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On October 10 2013 15:30 TheSwedishFan wrote:Thanks that's really kind of you. In my case i'll get a Kock pouch. I'm really bad at explaining things so i'll just paste some information. "The Kock Pouch is an example of a continent ileostomy, so called because the contents of the small intestine stay within the body until the patient decides to empty it. The Kock pouch consists of a reservoir constructed from the small intestine, and a nipple valve which keeps the contents of the reservoir inside the body, and permits entry of an external catheter to drain the pouch when desired. The catheter is a simple hollow plastic tube. It is inserted about 5 inches into the stoma, and the contents of the reservoir come out on their own. Immediately after surgery the pouch is emptied about every three hours, because the reservoir is small. But following the surgery it grows in size until it can be emptied only 3 or 4 times a day, approximately 2 months after surgery. In the absence of late night meals, it is rare to have to get up at night to empty. This is in contrast to some of the alternative surgeries such as the J pouch, where night time emptyings are generally necessary. In between emptyings, the stoma is covered with a piece of gauze to absorb the mucus coming from it. The stoma is typically about 1/2 inch in diameter."- source http://alumnus.caltech.edu/~pls/kock/It's not really a stoma. It's more a reservoar inside the body. So i dont have to deal with a bag hanging from my stomach. There will be a hole in the stomach that is covered with a bandage. Here's a picture of what it'll hopefully look like + Show Spoiler +That being said. I haven't really decided if i want to go through with the operation. My doctor says it'll make my life liveable and it would increase the the quality. However, i'm not sure how i would coupe living a life where i'm referenced as "the guy with a stoma". There is no going back if i make the call that i want a stoma. KOCK POUCH? LOL? I have no idea what a stoma is, like many others here. I assume it is some sort of temp fake bladder for some condition invovling a surgical procedure?
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Lalalaland34496 Posts
On October 10 2013 21:22 B.I.G. wrote:
Isn't Crohn's also the desease where you get the regular dyalisis (if that's how you spell it)? I think my friend's brother has the same ailment and lives relatively normally with medicine and aforementioned dyalisis...
No. Dialysis is more commonly for kidney related problems, while Crohn's affects your bowels.
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Lalalaland34496 Posts
On October 10 2013 21:35 MarlieChurphy wrote:Show nested quote +On October 10 2013 15:30 TheSwedishFan wrote:On October 09 2013 23:35 lichter wrote:
I googled stoma
I regret it. Thanks that's really kind of you. In my case i'll get a Kock pouch. I'm really bad at explaining things so i'll just paste some information. "The Kock Pouch is an example of a continent ileostomy, so called because the contents of the small intestine stay within the body until the patient decides to empty it. The Kock pouch consists of a reservoir constructed from the small intestine, and a nipple valve which keeps the contents of the reservoir inside the body, and permits entry of an external catheter to drain the pouch when desired. The catheter is a simple hollow plastic tube. It is inserted about 5 inches into the stoma, and the contents of the reservoir come out on their own. Immediately after surgery the pouch is emptied about every three hours, because the reservoir is small. But following the surgery it grows in size until it can be emptied only 3 or 4 times a day, approximately 2 months after surgery. In the absence of late night meals, it is rare to have to get up at night to empty. This is in contrast to some of the alternative surgeries such as the J pouch, where night time emptyings are generally necessary. In between emptyings, the stoma is covered with a piece of gauze to absorb the mucus coming from it. The stoma is typically about 1/2 inch in diameter."- source http://alumnus.caltech.edu/~pls/kock/It's not really a stoma. It's more a reservoar inside the body. So i dont have to deal with a bag hanging from my stomach. There will be a hole in the stomach that is covered with a bandage. Here's a picture of what it'll hopefully look like + Show Spoiler +That being said. I haven't really decided if i want to go through with the operation. My doctor says it'll make my life liveable and it would increase the the quality. However, i'm not sure how i would coupe living a life where i'm referenced as "the guy with a stoma". There is no going back if i make the call that i want a stoma. KOCK POUCH? LOL? I have no idea what a stoma is, like many others here. I assume it is some sort of temp fake bladder for some condition invovling a surgical procedure?
Sometimes temporary, sometimes permanent. It's not for the bladder, it's for the rectum.
Simplified, they cut a hole in your abdomen, disconnect your intestine from your anus and connect it to the hole. Faeces then exit through that hole instead of your anus.
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On October 10 2013 21:37 Firebolt145 wrote:Show nested quote +On October 10 2013 21:35 MarlieChurphy wrote:On October 10 2013 15:30 TheSwedishFan wrote:On October 09 2013 23:35 lichter wrote:
I googled stoma
I regret it. Thanks that's really kind of you. In my case i'll get a Kock pouch. I'm really bad at explaining things so i'll just paste some information. "The Kock Pouch is an example of a continent ileostomy, so called because the contents of the small intestine stay within the body until the patient decides to empty it. The Kock pouch consists of a reservoir constructed from the small intestine, and a nipple valve which keeps the contents of the reservoir inside the body, and permits entry of an external catheter to drain the pouch when desired. The catheter is a simple hollow plastic tube. It is inserted about 5 inches into the stoma, and the contents of the reservoir come out on their own. Immediately after surgery the pouch is emptied about every three hours, because the reservoir is small. But following the surgery it grows in size until it can be emptied only 3 or 4 times a day, approximately 2 months after surgery. In the absence of late night meals, it is rare to have to get up at night to empty. This is in contrast to some of the alternative surgeries such as the J pouch, where night time emptyings are generally necessary. In between emptyings, the stoma is covered with a piece of gauze to absorb the mucus coming from it. The stoma is typically about 1/2 inch in diameter."- source http://alumnus.caltech.edu/~pls/kock/It's not really a stoma. It's more a reservoar inside the body. So i dont have to deal with a bag hanging from my stomach. There will be a hole in the stomach that is covered with a bandage. Here's a picture of what it'll hopefully look like + Show Spoiler +That being said. I haven't really decided if i want to go through with the operation. My doctor says it'll make my life liveable and it would increase the the quality. However, i'm not sure how i would coupe living a life where i'm referenced as "the guy with a stoma". There is no going back if i make the call that i want a stoma. KOCK POUCH? LOL? I have no idea what a stoma is, like many others here. I assume it is some sort of temp fake bladder for some condition invovling a surgical procedure? Sometimes temporary, sometimes permanent. It's not for the bladder, it's for the rectum. Simplified, they cut a hole in your abdomen, disconnect your intestine from your anus and connect it to the hole. Faeces then exit through that hole instead of your anus.
So like, would your ass become weak and dried out? Do you fart out the hole too? Say your gf had a stoma, would anal be more acceptable since no mistakes could happen?
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Lalalaland34496 Posts
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On October 10 2013 22:12 MarlieChurphy wrote:
So like, would your ass become weak and dried out? Do you fart out the hole too? Say your gf had a stoma, would anal be more acceptable since no mistakes could happen?
About the farts, yes it seems: http://www.crohnsforum.com/showthread.php?t=11911
Couldn't find answers to tour other questions.
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Aotearoa39261 Posts
Having had an ileostomy and a stoma for roughly 5 months, I can say that that time of my life was really shitty. I had an exterior bag and an allergic reaction to whatever the antibacterial wipe was. The nurses thought it was a reaction to the bag adhesive so I had to try a ton of different bags which was really annoying. Moreover, because my skin was reacting lots of bumps had formed on the surface and made it difficult for the bag to stick. With that said, before the allergic reaction happened (~2 weeks) not having the symptoms of an IBD (I had ulcerative colitis) was actually incredible and the bag gave you complete flexibility over things that were previously incredibly inflexible.
That said, I'd do it all over again if I had to because life post-colon is amazing. Granted, we're not in the same boat because Crohns is more of a bastard than UC, but in the almost 2 years I've had a J-pouch it's been incredible. It's really difficult to put into words how much better my life is from when I was sick to life without a colon. Colons can be super annoying but my pouch has never once been a pain.
On October 10 2013 22:12 MarlieChurphy wrote:Show nested quote +On October 10 2013 21:37 Firebolt145 wrote:On October 10 2013 21:35 MarlieChurphy wrote:On October 10 2013 15:30 TheSwedishFan wrote:On October 09 2013 23:35 lichter wrote:
I googled stoma
I regret it. Thanks that's really kind of you. In my case i'll get a Kock pouch. I'm really bad at explaining things so i'll just paste some information. "The Kock Pouch is an example of a continent ileostomy, so called because the contents of the small intestine stay within the body until the patient decides to empty it. The Kock pouch consists of a reservoir constructed from the small intestine, and a nipple valve which keeps the contents of the reservoir inside the body, and permits entry of an external catheter to drain the pouch when desired. The catheter is a simple hollow plastic tube. It is inserted about 5 inches into the stoma, and the contents of the reservoir come out on their own. Immediately after surgery the pouch is emptied about every three hours, because the reservoir is small. But following the surgery it grows in size until it can be emptied only 3 or 4 times a day, approximately 2 months after surgery. In the absence of late night meals, it is rare to have to get up at night to empty. This is in contrast to some of the alternative surgeries such as the J pouch, where night time emptyings are generally necessary. In between emptyings, the stoma is covered with a piece of gauze to absorb the mucus coming from it. The stoma is typically about 1/2 inch in diameter."- source http://alumnus.caltech.edu/~pls/kock/It's not really a stoma. It's more a reservoar inside the body. So i dont have to deal with a bag hanging from my stomach. There will be a hole in the stomach that is covered with a bandage. Here's a picture of what it'll hopefully look like + Show Spoiler +That being said. I haven't really decided if i want to go through with the operation. My doctor says it'll make my life liveable and it would increase the the quality. However, i'm not sure how i would coupe living a life where i'm referenced as "the guy with a stoma". There is no going back if i make the call that i want a stoma. KOCK POUCH? LOL? I have no idea what a stoma is, like many others here. I assume it is some sort of temp fake bladder for some condition invovling a surgical procedure? Sometimes temporary, sometimes permanent. It's not for the bladder, it's for the rectum. Simplified, they cut a hole in your abdomen, disconnect your intestine from your anus and connect it to the hole. Faeces then exit through that hole instead of your anus. So like, would your ass become weak and dried out? Do you fart out the hole too? Say your gf had a stoma, would anal be more acceptable since no mistakes could happen?
Ass doesn't become weak or dried out. The rectal stump still produces mucus so sometimes you have to take a mucus shit. Anal with a stump is a no-go. The end of the stump is stapled together and if that breaks then thats unbelievably bad.
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On October 10 2013 23:19 Plexa wrote:
Having had an ileostomy and a stoma for roughly 5 months, I can say that that time of my life was really shitty. I had an exterior bag and an allergic reaction to whatever the antibacterial wipe was. The nurses thought it was a reaction to the bag adhesive so I had to try a ton of different bags which was really annoying. Moreover, because my skin was reacting lots of bumps had formed on the surface and made it difficult for the bag to stick. With that said, before the allergic reaction happened (~2 weeks) not having the symptoms of an IBD (I had ulcerative colitis) was actually incredible and the bag gave you complete flexibility over things that were previously incredibly inflexible.
That said, I'd do it all over again if I had to because life post-colon is amazing. Granted, we're not in the same boat because Crohns is more of a bastard than UC, but in the almost 2 years I've had a J-pouch it's been incredible. It's really difficult to put into words how much better my life is from when I was sick to life without a colon. Colons can be super annoying but my pouch has never once been a pain.
I got my symptoms first when i was 15. Now almost 10 years later i'm pretty tired of this shit. In the beginning it wasn't that bad. My ass only hurt like hell and i had some fevers. However, as time went by scar tissue started to build up and that make my rectum really tight and i got more and more cramps. The last year have been a total hell.
Right now it's really tempting to just say fuck it and get rid of both my rectum and my colon. The only thing that is stopping me is the fear that i will be seen as some type of gross thing with a hole in my stomach.
How did the people around you react to you having a bag on your stomach?
Did you try to hide it?
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That sucks man. I wish you the best Stoma.
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Aotearoa39261 Posts
On October 13 2013 21:47 TheSwedishFan wrote:Show nested quote +On October 10 2013 23:19 Plexa wrote:
Having had an ileostomy and a stoma for roughly 5 months, I can say that that time of my life was really shitty. I had an exterior bag and an allergic reaction to whatever the antibacterial wipe was. The nurses thought it was a reaction to the bag adhesive so I had to try a ton of different bags which was really annoying. Moreover, because my skin was reacting lots of bumps had formed on the surface and made it difficult for the bag to stick. With that said, before the allergic reaction happened (~2 weeks) not having the symptoms of an IBD (I had ulcerative colitis) was actually incredible and the bag gave you complete flexibility over things that were previously incredibly inflexible.
That said, I'd do it all over again if I had to because life post-colon is amazing. Granted, we're not in the same boat because Crohns is more of a bastard than UC, but in the almost 2 years I've had a J-pouch it's been incredible. It's really difficult to put into words how much better my life is from when I was sick to life without a colon. Colons can be super annoying but my pouch has never once been a pain.
I got my symptoms first when i was 15. Now almost 10 years later i'm pretty tired of this shit. In the beginning it wasn't that bad. My ass only hurt like hell and i had some fevers. However, as time went by scar tissue started to build up and that make my rectum really tight and i got more and more cramps. The last year have been a total hell. Right now it's really tempting to just say fuck it and get rid of both my rectum and my colon. The only thing that is stopping me is the fear that i will be seen as some type of gross thing with a hole in my stomach. How did the people around you react to you having a bag on your stomach? Did you try to hide it?
Hah yeah man I know what you mean. My symptoms first started when I was 19 and they were pretty mild and weren't given me too much problem. Although my gf got pretty annoyed when I'd have to run off in pain to the toilet haha. Things steadily got worse for me until I was just shitting blood everywhere and my gf forced me (back) into hospital where I continued to deteriorate. Up until that point I had been debating about whether or not to have the operation, my doctor had advised me to do it (after initial treatments fail its the go to treatment for UC patients because its curative, unlike Crohns) but losing a colon sounded really weird and made me really uneasy. The bag was also scaring me a lot because it seemed really annoying. The only reason I had the operation when I went into hospital was because the doctors basically said if you don't get it you're doing to die -- that made the decision pretty simple rofl.
This is what I experienced with the bag:
- Your confidence is going to take a hit.
For the first few weeks I felt inhuman with the stoma. Living with one takes some time to get used to; not necessarily in terms of the mechanics, but just being mentally okay with having one. I don't think I ever truly accepted the stoma probably in part to my allergic reaction and the fact that I knew it was only a temporary thing. You'll be paranoid that the bag will come off or start peeling away, getting over that paranoia takes some time.
- It's not noticeable.
About 6 weeks after my operation I was back tutoring/teaching at university and no one could notice it -- aside from the times it would make noise (they're really noisy rofl) but even then it just sounds like you're really hungry hah. The bags are very good at concealing any odor, until they're opened of course. The people I did explain it to never saw me as some kind of freak, as far as I could tell, rather they seemed to be genuinely concerned!
- It doesn't stop you doing things.
Things may take a little more preparation but there isn't anything that you can't do.
- Sleeping was annoying.
I sleep on my side, but with the bag I felt uncomfortable lying on my side for a long periods of time so slept on my back. That was annoying. The bag will hold during the night and will more or less stay attached assuming its not nearing the end of it's life (2-3 days was normal for me) and while my skin was normal, it never came off despite me being paranoid that it would. Only when my skin was reacting and I couldn't get a proper stick in the first place did things start to peel.
- The people around me were supportive.
Not all of them were totally comfortable seeing my ileum (my girlfriend included) but that didn't stop them being supportive. After you get past a few training bags (which are partially see through) the bags are opaque and only you will see the stoma (and stoma nurses). Thus no one has to see if it they don't want to. Even my friend who faints when she sees blood was supportive haha. As I was already in a long term relationship there wasn't any issue for my gf, she was just relieved to not have to deal with the UC symptoms anymore.
There was another person on TL who had the operation before me and I was fortunate enough to hear of his experiences. I believe his experiences are rather similar to what I've presented. However, unlike me he was single, and the bag had really taken a lot out of his confidence. This stopped him from even pursuing any relationships until he had a pouch surgery. All I'm trying to say here is that the biggest challenge with the bag is entirely mental. There's no limits with a bag except those you place yourself. Mentally accepting it isn't easy, but once it's done I'm sure things will be fine.
If you are going for a pouch surgery (sounded like you're going for a K-pouch? I have a J-pouch!) then the bag is just a transitional step between IBD ruining your life (yeah, it's ruining it -- but you'll only realise that once the symptoms have subsided) and a better life. Assuming the pouch functions well it will be a massive improvement and will make any problems with the bag worth it.
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On October 10 2013 22:33 ulan-bat wrote:Show nested quote +On October 10 2013 22:12 MarlieChurphy wrote:
So like, would your ass become weak and dried out? Do you fart out the hole too? Say your gf had a stoma, would anal be more acceptable since no mistakes could happen? About the farts, yes it seems: http://www.crohnsforum.com/showthread.php?t=11911Couldn't find answers to tour other questions.
On October 10 2013 23:19 Plexa wrote:Having had an ileostomy and a stoma for roughly 5 months, I can say that that time of my life was really shitty. I had an exterior bag and an allergic reaction to whatever the antibacterial wipe was. The nurses thought it was a reaction to the bag adhesive so I had to try a ton of different bags which was really annoying. Moreover, because my skin was reacting lots of bumps had formed on the surface and made it difficult for the bag to stick. With that said, before the allergic reaction happened (~2 weeks) not having the symptoms of an IBD (I had ulcerative colitis) was actually incredible and the bag gave you complete flexibility over things that were previously incredibly inflexible. That said, I'd do it all over again if I had to because life post-colon is amazing. Granted, we're not in the same boat because Crohns is more of a bastard than UC, but in the almost 2 years I've had a J-pouch it's been incredible. It's really difficult to put into words how much better my life is from when I was sick to life without a colon. Colons can be super annoying but my pouch has never once been a pain. Show nested quote +On October 10 2013 22:12 MarlieChurphy wrote:On October 10 2013 21:37 Firebolt145 wrote:On October 10 2013 21:35 MarlieChurphy wrote:On October 10 2013 15:30 TheSwedishFan wrote:On October 09 2013 23:35 lichter wrote:
I googled stoma
I regret it. Thanks that's really kind of you. In my case i'll get a Kock pouch. I'm really bad at explaining things so i'll just paste some information. "The Kock Pouch is an example of a continent ileostomy, so called because the contents of the small intestine stay within the body until the patient decides to empty it. The Kock pouch consists of a reservoir constructed from the small intestine, and a nipple valve which keeps the contents of the reservoir inside the body, and permits entry of an external catheter to drain the pouch when desired. The catheter is a simple hollow plastic tube. It is inserted about 5 inches into the stoma, and the contents of the reservoir come out on their own. Immediately after surgery the pouch is emptied about every three hours, because the reservoir is small. But following the surgery it grows in size until it can be emptied only 3 or 4 times a day, approximately 2 months after surgery. In the absence of late night meals, it is rare to have to get up at night to empty. This is in contrast to some of the alternative surgeries such as the J pouch, where night time emptyings are generally necessary. In between emptyings, the stoma is covered with a piece of gauze to absorb the mucus coming from it. The stoma is typically about 1/2 inch in diameter."- source http://alumnus.caltech.edu/~pls/kock/It's not really a stoma. It's more a reservoar inside the body. So i dont have to deal with a bag hanging from my stomach. There will be a hole in the stomach that is covered with a bandage. Here's a picture of what it'll hopefully look like + Show Spoiler +That being said. I haven't really decided if i want to go through with the operation. My doctor says it'll make my life liveable and it would increase the the quality. However, i'm not sure how i would coupe living a life where i'm referenced as "the guy with a stoma". There is no going back if i make the call that i want a stoma. KOCK POUCH? LOL? I have no idea what a stoma is, like many others here. I assume it is some sort of temp fake bladder for some condition invovling a surgical procedure? Sometimes temporary, sometimes permanent. It's not for the bladder, it's for the rectum. Simplified, they cut a hole in your abdomen, disconnect your intestine from your anus and connect it to the hole. Faeces then exit through that hole instead of your anus. So like, would your ass become weak and dried out? Do you fart out the hole too? Say your gf had a stoma, would anal be more acceptable since no mistakes could happen? Ass doesn't become weak or dried out. The rectal stump still produces mucus so sometimes you have to take a mucus shit. Anal with a stump is a no-go. The end of the stump is stapled together and if that breaks then thats unbelievably bad.
Very enlightening.
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Aotearoa39261 Posts
It's probably worth adding that as I was always going to have a temporary ileostomy that they left the rectal stump in place as they planned to build a pouch and connect everything back up. Permanent ileostomies will sew your ass shut. People who have had that done often report needing to take a "phantom dump" similar to how people who lose limbs can sometimes feel "phantom limbs" attached to them.
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EPT![[image loading]](http://alumnus.caltech.edu/~pls/kock/pict.jpg)
