Comments for J-pouch Life http://www.jpouch.net Stories: Ostomy, Ileostomy, Jpouch, Colitis, Crohn's, Surgery and Support Fri, 25 May 2012 02:04:55 +0000 hourly 1 http://wordpress.org/?v=3.3.2 Comment on Our Message Board by James http://feedproxy.google.com/~r/commentsjpouchnet/~3/mpWygwVtv3Y/ James Fri, 25 May 2012 02:04:55 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101932 I took vsl#3 for a month last month, I can't say that I felt a big differance, but was a rough month stress wise so hard to tell what caused what. I didn't refill because I wasn't sure it was helping, and am being cheap. I don't mind paying for it if it will work, is it something that may just take time to fully work? Thank you. I took vsl#3 for a month last month, I can’t say that I felt a big differance, but was a rough month stress wise so hard to tell what caused what. I didn’t refill because I wasn’t sure it was helping, and am being cheap. I don’t mind paying for it if it will work, is it something that may just take time to fully work? Thank you.


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101932 Comment on Our Message Board by James http://feedproxy.google.com/~r/commentsjpouchnet/~3/W_o3Edonlhk/ James Fri, 25 May 2012 01:41:59 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101928 Yes they are all pills. I had bought some vit c gummies a couple weeks ago and then had a small blockage, so i removed the gummies from my diet. I cant say for sure that it was them. I will buy all gummie vitamins, and see. I have wondered if I was absorbing the pills.. Thank you. Yes they are all pills. I had bought some vit c gummies a couple weeks ago and then had a small blockage, so i removed the gummies from my diet. I cant say for sure that it was them. I will buy all gummie vitamins, and see. I have wondered if I was absorbing the pills.. Thank you.


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101928 Comment on Our Message Board by Kanaka http://feedproxy.google.com/~r/commentsjpouchnet/~3/C9ahhDHzrPs/ Kanaka Thu, 24 May 2012 16:56:34 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101875 Hi Jay, Have you tried VSL#3? Its supposed to help with pouchitis. Its also available in Costco. Hi Jay,
Have you tried VSL#3? Its supposed to help with pouchitis. Its also available in Costco.


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101875 Comment on Our Message Board by Dennis http://feedproxy.google.com/~r/commentsjpouchnet/~3/LotsUto7_Tk/ Dennis Thu, 24 May 2012 15:51:16 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101864 Hey Jay, Are the vitamins and supplement you are taking pills? Pills are meant to be dissolved and absorbed in the large intestine. Pills irritate the pouch badly. I have luck with gummi based supplements. They dissovke in the stomach. If you can stablize the pouch things will get better. Hey Jay,
Are the vitamins and supplement you are taking pills? Pills are meant to be dissolved and absorbed in the large intestine. Pills irritate the pouch badly. I have luck with gummi based supplements. They dissovke in the stomach. If you can stablize the pouch things will get better.


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101864 Comment on Our Message Board by Jay http://feedproxy.google.com/~r/commentsjpouchnet/~3/yhSLXfWzqWo/ Jay Wed, 23 May 2012 21:31:58 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101785 (I started writing to ask a simple question, but erased it to just tell my story, i'll try to make it a short version but bare with as my questions will be at the end!  :) Hi guys, my name is Jay and have had a j-pouch since early 2006. In april 2005 I was 6'3 and 226lbs of muscle and 20 yrs old and I was also hit with my 1st and only UC flair up. The flair up was so intense that no medication we tried could calm it down resulting in a 3 surgery process to have the colon and rectum removed. After the 1st surgery I was 120lbs.  The 9 months I had the ileostomy were the worst as I still had my rectum and about 8in of colon left, they had me constantly running the bathroom to pass small amounts of blood, while at the same time emptying the bag 10-12x a day.   After the j-pouch was in, things started to get better, I enrolled in a 5-yr industrial electrician apprenticeship program. Things steady got better and better for me, I was staying at the top of class and being picked 1st for the hardest jobs at work. I was eating almost anything I wanted with the exception of raw veggies which had caused me a couple of small blockages.  By mid 2010 I was once again weighing 200lbs and even felt a lil pudgy lol. I worked out a couple times a week, nothing major I was bench pressing 155lbs and easy, about half of pre-surgery bench press but not enough to pack on muscle, which worked sense I liked the idea of being more lean and started running a lot.  Come july 2011 I was weighing about 185lbs and was very happy.  Mid july I injured my back at work and the fall caused me to lose control of my bowels for a few days, it sucked but I figured it would heal and pass, time to start the kegals over again you know. Overall my back has 2 bulging disk and 2 vertebra slightly out of place with slight nerve damage in the L5 area. Didnt seem bad to me at 1st. Here I am 10 months later and I havnt had loss of control to my bowels while being awake, but I have had chronic pouchitis ever since, as well as the back pain staying about the same and chronic fatigue.  I won't include all the fun pains,cramps and all the hanging out with the toilet I go thru, if you are here reading you probably already know all to well. I am not sure if the medical condition and the injury just don't mix and keep each other worked up or what.. Life has gotten hard, harder now than with the UC, I am down to 140lbs right now, was 135 a couple months ago but a month of xifaxin, cipro and flagyl got some weight back on me,.. I have hit a stuck point where it is not moving tho, I fear food almost, I force myself to eat and then sit and wait for the pain to start, leaves me scared to leave my home for more than short trips. I have been taking cipro and flagyl almost constantly for the last 10 months, right now just the flagyl.  I didnt know it was possible but I am mentally feeling defeated, I catch myself not fighting when I should, but im not caring. I was to graduate 2 weeks ago but did not get to due to missing to much work and class this past 10 months and with missing work I have no health insurance so I am unsure what cheap medications my work or help.  Being on workers comp has me tight on money. My dr called in a suppository for me yesterday but it is $600 w/o insurance..   Does anyone have any ideas on what I should take to help that does not require a script or is cheap? Right now I take  metamcuil, flagyl, multi-vitamin, calcium and vit d and b12 daily. Any ideas on what will help with energy? Does anyone have any experiences with chronic pouchitis and what helped you thru or did it get better? Anyone have any experiences with lumbar pain and pouchitis?  (I started writing to ask a simple question, but erased it to just tell my story, i’ll try to make it a short version but bare with as my questions will be at the end!  :)

Hi guys, my name is Jay and have had a j-pouch since early 2006. In april 2005 I was 6’3 and 226lbs of muscle and 20 yrs old and I was also hit with my 1st and only UC flair up.
The flair up was so intense that no medication we tried could calm it down resulting in a 3 surgery process to have the colon and rectum removed. After the 1st surgery I was 120lbs.  The 9 months I had the ileostomy were the worst as I still had my rectum and about 8in of colon left, they had me constantly running the bathroom to pass small amounts of blood, while at the same time emptying the bag 10-12x a day.   After the j-pouch was in, things started to get better, I enrolled in a 5-yr industrial electrician apprenticeship program. Things steady got better and better for me, I was staying at the top of class and being picked 1st for the hardest jobs at work. I was eating almost anything I wanted with the exception of raw veggies which had caused me a couple of small blockages.  By mid 2010 I was once again weighing 200lbs and even felt a lil pudgy lol. I worked out a couple times a week, nothing major I was bench pressing 155lbs and easy, about half of pre-surgery bench press but not enough to pack on muscle, which worked sense I liked the idea of being more lean and started running a lot.  Come july 2011 I was weighing about 185lbs and was very happy.  Mid july I injured my back at work and the fall caused me to lose control of my bowels for a few days, it sucked but I figured it would heal and pass, time to start the kegals over again you know. Overall my back has 2 bulging disk and 2 vertebra slightly out of place with slight nerve damage in the L5 area. Didnt seem bad to me at 1st. Here I am 10 months later and I havnt had loss of control to my bowels while being awake, but I have had chronic pouchitis ever since, as well as the back pain staying about the same and chronic fatigue.  I won’t include all the fun pains,cramps and all the hanging out with the toilet I go thru, if you are here reading you probably already know all to well. I am not sure if the medical condition and the injury just don’t mix and keep each other worked up or what.. Life has gotten hard, harder now than with the UC, I am down to 140lbs right now, was 135 a couple months ago but a month of xifaxin, cipro and flagyl got some weight back on me,.. I have hit a stuck point where it is not moving tho, I fear food almost, I force myself to eat and then sit and wait for the pain to start, leaves me scared to leave my home for more than short trips. I have been taking cipro and flagyl almost constantly for the last 10 months, right now just the flagyl.  I didnt know it was possible but I am mentally feeling defeated, I catch myself not fighting when I should, but im not caring. I was to graduate 2 weeks ago but did not get to due to missing to much work and class this past 10 months and with missing work I have no health insurance so I am unsure what cheap medications my work or help.  Being on workers comp has me tight on money. My dr called in a suppository for me yesterday but it is $600 w/o insurance..  
Does anyone have any ideas on what I should take to help that does not require a script or is cheap? Right now I take  metamcuil, flagyl, multi-vitamin, calcium and vit d and b12 daily. Any ideas on what will help with energy?
Does anyone have any experiences with chronic pouchitis and what helped you thru or did it get better?
Anyone have any experiences with lumbar pain and pouchitis? 


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101785 Comment on Our Message Board by Kanaka http://feedproxy.google.com/~r/commentsjpouchnet/~3/y5Ju_6d2NYo/ Kanaka Wed, 23 May 2012 20:15:02 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101782 Joy, I had really bad burns and this is what my surgeon's office explained: Butt burns from stool leakage. so the fix is to eat more fiber to tighten or make it together. For me Benefiber and water, what made the difference. If the butt burn increased, I was told to take imodium. Basically, they wanted to eliminate root cause instead of treating the symptoms. I would take benefiber 4-5 times a day with 2 glasses of water each time. It really helped, along with eating lots of rasberries (did not know its a good source of soluble fiber) Joy,
I had really bad burns and this is what my surgeon’s office explained:
Butt burns from stool leakage. so the fix is to eat more fiber to tighten or make it together. For me Benefiber and water, what made the difference.
If the butt burn increased, I was told to take imodium.
Basically, they wanted to eliminate root cause instead of treating the symptoms. I would take benefiber 4-5 times a day with 2 glasses of water each time. It really helped, along with eating lots of rasberries (did not know its a good source of soluble fiber)


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101782 Comment on Our Message Board by Terry http://feedproxy.google.com/~r/commentsjpouchnet/~3/ByBn9JvQI6Y/ Terry Wed, 23 May 2012 19:45:54 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101775 Joy, I get my psyllium husks powder at Fred Meyer in Portland. It's part of the Kroeger chain. Whole Foods also carries it in a different brand. The brand is Yerba Prima and is based in Ashland, Oregon. Their web site is www.yerbaprima.com. I called a few minutes ago (1-800-488-4339) and got an immediate answer versus a recording - a nice surprise. The veryplesant lady said that if you will give her your zip code, she can tell you what stores in your area cary their product(s). I suggest pulling up the website to browse, then call them. We pay about $11 for 12 oz which last quite a while Each serving is one rounded teaspoon. I take 2 - 3 doses per day. I have to say though that the "butt burn" was with me for at least a year. The advice from Dennis is quite good. I don't like saltines in quantity; they remind me of my 3 hospitalizations but they do help. I've been adding hard white cheeses to the diet, especially as an evening snack, and it seems to help. On the other hand, I like a martini or 2 (or wine) with the snack, and the sugars don't help. I hope this helps. Godo luck! Joy, I get my psyllium husks powder at Fred Meyer in Portland. It’s part of the Kroeger chain. Whole Foods also carries it in a different brand. The brand is Yerba Prima and is based in Ashland, Oregon. Their web site is http://www.yerbaprima.com. I called a few minutes ago (1-800-488-4339) and got an immediate answer versus a recording – a nice surprise. The veryplesant lady said that if you will give her your zip code, she can tell you what stores in your area cary their product(s). I suggest pulling up the website to browse, then call them. We pay about $11 for 12 oz which last quite a while Each serving is one rounded teaspoon. I take 2 – 3 doses per day. I have to say though that the “butt burn” was with me for at least a year. The advice from Dennis is quite good. I don’t like saltines in quantity; they remind me of my 3 hospitalizations but they do help. I’ve been adding hard white cheeses to the diet, especially as an evening snack, and it seems to help. On the other hand, I like a martini or 2 (or wine) with the snack, and the sugars don’t help. I hope this helps. Godo luck!


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101775 Comment on Our Message Board by Dennis http://feedproxy.google.com/~r/commentsjpouchnet/~3/Smy4dKE00ZU/ Dennis Wed, 23 May 2012 11:57:57 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101717 Hi Joy, The dreaded BURN, it sucks. It took me quite a few months to figure mine out. First of all I hope you are using wipes after going pottie. I use Kandoo myself, they seem to be the wettest and they are the smallest and flushible. The next I did was pat my but dry with a small towel. Acid will be gone with the wipe. You are now dealing with moisture burn. Much like diaper rash. After I patted dry I used baby powder and applied with tp. do this every time and things should start to get better. Just like with my two year old you might just need naky bumm time just to get air to the skin to help it heal. Now the other end of your system. Reduce your sugar and fat input, along with any fruit juice drinks, pop, etc. Sugars and complex sugars take alot for you body to digest, aka more acid and bile used to digest witch will lead to burn. Start watching your diet. cause and effect. I eat this, I get burn. Try to eat ALOT of crackers(a full tube) and see if things thicken and slow down. The slower the stool moves, more acid is absorbed in your system. P.S. Do not use medicated baby powder, it numbs the spincter and you will have a mess sooner or later. Good luck! let me know if anything worked for you. Also back off from the topicals and use just the powder for a while. Hi Joy,
The dreaded BURN, it sucks. It took me quite a few months to figure mine out. First of all I hope you are using wipes after going pottie. I use Kandoo myself, they seem to be the wettest and they are the smallest and flushible. The next I did was pat my but dry with a small towel. Acid will be gone with the wipe. You are now dealing with moisture burn. Much like diaper rash. After I patted dry I used baby powder and applied with tp. do this every time and things should start to get better. Just like with my two year old you might just need naky bumm time just to get air to the skin to help it heal. Now the other end of your system. Reduce your sugar and fat input, along with any fruit juice drinks, pop, etc. Sugars and complex sugars take alot for you body to digest, aka more acid and bile used to digest witch will lead to burn. Start watching your diet. cause and effect. I eat this, I get burn. Try to eat ALOT of crackers(a full tube) and see if things thicken and slow down. The slower the stool moves, more acid is absorbed in your system. P.S. Do not use medicated baby powder, it numbs the spincter and you will have a mess sooner or later. Good luck! let me know if anything worked for you. Also back off from the topicals and use just the powder for a while.


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101717 Comment on Poll on disease awareness by Paginas Web Tijuana http://feedproxy.google.com/~r/commentsjpouchnet/~3/zmaf8M2vkkE/ Paginas Web Tijuana Wed, 23 May 2012 02:00:32 +0000 http://ucstory.wordpress.com/?p=706#comment-101668 <strong>Paginas Web Tijuana...</strong> [...]Jpouch Life: Stories of Colitis, Crohn's, IBD, Ostomy, Ileostomy & J-Pouch Surgery from around the world[...]... Paginas Web Tijuana…

[...]Jpouch Life: Stories of Colitis, Crohn’s, IBD, Ostomy, Ileostomy & J-Pouch Surgery from around the world[...]…


]]> http://www.jpouch.net/2008/12/04/poll-on-disease-awareness/#comment-101668 Comment on Our Message Board by Joy http://feedproxy.google.com/~r/commentsjpouchnet/~3/GXzi_KDyqOE/ Joy Tue, 22 May 2012 23:56:15 +0000 http://ucstory.wordpress.com/?page_id=308#comment-101647 Where do you get the psyllium husks?   I can deal with the trips to the bathroom but the butt burn is the hardest for me. I am 9 months out from the takedown and I still battle the dreaded burn. I use Calmoseptine, destin, Vaseline and ilex ointment. Any suggestions in dealing with the burn? Where do you get the psyllium husks?   I can deal with the trips to the bathroom but the butt burn is the hardest for me. I am 9 months out from the takedown and I still battle the dreaded burn. I use Calmoseptine, destin, Vaseline and ilex ointment. Any suggestions in dealing with the burn?


]]> http://www.jpouch.net/surgery-photos-your-story/#comment-101647