Comments for J-pouch Life http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Wed, 22 May 2013 21:19:06 +0000 hourly 1 http://wordpress.org/?v=3.4.2 Comment on Our Message Board by Dennis http://www.jpouch.net/surgery-photos-your-story/#comment-229564 Dennis Wed, 22 May 2013 21:19:06 +0000 http://ucstory.wordpress.com/?page_id=308#comment-229564 Hey Gretchen, I had my colon removed three years ago. I took me about 2 1/2 years to really figure my diet out to a science. You are very fresh from surgery. Congrats, life is not going to be as terrible as it seems now. Let me know abou your daily diet and any supplements and drugs you digest. Everyone is different in what they can eat, but there are many similarites that can be shared. My advice will be about your diet. Hopefully I can give you more insight on the proccess of your digestive track. Search back on some of my posts also. respond back if you are interested how I overcame my problems. Hey Gretchen, I had my colon removed three years ago. I took me about 2 1/2 years to really figure my diet out to a science. You are very fresh from surgery. Congrats, life is not going to be as terrible as it seems now. Let me know abou your daily diet and any supplements and drugs you digest. Everyone is different in what they can eat, but there are many similarites that can be shared. My advice will be about your diet. Hopefully I can give you more insight on the proccess of your digestive track. Search back on some of my posts also. respond back if you are interested how I overcame my problems.

]]> Comment on Our Message Board by Gretchen http://www.jpouch.net/surgery-photos-your-story/#comment-229061 Gretchen Sun, 19 May 2013 23:05:57 +0000 http://ucstory.wordpress.com/?page_id=308#comment-229061 Hi Marie, I have been reading the posts on here I have learned some great information but don't really relate to most of them because with the FAP I never had pain before all the surgeries. So i am not as greatful as i see some are. I am greatful to be alive but not to have all the pain and discomfurt that i have now. My last surgery [ takedown] was on April 2nd.  The pain has gotten must better but I am still having what the surgeon is calling spasms. Some days none at all and others only a few. But some daysI have them off and on all day long. Those days are very long frustraiting days. I see you also have FAP, do your remember having these spasms and if so do you remember how long they lasted? The Dr. says they could last up to a year.  Hi Marie,
I have been reading the posts on here I have learned some great information but don’t really relate to most of them because with the FAP I never had pain before all the surgeries. So i am not as greatful as i see some are. I am greatful to be alive but not to have all the pain and discomfurt that i have now. My last surgery [ takedown] was on April 2nd.  The pain has gotten must better but I am still having what the surgeon is calling spasms. Some days none at all and others only a few. But some daysI have them off and on all day long. Those days are very long frustraiting days. I see you also have FAP, do your remember having these spasms and if so do you remember how long they lasted? The Dr. says they could last up to a year. 

]]> Comment on Our Message Board by Marie http://www.jpouch.net/surgery-photos-your-story/#comment-226606 Marie Wed, 08 May 2013 01:06:30 +0000 http://ucstory.wordpress.com/?page_id=308#comment-226606 Hi Gretchen  I have FAP and had my surgery in 87 high school graduation present :)  More than likely the pain is coming from your diet. I still keep a food journal of things I can eat well and things I need to stay away from. Everyone's different my mom and my sister and myself all have FAP and have had different surgical procedures to correct the disease.  None of us can eat the same things.   Hi Gretchen 
I have FAP and had my surgery in 87 high school graduation present :)  
More than likely the pain is coming from your diet. I still keep a food journal of things I can eat well and things I need to stay away from. Everyone’s different my mom and my sister and myself all have FAP and have had different surgical procedures to correct the disease.  None of us can eat the same things.  

]]> Comment on Boots’ UC Journey by Pedro http://www.jpouch.net/photos/boots-uc-journey/#comment-226443 Pedro Tue, 07 May 2013 02:56:56 +0000 http://www.jpouch.net/?page_id=868#comment-226443 Hi Mike! My name's Pedro. I am 40 years old and I'm from Portugal. I have been colostomized for 4 months. I have been having trouble dealing with my colostomy and my J-pouch. I'm stil an optimitic guy and I stil have a lot of dreams! I would like to hear from you! My email is palsimoes@hotmail.com Hi Mike! My name’s Pedro. I am 40 years old and I’m from Portugal. I have been colostomized for 4 months. I have been having trouble dealing with my colostomy and my J-pouch. I’m stil an optimitic guy and I stil have a lot of dreams! I would like to hear from you! My email is palsimoes@hotmail.com

]]> Comment on Post-Op/Pre-Op Op Ed by Lizz http://www.jpouch.net/2013/04/02/postoppreop/#comment-225213 Lizz Thu, 25 Apr 2013 03:43:23 +0000 http://www.jpouch.net/?p=2868#comment-225213 Thank you, Christal, for the lovely comment! How are you doing with your Crohn's? Thank you, Christal, for the lovely comment! How are you doing with your Crohn’s?

]]> Comment on Post-Op/Pre-Op Op Ed by Christal http://www.jpouch.net/2013/04/02/postoppreop/#comment-225200 Christal Thu, 25 Apr 2013 00:27:30 +0000 http://www.jpouch.net/?p=2868#comment-225200 I thoroughly enjoyed reading your post. I too have been a patient of the Cleveland Clinic for the past two years and they are AMAZING! I also have Crohns (IBD since I was 15; I will be 30 in June) and a j pouch constructed by Dr. Kiran (who is leaving the clinic in May :( ). I am so thankful for individuals like yourself who are willing to share their story :) I thoroughly enjoyed reading your post. I too have been a patient of the Cleveland Clinic for the past two years and they are AMAZING! I also have Crohns (IBD since I was 15; I will be 30 in June) and a j pouch constructed by Dr. Kiran (who is leaving the clinic in May :( ). I am so thankful for individuals like yourself who are willing to share their story :)

]]> Comment on Our Message Board by Gretchen http://www.jpouch.net/surgery-photos-your-story/#comment-224874 Gretchen Mon, 22 Apr 2013 16:32:09 +0000 http://ucstory.wordpress.com/?page_id=308#comment-224874 Thank you. Sometimes it seems like I am going to jump through the ceiling from all the pain. When I tell my Dr. He just says its normal but won't last forever. A year is a long time but it is good to know it to will end. If I can do 6 months of chemo I think I can handle this.  Thank you for the positive thoughts Thank you. Sometimes it seems like I am going to jump through the ceiling from all the pain. When I tell my Dr. He just says its normal but won’t last forever. A year is a long time but it is good to know it to will end. If I can do 6 months of chemo I think I can handle this.  Thank you for the positive thoughts

]]> Comment on Our Message Board by Terry http://www.jpouch.net/surgery-photos-your-story/#comment-224727 Terry Sun, 21 Apr 2013 21:08:19 +0000 http://ucstory.wordpress.com/?page_id=308#comment-224727 Gretchen, Sorry to hear you had to have the surgery and the stage but thankfully not stage 4! I had the same surgery about 5 years ago due to a cancerous polyp (stage 2) combined with UC. Is the pain an issue of burning? That was my problem and it took quite awhile for the skin to get used to all the activity. My surgeon told me to soak in the tub as often as I wanted to. There's aren't many things better than a hot bath with your favorite drink! Also, I went through a lot of Calmoseptine ointment which really cooled things down and provided a layer between the skin and the "output". (How's that for a euphemism?) It took the better part of a year before the pain subsided. My biggest problem is night-time incontinence which really troubles me. The rectal muscle is so relaxed while I sleep that I don't even know that I'm mimicking a horizontal volcano until it's too late. I may change my name to Etna. But I've learned to live with it with proper protection for the bedding, etc, even with extensive business travel But I make it a point to never sleep on planes. I hope your pain susbsides soon. I rememeber too well, so you certainly have my good wishes. Gretchen,

Sorry to hear you had to have the surgery and the stage but thankfully not stage 4! I had the same surgery about 5 years ago due to a cancerous polyp (stage 2) combined with UC. Is the pain an issue of burning? That was my problem and it took quite awhile for the skin to get used to all the activity. My surgeon told me to soak in the tub as often as I wanted to. There’s aren’t many things better than a hot bath with your favorite drink! Also, I went through a lot of Calmoseptine ointment which really cooled things down and provided a layer between the skin and the “output”. (How’s that for a euphemism?) It took the better part of a year before the pain subsided. My biggest problem is night-time incontinence which really troubles me. The rectal muscle is so relaxed while I sleep that I don’t even know that I’m mimicking a horizontal volcano until it’s too late. I may change my name to Etna. But I’ve learned to live with it with proper protection for the bedding, etc, even with extensive business travel But I make it a point to never sleep on planes. I hope your pain susbsides soon. I rememeber too well, so you certainly have my good wishes.

]]> Comment on Our Message Board by Tim R http://www.jpouch.net/surgery-photos-your-story/#comment-224555 Tim R Sat, 20 Apr 2013 14:47:00 +0000 http://ucstory.wordpress.com/?page_id=308#comment-224555 I don't remember my pain being associated directly with using the bathroom. It was more chronic. It is dependent on age, and individual, but I was feeling reasonable well after 2-3 weeks. I had jpouch surgery in 3 parts at 36 years old for ulcerative colitis. After those 3 weeks, I was feeling well enough that I had make efforts to remember to follow the lifting restrictions. I don’t remember my pain being associated directly with using the bathroom. It was more chronic. It is dependent on age, and individual, but I was feeling reasonable well after 2-3 weeks. I had jpouch surgery in 3 parts at 36 years old for ulcerative colitis. After those 3 weeks, I was feeling well enough that I had make efforts to remember to follow the lifting restrictions.

]]> Comment on Our Message Board by Gretchen http://www.jpouch.net/surgery-photos-your-story/#comment-224550 Gretchen Sat, 20 Apr 2013 13:39:28 +0000 http://ucstory.wordpress.com/?page_id=308#comment-224550 I was diagnosed with stage 3 colon cancer in May. I went in for surgery in June. They took my whole colon and my rectum. I had FAP. I just got reconnected on April 2nd and I am still having lots of pain before during and after I use the bathroom. The Drs say this is normal due to the J pouch. Can anyone tell me how long this pain is normal for.  I was diagnosed with stage 3 colon cancer in May. I went in for surgery in June. They took my whole colon and my rectum. I had FAP. I just got reconnected on April 2nd and I am still having lots of pain before during and after I use the bathroom. The Drs say this is normal due to the J pouch. Can anyone tell me how long this pain is normal for. 

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