Just to be sure....try no gluten for 1 month as it takes this long to get out of your system. My #1 enemy was gluten and I never knew this. My GI dr did a celiac genetic blood test and I was shocked it came back positive. Gluten makes me bleed and blocked up the worst! This surgery is forever and I wished I’d known all this before having mine. Gluten is highly inflammatory and it takes 30 days to get it all out of your system. This surgery won’t fix your disease and you’ll still have issues on/off after sadly. Wish I had known this too. All my best to you and wishing you good health ongoing
@jhills posted:Just to be sure....try no gluten for 1 month as it takes this long to get out of your system. My #1 enemy was gluten and I never knew this. My GI dr did a celiac genetic blood test and I was shocked it came back positive. Gluten makes me bleed and blocked up the worst! This surgery is forever and I wished I’d known all this before having mine. Gluten is highly inflammatory and it takes 30 days to get it all out of your system. This surgery won’t fix your disease and you’ll still have issues on/off after sadly. Wish I had known this too. All my best to you and wishing you good health ongoing
Oh wow, so you had Celiac's and UC? I was tested for Celiac's back when I was diagnosed and it was negative, so I never really worried about gluten after that. I suppose it couldn't hurt to give it a try for a month. Thank you.
The only 2 tests that are accurate for celiac are a biopsy of your small intestine lining or the genetic blood test your regular doctor can order to know for sure. I’ve had trouble with severe constipation since birth and intestines bleeding. Finally had accurate diagnosis in my twenties for UC. Once I had my final Jpouch surgery, within 3 months this same attacking disease remain feared itself and went to my lungs to make its home. It is rare but UC can go to other places in the body called extra manifestations of bowel disease. Good GI drs know UC can go to the eyes, kidneys, liver and lungs. 2 years ago when I cut out all inflammatory foods gluten and all animal products....my lungs and jpouch have been quiet with Zero issues. A Jpouch only lasts so many years and I wish I’d tried everything before having surgery. I just didn’t know but am thankful for this surgery of course.
Sorry typo ....remanifested itself into my lungs
Just a clarification, a j-pouch does not have an expiration date. However, a colectomy is forever and you need to be sure about it. I delayed over 6 months and wound up having to have my colectomy while on high dose prednisone. Not the best choice. I was on an elemental formula diet for a month to try to turn it around, but no luck for me.
Jan 
@Sara14 posted:Thank you for the reply and advice! I've been vegan (no meat, eggs or dairy) for about 9.5 years now and eat really healthy overall. I do eat gluten, and I eat tomatoes or tomato sauce about once a month. It would be wonderful if I could control my UC with diet-- that would be a dream come true! I've always been one who never noticed food having any effect on my disease though, unfortunately. That's great to hear eating that way has been helping you so much!
There is guy on YOUTUBE and his name is Kenny Honnas, he controls his through food and diet. I would suggest checking him out
@Lauren Of Emerald City posted:There is guy on YOUTUBE and his name is Kenny Honnas, he controls his through food and diet. I would suggest checking him out
Oh, I've seen that guy. He claims you have to eat meat and dairy to cure UC. Kind of a quack, in my opinion. I don't believe I can fix my disease with diet, personally. Maybe people with milder disease can do that. And since I don't have Celiac's, I'm not at all worried about gluten. Thanks for trying to help though.
@Jan Dollar posted:Just a clarification, a j-pouch does not have an expiration date. However, a colectomy is forever and you need to be sure about it. I delayed over 6 months and wound up having to have my colectomy while on high dose prednisone. Not the best choice. I was on an elemental formula diet for a month to try to turn it around, but no luck for me.
Jan
Thank you for this clarification. I saw that written a few places on the forum and was concerned if the jpouch generally doesn't last a lifetime.
So here’s the thing. There are no guarantees. If you have IBD, you have it for life. Even if you have UC and your colon is removed, you still have IBD. Some people wind up with pouch failure, but the failure rate is low, 3-20% or so, depending on what study you read. That said, if your colon is toast, there is a limit on how long you can go forward without colon removal. We all hope for the diet cure, or the next new drug, or the elusive spontaneous remission. I was lucky to have a 20 year spontaneous remission. It was great while it lasted.
You just don’t know if your j-pouch will last your lifetime, be an early failure, or a late failure. You don’t know if you will have a heart attack, get diabetes, or cancer. This is not to be morbid or fatalistic, but to stress that we really have little control over our future health (other than making the obvious good health choices). I have been living the IBD life for 50 years (age 15-65), so accepting uncertain futures has been important for my sanity.
Jan
@Sara14 posted:Thank you for this clarification. I saw that written a few places on the forum and was concerned if the jpouch generally doesn't last a lifetime.
It goes by person to person. I talked with a person that has had their J-pouch for literally over 40 years. And I talked to some that had it for less than a year, its depends on what happens to the person. But do not worry, us IBD people can through anything! I think the most important thing is to stay in the moment and enjoy present
@Sara14 posted:Oh, I've seen that guy. He claims you have to eat meat and dairy to cure UC. Kind of a quack, in my opinion. I don't believe I can fix my disease with diet, personally. Maybe people with milder disease can do that. And since I don't have Celiac's, I'm not at all worried about gluten. Thanks for trying to help though.
Oh you do not have to eat meat! I am a vegetarian myself, I never tried it his way since I lost my guts before I saw him. He is very adamant about how the Vegan diet works against UC. He is has other cool videos that may work for you until you get your pouch.
And yeah I agree with you, if I had my pouch, i do not think his way would cure my disease either but there is only one way to find out. He has quite a few videos on there that us vegetarians can follow, Check out his channel and read all the titles of the videos and see which ones can help, he has vegan/vegetarian options
Thank you.
Everyone is free to do what you want, but I never would take medical advice from a You Tube channel personality. This is one person’s experience. It is anecdotal and by no means any indication of any sort of “cure.”
As I have mentioned before, I went into a spontaneous remission (after initial standard treatment with prednisone). This lasted over 20 years without any guidance from a health guru. I ate whatever I wanted. That was my experience, also anecdotal. My son also had pancolitis and has been in remission for over 10 years by doing nothing in particular. His experience, anecdotal too.
I am not saying anything against a varied and healthy diet and general fitness, but it is NO CURE for UC!
Jan
This video of Dr Remzi talking about fixing failed j-pouches might be helpful to add to your decision making.
https://m.youtube.com/watch?v=9SqugsdlN9w
I agree you have a hard choice. I think this video has figures in it of failure/revision rates, so you could think also about if your pouch needs further work, how hard would it be then to attend the Cleveland Clinic to get it sorted out.
I worry a bit being 2 hours away from my surgeon (or any j-pouch surgeon) as I live in thecountry, so I definitely appreciate 5 hours is something to think seriously about.
@Kushami posted:This video of Dr Remzi talking about fixing failed j-pouches might be helpful to add to your decision making.
https://m.youtube.com/watch?v=9SqugsdlN9w
I agree you have a hard choice. I think this video has figures in it of failure/revision rates, so you could think also about if your pouch needs further work, how hard would it be then to attend the Cleveland Clinic to get it sorted out.
I worry a bit being 2 hours away from my surgeon (or any j-pouch surgeon) as I live in thecountry, so I definitely appreciate 5 hours is something to think seriously about.
Thank you! I'll definitely check out that video.
This is a great video.
"Repetition is the mother of skills" on 3:12
If you will not watch the entire video, at least hear what he says at 3:12.
Thanks all. I watched half the video last night and then fell asleep. Will watch the rest soon.
I have a third surgeon option I'm looking into now, too. There is another surgeon close to me who may have slightly more experience with j-pouches than my current surgeon. They work in the same office, and I don't want to offend my current surgeon, but I did just call and leave a message to see if I can have a consult with him. His fellowship was in colon and rectal surgery at Cleveland Clinic in Florida and residency at Mount Sinai. And I spoke to one of his j-pouch patients on the phone for about an hour the other week, and she said he was wonderful. She has had zero problems with her pouch in 10 years. I know that is only one person though.
I'm going to look more into at least getting a consult at Cleveland Clinic, too.
@Sara14 posted:Thanks all. I watched half the video last night and then fell asleep. Will watch the rest soon.
I have a third surgeon option I'm looking into now, too. There is another surgeon close to me who may have slightly more experience with j-pouches than my current surgeon. They work in the same office, and I don't want to offend my current surgeon, but I did just call and leave a message to see if I can have a consult with him. His fellowship was in colon and rectal surgery at Cleveland Clinic in Florida and residency at Mount Sinai. And I spoke to one of his j-pouch patients on the phone for about an hour the other week, and she said he was wonderful. She has had zero problems with her pouch in 10 years. I know that is only one person though.
I'm going to look more into at least getting a consult at Cleveland Clinic, too.
GREAT!!! Thanks for the update! Do not worry about hurting doctors feelings if you do not trust a doctor. This is your body and we only get one body. Its your right to choose a doctor that you feel comfortable with. Thank goodness you are well enough to choose one! At lot of us did not get that choice.
@Lauren Of Emerald City posted:GREAT!!! Thanks for the update! Do not worry about hurting doctors feelings if you do not trust a doctor. This is your body and we only get one body. Its your right to choose a doctor that you feel comfortable with. Thank goodness you are well enough to choose one! At lot of us did not get that choice.
Thank you! I know, it's just so hard for me to find good doctors and I still want her to see me for the other issue, so I didn't want to upset her. Lol. But thank you for saying that. And yes, I am lucky that I don't need emergency surgery right now...although then I wouldn't have to make this decison....lol jk. I still have Xeljanz to try as well, but it scares me and my GI's office is being extremely slow and also making me get another scope before he will let me even start on it. I've been waiting for over a week for him to officially submit the scope request so I can even get it scheduled. I'm sure you can all relate to the utter frustration of dealing with certain doctor's offices. Still on 30 mg pred at the moment. :/ Thanks for all the support.
@Sara14 posted:Thank you! I know, it's just so hard for me to find good doctors and I still want her to see me for the HPV anal condyloma issue, so I didn't want to upset her. Lol. But thank you for saying that. And yes, I am lucky that I don't need emergency surgery right now...although then I wouldn't have to make this decison....lol jk. I still have Xeljanz to try as well, but it scares me and my GI's office is being extremely slow and also making me get another scope before he will let me even start on it. Still on 30 mg pred at the moment. :/ Thanks for all the support.
You are welcome my dear Sorry to hear you have HPV in your anus, I can only imagine how hard that is, especially when you get surgery. I like that you are so open to talk about that, your brave! I hope the HPV is not anywhere else