NEVER EVER EVER  choose a surgeon that only does one or two a year! I am not saying all of them will mess up but surgeons like that tend to mess up surgeries that big. Trust a surgeon that does close to 80 a year, if you have to temporarily move to a state to get a good surgeon, trust me!!! Is not worth it to settle. A lot of people that have gotten J-pouch surgeries trusted the wrong doctor and it had bad outcomes.Trust someone else for sure.

I would call around your area and patiently find a different surgeon.

Thanks for the input. Unfortunately, there is only one guy who does more of them in my state but I was told even he probably only does maybe 25 or so a year. And I saw him once for an office consult about another issue years ago, and he was an awful person. Lol. I'll keep researching and thinking it over.

@Sara14 posted:

Thanks for the input. Unfortunately, there is only one guy who does more of them in my state but I was told even he probably only does maybe 25 or so a year. And I saw him once for an office consult about another issue years ago, and he was an awful person. Lol. I'll keep researching and thinking it over.

Definitely listen to your gut, literally lol. Do you think you want to move?

There is substantial value in choosing a surgeon who has plenty of experience at the procedure you’re undertaking. Nevertheless, a good, trustworthy surgeon also knows and acknowledges what they ought not to undertake. I’d probably try to find a way to get to the more experienced folks, but I also recognize the hardships that entails. Perhaps your first challenge is to work out suitable pet care, which may require money and patience to make it functional. You’ll need this even if your surgery is local.

“she told me creating the j-pouch is not a difficult surgery”

Wow!

This is so untrue. In Europe they give institutions permissions to perform this surgery only if they meet a certain number of surgeries per year.

Dr Remzi at NYU makes 7 pouches a week, half of which are repairs of failed j-pouches, and he says that this is such a complex surgery that only surgeons that perform very large numbers of this surgery per year should do it.

This level of confidence is usually comes from ignorance. Do not trust this Dr.

She's actually a great doctor who I've been seeing for 6 years. She said the actual creation of the pouch isn't difficult...maybe how I typed it came off wrong but she is not ignorant whatsoever. She does all the rest (colostomies, etc) regularly, just not creating a pouch, so that's why she mentioned that when I mentioned my concerns. She wasn't being arrogant like you're saying. She does lots of colo-rectal surgeries. This practice just doesn't see many jpouches. And I spoke on the phone for an hour to a patient of my surgeon's colleague who does the same number of pouches as she does. The patient had nothing but great things to say about her surgeon. He also studied at Cleveland Clinic. So you guys are saying every single successful jpoucher goes somewhere far away and/or literally moves to another state? I highly doubt most people go to those extremes. I'm still even deciding about the pouch... Some of the people chiming in here have 15 or more BMs a day years out. That to me is far from successful and scary.

Maybe I should try to exhaust more other options before surgery because what I'm reading on this is forum is scaring me. I read in another post someone say not to exercise much. Just a few years ago, I was running ultramarathons and I also like backpacking and doing long hikes when my UC is under control. If I couldn't be active after surgery, that would really suck for me. I also eat plant-based. Maybe surgery isnt the answer for me? I just really don't want to go far away for the surgery. I want to go to the surgeon I've had for 6 years. It's so hard for me to find a doctor I trust and really like.

Scott, thank you. I was told the average hospital stay is only 3 to 4 days. If that is true, I would not need pet care. Obviously, I would have a back up plan if I had to stay longer.

Once you have a j-pouch, you will see that frequency matters less than you think. What matters is pain and suffering.

If there is no pain and suffering, but simply high frequency, it does not matter. People go to pee many times a day, so it becomes like that. Nobody knows whether you pee or poo in the restroom, so it is also socially acceptable to use the restroom with that frequency.

if there is urgency, pain and incontinence, that is far from successful.

Many people use local surgeons, and many travel from across the world to have surgery with the top surgeons. It is your choice. With a top surgeon, there is no gamble.

I understand. Thanks. What I want is no pain and not to be stuck on steroids because it is ruining my bones and I am a marathoner. I edited my above reply to try to word things more clearly.

I have practically no support system. It's hard enough finding a driver for a colonoscopy. I don't see how I can drive 6 hours so many times and make it work. I think most people have family and stuff to help them. So then I'd have to drive back for every follow-up too? What if there was a complication?

@Sara14 You are wise to think through how the logistics can be managed. Although I traveled a substantial distance (plane ride) for my surgery, I had a fantastic support system in both locations, and I chose a somewhat riskier single-stage procedure so I’d likely only have to make the trip once. I’m not sure what I would have done in the absence of that support system, but I know the prospect of surgery far from home would have seemed grim under those circumstances.

One option you could consider is to break this up into manageable, smaller things. In the short run it sounds like getting off steroids is most immediate medical need, so a subtotal colectomy (leaving enough rectum for a future J-pouch) with an end ileostomy would probably accomplish that, leaving you plenty of time and choices going forward. Some people here have stayed that way for years before deciding to proceed with J-pouch construction.

There is an array of strongly held opinions expressed here, as you’ve noted, but only some of them will be useful to your circumstances and preferences. No one can reliably predict what your tolerance will be for (for example) marathoning, whether the obstacle is hydration or steroid-induced bone damage, and opinions about it are often unhelpful.

However you choose to proceed, I hope you have great success!

Just my 2 cents. I would sacrifice and go to Cleveland clinical. If you gamble and they screw up your pouch you will be sorry. I drove close to 4 hours to go to Cleveland clinic.

The local surgeon who performed my emergent sub-total in 2016 said he could create the pouch too. I will always appreciate his skill with the first surgery. However I drove 8 hours to Cleveland a few years ago. Gives you peace of mind knowing all the surgical team is experienced.

Granted I have a wife who was was able to assist and drive. Could not have done it without her. I hope you can find someone who can help you.

Thank you all so much! Sorry, I'm a bit stressed and emotional thinking about all of this, but I really appreciate all the feedback and insight.

For those who went to Cleveland Clinic, is there a particular doctor you would recommend? I've looked over their website many times, but it's hard to even know who to set up a consult with. They all look good.

@Scott F posted:

@Sara14 You are wise to think through how the logistics can be managed. Although I traveled a substantial distance (plane ride) for my surgery, I had a fantastic support system in both locations, and I chose a somewhat riskier single-stage procedure so I’d likely only have to make the trip once. I’m not sure what I would have done in the absence of that support system, but I know the prospect of surgery far from home would have seemed grim under those circumstances.

One option you could consider is to break this up into manageable, smaller things. In the short run it sounds like getting off steroids is most immediate medical need, so a subtotal colectomy (leaving enough rectum for a future J-pouch) with an end ileostomy would probably accomplish that, leaving you plenty of time and choices going forward. Some people here have stayed that way for years before deciding to proceed with J-pouch construction.

There is an array of strongly held opinions expressed here, as you’ve noted, but only some of them will be useful to your circumstances and preferences. No one can reliably predict what your tolerance will be for (for example) marathoning, whether the obstacle is hydration or steroid-induced bone damage, and opinions about it are often unhelpful.

However you choose to proceed, I hope you have great success!

Thank you very much for this thoughtful reply.

@Sara14 posted:

Thank you all so much! Sorry, I'm a bit stressed and emotional thinking about all of this, but I really appreciate all the feedback and insight.

For those who went to Cleveland Clinic, is there a particular doctor you would recommend? I've looked over their website many times, but it's hard to even know who to set up a consult with. They all look good.

The guy from Cleveland clinic who did mine was Dr valente.

And on another note when I got sick and the removed my colon the doctor who did it lead me to believe everything was fine and he could do my jpouch. Thank God I went to Cleveland because when they opened me up Dr valente told me the guy was a hack and didn't know what he was doing. I might have been in bad shape if I let him create my pouch.

@Sara14 posted:

I understand. Thanks. What I want is no pain and not to be stuck on steroids because it is ruining my bones and I am a marathoner. I edited my above reply to try to word things more clearly.

I have practically no support system. It's hard enough finding a driver for a colonoscopy. I don't see how I can drive 6 hours so many times and make it work. I think most people have family and stuff to help them. So then I'd have to drive back for every follow-up too? What if there was a complication?

I think IBD people can get through anything

I know you have gotten some very forceful recommendations against using your current colorectal surgeon, but I am going to go a different direction.

There is a huge value in a surgeon you already have a rapport with and have trust in her skills. If she had not performed j-pouch surgery before, I would recommend you go elsewhere. However, she does perform this surgery, and nobody performs it frequently, as it is not that common of a surgery. She is a qualified colorectal surgeon too, so there is that. J-pouch surgery has been around long enough that the technique has been pretty much standardized and the more difficult hand sewn connection is quite rare (and also more likely to be a source of complications).

Another issue is follow up. Are you prepared to travel for follow up? You will likely have a multi-step procedure. The fact that you will be going back and forth is something to consider. Complications can and do occur with the best of surgeons and hospitals. Sure, top surgeons and centers often get very good results, but it can be difficult to get appointments, or even responses to your questions. Not a given, just something to think about. When I was sick and facing surgery, the last thing I wanted to do was travel.

Bottom line, there is no RULE about this. I know you came here for advice on this, but please consider all your options, and the pros and cons of staying local, or not. And please, do NOT listen to strongly worded warnings of doom. I actually had a general surgeon do mine way back when (1995). He projected confidence, spent ample time with me to explain every step of the surgery, and even called me at home. He became chief of surgery and later headed up the bariatric surgery department. He was a great guy, and in my backyard. I had complications, but not due to his lack of skill. They were due to my deteriorated condition.

I wish you the best in your decision on this. The decision to have surgery is difficult enough without feeling like you have to conform to other people’s advice.

Jan

Your gutt is Right! I found mine by calling the Crohns Colitiatis chapter in my state. They will tell you the Best surgeon to do Jpouch surgery laperoscopy meaning with tiny incisions about an inch long instead of the old fashioned way cutting you open with a huge incision down your middle. I have to speak from my heart thought and ask you to ask yourself....have you tried eating an anti inflammatory diet for 1 whole month? Meaning no gluten dairy meats or tomatoes or spicy items? If you could control your disease by eating the right foods wouldn’t you do it? I wish I had known more about foods before I had surgery. I’m 18 years out with jpouch and haven’t had a flare since I started eating this way and take vegan capsules of probiotics and other vitamins. That’s it! No more iron infusions, or anything and I’ve been good for 2 years now. I’ve had issues since birth and after jpouch surgery but not anymore cause I eat the right way ❤️ Good luck to you!

@Jan Dollar posted:

I know you have gotten some very forceful recommendations against using your current colorectal surgeon, but I am going to go a different direction.

There is a huge value in a surgeon you already have a rapport with and have trust in her skills. If she had not performed j-pouch surgery before, I would recommend you go elsewhere. However, she does perform this surgery, and nobody performs it frequently, as it is not that common of a surgery. She is a qualified colorectal surgeon too, so there is that. J-pouch surgery has been around long enough that the technique has been pretty much standardized and the more difficult hand sewn connection is quite rare (and also more likely to be a source of complications).

Another issue is follow up. Are you prepared to travel for follow up? You will likely have a multi-step procedure. The fact that you will be going back and forth is something to consider. Complications can and do occur with the best of surgeons and hospitals. Sure, top surgeons and centers often get very good results, but it can be difficult to get appointments, or even responses to your questions. Not a given, just something to think about. When I was sick and facing surgery, the last thing I wanted to do was travel.

Bottom line, there is no RULE about this. I know you came here for advice on this, but please consider all your options, and the pros and cons of staying local, or not. And please, do NOT listen to strongly worded warnings of doom. I actually had a general surgeon do mine way back when (1995). He projected confidence, spent ample time with me to explain every step of the surgery, and even called me at home. He became chief of surgery and later headed up the bariatric surgery department. He was a great guy, and in my backyard. I had complications, but not due to his lack of skill. They were due to my deteriorated condition.

I wish you the best in your decision on this. The decision to have surgery is difficult enough without feeling like you have to conform to other people’s advice.

Jan

Thank you so much, Jan! I really appreciate your perspective and you sharing your experience. I'm torn on what to do and keep going back and forth! But I completely agree...bedside manner and having someone I know and trust are huge to me!  Also, the follow-up is a biggie for me. That would end up being A LOT of travel! My mom told me she could fly out and be with me for the first surgery, so that made me feel a little better, but I would still largely be on my own the rest of the time. One of the downsides to being single and not having family closeby.

Right now I'm back on a course of prednisone and feeling okay for the moment, but I know once I get off it, my symptoms will come back again. At least I have a little time to make a decision and I don't need emergency surgery as of right now.

@jhills posted:

Your gutt is Right! I found mine by calling the Crohns Colitiatis chapter in my state. They will tell you the Best surgeon to do Jpouch surgery laperoscopy meaning with tiny incisions about an inch long instead of the old fashioned way cutting you open with a huge incision down your middle. I have to speak from my heart thought and ask you to ask yourself....have you tried eating an anti inflammatory diet for 1 whole month? Meaning no gluten dairy meats or tomatoes or spicy items? If you could control your disease by eating the right foods wouldn’t you do it? I wish I had known more about foods before I had surgery. I’m 18 years out with jpouch and haven’t had a flare since I started eating this way and take vegan capsules of probiotics and other vitamins. That’s it! No more iron infusions, or anything and I’ve been good for 2 years now. I’ve had issues since birth and after jpouch surgery but not anymore cause I eat the right way ❤️ Good luck to you!

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!

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

@Former Member 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.

@Former Member 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