Comments on: Photos 3: Jpouch 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: Charlie http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6908 Charlie Sun, 14 Mar 2010 21:06:02 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6908 Hi i just came across this website and found your story, i find it very inspiring and has put my mind at rest. Im 17 and had UC when i was 13, i tried all medicines and nothing worked. Eventually i had total colectomy at the age of 14 then jpouch construction at 16. I had the reversal of my stoma 3 weeks back now and im getting on okay, the first week was quite hard with me but then tried the immodium and has helped out alot. Im recovering well and hoping to get back to college in a couple of weeks, i cant wait to do get on with my life not worrying about Uc anymore. Hi i just came across this website and found your story, i find it very inspiring and has put my mind at rest. Im 17 and had UC when i was 13, i tried all medicines and nothing worked. Eventually i had total colectomy at the age of 14 then jpouch construction at 16. I had the reversal of my stoma 3 weeks back now and im getting on okay, the first week was quite hard with me but then tried the immodium and has helped out alot. Im recovering well and hoping to get back to college in a couple of weeks, i cant wait to do get on with my life not worrying about Uc anymore.

]]> By: Mark http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6622 Mark Tue, 09 Feb 2010 19:13:02 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6622 I was active like snowboarding 8 weeks after Step 1 while I had my temp ileo I felt GREAT. Once I had recovered about 5 wks after that big step 1, I was able to do whatever I wanted. My stamina was low, but that was more related to having been sick with UC for so long and less about the surgery. See, it is hard to explain but after step 1, even though I hurt from some surgery recovery, I felt incredible b/c I didn't feel UC sick anymore (like I had constant flu). and then I needed only about 4 weeks after step 2 to get back to things like snowboarding, but at 2 weeks after that surgery I was easily able to do mild cardio, lift smaller stuff, etc..I felt great I just needed a little time for my temp ileo wound to heal, etc... I was active like snowboarding 8 weeks after Step 1 while I had my temp ileo I felt GREAT. Once I had recovered about 5 wks after that big step 1, I was able to do whatever I wanted. My stamina was low, but that was more related to having been sick with UC for so long and less about the surgery. See, it is hard to explain but after step 1, even though I hurt from some surgery recovery, I felt incredible b/c I didn’t feel UC sick anymore (like I had constant flu). and then I needed only about 4 weeks after step 2 to get back to things like snowboarding, but at 2 weeks after that surgery I was easily able to do mild cardio, lift smaller stuff, etc..I felt great I just needed a little time for my temp ileo wound to heal, etc…

]]> By: Jackie Z. http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6619 Jackie Z. Tue, 09 Feb 2010 13:30:55 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6619 Mark, How long did it take you to be able to do those "normal" things like snowboard? I mean could you do them in between surgeries? Or after it was all done? If After...how long did it take? So many questions! Mark,
How long did it take you to be able to do those “normal” things like snowboard? I mean could you do them in between surgeries? Or after it was all done? If After…how long did it take? So many questions!

]]> By: kim http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6570 kim Tue, 02 Feb 2010 03:36:39 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6570 that is all very helpful info! i will for sure check out that website. im glad to hear that things are on trak with you. it really does settle alot of thoughts and worries for my future! that is all very helpful info! i will for sure check out that website. im glad to hear that things are on trak with you. it really does settle alot of thoughts and worries for my future!

]]> By: Mark http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6551 Mark Sat, 30 Jan 2010 18:45:00 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6551 see below reply, meant to put it here but messed up. see below reply, meant to put it here but messed up.

]]> By: Mark http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6550 Mark Sat, 30 Jan 2010 18:44:30 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6550 Have you also read Brevin's story - he has tracked his whole UC surgery with Dr. Varma online and you can see after his takedown he is leading a great life http://www.jpouch.net/?s=Brevin No, I don't stay away from any foods. You'll learn real fast how to manage your jpouch, and find things specific to yours. I know foods that make me have more BMs or foods that will cause more liquid BM, but I don't stay away from anything, I just decide what kind of BMs I'm in the mood to deal with. I also occassionally drink alcohol and eat junk food when I feel like it. Also, you will play around with things like fiber supplements and anti-diarraheal pills to see about thicken up and slowing down your system. So all together it will take time, but you'll find a formula that works for you. And remember you need to give your jpouch time to adjust to its new job - so remember this IT REALLY DOES GET BETTER WITH TIME! Every year my jpouch settles in more and gets better. Have you also read Brevin’s story – he has tracked his whole UC surgery with Dr. Varma online and you can see after his takedown he is leading a great life http://www.jpouch.net/?s=Brevin

No, I don’t stay away from any foods. You’ll learn real fast how to manage your jpouch, and find things specific to yours. I know foods that make me have more BMs or foods that will cause more liquid BM, but I don’t stay away from anything, I just decide what kind of BMs I’m in the mood to deal with. I also occassionally drink alcohol and eat junk food when I feel like it. Also, you will play around with things like fiber supplements and anti-diarraheal pills to see about thicken up and slowing down your system. So all together it will take time, but you’ll find a formula that works for you. And remember you need to give your jpouch time to adjust to its new job – so remember this IT REALLY DOES GET BETTER WITH TIME! Every year my jpouch settles in more and gets better.

]]> By: kim http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6549 kim Sat, 30 Jan 2010 16:58:46 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6549 yes, Dr. Varma is my surgeon. she is wonderful. she was my mothers surgeon as well. that is al great advice. it does feel better knowing that someone else has also gone through this and has shared his outcome with others. its also good to have someone to be able to awnser questions as you did. thank you for that. your story is amazing. it gives high hope and great positivity that there is a chance of a normal life after having a diverting ileostomy for about a year now. i have had many many complications and have a alot of trips to the emergency room from this and i have increased my hope from reading your story. my doctors have actually told me that i had "a surgery from hell". thank you for all your words of wisdom.. it truely does help calm me a little. AND.. congrats on your expected child :) being a parent is such a wonderul feeling! im happy to know that you can live a normal life after this life changing surgery. what things are you able to eat though?? any thing inparticulr that goes well?? or sets you off?? yes, Dr. Varma is my surgeon. she is wonderful. she was my mothers surgeon as well. that is al great advice. it does feel better knowing that someone else has also gone through this and has shared his outcome with others. its also good to have someone to be able to awnser questions as you did. thank you for that. your story is amazing. it gives high hope and great positivity that there is a chance of a normal life after having a diverting ileostomy for about a year now. i have had many many complications and have a alot of trips to the emergency room from this and i have increased my hope from reading your story. my doctors have actually told me that i had “a surgery from hell”. thank you for all your words of wisdom.. it truely does help calm me a little.

AND.. congrats on your expected child :) being a parent is such a wonderul feeling! im happy to know that you can live a normal life after this life changing surgery. what things are you able to eat though?? any thing inparticulr that goes well?? or sets you off??

]]> By: Mark http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6548 Mark Sat, 30 Jan 2010 16:38:13 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6548 Hi Kim, We have a lot of people on the site with FAP getting this surgery too - you guys seem to heal very quickly often b/c you are healthy going into the surgery as compared to a lot of UC people who go in so sick which makes recovery more difficult. Words of encourage are for you to read all the stories on this site and see our updates after surgery (click through the home page posts to find my 2 year update, Brevins update, and more). Most importantly you must stay healthy in your mind and spirit, go into this with low fear and high positivity that your life will be healthy and normal after this. FAP is an awful disease that moves quickly and colon cancer is hard to fight, so getting your colon out now is the only option. Yes, 2 years out my life is wonderful after takedown, my jpouch is great, my life is totally normal and healthy. We are expecting our first baby this summer and I'm living life to its fullest because of my jpouch. Yes, my surgery was at UCSF with Dr. Garcia-Aguilar, he has moved to City of Hope now, so maybe you are having your surgery with Varma (who is brilliant and did Brevin's surgery). Hi Kim, We have a lot of people on the site with FAP getting this surgery too – you guys seem to heal very quickly often b/c you are healthy going into the surgery as compared to a lot of UC people who go in so sick which makes recovery more difficult. Words of encourage are for you to read all the stories on this site and see our updates after surgery (click through the home page posts to find my 2 year update, Brevins update, and more). Most importantly you must stay healthy in your mind and spirit, go into this with low fear and high positivity that your life will be healthy and normal after this. FAP is an awful disease that moves quickly and colon cancer is hard to fight, so getting your colon out now is the only option. Yes, 2 years out my life is wonderful after takedown, my jpouch is great, my life is totally normal and healthy. We are expecting our first baby this summer and I’m living life to its fullest because of my jpouch. Yes, my surgery was at UCSF with Dr. Garcia-Aguilar, he has moved to City of Hope now, so maybe you are having your surgery with Varma (who is brilliant and did Brevin’s surgery).

]]> By: kim http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-6544 kim Fri, 29 Jan 2010 23:42:49 +0000 http://ucstory.wordpress.com/?page_id=42#comment-6544 hi mark. my name is kim. i have a similiar suituation but instead of having UC i have FAP. im am getting ready to have my first takedown of the ileo next month. i have to ask 2 questions. 1: do you have any advise or words of wisdom for me to help calm the nerves? and 2: the hospital you are at in these pictures looks so familair, where you at all by chance at UCSF in San Fransico, CA?? i respect that privacy, so if you feel more comfortable awnsering that, you may do so at oakiechick21@aol.com thank you so much for your time. i see that its been a couple years now, how are you feeling?? did things turn out smoothly with your takedown? hi mark. my name is kim. i have a similiar suituation but instead of having UC i have FAP. im am getting ready to have my first takedown of the ileo next month. i have to ask 2 questions. 1: do you have any advise or words of wisdom for me to help calm the nerves? and 2: the hospital you are at in these pictures looks so familair, where you at all by chance at UCSF in San Fransico, CA?? i respect that privacy, so if you feel more comfortable awnsering that, you may do so at oakiechick21@aol.com
thank you so much for your time. i see that its been a couple years now, how are you feeling?? did things turn out smoothly with your takedown?

]]> By: Mark http://www.jpouch.net/photos/surgery-3-jpouch-or-takedown-surgery/#comment-5873 Mark Tue, 24 Nov 2009 22:12:43 +0000 http://ucstory.wordpress.com/?page_id=42#comment-5873 Chris, it is crucial that you note - most people with a UC diagnsosis DO NOT need to have this surgery. You have lots of medical options that will likely put your UC into remission. There are great support groups for UC, you may want to visit www.healingwell.com - they have a great UC forum. Of course, feel free to visit us here if you have any questions. Chris, it is crucial that you note – most people with a UC diagnsosis DO NOT need to have this surgery. You have lots of medical options that will likely put your UC into remission. There are great support groups for UC, you may want to visit http://www.healingwell.com – they have a great UC forum. Of course, feel free to visit us here if you have any questions.

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