Comments for The United Colon Vlog http://ucvlog.com Support for those with inflammatory bowel diseases. Wed, 28 Jul 2010 18:32:11 +0000 hourly 1 http://wordpress.com/ Comment on Video Glossary: Difference between J-pouch, S-pouch, and W-pouch by Sondra http://ucvlog.com/2010/07/28/video-glossary-difference-between-j-pouch-s-pouch-and-w-pouch/#comment-1377 Sondra Wed, 28 Jul 2010 18:32:11 +0000 http://ucvlog.com/?p=2517#comment-1377 oh my gosh...I didn't think anyone ever spoke of S pouches anymore. I have had one since 1982. I was number 115 in an experimental study on ileal-anal rebuilds. I've had many complications over the last28 years but I have learned to live with my altered plumbing. I recently developed large bleeding ulcers in the pouch that landed me in the hospital and I had to get a blood transfusion. It was suggested that I consider taking down the pouch and getting an illiostotmy but I shall continue fighting to keep my internal plumbing. I was told that I am not a candidate for a replacement pouch and that nay future surgery would leave me with short bowel syndrome and other complications. What else would you like to know? I would love to hear from others who still have S pouches and hear how they are doing! oh my gosh…I didn’t think anyone ever spoke of S pouches anymore. I have had one since 1982. I was number 115 in an experimental study on ileal-anal rebuilds. I’ve had many complications over the last28 years but I have learned to live with my altered plumbing. I recently developed large bleeding ulcers in the pouch that landed me in the hospital and I had to get a blood transfusion. It was suggested that I consider taking down the pouch and getting an illiostotmy but I shall continue fighting to keep my internal plumbing. I was told that I am not a candidate for a replacement pouch and that nay future surgery would leave me with short bowel syndrome and other complications. What else would you like to know? I would love to hear from others who still have S pouches and hear how they are doing!

]]> Comment on Video Glossary: What is a Certified Ostomy Visitor? by Dan http://ucvlog.com/2010/07/22/video-glossary-what-is-a-certified-ostomy-visitor/#comment-1376 Dan Mon, 26 Jul 2010 22:15:25 +0000 http://ucvlog.com/?p=2490#comment-1376 Dear Deniss, A thank you note for helping me come to a realization that my colon is not my friend but my enamy. I fought Crohn's for 15 years, fighting to save my colon while it stopped functioning and almost killed me due to adhesions and strictures. I have accomplished so many things in my life but could not deal with the removal of my colon untill I watched your video. As an ex Army special forces guy, I saw the colon as my team mate and took upon myself the responsibility to save it no matter what the cost was. And than one day, during a recent bad flare up, I came across your website and realized that my colon is NOT my special ops buddy but an enemy and happy to say that two weeks ago I had a total procto colectomy and I am the happiest. I deal with some post op complications but determined to make this work and start a new chapter in my life. Thanks again and I wish there is a way I could help you spread the word Dan Dear Deniss,
A thank you note for helping me come to a realization that my colon is not my friend but my enamy.
I fought Crohn’s for 15 years, fighting to save my colon while it stopped functioning and almost killed me due to adhesions and strictures.
I have accomplished so many things in my life but could not deal with the removal of my colon untill I watched your video.
As an ex Army special forces guy, I saw the colon as my team mate and took upon myself the responsibility to save it no matter what the cost was. And than one day, during a recent bad flare up, I came across your website and realized that my colon is NOT my special ops buddy but an enemy and happy to say that two weeks ago I had a total procto colectomy and I am the happiest. I deal with some post op complications but determined to make this work and start a new chapter in my life.
Thanks again and I wish there is a way I could help you spread the word
Dan

]]> Comment on Does God Cause Ulcerative Colitis? by Kate Miller http://ucvlog.com/2009/11/12/does-god-cause-ulcerative-colitis/#comment-1375 Kate Miller Mon, 26 Jul 2010 21:20:11 +0000 http://ucvlog.com/?p=1562#comment-1375 Interesting video! I'm glad to know I'm not the only one asking a lot of these same questions. In response to the issue of whether or not God causes illnesses like UC, I am not able to believe that God would cause illness, pain, suffering, or death. At times I have asked a lot of the same questions that Dennis mentioned in the video above, and some people have suggested that "everything happens for a reason" which seems to imply that God gives some people illnesses for some reason unknown to us. This has been a less than satisfying answer for me. If we are to believe that God is our loving Father and Mother as described at so many points in scripture, then I have to believe that God wants the best for us and would not put us through terrible trials just as a test of our faith. I am unable to believe that God would give anyone UC or would give a child cancer just to teach that person a lesson. That said, because I don't believe God causes illness, it is also difficult for me to believe that God is deciding which people to heal and which people not to heal. I know people who have had miraculous healing experiences and attribute their healing to God, and I don't believe they are wrong. I don't want to discredit the experiences of people who feel that God has healed them, but at the same time this brings up the question of why God doesn't heal everyone. Why would God choose to heal one person but choose to let another person die? I have heard many answers to this question and none seem to satisfy. As mentioned above, I believe in a God of unending and infinite love, and I cannot believe that this type of God would pick and choose which people continue to suffer and which people are healed. I continue to struggle with these questions throughout my struggle with UC. It does feel comforting to me to have members of my church family praying for me as I go through difficult times and medical tests and new medications...but at the same time I question what that prayer really means and why God would answer those prayers with healing but answer prayers for someone else with more suffering and pain. I definitely don't have it all figured out! But the support of my family of faith and being able to talk openly about these issues is very helpful for me. As one of my favorite writers, Anne Lamott, said, "The opposite of faith is not doubt, it's certainty." I think it is healthy for people to think about these questions and doubt some of their preconceived notions about God and faith in the quest to better understand and love God. I sincerely don't mean to offend or suggest what other people should believe, and I'm not asking anyone to answer these questions for me; these are just my beliefs and thoughts as I can best express them. Interesting video! I’m glad to know I’m not the only one asking a lot of these same questions. In response to the issue of whether or not God causes illnesses like UC, I am not able to believe that God would cause illness, pain, suffering, or death. At times I have asked a lot of the same questions that Dennis mentioned in the video above, and some people have suggested that “everything happens for a reason” which seems to imply that God gives some people illnesses for some reason unknown to us. This has been a less than satisfying answer for me. If we are to believe that God is our loving Father and Mother as described at so many points in scripture, then I have to believe that God wants the best for us and would not put us through terrible trials just as a test of our faith. I am unable to believe that God would give anyone UC or would give a child cancer just to teach that person a lesson.

That said, because I don’t believe God causes illness, it is also difficult for me to believe that God is deciding which people to heal and which people not to heal. I know people who have had miraculous healing experiences and attribute their healing to God, and I don’t believe they are wrong. I don’t want to discredit the experiences of people who feel that God has healed them, but at the same time this brings up the question of why God doesn’t heal everyone. Why would God choose to heal one person but choose to let another person die? I have heard many answers to this question and none seem to satisfy. As mentioned above, I believe in a God of unending and infinite love, and I cannot believe that this type of God would pick and choose which people continue to suffer and which people are healed.

I continue to struggle with these questions throughout my struggle with UC. It does feel comforting to me to have members of my church family praying for me as I go through difficult times and medical tests and new medications…but at the same time I question what that prayer really means and why God would answer those prayers with healing but answer prayers for someone else with more suffering and pain. I definitely don’t have it all figured out! But the support of my family of faith and being able to talk openly about these issues is very helpful for me. As one of my favorite writers, Anne Lamott, said, “The opposite of faith is not doubt, it’s certainty.” I think it is healthy for people to think about these questions and doubt some of their preconceived notions about God and faith in the quest to better understand and love God.

I sincerely don’t mean to offend or suggest what other people should believe, and I’m not asking anyone to answer these questions for me; these are just my beliefs and thoughts as I can best express them.

]]> Comment on Contact Us by Sondra http://ucvlog.com/about/contact-me/#comment-1374 Sondra Mon, 26 Jul 2010 18:11:11 +0000 http://ucvlog.wordpress.com/?page_id=31#comment-1374 It makes me so proud to see your site! I am 55, diagnosed with Ulcerative Colitis at 17, had a complete colectomy with an experimental S pounch in 1982...No one back then wanted to hear about my adsesses or fistulas orleaky ostomy bags...it was all poop related and not spoken of. The two of you are talking about issues that face so many people, young and old, and have had nowhere to turn. I'm at work and I'm tearing up writing this to you. Please, if you ever hear of any oher old-timers with early pouches, let me know because I've been told most are dead or have had them reversed back to illiostomies. And if I can ever help someone else...I'm in Kansas City and I've spoken with people for years about the fear, pain, and depression living with IBD. You're amazing people! And I'm so glad I found you. It makes me so proud to see your site! I am 55, diagnosed with Ulcerative Colitis at 17, had a complete colectomy with an experimental S pounch in 1982…No one back then wanted to hear about my adsesses or fistulas orleaky ostomy bags…it was all poop related and not spoken of. The two of you are talking about issues that face so many people, young and old, and have had nowhere to turn. I’m at work and I’m tearing up writing this to you. Please, if you ever hear of any oher old-timers with early pouches, let me know because I’ve been told most are dead or have had them reversed back to illiostomies. And if I can ever help someone else…I’m in Kansas City and I’ve spoken with people for years about the fear, pain, and depression living with IBD. You’re amazing people! And I’m so glad I found you.

]]> Comment on One Year Celebration For My J-Pouch by Kari http://ucvlog.com/2010/02/16/one-year-celebration-for-my-j-pouch/#comment-1366 Kari Mon, 26 Jul 2010 06:55:21 +0000 http://ucvlog.com/?p=1838#comment-1366 I am very glad to have found your site and your facebook page. I have Familial adenomatous polyposis (FAP). I was diagnosed at 4 (was youngest ever), had my intestine removed and got a J-Pouch when I was 9. I have now just celebrated 16 years with a J Pouch. I am trying to make my disease more known as it is a genetic disease that does not skip generations. I lived my life like any other person. I never changed activities or foods. I lived every day as it came and never stopped because of having FAP. When I had surgery doctors told me 3 to 6 months of recovery and i was doing everything including swimming a month after my surgery. I have had no complication and I look forward to talking with more people who have J-pouches. Thank you again and Congrats on 1 year. I am very glad to have found your site and your facebook page. I have Familial adenomatous polyposis (FAP). I was diagnosed at 4 (was youngest ever), had my intestine removed and got a J-Pouch when I was 9. I have now just celebrated 16 years with a J Pouch. I am trying to make my disease more known as it is a genetic disease that does not skip generations. I lived my life like any other person. I never changed activities or foods. I lived every day as it came and never stopped because of having FAP. When I had surgery doctors told me 3 to 6 months of recovery and i was doing everything including swimming a month after my surgery. I have had no complication and I look forward to talking with more people who have J-pouches.

Thank you again and Congrats on 1 year.

]]> Comment on Video Glossary: What are the different stoma types? by Piper Lee http://ucvlog.com/2010/07/16/video-glossary-what-are-the-different-stoma-types/#comment-1347 Piper Lee Fri, 16 Jul 2010 15:20:56 +0000 http://ucvlog.com/?p=2471#comment-1347 I have an end ileostomy! It is pretty well-behaved and easy to take care of. I have an end ileostomy! It is pretty well-behaved and easy to take care of.

]]> Comment on Oh, J-Pouch, Please Don’t Fail Me! – A Video Journal Entry From Nadia by Henry http://ucvlog.com/2010/07/03/oh-j-pouch-please-dont-fail-me-a-video-journal-entry-from-nadia/#comment-1346 Henry Thu, 15 Jul 2010 20:31:22 +0000 http://ucvlog.com/?p=2430#comment-1346 Hi Nadia, I feel your pain, I recently (June 1st) had a total colectomy and ileostomy. I was only told I had UC two weeks before that! I think your attitude and strength of character is incredible and inspirational. There are days when I think I can't go on, but knowing that there are people like you out there gives me the strength to keep fighting. I'm sending you as many positive thoughts as I can, good luck! Henry (30) UK Hi Nadia,

I feel your pain, I recently (June 1st) had a total colectomy and ileostomy. I was only told I had UC two weeks before that!

I think your attitude and strength of character is incredible and inspirational. There are days when I think I can’t go on, but knowing that there are people like you out there gives me the strength to keep fighting.

I’m sending you as many positive thoughts as I can, good luck!

Henry (30)
UK

]]> Comment on Contact Us by Jennifer http://ucvlog.com/about/contact-me/#comment-1326 Jennifer Tue, 06 Jul 2010 10:54:09 +0000 http://ucvlog.wordpress.com/?page_id=31#comment-1326 Dear Dennis and Nadia, I have heard both of you talk about school. I am currently going through a medical program. It is a short program, 8 months, I am currently having another flare up and am told I need to have the surgery soon. I have heard that my school does not allow a leave of absence and that i would have to drop and start up where i left off but still pay for everything all over. I was told it could be hard to get loans once you drop. Have you had trouble with this? i am 29 years old and have a husband and child so I do not live with my parents and my loans are all I have to get me through school. I only have 4 months left, but my Doctors say I need to have the surgery now. I wasnt sure what my rights are and if you two could help me with this. Thank you so much for all the help you have given. thank you Jennifer M. Dear Dennis and Nadia,
I have heard both of you talk about school. I am currently going through a medical program. It is a short program, 8 months, I am currently having another flare up and am told I need to have the surgery soon. I have heard that my school does not allow a leave of absence and that i would have to drop and start up where i left off but still pay for everything all over. I was told it could be hard to get loans once you drop. Have you had trouble with this? i am 29 years old and have a husband and child so I do not live with my parents and my loans are all I have to get me through school. I only have 4 months left, but my Doctors say I need to have the surgery now. I wasnt sure what my rights are and if you two could help me with this. Thank you so much for all the help you have given.
thank you
Jennifer M.

]]> Comment on Oh, J-Pouch, Please Don’t Fail Me! – A Video Journal Entry From Nadia by Sandie http://ucvlog.com/2010/07/03/oh-j-pouch-please-dont-fail-me-a-video-journal-entry-from-nadia/#comment-1324 Sandie Sun, 04 Jul 2010 14:33:07 +0000 http://ucvlog.com/?p=2430#comment-1324 Nadia, You are an angel sent from God... I am going through the same thing you are going through. I have Chronic pouchitis.. I am on flagyl and cipro but was told i can only be on it for a little bit more... They are talking about me going on Remicade or Humira.. The Reicade didnt work when I had my colon..so I am so not sure it will work now. I will like to be more vocal with this also... not sure how to begin... I am going to pray for you . please keep in touch.. I am here if you need to talk... xxoo Keep the faith. Nadia,
You are an angel sent from God… I am going through the same thing you are going through. I have Chronic pouchitis.. I am on flagyl and cipro but was told i can only be on it for a little bit more… They are talking about me going on Remicade or Humira.. The Reicade didnt work when I had my colon..so I am so not sure it will work now.
I will like to be more vocal with this also… not sure how to begin… I am going to pray for you . please keep in touch.. I am here if you need to talk… xxoo Keep the faith.

]]> Comment on Oh, J-Pouch, Please Don’t Fail Me! – A Video Journal Entry From Nadia by Piper Lee http://ucvlog.com/2010/07/03/oh-j-pouch-please-dont-fail-me-a-video-journal-entry-from-nadia/#comment-1323 Piper Lee Sat, 03 Jul 2010 21:47:44 +0000 http://ucvlog.com/?p=2430#comment-1323 I'm so sorry to hear that you got bad news, Nadia! :( You are such an inspiration to a lot of people. Living with IBD is very difficult. I lived with severe Crohn's colitis for 10 years (since I was 12), and it kept me from being able to do a lot of things. I always felt miserable; what a waste of my youth! I just got a permanent ileostomy and I am only 22, but I already feel like I can do so much more with the ostomy than with the illness. I know you have lived with an ostomy before and want to be able to keep your j-pouch and avoid future surgeries, but if it did come to having an ostomy again, it wouldn't be so bad. You're not alone! I hope that your doctors can find answers for you that can make you happy, and I hope that you don't have to deal with the pain much longer! I’m so sorry to hear that you got bad news, Nadia! :( You are such an inspiration to a lot of people. Living with IBD is very difficult. I lived with severe Crohn’s colitis for 10 years (since I was 12), and it kept me from being able to do a lot of things. I always felt miserable; what a waste of my youth! I just got a permanent ileostomy and I am only 22, but I already feel like I can do so much more with the ostomy than with the illness. I know you have lived with an ostomy before and want to be able to keep your j-pouch and avoid future surgeries, but if it did come to having an ostomy again, it wouldn’t be so bad. You’re not alone!

I hope that your doctors can find answers for you that can make you happy, and I hope that you don’t have to deal with the pain much longer!

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