Comments on: Our Message Board http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Mon, 06 Feb 2012 19:47:06 +0000 hourly 1 http://wordpress.org/?v=3.3 By: Dennis http://www.jpouch.net/surgery-photos-your-story/#comment-81982 Dennis Sun, 29 Jan 2012 20:09:54 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81982 Joy, First of all I have two young children at home, that is why I use Kandoo wipes. I had tried pretty much all the other types but these seem to work the best and they are flushible. Buy the non-scented variety. They are PH balanced and work very well to kill the acid when using. They also seem to be the wettest wipes to buy. This is the first step, remove any acid from the area. Pat your butt dry with a towel and then apply baby powder. This step helps get rid of moisture. Moisture is just as much to blame for the burn. For tissue to heal, it wants to be dry. Just like dealing with a babie's diaper rash. Since we are adults, we tend to forget how to deal with our own trouble. From my experience, do this every time until things get better. Around 4-5 days. This has to be your ritual until it gets better. Avoid the topicals for a little while. They help only when tissue is a little bit raw. Prilosec helped me get my acid level down until I started to figure out my diet. Sugars and fats tend to cause more burn. High acid foods will to. Any type of melon is awsome to eat and easy to digest. Another trick of mine is to eat alot of carbs. Chunky soup and crackers worked will with me as does hamburger helper with lots of bread and also tombstone pizza(pizzaria type tends to burn, too much sauce). Just eat and learn and figure out cause an effect with your body. Drink plenty of water, about 6oz. very often, but only drink when thirsty. This tends to force your new system to absorb mor fluid in you pouch. It took my body 9 months before things stablized with absorption. and another 9 to get my diet dialed in. Keep your salt and sugar levels up, that will help you feel better. Natural sugars from things like friut and honey are the easiest for your body. Joy, First of all I have two young children at home, that is why I use Kandoo wipes. I had tried pretty much all the other types but these seem to work the best and they are flushible. Buy the non-scented variety. They are PH balanced and work very well to kill the acid when using. They also seem to be the wettest wipes to buy. This is the first step, remove any acid from the area. Pat your butt dry with a towel and then apply baby powder. This step helps get rid of moisture. Moisture is just as much to blame for the burn. For tissue to heal, it wants to be dry. Just like dealing with a babie’s diaper rash. Since we are adults, we tend to forget how to deal with our own trouble. From my experience, do this every time until things get better. Around 4-5 days. This has to be your ritual until it gets better. Avoid the topicals for a little while. They help only when tissue is a little bit raw. Prilosec helped me get my acid level down until I started to figure out my diet. Sugars and fats tend to cause more burn. High acid foods will to. Any type of melon is awsome to eat and easy to digest. Another trick of mine is to eat alot of carbs. Chunky soup and crackers worked will with me as does hamburger helper with lots of bread and also tombstone pizza(pizzaria type tends to burn, too much sauce). Just eat and learn and figure out cause an effect with your body. Drink plenty of water, about 6oz. very often, but only drink when thirsty. This tends to force your new system to absorb mor fluid in you pouch. It took my body 9 months before things stablized with absorption. and another 9 to get my diet dialed in. Keep your salt and sugar levels up, that will help you feel better. Natural sugars from things like friut and honey are the easiest for your body.

]]> By: Joy http://www.jpouch.net/surgery-photos-your-story/#comment-81679 Joy Sat, 28 Jan 2012 02:25:17 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81679 Dennis, any suggestions you have will be greatly appreciated. What are your diet tricks?  Do you now do the same ritual  after each bowel movement?  I am doing something of the same except have never used powder or Kandoo wipes.  I do the ritual of first wet TP and then a wipe with aloe, then damp baby wash cloth to clean off the wipe wet blotting with all of these.  Then I use Vaseline or Desitin. If it is not horribly bad I will use Calmoseptine.  Please feel free to share any info.  Thanks. Joy Dennis, any suggestions you have will be greatly appreciated. What are your diet tricks?  Do you now do the same ritual  after each bowel movement?  I am doing something of the same except have never used powder or Kandoo wipes.  I do the ritual of first wet TP and then a wipe with aloe, then damp baby wash cloth to clean off the wipe wet blotting with all of these.  Then I use Vaseline or Desitin. If it is not horribly bad I will use Calmoseptine.  Please feel free to share any info.  Thanks. Joy

]]> By: Dennis http://www.jpouch.net/surgery-photos-your-story/#comment-81650 Dennis Fri, 27 Jan 2012 22:20:47 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81650 Joy, First off lets deal with the initial burn. For me, Kanndoo wet wipes worked good because they are fairly wet. First I wiped with regular tp then I use a wet wipe. When was raw I then patted dry with a towel and used baby powder on my butt. Applied the powder on the tp then patted my butt. The burning is chemical AND moisture burn. DO NOT use a medicated powder!!! The medication made my sphincter relax and it caused a mess. The wipes remove the acid and the powder dries the butt. I use A&D ointment very rarely now. I can help you with diet knowledge on what causes high acid an tricks to teach your body to absorb more of it. Kanndoo wipes are at Target. I can tell you some diet tricks to help. First I used Prilosec for a month to help. Respond if you would like more help. My 20/20 hind sight might help you. Joy, First off lets deal with the initial burn. For me, Kanndoo wet wipes worked good because they are fairly wet. First I wiped with regular tp then I use a wet wipe. When was raw I then patted dry with a towel and used baby powder on my butt. Applied the powder on the tp then patted my butt. The burning is chemical AND moisture burn. DO NOT use a medicated powder!!! The medication made my sphincter relax and it caused a mess. The wipes remove the acid and the powder dries the butt. I use A&D ointment very rarely now. I can help you with diet knowledge on what causes high acid an tricks to teach your body to absorb more of it. Kanndoo wipes are at Target. I can tell you some diet tricks to help. First I used Prilosec for a month to help. Respond if you would like more help.
My 20/20 hind sight might help you.

]]> By: K Carlsen http://www.jpouch.net/surgery-photos-your-story/#comment-81356 K Carlsen Thu, 26 Jan 2012 16:25:44 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81356 My name is Kim. I am 42 years old. I was diagnosed with UC Ulcerative Colitis in 1997, a month after having my first child. It was not hard in the early years of my disease to keep it under control. In the last three years I have had several really bad flair ups of UC, leading up to needing surgery in July 2011. It is now January 2012 and I am basically starting all over again with reconstructive surgery. My surgion could not figure out what was wrong, and referred me to the Cleveland Clinic. They determined that my JPouch was not working and it was determined there was a leak that needed to be addressed ASAP. I needed to get a Seton incerted on 1/18/12 to drain the infection. I was devastated. I then had surgery 1/20/12 to create another temporary ileostomy to allow the JPouch time to heal. I will need to have this along with the seton for at least the next 6 months. At the 6 month mark, I will have another major surgery to fix the JPouch (reconstruct) and remove the Seton. Right now it sounds awful knowing I need to recovery now and I'll be doing this all over again in 6 months. After the next surgery, if all goes well, I will have another take down surgery 3 months later. I will need to go through the process of getting reconnected all over again. I know I have no choice and need to just take one day at a time. It's hard to have come so far, only to have to do it all over again. I have lost over 30 lbs, so I look at the next several months as a time to heal, and a time to reconnect with my family. I remain optimistic that things will work out for me and I will get better. I always could be worse. Please respond if you have a similar situation or have questions. You can follow my blog at http://mystorykcarlsen.blogspot.com/ My name is Kim. I am 42 years old. I was diagnosed with UC Ulcerative Colitis in 1997, a month after having my first child. It was not hard in the early years of my disease to keep it under control. In the last three years I have had several really bad flair ups of UC, leading up to needing surgery in July 2011. It is now January 2012 and I am basically starting all over again with reconstructive surgery. My surgion could not figure out what was wrong, and referred me to the Cleveland Clinic. They determined that my JPouch was not working and it was determined there was a leak that needed to be addressed ASAP. I needed to get a Seton incerted on 1/18/12 to drain the infection. I was devastated. I then had surgery 1/20/12 to create another temporary ileostomy to allow the JPouch time to heal. I will need to have this along with the seton for at least the next 6 months. At the 6 month mark, I will have another major surgery to fix the JPouch (reconstruct) and remove the Seton. Right now it sounds awful knowing I need to recovery now and I’ll be doing this all over again in 6 months. After the next surgery, if all goes well, I will have another take down surgery 3 months later. I will need to go through the process of getting reconnected all over again. I know I have no choice and need to just take one day at a time. It’s hard to have come so far, only to have to do it all over again. I have lost over 30 lbs, so I look at the next several months as a time to heal, and a time to reconnect with my family. I remain optimistic that things will work out for me and I will get better. I always could be worse. Please respond if you have a similar situation or have questions. You can follow my blog at http://mystorykcarlsen.blogspot.com/

]]> By: Michael http://www.jpouch.net/surgery-photos-your-story/#comment-81225 Michael Thu, 26 Jan 2012 02:06:57 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81225 Hi Merry,I'm 18 months since my surgery and have seen blood a couple times. Most recently was after I was on a flight to Las Vegas. I had the same thing on the way back, so it may have something to do with the pressure changes. Either that or it was being squeezed into a middle seat that did it. Hi Merry,I’m 18 months since my surgery and have seen blood a couple times. Most recently was after I was on a flight to Las Vegas. I had the same thing on the way back, so it may have something to do with the pressure changes. Either that or it was being squeezed into a middle seat that did it.

]]> By: Joy http://www.jpouch.net/surgery-photos-your-story/#comment-81223 Joy Thu, 26 Jan 2012 02:04:21 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81223 Thanks for your suggestions!!  This is a great site. When you live with the issue we know more than anyone about what helps. Thanks for your suggestions!!  This is a great site. When you live with the issue we know more than anyone about what helps.

]]> By: Nick http://www.jpouch.net/surgery-photos-your-story/#comment-81205 Nick Wed, 25 Jan 2012 23:04:09 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81205 I didnt see blood for a while, then every once in a while or for a few days in a row there would be a liitle blood just on the tissue or a little in toilet. my doc said dont worry, its periodic...I love wet wipes!! I have for years. there gentle, and leave ya squeaky clean...Be gentle when ya wipe too..my dentist used to tell me I brushed my teeth to hard, I can imagine what Ive been doing to my butt all these years..lol..I also notice a little blood if I hold it for to long. I was told to try and hold it so that my pouche would expand and I wouldnt go as much throughout day but Dont hold it to to long! My rule is only use plane bathroom once if I can help it. I still get butt burn here and there, but I love my Desitin butt paste.Calmoseptine that was thankfully recommended on here is great to. its got a menthol to it. I didnt see blood for a while, then every once in a while or for a few days in a row there would be a liitle blood just on the tissue or a little in toilet. my doc said dont worry, its periodic…I love wet wipes!! I have for years. there gentle, and leave ya squeaky clean…Be gentle when ya wipe too..my dentist used to tell me I brushed my teeth to hard, I can imagine what Ive been doing to my butt all these years..lol..I also notice a little blood if I hold it for to long. I was told to try and hold it so that my pouche would expand and I wouldnt go as much throughout day but Dont hold it to to long! My rule is only use plane bathroom once if I can help it. I still get butt burn here and there, but I love my Desitin butt paste.Calmoseptine that was thankfully recommended on here is great to. its got a menthol to it.

]]> By: Kanaka http://www.jpouch.net/surgery-photos-your-story/#comment-81170 Kanaka Wed, 25 Jan 2012 18:43:23 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81170 Hi Joy, Saw your comment and was wondering if you have tried benefiber? I was like what you are going through, but benefiber helped me a lot. It prevent the butt burn. I now have raspberries, nuts etc for fiber, along with calmoseptin and VSL at time. Hope u feel better. Kanaka Hi Joy,
Saw your comment and was wondering if you have tried benefiber? I was like what you are going through, but benefiber helped me a lot. It prevent the butt burn.
I now have raspberries, nuts etc for fiber, along with calmoseptin and VSL at time.
Hope u feel better.
Kanaka

]]> By: Joy http://www.jpouch.net/surgery-photos-your-story/#comment-81012 Joy Wed, 25 Jan 2012 01:47:02 +0000 http://ucstory.wordpress.com/?page_id=308#comment-81012 Michael, Any suggestions to help the butt burn.  My takedown was August 2011. I have an average of 8 bowel movements daily and have tried Vaseline, Calmospetine and Desitin. I put something on my bottom every time I go to the bathroom.  Also I spend alot of time soaking in the tub. There are days I had rather not eat because of having to go to the bathroom.  I think if I can get the butt burn under control I will  feel better. Joy Michael,

Any suggestions to help the butt burn.  My takedown was August 2011. I have an average of 8 bowel movements daily and have tried Vaseline, Calmospetine and Desitin. I put something on my bottom every time I go to the bathroom.  Also I spend alot of time soaking in the tub. There are days I had rather not eat because of having to go to the bathroom.  I think if I can get the butt burn under control I will  feel better.

Joy

]]> By: Mark Eastabrooks http://www.jpouch.net/surgery-photos-your-story/#comment-80654 Mark Eastabrooks Mon, 23 Jan 2012 15:37:53 +0000 http://ucstory.wordpress.com/?page_id=308#comment-80654 Hi Merry, I am 18 months out from my reversal. I notice some bright red blood on the toilet paper at least once or twice a week after one of my extended bathroom sessions. This has been happening since the beginning. I talked to my surgeon about it and he was not the least bit concerned. He said that it is from the anastomosis or connection point where he made the connection to my sphincter mussels. I know it is alarming but it does not sound unusual to me. I would speak to your surgeon about it just to be on the safe side. Incidentally, how low was your cancer in the rectum? Take care and I will keep you in my prayers. Hi Merry, I am 18 months out from my reversal. I notice some bright red blood on the toilet paper at least once or twice a week after one of my extended bathroom sessions. This has been happening since the beginning. I talked to my surgeon about it and he was not the least bit concerned. He said that it is from the anastomosis or connection point where he made the connection to my sphincter mussels. I know it is alarming but it does not sound unusual to me. I would speak to your surgeon about it just to be on the safe side. Incidentally, how low was your cancer in the rectum? Take care and I will keep you in my prayers.

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