Hello Everybody! :rof:
ika::cheers::grr1d::dance:
First I'd like to acknowledge Chronsforum.com!!! I had my ileostomy surgery over 2 years ago. I was absolutely devastated and so depressed and thought my life as I had known it was over. After finding this site, reading and participating, I had a major turn-around in attitude. I am so thankful to this forum for all of its members and their personal stories. It helped me so much with facing my future.
NOW - ON TO MY IDEA FOR A POSSIBLE FIX FOR A LEAKING POUCH! LIPOSUCTION! At the time of my surgery I was very, very ill, as so many of us are. Otherwise, why have such a drastic surgery? I had so many blockages that my surgeon said my small intestine looked like a "frozen block of cement". Because of the blockages I was unable to eat for almost the entire year of 2009. Luckily I was overweight and had some extra to spare. However, I was not overweight by 100 pounds which is how much I ended up loosing. I'm a 5'7" woman who went from 204 pounds to 108 pounds. I looked like a concentration camp victim. I asked my doctor, 2 months after my surgery, if I had been dying. After a long pause he said, "Yes". He wasn't sure if I was even strong enough to make it through the surgery (which turned out to last 12 hours).
I had a great deal of intestine removed. Not only my colon was gone but so was an additional third of my small intestine. Of the intestine remaining I was told that there wasn't a portion that hadn't been resected. Basically everything in my gut was a cut and paste. Because of all this my surgeon (the top ColoRectal surgeon at Kaiser Permanente in Los Angeles) told me it would be impossible for me to gain any weight. I was so excited! Finally I could eat everything, YEAY! Wow was my doctor wrong. My body figured out so quickly how to work with the new setup and I began to gain weight just like any normal person would.
Here's the difficulty I encountered. My doctor didn't want me to have a stoma that was too long and since he figured I wouldn't gain weight he sized it accordingly. So what may have been a perfectly long enough stoma at 108 pounds was not long enough at all at 140 pounds. My stoma is, best-case scenario, FLUSH WITH MY ABDOMEN, or, worst-case scenario, INVERTED. Because my abdomen was not flat anymore, as a result of the surgery, I was having to affix my pouch to an uneven surface. I couldn't get my bag to stick all the way on so I was always leaking. I asked my doctor if he could fix this. He told me that it wasn't as simple as going in and pulling out my stoma further. He would have to do another major surgery, thereby exposing my intestines to more air (known to cause the scar tissue that creates the blockages) and that since it was too high of a risk I was going to have to learn to live with it.
I tried EVERYTHING! Every kind of pouch with every kind of barrier. Pastes, spray adhesives. I swear I even thought about Crazy Glue. I was finally sent to a custom lab to have a mold made of my abdomen and a bag formed perfectly for just me. IT DIDN'T WORK! I went back 9 times and it still didn't work. Because of the leaking I cannot sleep on my back or on my left side. So for 2 years I've only been sleeping on my right. I've been setting my clock at night for every 2 hours so that I can get up and empty my pouch before it gets to the area that's not closed off. Still I leak (or much worse than leak which I'm sure many of you have experienced). I've tried heating up the barrier with a blow dryer instead of just warming with my hand. I've tried pushing the barrier down as far as I could and then anchoring the tape as tightly as it would go, thereby forcing everything to be flat. This created horrible water blisters which would pop under the tape. Everything would become wet as a result and then all my supplies would no longer stick to my skin. If I leaked overnight my skin would become raw. This resulted in my skin weeping and so again the adhesive wouldn't stick.
One day I was looking at my abdomen in the shower and I thought, "man I wish I could afford liposuction. I'd get a plastic surgeon to suck out any of the fat around the area of the stoma and also in the general area where the barrier lays." Then it was like the room lit up! I thought, "Oh my god! I bet I can make a case for liposuction to be medically necessary so that my insurance will cover it!" As soon as I got out of the shower I drafted an email and sent it to my surgeon. I relayed all of the things that I had tried over the past 2 years and how none of it had worked. I then said, "I would be very appreciative if you could send me a referral to a plastic surgeon". By the end of the day I received his response. "I have sent a referral to plastic surgery and they should be contacting you shortly". I COULDN'T BELIEVE IT!
When the plastic surgery department called me they told me that my surgeon wanted me to see Dr. Andrew Wexler (it turns out he's the chief of plastic surgery. HOLY COW!). The day before my appointment with Dr. Wexler I tried not to eat very much. I knew it was likely that he would want me to remove my bag and I didn't want an active stoma to interfere with what I wanted to show him. I described my history to him. He listened carefully, asked me a few questions relavent to my situation and then said, "Well, I've never performed liposuction for that reason before but I'm certainly willing to give it a try." I couldn't believe it! REALLY? JUST LIKE THAT? YOU'RE KIDDING? I felt like I was dreaming.
My surgery was scheduled for the following month. On the day before surgery I decided not to eat. I knew that my incisions would be very small but I still wanted as little stool as possible present during the procedure. The surgery lasted about an hour. About 330 ml were sucked out of my abdomen. Not very much really, about 1/6 of a 2 liter bottle of soda. The next day I could see a difference. My stoma, which had been flat, now stuck out about 1/2 inch. To some people that may not seem to be a big deal but when you go from flat or inverted it's a HUGE difference! This lasted about 3 weeks. Then suddenly my body began to change. For some reason the area to the left of my stoma seemed higher while the area to the right seemed to have gotten lower. I needed it to be the opposite. Suddenly the leaking began again with a vengeance. I was so frustrated. I gave it some more time because I knew there was still more time for all the swelling to go down and I didn't want to jump the gun. I also didn't want to appear the pest by being impatient in case I did need to ask that it be done again. So I waited 8 weeks. That seemed like a reasonable amount of time for things to settle. The situation didn't improve so I sent an email to Dr. Wexler.
I thought to myself, "He's not going to say yes to a second procedure". He returned my email and said to call his nurse to schedule an appointment so he could take a look. He said he was booked up for the next 3 months but if I could come in tomorrow he would squeeze me in. Oh, you bet I went! He took a look and said, "Yes, this could use some improvement. I will just have to be more aggressive this time. Here's the number to call to set up surgery." I was out of my mind with joy! I could not believe this was happening. I was given the date of 4/26/12 for the procedure. I asked to please notify me if there were any cancellations so that I might have it done sooner. On 4/11/12 I was scheduled for my pre-op appointment. While I was getting ready to leave I got a call from the doctor's office. Celia said, "Hi Sharon, I know you have a pre-op appointment with Dr. Wexler today and we have a cancellation for tomorrow if you would like to have your surgery sooner! HECK YEA!!! So I went in to see the doctor and he was going to mark me. I asked him if it was OK if I sat down so that I could show him how my fat rolls interfered with the pouch fitting flatly. He said yes. I then basically started pointing out as much of my abdomen as I could. Finally I just said, "Please, just suck it all out." I laughed like I was joking but I really wasn't.
Again, I didn't eat in order to make the surgery easier. I brought an extra pouch set-up so they could replace the one that was removed in the operating room. While I was in the pre-op area a surgical resident came by to speak to me. He told me that so many patients come in complaining of leaking pouches and this might provide an answer. I said, "Yeah, I was looking at my abdomen in the shower and thought, 'Maybe liposuction could fix this'." The resident's eyes widened and he said, "You thought of this?" I said yes. He said, "This has never been done before. If this works it will be published so that other doctors can do this to help their patients!' Wow, I felt so smart.
So it's been only 2 1/2 days since my procedure. I can't tell anything yet because I'm quite swollen from the procedure. I'm also quite bruised in all the areas that I pointed out and he marked. That makes me hopeful because it means he covered all of the areas I requested.
I will keep you all posted but in the mean time I think it might be something to at least consider. My only out-of-pocket expense was my standard hospital co-pay which is $125 per day (2 days) plus my 4 doctor visits (2 for reviewing and 2 for pre-op) at $5 each. Grand total came to $270. Oh, I forgot parking and gas but you get the idea.
I'll keep you posted as to my recovery. MY VERY BEST TO ALL OF YOU!!!!
Sharon J.
ika::cheers::grr1d::dance:First I'd like to acknowledge Chronsforum.com!!! I had my ileostomy surgery over 2 years ago. I was absolutely devastated and so depressed and thought my life as I had known it was over. After finding this site, reading and participating, I had a major turn-around in attitude. I am so thankful to this forum for all of its members and their personal stories. It helped me so much with facing my future.
NOW - ON TO MY IDEA FOR A POSSIBLE FIX FOR A LEAKING POUCH! LIPOSUCTION! At the time of my surgery I was very, very ill, as so many of us are. Otherwise, why have such a drastic surgery? I had so many blockages that my surgeon said my small intestine looked like a "frozen block of cement". Because of the blockages I was unable to eat for almost the entire year of 2009. Luckily I was overweight and had some extra to spare. However, I was not overweight by 100 pounds which is how much I ended up loosing. I'm a 5'7" woman who went from 204 pounds to 108 pounds. I looked like a concentration camp victim. I asked my doctor, 2 months after my surgery, if I had been dying. After a long pause he said, "Yes". He wasn't sure if I was even strong enough to make it through the surgery (which turned out to last 12 hours).
I had a great deal of intestine removed. Not only my colon was gone but so was an additional third of my small intestine. Of the intestine remaining I was told that there wasn't a portion that hadn't been resected. Basically everything in my gut was a cut and paste. Because of all this my surgeon (the top ColoRectal surgeon at Kaiser Permanente in Los Angeles) told me it would be impossible for me to gain any weight. I was so excited! Finally I could eat everything, YEAY! Wow was my doctor wrong. My body figured out so quickly how to work with the new setup and I began to gain weight just like any normal person would.
Here's the difficulty I encountered. My doctor didn't want me to have a stoma that was too long and since he figured I wouldn't gain weight he sized it accordingly. So what may have been a perfectly long enough stoma at 108 pounds was not long enough at all at 140 pounds. My stoma is, best-case scenario, FLUSH WITH MY ABDOMEN, or, worst-case scenario, INVERTED. Because my abdomen was not flat anymore, as a result of the surgery, I was having to affix my pouch to an uneven surface. I couldn't get my bag to stick all the way on so I was always leaking. I asked my doctor if he could fix this. He told me that it wasn't as simple as going in and pulling out my stoma further. He would have to do another major surgery, thereby exposing my intestines to more air (known to cause the scar tissue that creates the blockages) and that since it was too high of a risk I was going to have to learn to live with it.
I tried EVERYTHING! Every kind of pouch with every kind of barrier. Pastes, spray adhesives. I swear I even thought about Crazy Glue. I was finally sent to a custom lab to have a mold made of my abdomen and a bag formed perfectly for just me. IT DIDN'T WORK! I went back 9 times and it still didn't work. Because of the leaking I cannot sleep on my back or on my left side. So for 2 years I've only been sleeping on my right. I've been setting my clock at night for every 2 hours so that I can get up and empty my pouch before it gets to the area that's not closed off. Still I leak (or much worse than leak which I'm sure many of you have experienced). I've tried heating up the barrier with a blow dryer instead of just warming with my hand. I've tried pushing the barrier down as far as I could and then anchoring the tape as tightly as it would go, thereby forcing everything to be flat. This created horrible water blisters which would pop under the tape. Everything would become wet as a result and then all my supplies would no longer stick to my skin. If I leaked overnight my skin would become raw. This resulted in my skin weeping and so again the adhesive wouldn't stick.
One day I was looking at my abdomen in the shower and I thought, "man I wish I could afford liposuction. I'd get a plastic surgeon to suck out any of the fat around the area of the stoma and also in the general area where the barrier lays." Then it was like the room lit up! I thought, "Oh my god! I bet I can make a case for liposuction to be medically necessary so that my insurance will cover it!" As soon as I got out of the shower I drafted an email and sent it to my surgeon. I relayed all of the things that I had tried over the past 2 years and how none of it had worked. I then said, "I would be very appreciative if you could send me a referral to a plastic surgeon". By the end of the day I received his response. "I have sent a referral to plastic surgery and they should be contacting you shortly". I COULDN'T BELIEVE IT!
When the plastic surgery department called me they told me that my surgeon wanted me to see Dr. Andrew Wexler (it turns out he's the chief of plastic surgery. HOLY COW!). The day before my appointment with Dr. Wexler I tried not to eat very much. I knew it was likely that he would want me to remove my bag and I didn't want an active stoma to interfere with what I wanted to show him. I described my history to him. He listened carefully, asked me a few questions relavent to my situation and then said, "Well, I've never performed liposuction for that reason before but I'm certainly willing to give it a try." I couldn't believe it! REALLY? JUST LIKE THAT? YOU'RE KIDDING? I felt like I was dreaming.
My surgery was scheduled for the following month. On the day before surgery I decided not to eat. I knew that my incisions would be very small but I still wanted as little stool as possible present during the procedure. The surgery lasted about an hour. About 330 ml were sucked out of my abdomen. Not very much really, about 1/6 of a 2 liter bottle of soda. The next day I could see a difference. My stoma, which had been flat, now stuck out about 1/2 inch. To some people that may not seem to be a big deal but when you go from flat or inverted it's a HUGE difference! This lasted about 3 weeks. Then suddenly my body began to change. For some reason the area to the left of my stoma seemed higher while the area to the right seemed to have gotten lower. I needed it to be the opposite. Suddenly the leaking began again with a vengeance. I was so frustrated. I gave it some more time because I knew there was still more time for all the swelling to go down and I didn't want to jump the gun. I also didn't want to appear the pest by being impatient in case I did need to ask that it be done again. So I waited 8 weeks. That seemed like a reasonable amount of time for things to settle. The situation didn't improve so I sent an email to Dr. Wexler.
I thought to myself, "He's not going to say yes to a second procedure". He returned my email and said to call his nurse to schedule an appointment so he could take a look. He said he was booked up for the next 3 months but if I could come in tomorrow he would squeeze me in. Oh, you bet I went! He took a look and said, "Yes, this could use some improvement. I will just have to be more aggressive this time. Here's the number to call to set up surgery." I was out of my mind with joy! I could not believe this was happening. I was given the date of 4/26/12 for the procedure. I asked to please notify me if there were any cancellations so that I might have it done sooner. On 4/11/12 I was scheduled for my pre-op appointment. While I was getting ready to leave I got a call from the doctor's office. Celia said, "Hi Sharon, I know you have a pre-op appointment with Dr. Wexler today and we have a cancellation for tomorrow if you would like to have your surgery sooner! HECK YEA!!! So I went in to see the doctor and he was going to mark me. I asked him if it was OK if I sat down so that I could show him how my fat rolls interfered with the pouch fitting flatly. He said yes. I then basically started pointing out as much of my abdomen as I could. Finally I just said, "Please, just suck it all out." I laughed like I was joking but I really wasn't.
Again, I didn't eat in order to make the surgery easier. I brought an extra pouch set-up so they could replace the one that was removed in the operating room. While I was in the pre-op area a surgical resident came by to speak to me. He told me that so many patients come in complaining of leaking pouches and this might provide an answer. I said, "Yeah, I was looking at my abdomen in the shower and thought, 'Maybe liposuction could fix this'." The resident's eyes widened and he said, "You thought of this?" I said yes. He said, "This has never been done before. If this works it will be published so that other doctors can do this to help their patients!' Wow, I felt so smart.
So it's been only 2 1/2 days since my procedure. I can't tell anything yet because I'm quite swollen from the procedure. I'm also quite bruised in all the areas that I pointed out and he marked. That makes me hopeful because it means he covered all of the areas I requested.
I will keep you all posted but in the mean time I think it might be something to at least consider. My only out-of-pocket expense was my standard hospital co-pay which is $125 per day (2 days) plus my 4 doctor visits (2 for reviewing and 2 for pre-op) at $5 each. Grand total came to $270. Oh, I forgot parking and gas but you get the idea.
I'll keep you posted as to my recovery. MY VERY BEST TO ALL OF YOU!!!!
Sharon J.
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