I am going to post my 10 year j-pouch review on October 13th because that is the day of my official surgery!!!
Post any questions you want me to answer or any topics you want me to talk about 
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Hi
i am facing acute pouchitis issues after 7 yrs surgery
i was absolutely fine all these years with occasional blockage
as adviced by my doc taking VSL3 and Metrogyl
today i saw some blood stains in my stool , is it normal , have you faced this condition if yes how did you handle
@HEMU posted:Hi
i am facing acute pouchitis issues after 7 yrs surgery
i was absolutely fine all these years with occasional blockage
as adviced by my doc taking VSL3 and Metrogyl
today i saw some blood stains in my stool , is it normal , have you faced this condition if yes how did you handle
When I post my review here, I talk a lot about how to prevent blockages. The trick is water. Drinking before, during, and after every meal. Drinking water after every bowel movement, drinking water throughout the day and drinking water at every red light, water is the magic. I put salt in my water so I do not lose salt.
The bleeding is not normal at all. I never had pouchitis but i know its frustrating!! The only time i had blood stains was when I took a NSAID without food in my stomach to coat the stomach lining from the NSAID pain medicines. NSAID are not reccommended for us to take but i do it anyway lol, but now that Itake NSAID with food, I have not had bleeding. I am surprised the VSL and anitibiotic have not taken care of the bleeding for you!!! How long have you been on those two medicines???
20 days
@HEMU posted:20 days
OH shit! You have been on it for a while! Yeah that is not normal. I would tell the doc ASAP!!! I think there is other treatments you can do but at the ending stage of medicines, biologics are going to start coming up in conversation. Are you open to biologics in the future if medicines dont help???
@Former Member posted:I am going to post my 10 year j-pouch review on October 13th because that is the day of my official surgery!!!
Post any questions you want me to answer or any topics you want me to talk about
Yes. Can you see if having now found the cause of UC and chrones if your docs know if the new treatments available and or being develope can help in any way with a j-pouch and other issues such as the spread of UC to the liver? See my post below....
The major breaklthrough discovery that a faulty gene ETS2 gene is 95% responsible for the cause of UC and chrones is outstanding. After living with UC for 45 years and the after effects of surgery I am extactic the the cause of these horrible conditions is now known. I always thought is was something to do with the immune systems reaction to bacteria - which seems not far off the mark.
Is anyone yet being treated in tests for the existing meds used for skin cancer that can turn down the faulty ETS2 gene?
@Paul123 posted:Yes. Can you see if having now found the cause of UC and chrones if your docs know if the new treatments available and or being develope can help in any way with a j-pouch and other issues such as the spread of UC to the liver? See my post below....
The major breaklthrough discovery that a faulty gene ETS2 gene is 95% responsible for the cause of UC and chrones is outstanding. After living with UC for 45 years and the after effects of surgery I am extactic the the cause of these horrible conditions is now known. I always thought is was something to do with the immune systems reaction to bacteria - which seems not far off the mark.
Is anyone yet being treated in tests for the existing meds used for skin cancer that can turn down the faulty ETS2 gene?
I think that is an excellent question and excellent statements you made.
Your first question: I did find out recently that the cause of IBD (crohns and colitis) is related to a gene mutation of some sort, I did not know the genes or gene associated with it but I am glad you posted about it. As far as the J-pouch is concerned, I did hear that Remicade and Entyvio are great biologics for us in the case if we have Pouchitis or inflammation in the J-pouch, but sadly I do not know too much more on that nor do I have experience with that considering i never had pouchitis but I think its worth researching that as much as possible.
Your second question: I am not sure if anyone is anyone being treated in tests for the existing meds used for skin cancer that can turn down the faulty ETS2 gene. I think we need to research that in depth too! I wonder if the Crohns and Colitis Foundation is working on that currently. I think you would be great in making those two suggestions to the Crohns and Colitis Foundation, I think they would love to hire you to make that company better haha. I will look into those two questions more in depth and see what I can find.
Great ideas
@HEMU posted:20 days
How are you doing now???
Lauren - i am much better now infact had discontuned all meds
my local Dr did a sigmoidscopy on Saturdat and ulcers were seen, waiting for Biopsy report
in interim he put me in heavy dosage of mesacol + Enterogermina and septran
I want get managed to decency then go for inperson consultancy of my colorectal surgeon who is in a different city Sad part is he is locked for next 90 days them christmas holidays will cm in
@HEMU posted:Lauren - i am much better now infact had discontuned all meds
my local Dr did a sigmoidscopy on Saturdat and ulcers were seen, waiting for Biopsy report
in interim he put me in heavy dosage of mesacol + Enterogermina and septran
I want get managed to decency then go for inperson consultancy of my colorectal surgeon who is in a different city Sad part is he is locked for next 90 days them christmas holidays will cm in
Dan!!! He did it on a Saturday?!?! That is pretty cool!!! Him seeing ulcers is prettty concerning!!! I wonder if its pouchitis or Crohns??? Please let me know when you find out!
That really stinks that your colorectal surgeon is booked out!! Try calling everyday for cancellations and you may be able to grab an earlier appointment. Calling around 10 and in the late afternoon is good because that is when people tend to cancel
Thanks for the suggestion
I am not very comfartable with the local doctor .Sounds more helpless than a cofident healthcare professional
@HEMU posted:Thanks for the suggestion
I am not very comfartable with the local doctor .Sounds more helpless than a cofident healthcare professional
If your not comfortable then listen to your intuition!!! I learned that the hard way, always listen to your intuition!!!
Lauren - great thought in fact i continued with VSL3 for longer period
in initial days took Oflox and Metrogyl
Above steps helped
last 1 week i am in good shape and hope this continues( compared to a month back)
@HEMU posted:Lauren - great thought in fact i continued with VSL3 for longer period
in initial days took Oflox and Metrogyl
Above steps helped
last 1 week i am in good shape and hope this continues( compared to a month back)
Oh good!!! They made VSL4 now! I am not sure if you heard of that or not but I heard about VSL4 recently.
I am glad its working for you!!! I hope it continues. This J-pouch journey is trial and error and lifelong.
Agree it is trial and error to find out what suits you best
no not heared of VSL4 yet
at least it has reached some stability but with medication, will have to see when I discontinue meds
@HEMU posted:Agree it is trial and error to find out what suits you best
no not heared of VSL4 yet
at least it has reached some stability but with medication, will have to see when I discontinue meds
Yeah I agree with everything you said. Unfortunately, some people have to stay o that for life. I would not be surprised if you needed it for life. If you do need it for life, I hope you will be able to cope with it mentally and physically.
Here is vsl4 : And the best part, vsl4 does not need to be refrigerated
VSL4 is not intended for pouchitis management or prevention, or even for IBD.
Here is my question, @Former Member: You’ve posted that you use the toilet many times per day. Even though you’re apparently satisfied with this result, an outcome like that would create a serious problem for many people, who might be unable to perform their jobs or engage in their regular activities away from bathrooms. Why do you think you should advise people how to manage their J-pouches without warning them that some of your advice might lead to many bathroom trips daily?
@Scott F posted:VSL4 is not intended for pouchitis management or prevention, or even for IBD.
Here is my question, @Former Member: You’ve posted that you use the toilet many times per day. Even though you’re apparently satisfied with this result, an outcome like that would create a serious problem for many people, who might be unable to perform their jobs or engage in their regular activities away from bathrooms. Why do you think you should advise people how to manage their J-pouches without warning them that some of your advice might lead to many bathroom trips daily?
I already told you once recently, so I am going to say it again- hopefully this time you will get it: Your a rude person and have been rude to me for years. I am not going to correspond to your rudeness.
Lauren of Emerald City,
Your post is totally rude and obnoxious on many levels. Everything that Scott said in his post you responded to is 100% true. Your are not completely truthful with others based on what you have posted in the past about your own condition, unless those other posts were false. Scott is probably the single most reliable and valuable poster on this board, over the course of time and I have been on this message board for many years. His posts are based on legitimate knowledge, scientific facts and his own experience. He has helped many people here and he doesn't deserve such a snotty response from someone who knows far less. Your posts mostly strike me mostly as attention seeking. Just look at your own thread titles. If you want to help others be honest about your own experience, and don't be a fake cheerleader who isn't coming clean with her own situation.
Also, you are also frequently posting misleading and bad advice to others, such as telling people to NEVER hold BMs in, which is not the advice any surgeon gives right after surgery. An unexpanded pouch may or may not be the reason you ended up with the frequent BMs you have, and you should not be repeating such advice to others especially if they are right after takedown. It's simply not what any good surgeon tells his or her patients.
@CTBarrister posted:Lauren of Emerald City,
Your post is totally rude and obnoxious on many levels. Everything that Scott said in his post you responded to is 100% true. Your are not completely truthful with others based on what you have posted in the past about your own condition, unless those other posts were false. Scott is probably the single most reliable and valuable poster on this board, over the course of time and I have been on this message board for many years. His posts are based on legitimate knowledge, scientific facts and his own experience. He has helped many people here and he doesn't deserve such a snotty response from someone who knows far less. Your posts mostly strike me mostly as attention seeking. Just look at your own thread titles. If you want to help others be honest about your own experience, and don't be a fake cheerleader who isn't coming clean with her own situation.
Also, you are also frequently posting misleading and bad advice to others, such as telling people to NEVER hold BMs in, which is not the advice any surgeon gives right after surgery. An unexpanded pouch may or may not be the reason you ended up with the frequent BMs you have, and you should not be repeating such advice to others especially if they are right after takedown. It's simply not what any good surgeon tells his or her patients.
I am not going to waste my time reading all of this. Just please leave me alone, you and Scott have been nothing but rude to me for years. I want you two to leave me alone!
@Former Member posted:I am not going to waste my time reading all of this. Just please leave me alone, you and Scott have been nothing but rude to me for years. I want you two to leave me alone!
Having someone tell you that you are posting nonsense when you are isn't being rude, it's being real.
@CTBarrister posted:Having someone tell you that you are posting nonsense when you are isn't being rude, it's being real.
I have not talked to you or scott for years. I am not going to respond to you or Scott anymore. This is my last response. Leave me alone.