Ostomy Issue Questions

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JanJan63
JanJan63 Member Posts: 2,478 Member

I've had my illeostomy for about a year and a half. I'm on a waiting list to have it reversed but the list is about a year long. This morning it leaked out from under the wafer. No big deal, it's happened the odd time. I went to replace it and discovered that it's now draining from a second spot. The area is under where I normally have it covered and is right next to where my skin starts. So I had to replace the appliance with it not covering that area which is now making it burn.

Has anyone else had this happen? I don't even know how it's possible. It looks like it's coming out of the end of the tube that will be reattached in surgery but which is not in use now. But I'm not sure. Or else a second spot has opened up for some reason.

Dammit, I've been putting off getting it reversed because I wanted to waint to make sure I didn't need one again and because it's been so nice to not have IBS. Also, I know that I could become almost bowel incontinent afterwards. It was bad enough before the cancer, I don't want to live with it even worse. And they said I could be in the hospital for a month if the bowels don't start working again right away. And they wanted me to be able to get around better than I've been able to after the blood clot and having to relearn to walk.

Has anyone else experienced having a second spot open up to drain from their stoma? Thanks!

Jan

Comments

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
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    call your doctor

    It would be best to call your doctor and explain what is happening and see if a visit is in order.

    Marie who loves kitties

  • John23
    John23 Member Posts: 2,122 Member
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    Ahhh…. My.

    Ahhh…. My.

     

    Could be one of two conditions.

     Since you say you have a “loop” Ostomy, one side expels the waste, and the other side remains connected to the rectum, etc. Waste can (and does) get into the section that’s headed towards your rectum and can back up. If the wafer/pouch is properly covering both ends of that intestine you would never know if that’s happening or not. If the waste is in there and the opening is now covered, the waste that’s in there can back up and get under the appliance.

     The other situation isn’t so kind….. You could have a fistula. A fistula is where the waste find another way out of your body by burrowing through the body until it finds a way out.. Sometimes near the stoma, sometimes in another area of the body. Fistulas can be painful. Let me rephrase that… Fistulas are painful. The waste burns the skin. Waste that travels through the intestines isn’t painful as long as it remains inside the intestine. That’s why a stoma is formed by pulling the intestine out and turning it inside-out to form the stoma. The waste can eat through the outside of the intestine, but can not do damage while inside it. </educational moment>

     Fistulas are a major problem. They’re not easily resolved. There are some remedies used in other countries that involve running a thread through the entire length of the fistula and irritating it enough to cause it to heal itself closed. (still=ouch).

     I would bet it’s just waste in the loop section oozing out under the appliance. If so, placing the appliance so it absolutely covers both ends of the stoma, should solve the immediate problem.

     As far as remaining an ostomate? There’s pros and cons. You have already figured out what the “pros” are for you, so let me tell you some of the “cons” (I’m good at doom saying)(ask PhilG)(haha)….

     When a section of intestine no longer has waste going through it, it suffers. It can deteriorate and disintegrate, and not without rotting while doing so. There is pain and illness that goes along with the process. (BTDT).

     The unused section of intestine will continue to produce mucus. The mucus increases when the intestine suffers or becomes irritated (don’t piss it off). No, seriously, the irritation will cause more mucus to be produced to keep the intestine lubricated. It’s the lack of nutrition from the waste, that causes it to deteriorate. With the Colon, there are suppositories that can be of help, along with flushes, enemas, etc.

     Just Google: rectal stump mucus secretion and read the thousands of comments and studies. The small intestine presents more of a problem if the resection section is not removed (as was in my situation). That problem causing me major problems until 2012/13, when another blockage caused the need for another resection. During that operation my new surgeon corrected all the mistakes of the last surgeon.

     But I also have been left with about one foot of colon resected and left in connected to the rectum since 2006. It’s been for the past year that I have been troubled with excessive mucus being ejected from the anus. The section of unused colon is suffering and degrading. It’s an embarrassment and very, very troubling. The “cure”, of course, would be to have another surgery to remove the colon, rectum, anus, and everything associated. Those that go that route end up with a “Barbie Butt”. My family would consider that to be “one less butt-hole to worry about”… (just sayin’)

     And (if that wasn’t enough), the colon uptakes minerals, nutrients, and hydration. Without it, you will always be slightly dehydrated and in need of things that your colon once provided. (magnesium, anyone?)

     So, while I hope that it’s not a fistula in your case, I also hope you take a day at a time and understand all the ramifications of all your options.

     Having an Ostomy isn’t all that terrible. In fact it, in some cases, can be a blessing.

     Weigh it all carefully. Ask questions at the UOAA board’s forum also; they’re like us here. Some with great opinions and information, and others like myself.

     Don’t worry, just get it checked out ASAP and move forward.

     My best to you,

     John

     

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
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    John23 said:

    Ahhh…. My.

    Ahhh…. My.

     

    Could be one of two conditions.

     Since you say you have a “loop” Ostomy, one side expels the waste, and the other side remains connected to the rectum, etc. Waste can (and does) get into the section that’s headed towards your rectum and can back up. If the wafer/pouch is properly covering both ends of that intestine you would never know if that’s happening or not. If the waste is in there and the opening is now covered, the waste that’s in there can back up and get under the appliance.

     The other situation isn’t so kind….. You could have a fistula. A fistula is where the waste find another way out of your body by burrowing through the body until it finds a way out.. Sometimes near the stoma, sometimes in another area of the body. Fistulas can be painful. Let me rephrase that… Fistulas are painful. The waste burns the skin. Waste that travels through the intestines isn’t painful as long as it remains inside the intestine. That’s why a stoma is formed by pulling the intestine out and turning it inside-out to form the stoma. The waste can eat through the outside of the intestine, but can not do damage while inside it. </educational moment>

     Fistulas are a major problem. They’re not easily resolved. There are some remedies used in other countries that involve running a thread through the entire length of the fistula and irritating it enough to cause it to heal itself closed. (still=ouch).

     I would bet it’s just waste in the loop section oozing out under the appliance. If so, placing the appliance so it absolutely covers both ends of the stoma, should solve the immediate problem.

     As far as remaining an ostomate? There’s pros and cons. You have already figured out what the “pros” are for you, so let me tell you some of the “cons” (I’m good at doom saying)(ask PhilG)(haha)….

     When a section of intestine no longer has waste going through it, it suffers. It can deteriorate and disintegrate, and not without rotting while doing so. There is pain and illness that goes along with the process. (BTDT).

     The unused section of intestine will continue to produce mucus. The mucus increases when the intestine suffers or becomes irritated (don’t piss it off). No, seriously, the irritation will cause more mucus to be produced to keep the intestine lubricated. It’s the lack of nutrition from the waste, that causes it to deteriorate. With the Colon, there are suppositories that can be of help, along with flushes, enemas, etc.

     Just Google: rectal stump mucus secretion and read the thousands of comments and studies. The small intestine presents more of a problem if the resection section is not removed (as was in my situation). That problem causing me major problems until 2012/13, when another blockage caused the need for another resection. During that operation my new surgeon corrected all the mistakes of the last surgeon.

     But I also have been left with about one foot of colon resected and left in connected to the rectum since 2006. It’s been for the past year that I have been troubled with excessive mucus being ejected from the anus. The section of unused colon is suffering and degrading. It’s an embarrassment and very, very troubling. The “cure”, of course, would be to have another surgery to remove the colon, rectum, anus, and everything associated. Those that go that route end up with a “Barbie Butt”. My family would consider that to be “one less butt-hole to worry about”… (just sayin’)

     And (if that wasn’t enough), the colon uptakes minerals, nutrients, and hydration. Without it, you will always be slightly dehydrated and in need of things that your colon once provided. (magnesium, anyone?)

     So, while I hope that it’s not a fistula in your case, I also hope you take a day at a time and understand all the ramifications of all your options.

     Having an Ostomy isn’t all that terrible. In fact it, in some cases, can be a blessing.

     Weigh it all carefully. Ask questions at the UOAA board’s forum also; they’re like us here. Some with great opinions and information, and others like myself.

     Don’t worry, just get it checked out ASAP and move forward.

     My best to you,

     John

     

    John, thanks for making me

    John, thanks for making me laugh a bit.

    I have a call in to my surgeon. I'm booked to see him at the end of the month but I want to know if I should see him sooner. I hate to be graphic but my stoma was putting out the corn I'd eaten last night and so was the second hole. At first I thought it was just stuck in a fold but then it spit out a couple more over the course of a few minutes. And then some liquid.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    I'm a little confused...

    you're on a waiting list a year and a half to get it reversed? Do you live outside the United States?

    I hope you can get a sooner appointment with the surgeon.

    I know when my brother had his ostomy, the skin around the ostomy was raw. They had to have wound care come in to help him and then they sent him to rehab in order to help him with the care of the ostomy.

    I hope things get better quickly.

    Lin

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Options

    I'm a little confused...

    you're on a waiting list a year and a half to get it reversed? Do you live outside the United States?

    I hope you can get a sooner appointment with the surgeon.

    I know when my brother had his ostomy, the skin around the ostomy was raw. They had to have wound care come in to help him and then they sent him to rehab in order to help him with the care of the ostomy.

    I hope things get better quickly.

    Lin

    Lin, I've had the ostomy for

    Lin, I've had the ostomy for a year and a half. I dont know if they'd have reversed it sooner but I had the blood clot in my lung in December and everything came to a halt for that. And I've been waiting to get mobile enough to be able to run to the bathroom after the surgery. Plus I wasn't in a rush because I didn't want to go back to having IBS, particularly if it's worse than ever. And I was in the hospital from December to the end of March and just didn't want to be back there, either.

    So I'm finally booked in with my surgeon on Sept 30 to arrange to have it reversed and I'm told there's a year waiting list to get it done. We live in Canada.

  • UncleBuddy
    UncleBuddy Member Posts: 1,019 Member
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    JanJan63 said:

    Lin, I've had the ostomy for

    Lin, I've had the ostomy for a year and a half. I dont know if they'd have reversed it sooner but I had the blood clot in my lung in December and everything came to a halt for that. And I've been waiting to get mobile enough to be able to run to the bathroom after the surgery. Plus I wasn't in a rush because I didn't want to go back to having IBS, particularly if it's worse than ever. And I was in the hospital from December to the end of March and just didn't want to be back there, either.

    So I'm finally booked in with my surgeon on Sept 30 to arrange to have it reversed and I'm told there's a year waiting list to get it done. We live in Canada.

    I'm glad you were able to set the date!

    I hope the IBS improves once the ostomy is reversed. Feel better.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    Options

    I'm glad you were able to set the date!

    I hope the IBS improves once the ostomy is reversed. Feel better.

    Thank you Uncle Buddy. I

    Thank you Uncle Buddy. I don't have a date for it, just for the initial consult regarding having it reversed. I'm still waiting to hear back from my surgeon's office. My husband wants me to try to get in with my family doctor but I think it's a waste of time. This isn't something he specializes in and I think that's what I need.