Have any of you had to have your stoma relocated? Problems with scar tissue or adhesions? Do you have an innie stoma which makes fitting appliances impossible? Just looking for suggestions.
I originally had surgery and got my colostomy in April 2008 after anal cancer returned after very aggressive rounds of chemo and radiation. I spent the next year thinking that I was cancer-free and by then I started having numerous issues from the aggressive treatment. Just to find out the cancer was back and I was going to have to have a colostomy.
I got a thickening in the lining right at my tailbone. It is so painful that I felt like I had been kicked or had fallen right on my tailbone on concrete. They sent me to a pain clinic where they tried a series of shots to block the pain. These shots didn't do anything to relieve the pain. Then they tried an alcohol block which was supposed to kill the nerve with the drawback that the nerve could eventually regenerate itself and it would come back with a vengeance. That didn't work either. So they sent me to a shrink to see if I was a candidate for a morphine pump. I passed the mental tests and was admitted to the hospital for a trial pump. I awoke from the surgery feeling like a new person. They adjusted the levels and I thought I was in heaven. I could sit without the constant pain but on day 3 they removed the pump and sent me home to let the incision totally heal because they would have to insert the pain pump in through the spinal cord at the same location. So I went through hell for the next 6 weeks again as I awaited the permanent pump to be implanted.
Then I had problems urinating and it was determined that I had a restricted ureter causing the problem. I underwent 6 surgeries in 6 months trying to find something to ease the pain. They tried an NG tube, pediatric stents, adult stents, etc. Nothing worked. The next step was to either reroute my right kidney to the left one or to remove my right kidney and donate it to someone on the transplant list. My kidney is good but the ureter is the issue and there is no way to replace the ureter. Prior to that, they sent me to one final specialist to confirm these were the only options left. He would not recommend either of the surgeries. He said if they reroute my kidney it will probably die from lack of use and would be useless to anyone at that point in time. He said he would not recommend removing my kidney because my left kidney has had as much radiation as the right one and if it is doing double duty the odds are it will die and I will end up on dialysis and on the transplant list. He said as long as I can tolerate the pain he would not recommend anything being done. So I have sucked it up and am trying to learn to live with the pain.
Then 1 year and 1 week to the date of the original diagnosis, I found out the cancer had returned and spread to my lymph nodes. So I underwent colostomy surgery and they removed my anus and rectum because the tumor was so close to the end of my plumbing that there was no salvaging any of it for possible reconnection later down the line.
I used to have a picture-perfect stoma that stuck out between 1/2 - 3/4 inch. Everything was working as we learned the appliances and adjusted to the new way of doing my business. All was well and I had very few problems until I developed a peristomal hernia and was unable to go to the bathroom. I could feel the poo build up and engorge the hernia. My original surgeon did the hernia surgery and everything seemed to be working fine. The stoma remained intact and was still perfect. About a year later I again started having problems and couldn't go again. This time the original surgeon had left the country so I transferred to another doctor in the same office. This time I was diagnosed with scar tissue growing around my stoma. We tried stretching it digitally but it didn't help. So I went back under the knife. This time he unstitched my stoma and performed the surgery through the stoma opening. He found more scar tissue and removed it and closed me up. After the incision healed, I no longer had a perfect stoma. It now is only partially out and is no longer nice and round. So I have had leakage around the stoma where it doesn't sit level and is odd-shaped and the appliances no longer fit like they did. After everything healed up I still couldn't go potty like I should. At the 6-week check-up, I told him that I think there is another hernia and I can feel the colon push in and out of it. When it is stuck nothing will move through it and if I can get it to shift out of there things may work temporarily. But it was very painful and felt like everything gets blocked up. So off to surgery we went again. This time he found the hernia that he missed the first time because it was only visible when the colon was pushed through it. This surgery was again done through the stoma opening. The healing after three different sets of stitches had been placed through the same spots it was not a very secure incision and several stitches ripped through and left two big openings around the stoma that the doctor assured me would fill in with healthy skin and everything would get back to normal. The healing was very slow and the more frustrated I got. I kept telling my husband I smelled bad. It was like rotting skin but he didn't see anything and kept trying to reassure me things were fine. The gaps between the skin and the stoma had started filling in but I still wasn't sure it was okay. Then one day I went in to change my appliance and I had the nastiest green goo oozing out of my stomach around my stoma. There was so much that it ran into the floor before I could reach for anything to try to catch it. The ooze smelled just like what I had been smelling for the last week or two. We cleaned it all up and figured we were due to go to the doctor the following week so we didn't do anything else except watch it and wait for the appointment. At the doctor's, he looked and listened and assured me that it had been a small infection and that he would not have done anything else differently. It appeared that it was all drained out and healing was well underway.
As it healed my stoma continued to disappear into my stomach and is odd-shaped and there is nothing to work with to keep my appliances in place. We have tried the Adapt rings, convex rings, one-piece systems, two-piece systems, etc. Nothing will stay in place and I continue to fight not being able to go potty regardless of what I eat or drink. I take MiraLAX (13 grams) each day and that is hit or miss on working. Even taking Milk of Magnesia isn't a sure bet. Then after several days of not being able to go at all, we even tried to irrigate but nothing came out except for the water we had put in. I knew we had to do something to get me cleaned out because I felt like it was backing up and I was going to pop. By then I was miserable and we had exhausted everything that we know to try. I had been having terrible stomach cramps and figured something had to give. I had to have a bowel movement one way or another. I told my husband that if I didn't go by tomorrow that I was going to have to call the doctor. I hadn't eaten in a couple of days and figured I would just eat a cookie to ease my grumbling tummy. I ate an Oreo cookie before I went to bed. The next morning when I got up, I vomited up what looked and smelled like a cookie I had chewed up and spit out. I knew something was wrong but didn't know what. We called the doctor and he said to go buy some MagCitrate and drink it. We did and still nothing came out. So we called them back and he sent us to the ER because it sounded like a blockage.
At the ER they sent me to x-ray and then inserted an NG tube (what a pleasant experience NOT!). After that, they sent me to a room in hopes that everything would clear soon. That was on Tuesday morning and nothing happened until Saturday after they gave me some kind of infusion along with more x-rays. After I returned to the room, I started going and for the next two hours I expelled everything from my toenails to the tip of my head. It was running out so hard and fast that I filled my pouch and before we could get it changed, I was a constant spray of poo. I tried to stand over the toilet but it was too hard to try and aim my innie stoma. I tried moving to the sink but it was too high. So I scooted over and sat on the edge of the toilet and just let it run. It was literally 2 hours before it stopped enough to get a new flange and pouch in place. The doctor was thrilled and put me on clear liquids starting with lunch. By the evening liquids, I felt like nothing was passing through and was just backing up clear to my throat. My stoma stopped working but after a constant stream for 2 hours I figured it would take a while to rebuild up a supply and liquids wouldn't count. When the doctor came in the next day I told him that I still didn't feel good even after losing everything that I did and it was like everything backs up rather than going through. After 2 days of clear liquids, he put me on liquids and the backup got worse. By Tuesday I was so miserable that I could only take a bite or two of anything before I felt like it was going to come up and out. Then he decided to take me to surgery and see what he could find.
First off the mesh they used on both of the previous hernia surgeries had intertwined around my colon and had to be cleaned up and removed. Then he found tons of scar tissue and adhesions all along my colon. Next, he found a small blockage. And lastly, he found that I had a kink in my colon near my appendix. He tried to unkink it and it burst. He had to remove a portion of my colon to fix that. But all in all, he thought that I would be okay. I stayed in the hospital for another week and was still unable to go potty regardless of what I ate. So he ordered up a shot of something that is supposed to make you clean out. Within a few minutes of getting the shot, my stoma started working just like before following the stuff they injected for the x-ray. I felt much better than I had in the entire two weeks I had been in the hospital. He kept me overnight and let me go home the next day.
After we got home from the hospital I returned to the previous status of not being able to go at all. The doctor gave me a sample of some pills that he thought would make me get regular again. I took them but never really saw that they were doing anything. So rather than letting everything get blocked up again, I would revert to taking Milk of Magnesia to clear myself out. But my stoma continues to disappear farther and farther into my tummy and each time I have a BM, I have to change my flange because nothing keeps the poo from seeping under it and I cannot allow my skin to break down from being exposed to fecal matter. I returned to the doctor's office and he said that he thinks with all of the scar tissue and adhesions he removed he thinks the only option is to relocate my stoma.
Big problem is my stoma is currently on my left side just left of my belly button and slightly lower. I have a morphine pain pump the size of a CD only 1/2-3/4" thick on my right side. It literally takes up my whole right side and there is no room to relocate my stoma without relocating my pain pump. I am only 5'1" tall and have very little room between my rib cage and my hip bone so there is not enough room to relocate it anywhere on the left side either. We talked to the pain pump doctor and he said that he will NOT relocate the pain pump to the left side because if the scar tissue and adhesions are creating problems with the stoma he will not allow the pain pump to go there and have the same issues. He said the only two locations he will even consider moving the pain pump is into my buttocks or in my back. Neither of these locations are ideal. Since I had such aggressive radiation treatments, I have had my butt literally disappear. I had to go to a plastic surgeon after they removed my anus and rectum because the incision wouldn't heal. We spent months packing it with various things trying to expedite the healing. Eventually, they reverted to a vac-u-pump and as long as there was room to insert the sponge the healing continued. Once the hole was too small to insert the sponge and apply the machine the healing stopped. That was back in March of 2008 and I still have a hole that never healed. At that time the plastic surgeon told us that I would be back to see him somewhere between the next 5-10 years because of the radiation damage to the buttocks area that he foresees me having to have my butt rebuilt with a spare muscle out of my leg and excess fat tissue from around my body. It has only been about 4 years but I no longer have any muscle tone in my butt. It is merely skin over bone that just hangs. So I can't imagine implanting a hard metal pump and expect me to be able to sit on it. And if I do have to have my butt rebuilt it would probably be in the way for that surgery too. So the last area he is considering is in my back right at my right kidney. That is the one that I have issues due to the ureter that may end up being removed. If that is the case, the pain pump could be in the wrong space again. I don't want to continue to have surgeries to hopscotch the pain pump out of the way for more surgeries. I am going to have to do something to get my stoma relocated so I can get it to work properly like it did before I ever had the hernia surgeries or the stoma revisions.
Does anyone else out there have issues with scar tissue and adhesions? Or their skin breaking down? Have you had to have your stoma relocated? Did your doctor have this many issues finding a suitable location to do the relocation? Has anyone had to have their butts rebuilt because of the radiation damage? Does anyone have an innie stoma that makes it difficult to find appliances to fit and keep your skin dry and healthy? Or am I the freak that is blessed with every problem anyone could possibly have?
I would love to hear from anyone that has had problems and how they have overcome them.
Thanks so much.
CAW (CarolAnn Weekley)
I originally had surgery and got my colostomy in April 2008 after anal cancer returned after very aggressive rounds of chemo and radiation. I spent the next year thinking that I was cancer-free and by then I started having numerous issues from the aggressive treatment. Just to find out the cancer was back and I was going to have to have a colostomy.
I got a thickening in the lining right at my tailbone. It is so painful that I felt like I had been kicked or had fallen right on my tailbone on concrete. They sent me to a pain clinic where they tried a series of shots to block the pain. These shots didn't do anything to relieve the pain. Then they tried an alcohol block which was supposed to kill the nerve with the drawback that the nerve could eventually regenerate itself and it would come back with a vengeance. That didn't work either. So they sent me to a shrink to see if I was a candidate for a morphine pump. I passed the mental tests and was admitted to the hospital for a trial pump. I awoke from the surgery feeling like a new person. They adjusted the levels and I thought I was in heaven. I could sit without the constant pain but on day 3 they removed the pump and sent me home to let the incision totally heal because they would have to insert the pain pump in through the spinal cord at the same location. So I went through hell for the next 6 weeks again as I awaited the permanent pump to be implanted.
Then I had problems urinating and it was determined that I had a restricted ureter causing the problem. I underwent 6 surgeries in 6 months trying to find something to ease the pain. They tried an NG tube, pediatric stents, adult stents, etc. Nothing worked. The next step was to either reroute my right kidney to the left one or to remove my right kidney and donate it to someone on the transplant list. My kidney is good but the ureter is the issue and there is no way to replace the ureter. Prior to that, they sent me to one final specialist to confirm these were the only options left. He would not recommend either of the surgeries. He said if they reroute my kidney it will probably die from lack of use and would be useless to anyone at that point in time. He said he would not recommend removing my kidney because my left kidney has had as much radiation as the right one and if it is doing double duty the odds are it will die and I will end up on dialysis and on the transplant list. He said as long as I can tolerate the pain he would not recommend anything being done. So I have sucked it up and am trying to learn to live with the pain.
Then 1 year and 1 week to the date of the original diagnosis, I found out the cancer had returned and spread to my lymph nodes. So I underwent colostomy surgery and they removed my anus and rectum because the tumor was so close to the end of my plumbing that there was no salvaging any of it for possible reconnection later down the line.
I used to have a picture-perfect stoma that stuck out between 1/2 - 3/4 inch. Everything was working as we learned the appliances and adjusted to the new way of doing my business. All was well and I had very few problems until I developed a peristomal hernia and was unable to go to the bathroom. I could feel the poo build up and engorge the hernia. My original surgeon did the hernia surgery and everything seemed to be working fine. The stoma remained intact and was still perfect. About a year later I again started having problems and couldn't go again. This time the original surgeon had left the country so I transferred to another doctor in the same office. This time I was diagnosed with scar tissue growing around my stoma. We tried stretching it digitally but it didn't help. So I went back under the knife. This time he unstitched my stoma and performed the surgery through the stoma opening. He found more scar tissue and removed it and closed me up. After the incision healed, I no longer had a perfect stoma. It now is only partially out and is no longer nice and round. So I have had leakage around the stoma where it doesn't sit level and is odd-shaped and the appliances no longer fit like they did. After everything healed up I still couldn't go potty like I should. At the 6-week check-up, I told him that I think there is another hernia and I can feel the colon push in and out of it. When it is stuck nothing will move through it and if I can get it to shift out of there things may work temporarily. But it was very painful and felt like everything gets blocked up. So off to surgery we went again. This time he found the hernia that he missed the first time because it was only visible when the colon was pushed through it. This surgery was again done through the stoma opening. The healing after three different sets of stitches had been placed through the same spots it was not a very secure incision and several stitches ripped through and left two big openings around the stoma that the doctor assured me would fill in with healthy skin and everything would get back to normal. The healing was very slow and the more frustrated I got. I kept telling my husband I smelled bad. It was like rotting skin but he didn't see anything and kept trying to reassure me things were fine. The gaps between the skin and the stoma had started filling in but I still wasn't sure it was okay. Then one day I went in to change my appliance and I had the nastiest green goo oozing out of my stomach around my stoma. There was so much that it ran into the floor before I could reach for anything to try to catch it. The ooze smelled just like what I had been smelling for the last week or two. We cleaned it all up and figured we were due to go to the doctor the following week so we didn't do anything else except watch it and wait for the appointment. At the doctor's, he looked and listened and assured me that it had been a small infection and that he would not have done anything else differently. It appeared that it was all drained out and healing was well underway.
As it healed my stoma continued to disappear into my stomach and is odd-shaped and there is nothing to work with to keep my appliances in place. We have tried the Adapt rings, convex rings, one-piece systems, two-piece systems, etc. Nothing will stay in place and I continue to fight not being able to go potty regardless of what I eat or drink. I take MiraLAX (13 grams) each day and that is hit or miss on working. Even taking Milk of Magnesia isn't a sure bet. Then after several days of not being able to go at all, we even tried to irrigate but nothing came out except for the water we had put in. I knew we had to do something to get me cleaned out because I felt like it was backing up and I was going to pop. By then I was miserable and we had exhausted everything that we know to try. I had been having terrible stomach cramps and figured something had to give. I had to have a bowel movement one way or another. I told my husband that if I didn't go by tomorrow that I was going to have to call the doctor. I hadn't eaten in a couple of days and figured I would just eat a cookie to ease my grumbling tummy. I ate an Oreo cookie before I went to bed. The next morning when I got up, I vomited up what looked and smelled like a cookie I had chewed up and spit out. I knew something was wrong but didn't know what. We called the doctor and he said to go buy some MagCitrate and drink it. We did and still nothing came out. So we called them back and he sent us to the ER because it sounded like a blockage.
At the ER they sent me to x-ray and then inserted an NG tube (what a pleasant experience NOT!). After that, they sent me to a room in hopes that everything would clear soon. That was on Tuesday morning and nothing happened until Saturday after they gave me some kind of infusion along with more x-rays. After I returned to the room, I started going and for the next two hours I expelled everything from my toenails to the tip of my head. It was running out so hard and fast that I filled my pouch and before we could get it changed, I was a constant spray of poo. I tried to stand over the toilet but it was too hard to try and aim my innie stoma. I tried moving to the sink but it was too high. So I scooted over and sat on the edge of the toilet and just let it run. It was literally 2 hours before it stopped enough to get a new flange and pouch in place. The doctor was thrilled and put me on clear liquids starting with lunch. By the evening liquids, I felt like nothing was passing through and was just backing up clear to my throat. My stoma stopped working but after a constant stream for 2 hours I figured it would take a while to rebuild up a supply and liquids wouldn't count. When the doctor came in the next day I told him that I still didn't feel good even after losing everything that I did and it was like everything backs up rather than going through. After 2 days of clear liquids, he put me on liquids and the backup got worse. By Tuesday I was so miserable that I could only take a bite or two of anything before I felt like it was going to come up and out. Then he decided to take me to surgery and see what he could find.
First off the mesh they used on both of the previous hernia surgeries had intertwined around my colon and had to be cleaned up and removed. Then he found tons of scar tissue and adhesions all along my colon. Next, he found a small blockage. And lastly, he found that I had a kink in my colon near my appendix. He tried to unkink it and it burst. He had to remove a portion of my colon to fix that. But all in all, he thought that I would be okay. I stayed in the hospital for another week and was still unable to go potty regardless of what I ate. So he ordered up a shot of something that is supposed to make you clean out. Within a few minutes of getting the shot, my stoma started working just like before following the stuff they injected for the x-ray. I felt much better than I had in the entire two weeks I had been in the hospital. He kept me overnight and let me go home the next day.
After we got home from the hospital I returned to the previous status of not being able to go at all. The doctor gave me a sample of some pills that he thought would make me get regular again. I took them but never really saw that they were doing anything. So rather than letting everything get blocked up again, I would revert to taking Milk of Magnesia to clear myself out. But my stoma continues to disappear farther and farther into my tummy and each time I have a BM, I have to change my flange because nothing keeps the poo from seeping under it and I cannot allow my skin to break down from being exposed to fecal matter. I returned to the doctor's office and he said that he thinks with all of the scar tissue and adhesions he removed he thinks the only option is to relocate my stoma.
Big problem is my stoma is currently on my left side just left of my belly button and slightly lower. I have a morphine pain pump the size of a CD only 1/2-3/4" thick on my right side. It literally takes up my whole right side and there is no room to relocate my stoma without relocating my pain pump. I am only 5'1" tall and have very little room between my rib cage and my hip bone so there is not enough room to relocate it anywhere on the left side either. We talked to the pain pump doctor and he said that he will NOT relocate the pain pump to the left side because if the scar tissue and adhesions are creating problems with the stoma he will not allow the pain pump to go there and have the same issues. He said the only two locations he will even consider moving the pain pump is into my buttocks or in my back. Neither of these locations are ideal. Since I had such aggressive radiation treatments, I have had my butt literally disappear. I had to go to a plastic surgeon after they removed my anus and rectum because the incision wouldn't heal. We spent months packing it with various things trying to expedite the healing. Eventually, they reverted to a vac-u-pump and as long as there was room to insert the sponge the healing continued. Once the hole was too small to insert the sponge and apply the machine the healing stopped. That was back in March of 2008 and I still have a hole that never healed. At that time the plastic surgeon told us that I would be back to see him somewhere between the next 5-10 years because of the radiation damage to the buttocks area that he foresees me having to have my butt rebuilt with a spare muscle out of my leg and excess fat tissue from around my body. It has only been about 4 years but I no longer have any muscle tone in my butt. It is merely skin over bone that just hangs. So I can't imagine implanting a hard metal pump and expect me to be able to sit on it. And if I do have to have my butt rebuilt it would probably be in the way for that surgery too. So the last area he is considering is in my back right at my right kidney. That is the one that I have issues due to the ureter that may end up being removed. If that is the case, the pain pump could be in the wrong space again. I don't want to continue to have surgeries to hopscotch the pain pump out of the way for more surgeries. I am going to have to do something to get my stoma relocated so I can get it to work properly like it did before I ever had the hernia surgeries or the stoma revisions.
Does anyone else out there have issues with scar tissue and adhesions? Or their skin breaking down? Have you had to have your stoma relocated? Did your doctor have this many issues finding a suitable location to do the relocation? Has anyone had to have their butts rebuilt because of the radiation damage? Does anyone have an innie stoma that makes it difficult to find appliances to fit and keep your skin dry and healthy? Or am I the freak that is blessed with every problem anyone could possibly have?
I would love to hear from anyone that has had problems and how they have overcome them.
Thanks so much.
CAW (CarolAnn Weekley)