'm on 6MP, but nothing else on a regular basis. I take prednisone when I feel a flare coming on, which fortunately isn't too often these days. I hate prednisone because it make me depressed, but if it works....oh well! If I take the prednisone early enough, I usually don't have any significant symptoms to deal with. I've had Crohn's for so long now (more than 40 years) that it takes something pretty dramatic to get my attention. I always figure that my ambient, walking around pain level would put a normal person in bed for the day. LOL! I can't complain much. I've really been pretty lucky with the disease compared to lots of other folks that I know.
Through it all, I've been determined to not let it rule my life and so, I pretty much do what ever I want to do in spite of it. It's a distraction to be sure and sometimes it jumps up and bites me in the ass, so to speak, but it has never stopped me. I've certainly paid a price for it, but it's been worth it to have the freedom.
Happy Hew Year!
Scott
