I want to thank you for sharing your videos I recently had my take down surgery a week ago 3/11/14. But seeing your videos have really helped me get through some of the tough times the I had when I had the temporary ilieostomy, gave me hope and knowing that it would all get better soon. I love the fact that I no longer have an ostomy and an figuring out my pouch pretty quickly Thanks again! !
Hey Ramon! Congrats on your take down! I remember how nice it was to finally get rid of the ostomy. It was such a long road! And thank you for letting me know that the videos helped! :) That means a lot!
You go TOMORROW? Congrats! I know that may sound funny NOW but just wait! It SHOULD be a better life for you (depending on why you're having it done of course!) I'll send positive energy your way!
Woah! AMAZING news! What a difference in BM's per day! I can't imagine how relieved you must feel, knowing that things worked out so well. Also, that beard you're rocking looks good on you.
Yeah, like I say in the video, hind sight is 20-20 and I was fine living at the level I was at. But to find out that things can get even better is AWESOME! And thanks for the praise on the beard! Figured I'd grow one until the weather reaches AT LEAST 50 degrees...I'm SO OVER winter! LOL!
UCandPSC It goes to show you that we shouldn't settle for "good enough" and always strive for better - it is possible! I was speaking with someone from Alberta today and he was saying it was -50 the other day (that's MINUS 58 Fahrenheit!!). Yeah, let's just hope that summer comes fast!
Just want to let u know this was really nice to see u so open about this. I also had ulcerative colitis and got the three devil surgeries, and now have pouchitis and everything u have said has happened to me to the tee and it's great to hear of not being the only person to be dealing with this. VSL 3's are horrible and expensive! Steroids are horrible! Remicade is horrible! And all the antibiotics are horrible!!! Lots of love for u!
Hey Dayna! SO NICE to hear from you! I hope things are good now? I did have a question for you as you seem to have gone through and had the exact same process I've had. Do you have any nighttime issues w/ loss of stool since the pouch?
I am have my takedown tomorrow Dec.9, 2014............... I am really excited. I have been watching a few of your videos now I know what to expect and look for. Thanks
This is a weird comment, but I too have UC and currently a stoma (considering a j-pouch) and we look a like! You look like you could be my relative for sure. Thank you for being so candid and sharing your journey. I hope your j-pouch is still working for you?
Hi I firstly wanted to say thank you for your videos they really provide a hope and inspiration that we are not indeed alone. I also have UC and PSC and at that the moment maybe on my way to surgery. I just wanted to ask you which hospital did you have yours done and if you recommend anywhere at all? Thank you
Do you ever regret getting the jpouch? Do you think you were better off with the exterior bag? I currently have the exterior bag for about 7 months because I developed colon cancer and when my colon was removed the surgeon felt I was better off waiting to get the j pouch. The exterior bag is awesome in the sense that I have literally no stomach issues it just sucks to have a bag on your body and the skin where the bag goes is very sensitive.
Hey Reina! I definitely do not regret getting the jpouch. I do seem to have chronic pouchitis which is not uncommon for people who also have the PSC liver disease but it is managed with a daily antibiotic. And I do seem to have some night-time leaks and managed with a pad in underwear (nothing major) but I would still rather live like this than with the UC OR the bag. Although I have to say, IF I had to go back to the bag, I wouldn't mind that either as NOT having to use the bathroom AT ALL (well, relatively speaking...LOL!) was AWESOME! But if I didn't at least TRY the jpouch, I think I would have always wondered. They both have their PROS and CONS I guess. Feel free to email me at ucandpsc@gmail.com if you have any other questions. :)
hey Steve, How has your pouchitis been coming along? I hope all is well and you're feeling better. I wanted to ask you a few questions I'm about 3 weeks out from my take down and life is getting better every day, I'm going about 10-12 times a day though and it's becoming frustrating not being able to sleep at night because i usually go 3-4 time at night. (I know everyone's recovery is different) but what would you say is the average time it takes someone to reduce bowel movement to 4-6 time a day or less. Also I take Imodium and Benefiber while both help me they also cause me to get painful cramps in my stomach or intestine. do take any of these and do you get that feeling or have you ever heard of anyone else getting cramps in their stomachs. Thank you again for you videos very informative and helpful both gives me hope that all will eventually settle down to a point i can have a normal life again . thanks
Hey Ramon! 3 weeks out already! WOW! Time is FLYING! I would check with your surgical/GI/pouch nurse/team but I think that 3 weeks out and 10-12x/day is still a lot. And I hear you on the night time sleep interference! I haven't taken any fiber supplements since having my Jpouch. I know when I've taken them in the past they tended to give me cramps/gas. Also, my team told me NOT to take any fiber supplements for a couple months after starting my Jpouch to wait until things leveled out a bit as fiber CAN make you go more. I had taken up to 4 or 6 Imodium/day and the Imodium did seem to help a lot although I REALLY had to figure out WHEN to time it with my meals to get the best effect. I DID get some cramp type feelings in my lower abdomen/pouch at times and with time these went away. I would think you should be down around 8-10x/day by now? Just my guess. I would also recommend stopping the fiber supplement and just stick with the Imodium. You may have already done this, but I would try to stop eating by 6ish each night and limit your liquid intake also after that time. Looking back, I feel like I may have had some mild pouchitis from the initial use of my Jpouch as even once things were "normalized" 8 or 10 months post, there were still some issues that cleared up once I started the antibiotic for the pouchitis. Hope this helps? Feel free to use my email if you'd rather not speak so publicly...:). ucandpsc@gmail.com And YES, everything WILL settle down to where you can have a normal life again! It does take time. I would say I probably started feeling more "normal" around 8 months or so??
I also take Cipro daily...1 tab of 500mg. Seems to keep things in check. Go for a scope next week just for check up. Started using my Jpouch in April of 2013.
Hello sir!I hope you are doing well now.I am from India.My husband also suffers from same problem.He now has chronic pouchitis.Most of the times, he passes blood in stool.He takes antibiotics regularly.I am always scared of his condition.
Do you have Uclerative Colitis and PSC??? If so... I do too and I've never met someone like me! I too have a ileostomy but I haven't gotten mine reversed yet. And I'm only 16. I find it funny because were so much alike. Message me? I mite have a couple questions if u don't mind. Thanks!
Thats awesome to hear,your a great insperation,& your videos are continuing to be very helpful -as always THANKS
I am so proud of you for sharing this entire journey... so very inspired and loving you with all my heart!
Thank you my inspirational cousin! ;)
THANK YOU for posting these videos. You've been a tremendous help to me. Like you, I'm also considering colectomy to eliminate cancer risk.
You are VERY welcome! I'm glad that I can/could "pay it forward." I wish you clarity and contentment with you decision making!
I want to thank you for sharing your videos I recently had my take down surgery a week ago 3/11/14. But seeing your videos have really helped me get through some of the tough times the I had when I had the temporary ilieostomy, gave me hope and knowing that it would all get better soon. I love the fact that I no longer have an ostomy and an figuring out my pouch pretty quickly Thanks again! !
Hey Ramon! Congrats on your take down! I remember how nice it was to finally get rid of the ostomy. It was such a long road!
And thank you for letting me know that the videos helped! :) That means a lot!
Don't stop sharing.I go Friday 16, 2015 for a total removal So inspiring. You have given me ALOT of hope TY
You go TOMORROW? Congrats! I know that may sound funny NOW but just wait! It SHOULD be a better life for you (depending on why you're having it done of course!) I'll send positive energy your way!
Woah! AMAZING news! What a difference in BM's per day! I can't imagine how relieved you must feel, knowing that things worked out so well.
Also, that beard you're rocking looks good on you.
Yeah, like I say in the video, hind sight is 20-20 and I was fine living at the level I was at. But to find out that things can get even better is AWESOME!
And thanks for the praise on the beard! Figured I'd grow one until the weather reaches AT LEAST 50 degrees...I'm SO OVER winter! LOL!
UCandPSC It goes to show you that we shouldn't settle for "good enough" and always strive for better - it is possible!
I was speaking with someone from Alberta today and he was saying it was -50 the other day (that's MINUS 58 Fahrenheit!!). Yeah, let's just hope that summer comes fast!
Vegan Ostomy I may steal you're saying..."don't settle for good enough...always strive for better"!
Just want to let u know this was really nice to see u so open about this. I also had ulcerative colitis and got the three devil surgeries, and now have pouchitis and everything u have said has happened to me to the tee and it's great to hear of not being the only person to be dealing with this. VSL 3's are horrible and expensive! Steroids are horrible! Remicade is horrible! And all the antibiotics are horrible!!! Lots of love for u!
Hey Dayna! SO NICE to hear from you! I hope things are good now? I did have a question for you as you seem to have gone through and had the exact same process I've had. Do you have any nighttime issues w/ loss of stool since the pouch?
I am have my takedown tomorrow Dec.9, 2014............... I am really excited. I have been watching a few of your videos now I know what to expect and look for. Thanks
Hey girlieo37! I hope your takedown went smoothly and you're doing well!
This is a weird comment, but I too have UC and currently a stoma (considering a j-pouch) and we look a like! You look like you could be my relative for sure. Thank you for being so candid and sharing your journey. I hope your j-pouch is still working for you?
Hi I firstly wanted to say thank you for your videos they really provide a hope and inspiration that we are not indeed alone. I also have UC and PSC and at that the moment maybe on my way to surgery. I just wanted to ask you which hospital did you have yours done and if you recommend anywhere at all?
Thank you
Do you ever regret getting the jpouch? Do you think you were better off with the exterior bag? I currently have the exterior bag for about 7 months because I developed colon cancer and when my colon was removed the surgeon felt I was better off waiting to get the j pouch. The exterior bag is awesome in the sense that I have literally no stomach issues it just sucks to have a bag on your body and the skin where the bag goes is very sensitive.
Hey Reina! I definitely do not regret getting the jpouch. I do seem to have chronic pouchitis which is not uncommon for people who also have the PSC liver disease but it is managed with a daily antibiotic. And I do seem to have some night-time leaks and managed with a pad in underwear (nothing major) but I would still rather live like this than with the UC OR the bag. Although I have to say, IF I had to go back to the bag, I wouldn't mind that either as NOT having to use the bathroom AT ALL (well, relatively speaking...LOL!) was AWESOME! But if I didn't at least TRY the jpouch, I think I would have always wondered. They both have their PROS and CONS I guess. Feel free to email me at ucandpsc@gmail.com if you have any other questions. :)
hey Steve, How has your pouchitis been coming along? I hope all is well and you're feeling better. I wanted to ask you a few questions I'm about 3 weeks out from my take down and life is getting better every day, I'm going about 10-12 times a day though and it's becoming frustrating not being able to sleep at night because i usually go 3-4 time at night. (I know everyone's recovery is different) but what would you say is the average time it takes someone to reduce bowel movement to 4-6 time a day or less. Also I take Imodium and Benefiber while both help me they also cause me to get painful cramps in my stomach or intestine. do take any of these and do you get that feeling or have you ever heard of anyone else getting cramps in their stomachs. Thank you again for you videos very informative and helpful both gives me hope that all will eventually settle down to a point i can have a normal life again . thanks
Hey Ramon! 3 weeks out already! WOW! Time is FLYING!
I would check with your surgical/GI/pouch nurse/team but I think that 3 weeks out and 10-12x/day is still a lot. And I hear you on the night time sleep interference!
I haven't taken any fiber supplements since having my Jpouch. I know when I've taken them in the past they tended to give me cramps/gas. Also, my team told me NOT to take any fiber supplements for a couple months after starting my Jpouch to wait until things leveled out a bit as fiber CAN make you go more. I had taken up to 4 or 6 Imodium/day and the Imodium did seem to help a lot although I REALLY had to figure out WHEN to time it with my meals to get the best effect.
I DID get some cramp type feelings in my lower abdomen/pouch at times and with time these went away.
I would think you should be down around 8-10x/day by now? Just my guess. I would also recommend stopping the fiber supplement and just stick with the Imodium. You may have already done this, but I would try to stop eating by 6ish each night and limit your liquid intake also after that time.
Looking back, I feel like I may have had some mild pouchitis from the initial use of my Jpouch as even once things were "normalized" 8 or 10 months post, there were still some issues that cleared up once I started the antibiotic for the pouchitis.
Hope this helps? Feel free to use my email if you'd rather not speak so publicly...:). ucandpsc@gmail.com
And YES, everything WILL settle down to where you can have a normal life again! It does take time. I would say I probably started feeling more "normal" around 8 months or so??
Cipirofloxacin is what I typically get prescribed. How long since your reversal?
I also take Cipro daily...1 tab of 500mg. Seems to keep things in check. Go for a scope next week just for check up. Started using my Jpouch in April of 2013.
Hello sir!I hope you are doing well now.I am from India.My husband also suffers from same problem.He now has chronic pouchitis.Most of the times, he passes blood in stool.He takes antibiotics regularly.I am always scared of his condition.
Do you have Uclerative Colitis and PSC??? If so... I do too and I've never met someone like me! I too have a ileostomy but I haven't gotten mine reversed yet. And I'm only 16. I find it funny because were so much alike. Message me? I mite have a couple questions if u don't mind. Thanks!
I could recommend some suggestions for long term care of the pouch. Dr. Scott Willmen Please contact me
Try 6 times just at night! 20 or more times in 24 hours...
life of a j-poucher with chronic pouchitis!😒😝🙁
MommaSchmoo Omg sorry to hear that? Have you tried any antibiotics or anything?