Comments on: Photos 1: Colectomy http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Tue, 16 Mar 2010 22:37:56 +0000 http://wordpress.org/?v=2.9.1 hourly 1 By: Thom http://www.jpouch.net/photos/surgery-1/#comment-6933 Thom Tue, 16 Mar 2010 22:09:46 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6933 Dear Mark, I had very similar surgery's done in 1996. I can sure relate to most of your story. Getting used to the temporary colostomy is a challenge and something very few people realize how much work it is to keep clean and maintain. The first time I released gas in my colostomy bag in a company meeting, I was mortified. I have since come to realize that it's not a big deal. I have had 2 perforations in my pull through pouch since the original surgery's but it's been more then ten years with the only remaining challenge is the shortened bowel length and the almost constant diarrhea. I've tried a lot of things but nothing seems to slow things down. I wish you well and hope things are going well with your recovery. Dear Mark, I had very similar surgery’s done in 1996. I can sure relate to most of your story. Getting used to the temporary colostomy is a challenge and something very few people realize how much work it is to keep clean and maintain. The first time I released gas in my colostomy bag in a company meeting, I was mortified. I have since come to realize that it’s not a big deal. I have had 2 perforations in my pull through pouch since the original surgery’s but it’s been more then ten years with the only remaining challenge is the shortened bowel length and the almost constant diarrhea. I’ve tried a lot of things but nothing seems to slow things down. I wish you well and hope things are going well with your recovery.

]]> By: meghan http://www.jpouch.net/photos/surgery-1/#comment-6788 meghan Fri, 26 Feb 2010 07:43:05 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6788 Dear Megan and Mark I just wanted to thank you for sharing this intimate story with everyone. I am a nursing student in WA and I was trying to get more information on colostomies and how to care for patients with them and it was so helpful to hear about it directly from a patient point of view. And then to see all the people who have written to you that this has helped them too. Amazing. I hope all is going well with you both and thankyou again. This is the kind of information all nurses should have so they can give the best care to their patients. Dear Megan and Mark

I just wanted to thank you for sharing this intimate story with everyone. I am a nursing student in WA and I was trying to get more information on colostomies and how to care for patients with them and it was so helpful to hear about it directly from a patient point of view. And then to see all the people who have written to you that this has helped them too. Amazing. I hope all is going well with you both and thankyou again. This is the kind of information all nurses should have so they can give the best care to their patients.

]]> By: Mark http://www.jpouch.net/photos/surgery-1/#comment-6783 Mark Fri, 26 Feb 2010 02:27:49 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6783 Hey Ana, We are so glad to hear that the site has helped your family. One thing we know about UC is that is a disease that discriminates by age, ethnicity, etc.....Unfortunately, it spreads itself to all people! Please let us know how his surgeries go. Will he be having 2 or 3 steps? Will it be open or lapro surgery? Hey Ana, We are so glad to hear that the site has helped your family. One thing we know about UC is that is a disease that discriminates by age, ethnicity, etc…..Unfortunately, it spreads itself to all people! Please let us know how his surgeries go. Will he be having 2 or 3 steps? Will it be open or lapro surgery?

]]> By: Ana Garcia http://www.jpouch.net/photos/surgery-1/#comment-6771 Ana Garcia Thu, 25 Feb 2010 21:13:00 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6771 Hello Megan and Mark, We live in Mexico and we want to congratulate you guys for sharing your history with all of us. We have been reading a lot of information in the internet. All that you wrote is very helpful for the people that has UC, not just the American people, also for all the people that lives on other countries. Your history is very helpful because all of the pictures you shared, there are not too many like yours. My husband is having his first surgery on Monday March 1st, 2010, and I´m a little bit nervous about it. But we are so excite about it, he doesn´t want to live like he is right now anymore. He is just 27 years old, and like he says, he has a very long life to live without UC. God help us. Thanks for all yo have done for people like us. Ana Hello Megan and Mark, We live in Mexico and we want to congratulate you guys for sharing your history with all of us. We have been reading a lot of information in the internet. All that you wrote is very helpful for the people that has UC, not just the American people, also for all the people that lives on other countries. Your history is very helpful because all of the pictures you shared, there are not too many like yours. My husband is having his first surgery on Monday March 1st, 2010, and I´m a little bit nervous about it. But we are so excite about it, he doesn´t want to live like he is right now anymore. He is just 27 years old, and like he says, he has a very long life to live without UC. God help us. Thanks for all yo have done for people like us. Ana

]]> By: Megan http://www.jpouch.net/photos/surgery-1/#comment-6739 Megan Mon, 22 Feb 2010 14:16:47 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6739 Hi Scottie, It was scary for Mark and us as well. It seems like a really daunting and drastic surgery. Turns out once he was in it and all was said and done, it wasn't that huge of a deal. Listen, you and your doctors will know when surgery is the best for you, but we can assure that in Mark's case he did get his life back and he lives a wonderfully healthy happy life now, a life that was impossible with UC. Also, think for yourself and family that each year after 15 years will UC substantively increases your risk of colon cancer. I know for us that was the icing on the cake - no colon meant no fear of colon cancer. Hi Scottie, It was scary for Mark and us as well. It seems like a really daunting and drastic surgery. Turns out once he was in it and all was said and done, it wasn’t that huge of a deal. Listen, you and your doctors will know when surgery is the best for you, but we can assure that in Mark’s case he did get his life back and he lives a wonderfully healthy happy life now, a life that was impossible with UC. Also, think for yourself and family that each year after 15 years will UC substantively increases your risk of colon cancer. I know for us that was the icing on the cake – no colon meant no fear of colon cancer.

]]> By: Scottie http://www.jpouch.net/photos/surgery-1/#comment-6735 Scottie Sun, 21 Feb 2010 21:56:51 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6735 Hi Mark and Megan. Thank you for sharing your story and photos with everyone. I am 44 years old and have had UC for about 20 years and have had it chronic for the last 4 years. I have been on most of the meds except remicaide and humeria. I refused to try those 2 because of the side effects they may cause. I recently had a bad flare that sent me over the edge. I am so tired of living with this disease and met with a colorectal surgeon 2-18-10 and am scheduled to have the 1st surgery 3-25-10. I'm not going to lie and say I'm not scared but after reading your story it has been very inspirational and has calmed some of my fears. I have missed out on so much the last 4 years and feel like my wife and 2 kids have been short changed because of this disease. Thanks again for for story and photos and congrats on your first little one ! Scottie Hi Mark and Megan. Thank you for sharing your story and photos with everyone. I am 44 years old and have had UC for about 20 years and have had it chronic for the last 4 years. I have been on most of the meds except remicaide and humeria. I refused to try those 2 because of the side effects they may cause. I recently had a bad flare that sent me over the edge. I am so tired of living with this disease and met with a colorectal surgeon 2-18-10 and am scheduled to have the 1st surgery 3-25-10. I’m not going to lie and say I’m not scared but after reading your story it has been very inspirational and has calmed some of my fears. I have missed out on so much the last 4 years and feel like my wife and 2 kids have been short changed because of this disease. Thanks again for for story and photos and congrats on your first little one !

Scottie

]]> By: Mark http://www.jpouch.net/photos/surgery-1/#comment-6371 Mark Mon, 04 Jan 2010 04:33:18 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6371 You may also want to get in touch with Grant - he is 19 years old and inbetween surgeries so he can go to college this spring semester then have his jpouch hooked up this summer http://www.jpouch.net/2009/12/21/update-2/ You may also want to get in touch with Grant – he is 19 years old and inbetween surgeries so he can go to college this spring semester then have his jpouch hooked up this summer http://www.jpouch.net/2009/12/21/update-2/

]]> By: Mark http://www.jpouch.net/photos/surgery-1/#comment-6370 Mark Mon, 04 Jan 2010 04:31:17 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6370 Here are links to two EXCELLENT webcasts on UC and surgery decision. The more info you have, the more informed and secure ya'll will feel with the decision you make. Empowerment is key in having a healthy surgery and recovery. Making the UC surgery decision (interview with a surgeon) http://www.jpouch.net/2008/06/23/discussion-on-to-wait-for-uc-surgery/ UC Meds versus Surgery http://www.jpouch.net/2009/01/04/webcast-which-meds-or-surgery-can-help/ On jpouch.com there are support forums for everything jpouch or kpouch related. Mark Here are links to two EXCELLENT webcasts on UC and surgery decision. The more info you have, the more informed and secure ya’ll will feel with the decision you make. Empowerment is key in having a healthy surgery and recovery.

Making the UC surgery decision (interview with a surgeon)
http://www.jpouch.net/2008/06/23/discussion-on-to-wait-for-uc-surgery/

UC Meds versus Surgery
http://www.jpouch.net/2009/01/04/webcast-which-meds-or-surgery-can-help/

On jpouch.com there are support forums for everything jpouch or kpouch related.

Mark

]]> By: Mark http://www.jpouch.net/photos/surgery-1/#comment-6369 Mark Mon, 04 Jan 2010 04:25:22 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6369 Hi Lfinn, Sorry to hear your son is dealing with this, but he is lucky to have such an active support system. I have always been active too and I too tried many diets to help the UC. When I finally realized that my UC couldn't be helped, slowed, put into remission with food I was free to eat and drink as I wanted until the surgery. It was really hard for me early on to imagine that i couldn't control some of it with food, but what I finally learned from my surgeon is that some colons with UC hit a point of "burn out" this is where the colon is so damaged from years of irritation that food and medical intervention can not help, hence, when doctors talk to patients about surgery. And there are many details to consider like Gatorade is high high sugar and sugar often cause liquid BM's so you may want to get electrolyte drinks sans sugar (found at health/vitamin stores). Before I went into to my surgeon my surgeon wanted me on high protein b/c protein helps our tissue regenerate after surgery. It was intended to help speed my recovery. Now, for me protein works not as a bulking agent but keeps me really thin, so if he adds protein you want to make sure he is getting carbs especially if he is thin naturally. As for jpouch versus other options, this is the MILLION dollar that every body questions pending surgery. Many people feel like the jpouch is the gold standard, if you get a healthy jpouch you can use your anus normally. Yes, you will have more BM's, but I have 8-10 BM's a day and I have ZERO complaints b/c (1) I am healthy and feel good, (2) I have full bowel control and no urgency, and (3) my BMs are on a schedule so they don't intefer with my active life at all. For me the jpouch was the best decision (and gamble b/c of course all those complications you hear about could happen). I haven't had any complications that are worth regretting my jpouch. A k-pouch is a good option and I know many colon cancer people go that route b/c they can't have the jpouch like UC'ers due to they need more rectum removed from cancer and can not connect the jpouch. Where UC we are lucky that our rectum isn't damaged and can remain for the jpouch. We are lucky to have the jpouch option more than others who aren't eligible. I'll post some links for you to review to help you fill in your knowledge to make the right decision with your son. Hi Lfinn, Sorry to hear your son is dealing with this, but he is lucky to have such an active support system. I have always been active too and I too tried many diets to help the UC. When I finally realized that my UC couldn’t be helped, slowed, put into remission with food I was free to eat and drink as I wanted until the surgery. It was really hard for me early on to imagine that i couldn’t control some of it with food, but what I finally learned from my surgeon is that some colons with UC hit a point of “burn out” this is where the colon is so damaged from years of irritation that food and medical intervention can not help, hence, when doctors talk to patients about surgery. And there are many details to consider like Gatorade is high high sugar and sugar often cause liquid BM’s so you may want to get electrolyte drinks sans sugar (found at health/vitamin stores). Before I went into to my surgeon my surgeon wanted me on high protein b/c protein helps our tissue regenerate after surgery. It was intended to help speed my recovery. Now, for me protein works not as a bulking agent but keeps me really thin, so if he adds protein you want to make sure he is getting carbs especially if he is thin naturally.

As for jpouch versus other options, this is the MILLION dollar that every body questions pending surgery. Many people feel like the jpouch is the gold standard, if you get a healthy jpouch you can use your anus normally. Yes, you will have more BM’s, but I have 8-10 BM’s a day and I have ZERO complaints b/c (1) I am healthy and feel good, (2) I have full bowel control and no urgency, and (3) my BMs are on a schedule so they don’t intefer with my active life at all. For me the jpouch was the best decision (and gamble b/c of course all those complications you hear about could happen). I haven’t had any complications that are worth regretting my jpouch. A k-pouch is a good option and I know many colon cancer people go that route b/c they can’t have the jpouch like UC’ers due to they need more rectum removed from cancer and can not connect the jpouch. Where UC we are lucky that our rectum isn’t damaged and can remain for the jpouch. We are lucky to have the jpouch option more than others who aren’t eligible. I’ll post some links for you to review to help you fill in your knowledge to make the right decision with your son.

]]> By: lfinn http://www.jpouch.net/photos/surgery-1/#comment-6368 lfinn Mon, 04 Jan 2010 01:58:04 +0000 http://ucstory.wordpress.com/surgery-1/#comment-6368 Mark, This is so interesting. My son is 19 years old and is at the stage of needing surgery. He is extremely active, so he needs to learn which surgery for UC will be the best option for him. He would love the J-Pouch; however, it seems as if the need to use the restroom is still quite often. We are going to visit with a surgeon this week to learn more about the J-Pouch Surgery. Also, he has learned (from friends) about the K-Pouch Surgery. It seems to be another fairly good options. Any suggestions? Also, I read that you drank protein drinks. My son has a very limited diet. He eats bread, pasta, and drinks Vitamin Water and Gatorade. He cannot tolorate eating much of anything. I would like to see him drink some of his nutrition if he cannot eat it. Do you have suggestions in this area? Thanks so much for your inspiration and help to other with UC!!! Mark,

This is so interesting. My son is 19 years old and is at the stage of needing surgery. He is extremely active, so he needs to learn which surgery for UC will be the best option for him. He would love the J-Pouch; however, it seems as if the need to use the restroom is still quite often. We are going to visit with a surgeon this week to learn more about the J-Pouch Surgery. Also, he has learned (from friends) about the K-Pouch Surgery. It seems to be another fairly good options. Any suggestions?

Also, I read that you drank protein drinks. My son has a very limited diet. He eats bread, pasta, and drinks Vitamin Water and Gatorade. He cannot tolorate eating much of anything. I would like to see him drink some of his nutrition if he cannot eat it. Do you have suggestions in this area?

Thanks so much for your inspiration and help to other with UC!!!

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