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Hello! I apologize in advance this is so long. I've had UC 14 years. I only have Xeljanz left to try, and since none of the other biologics have worked for me, I have little hope that Xeljanz will do anything. I've begun to seriously look into j-pouch surgery now, and had a consult with a local surgeon a few months ago. However, I'm stressing out about choosing the "right" surgeon.

I live in Indiana, and I'm an established patient with a local colo-rectal surgeon whom I really like. She's been seeing me for an unrelated ongoing condition since 2015, and she has done one minor outpatient procedure on me and many in-office visits and treatments. She's one of the best doctors I've ever seen (and I'm very picky). She has amazing bedside manner, she is smart, she explains things well and thoroughly, she gives me plenty of time to ask all my questions, her staff is timely and kind. In short, I trust her and I also really like her.

However, the only problem I'm struggling with is her office doesn't see many j-pouch surgeries, and a few people online who have j-pouches all told me how important it is that I go to a surgeon who has done hundreds of j-pouches. My local surgeon said she only does about 1-2 j-pouches a year. When I kindly expressed my hesitancy about this, she told me creating the j-pouch is not a difficult surgery and she sounded confident in her ability to do the surgery. I know she treats a lot of cancer patients and does other colo-rectal surgeries all the time. I spoke to one of her patients who had Crohn's and had a temporary bag with a successful reversal and she had nothing but good things to say about our surgeon, but that patient did not have a j-pouch. They weren't able to connect me with a past patient of hers who has had the j-pouch done, which I found a little odd, but maybe since she only does 1 or 2 a year, there just aren't that many patients to choose from. She has 5-star ratings across the board on all the online "rate-a-doctor" platforms that I've seen.

I live about 6 hours away from the Cleveland Clinic. They no longer allow people in Indiana to do telehealth visits for their initial visit, so if I want to even have a consult with them, I first need to see a GI in person and then I guess a surgeon thereafter. If it was a little closer, there would be no question in my mind, and I would go there since they are supposed to be the best. However, needing to drive that far away 3, 4 or possibly 5 times and also being that far away from my surgeon in case I have any complications post-surgery, seems totally overwhelming and not ideal to me. Part of this is that I have a needy pet at home who is extremely aggressive with anyone but me and she is my whole world. I feel extremely anxious about leaving her alone for longer than a few days and if I went to Cleveland, that would add 2 days' of driving onto each visit. Plus, a 6-hour drive home after surgery doesn't sound like it would be pleasant. Without going into too much detail, I don't have much of a support system where I live and it's also very hard to just have someone come check on her since she is so aggressive with everyone but me.

Am I way overthinking all of this? Can someone please help me make this decision?

In summary: I would much rather just go to my local surgeon with whom I already have a positive relationship, but I obviously don't want a bad outcome and to end up worse off than I am dealing with my UC.

Thanks!

Last edited by Sara14
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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.

@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.

Last edited by Elif

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.

Last edited by Sara14

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.

Last edited by Elif

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?

Last edited by Sara14

@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!

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.

Last edited by Sara14
@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!

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