Thank you. I don't know how I got it there either...kind of embarassing to have that there, but I know you all probably do not care, lol. My surgeon said it can just show up there and me having IBD and all the immunosuppressing meds may be why it hasn't just stayed away like it would for most people. It doesn't give me any symptoms, they just saw it during a scope years ago and since there is a small risk of cancer if it's not treated, they keep treating it, which is a pain in the ass (literally...lol). I don't have it anywhere else, thankfully. I guess that area of my body just hates me. She had to do surgery once to remove the lesions back in 2015 and then they stayed away for about 4 years. I wonder how that would work if I needed anal surgery for this after I get a j-pouch... I asked her that at my last office visit and didn't get a very clear answer. But yeah, it's really nothing compared to my UC. Just an annoyance.

I just called Cleveland Clinic and they were able to get me in for an appointment with their head of the IBD GI department already in June! I was shocked I got in that soon! I cannot wait to go see someone who actually knows what they are talking about! My trust in my local GI is very much lacking and it's been a nightmare dealing with his office. It will be a bit of a drive, but maybe you are all right and it will be worth it. Even their receptionist was SO nice and helpful, not rude like my local GI's office is sometimes. I meet with the GI there June 22. They also gave me a telehealth appt. with the surgeon June 28.

@Sara14 posted:

Thank you. I don't know how I got it there either...kind of embarassing to have that there, but I know you all probably do not care, lol. My surgeon said it can just show up there and me having IBD and all the immunosuppressing meds may be why it hasn't just stayed away like it would for most people. It doesn't give me any symptoms, they just saw it during a scope years ago and since there is a small risk of cancer if it's not treated, they keep treating it, which is a pain in the ass (literally...lol). I don't have it anywhere else, thankfully. I guess that area of my body just hates me. She had to do surgery once to remove the lesions back in 2015 and then they stayed away for about 4 years. I wonder how that would work if I needed anal surgery for this after I get a j-pouch... I asked her that at my last office visit and didn't get a very clear answer. But yeah, it's really nothing compared to my UC. Just an annoyance.

I just called Cleveland Clinic and they were able to get me in for an appointment with their head of the IBD GI department already in June! I was shocked I got in that soon! I cannot wait to go see someone who actually knows what they are talking about! My trust in my local GI is very much lacking and it's been a nightmare dealing with his office. It will be a bit of a drive, but maybe you are all right and it will be worth it. Even their receptionist was SO nice and helpful, not rude like my local GI's office is sometimes. I meet with the GI there June 22. They also gave me a telehealth appt. with the surgeon June 28.

Great news! Good luck. I usually like taking the train for rides that that around 5 hours, it is very comfortable, and I can watch shows, surf the internet, whatever I would do sitting on my couch at home.Time passes by very fast. There are clean restrooms, too   Maybe there is a station near where you live.

@Sara14 posted:

Thank you. I don't know how I got it there either...kind of embarassing to have that there, but I know you all probably do not care, lol. My surgeon said it can just show up there and me having IBD and all the immunosuppressing meds may be why it hasn't just stayed away like it would for most people. It doesn't give me any symptoms, they just saw it during a scope years ago and since there is a small risk of cancer if it's not treated, they keep treating it, which is a pain in the ass (literally...lol). I don't have it anywhere else, thankfully. I guess that area of my body just hates me. She had to do surgery once to remove the lesions back in 2015 and then they stayed away for about 4 years. I wonder how that would work if I needed anal surgery for this after I get a j-pouch... I asked her that at my last office visit and didn't get a very clear answer. But yeah, it's really nothing compared to my UC. Just an annoyance.

I just called Cleveland Clinic and they were able to get me in for an appointment with their head of the IBD GI department already in June! I was shocked I got in that soon! I cannot wait to go see someone who actually knows what they are talking about! My trust in my local GI is very much lacking and it's been a nightmare dealing with his office. It will be a bit of a drive, but maybe you are all right and it will be worth it. Even their receptionist was SO nice and helpful, not rude like my local GI's office is sometimes. I meet with the GI there June 22. They also gave me a telehealth appt. with the surgeon June 28.

You are welcome, I definitely care, life is not fair unfortunately. I bet its hard to date with that as well. Do you know which person gave you that STD???

And that is great news! Try calling daily to get an appointment from a cancellation. That has helped me in the past lol.

Elif: Thanks! I'm excited to meet with them.

Lauren: It's actually super common so it isn't really a big deal. Over 75 percent of adults have had it. It just usually shows no symptoms and goes away on its own. If I didn't need colonoscopies for UC, I would never know I even had it. It can show up years after you get it from someone too so it's hard to know who you got it from, but I have my guesses, lol. Anyway, I only mentioned it because that's how I know my colo-rectal surgeon. Anyway, thank you for your concern and suggestions!

@Sara14 posted:

Elif: Thanks! I'm excited to meet with them.

Lauren: It's actually super common so it isn't really a big deal. Over 75 percent of adults have had it. It just usually shows no symptoms and goes away on its own. If I didn't need colonoscopies for UC, I would never know I even had it. It can show up years after you get it from someone too so it's hard to know who you got it from, but I have my guesses, lol. Anyway, I only mentioned it because that's how I know my colo-rectal surgeon. Anyway, thank you for your concern and suggestions!

I love your positivity!!!! Glad your doing well love

Keep us updated on everything! Remember to call for cancellations, that helped me many times! I cannot wait for your surgery in the future! You are very intelligent for getting on here and asking many questions! I did not have this opportunity before I got my surgeries, so happy you do!!!

Any good surgeon should welcome a second opinion and not hold it against you. Since you have the time to get a second opinion, it makes a lot of sense. You need to be sure and fully on board once you decide to go forward.

Jan

Thank you, ladies!

Now I'm back to not wanting to go there. I just got off the phone with the GI's nurse there and she was super rude. I don't understand why so many nurses are so incredibly rude? I was just asking normal questions like if they need any medical records before I drive 6 hours to see them! I have massive anxiety about travelling to a big city and having to be in a hotel during covid and everything else. I don't even know if I will go now. Sorry I keep posting here so much.

@Sara14 posted:

Now I'm back to not wanting to go there. I just got off the phone with the GI's nurse there and she was super rude. I don't understand why so many nurses are so incredibly rude? I was just asking normal questions like if they need any medical records before I drive 6 hours to see them! I have massive anxiety about travelling to a big city and having to be in a hotel during covid and everything else. I don't even know if I will go now. Sorry I keep posting here so much.

Please post as much as you like, especially on your own thread. As far as traveling during COVID-19 I’d observe that if you’re fully vaccinated (2 weeks past last shot) then basic precautions will be quite sufficient, and if you’re not vaccinated then you can correct that situation pretty easily. I can’t help you decide if you still want to travel to that practice, though.

@Sara14 Do you mind me asking where in Indiana you live? I mean not your street address, but which city?

I'm vaccinated but on 2 immunosuppresants, so I don't know if the vaccination is effective for me.

I'm in Nashville, Indiana, near Columbus and Bloomington and an hour south of Indy. I can't do public transportation, like trains that were mentioned before. I'm extremely claustrophobic.

Thanks.

Unfortunately, sometimes there is a certain “disconnect” when dealing with large facilities. They tend to run sort of like an assembly line. While they can be extremely efficient, accurate, and qualified, they can also be off-putting. Not always, just more likely. I think that in your state of mind you are better off getting your first second opinion from the local guy who was Cleveland Clinic trained. If that is a bust, then proceed with Cleveland Clinic.

You don’t want to tie yourself in a knot with just the consult phase! And, yes, please feel free to keep posting here, if only to vent.

Jan

Thank you, Jan!

@Sara14 posted:

Thank you, ladies!

Your welcome

@Sara14 posted:

Now I'm back to not wanting to go there. I just got off the phone with the GI's nurse there and she was super rude. I don't understand why so many nurses are so incredibly rude? I was just asking normal questions like if they need any medical records before I drive 6 hours to see them! I have massive anxiety about travelling to a big city and having to be in a hotel during covid and everything else. I don't even know if I will go now. Sorry I keep posting here so much.

I am sorry that happened hon, some nurses are very rude!!! I think we all have had our share of bad nurses and doctors, do not let them beat you though, you are resilient and and can overcome anything.

Post as much as you want, some people may be against it but just ignore them lol.

The doctors at the clinic might be nicer than that one nurse. I called a gastro facility before and the surgery scheduler was mean to me but the doctor there was very nice to me. Maybe you should possibly give them a chance and see what happens?

Hi Sara,

For what it's worth, when I had my surgery in 1996 I went through the very same anxiety and difficult thought process that you are now experiencing. Due to having a young child at home, I ended up choosing my local moderately experienced j-pouch surgeon instead of a more well known distant big city surgeon.  After a difficult recovery and terrible first year, I deeply regretted my decision. At my husband's urging we flew out to the Mayo Clinic in Rochester (which at the time was the mecca of J-pouch creation) to try to find out what was wrong.  After 3 days of testing, poking and prodding to see what was causing me such misery, their conclusion (to my surprise) was that the surgery was expertly done and there was nothing structurally wrong with the pouch or the surgery. My problems were the result of cuffitis, pouchitis, some narrowed loops of bowel and a few other things. It's been a tough road at times but eventually things straightened out. The pouch is not an issue in my life anymore. I don't take any meds, have 2-3 BM's a day and sleep like a baby through the night.

I just wanted to share this with you and wish you well in your decision. All things being equal it's always best to go for the most experienced person/location but these decisions are complicated and only you can decide what's best for you. Trust your heart and your intuition...it seems like you're making progress in getting this figured out.

Good luck...and have a nice night.

@ElizaB posted:

Hi Sara,

For what it's worth, when I had my surgery in 1996 I went through the very same anxiety and difficult thought process that you are now experiencing. Due to having a young child at home, I ended up choosing my local moderately experienced j-pouch surgeon instead of a more well known distant big city surgeon.  After a difficult recovery and terrible first year, I deeply regretted my decision. At my husband's urging we flew out to the Mayo Clinic in Rochester (which at the time was the mecca of J-pouch creation) to try to find out what was wrong.  After 3 days of testing, poking and prodding to see what was causing me such misery, their conclusion (to my surprise) was that the surgery was expertly done and there was nothing structurally wrong with the pouch or the surgery. My problems were the result of cuffitis, pouchitis, some narrowed loops of bowel and a few other things. It's been a tough road at times but eventually things straightened out. The pouch is not an issue in my life anymore. I don't take any meds, have 2-3 BM's a day and sleep like a baby through the night.

I just wanted to share this with you and wish you well in your decision. All things being equal it's always best to go for the most experienced person/location but these decisions are complicated and only you can decide what's best for you. Trust your heart and your intuition...it seems like you're making progress in getting this figured out.

Good luck...and have a nice night.

2-3 a day?!?!?! LUCKY! LOL. i go 14-20 but still happy. I love that you sleep like a baby through the night lol.

@Sara14 My pouch journey was an emergency situation and the entire treatment, the three step surgery spread out to 9 months, really changed my personality.  I no longer stress out over things that I used to. I even don't stress out over things that most people would do.

Want an example? I am in the house buying process now. One issue after an other, constant uncertainty, all with financial and emotional consequences. Most people dread the house buying process because of this. But I am calm as a rock! We bought a house in 2016, and I remember how much I was swayed by excitement, and anxiety over the uncertainties in this process back then. Now, I just don't care.

This has been so helpful. I won the bidding war on my first try in this terrible housing market. Once there was room for negotiation, it went really well, because I had no fear of losing the house! Most importantly, I did not even think about the negotiation and the possibility of losing the house at all until I heard back from the seller between each iteration of the negotiation. Before the surgery, I would, like most people, check my phone frequently to see whether I got a response, wonder what the seller will offer, wonder whether I will get the house, wonder whether I will lose the money I spent on house inspection, whether I will lose the money I spent on mortgage lender fees. Instead, I managed to simply forget the entire process until I got a response from them. Losing a house in contract means losing money! But I just did not care at all. All thanks to the j-pouch. It made me learn how not to sweat the small stuff, and even the serious stuff - like buying a house. It made me more robust.

I hope this entire treatment process will do the same for you. I hope an annoying nurse will no longer bother you more than a minute, and you will forget her immediately. More importantly, I hope an annoying nurse can no longer have the power to affect your potentially life-changing decisions.

@ElizaB posted:

Hi Sara,

For what it's worth, when I had my surgery in 1996 I went through the very same anxiety and difficult thought process that you are now experiencing. Due to having a young child at home, I ended up choosing my local moderately experienced j-pouch surgeon instead of a more well known distant big city surgeon.  After a difficult recovery and terrible first year, I deeply regretted my decision. At my husband's urging we flew out to the Mayo Clinic in Rochester (which at the time was the mecca of J-pouch creation) to try to find out what was wrong.  After 3 days of testing, poking and prodding to see what was causing me such misery, their conclusion (to my surprise) was that the surgery was expertly done and there was nothing structurally wrong with the pouch or the surgery. My problems were the result of cuffitis, pouchitis, some narrowed loops of bowel and a few other things. It's been a tough road at times but eventually things straightened out. The pouch is not an issue in my life anymore. I don't take any meds, have 2-3 BM's a day and sleep like a baby through the night.

I just wanted to share this with you and wish you well in your decision. All things being equal it's always best to go for the most experienced person/location but these decisions are complicated and only you can decide what's best for you. Trust your heart and your intuition...it seems like you're making progress in getting this figured out.

Good luck...and have a nice night.

Thank you so much for sharing. I'm so glad it worked out for the best for you. And wow, 2-3 times a day is my "UC normal" while in remission! That's awesome.

Sara, I recently had surgery out of state using a surgeon I had on prior surgeries who had moved from my home state, as I just felt , after much debate, that I needed the person with the most experience. To the best of my knowledge.

I am under the care of Cleveland Clinic for after care,  and have been in the past. Their GI department is fabulous and the really keep up with what I need. They remind me of blood work and check on how I’m doing, etc...Even with having had surgery out of their system.

I know what you mean about a rude nurse. Having had a few hospital stay in the last 6 months, I’ve had a hand full, that shouldn’t be in the nursing field. No compassion at all.But, the last year has been very difficult on everyone and we have maybe seen the worst in people ( and the best) come out! Some of these people made me so sad and even act not my best in my reactions to them.

But the great majority are the finest people we have, and wish I could name them individually!!

It’s quite hard to make decisions as important as these under so much stress. I am very happy I made the trip for my surgery and the great Dr Remzi also that I can depend on CCF for my care.
I really  send my deepest thoughts and hopes that you can feel secure in your decisions. I wish I were close to you to give you a big hug , I know we all need someone to talk to and it’s hard to burden those around us with those feelings constantly. I don’t have any answers for you only want to let you know others go through the same indecision as you.

God bless you , Janice

Thanks, Janice. Yeah, I'm not worried about that nurse anymore. Actually I already forgot about that, lol. I'm more concerned with driving far away and stuff like that. Thanks so much for the response!

@Scott F posted:

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.

I had a virtual consult with a University of Chicago surgeon this morning and he told me something similar to what you mentioned above, Scott. He told me one option would be for me to have the subtotal colectomy done by my local surgeon, then travel to him for the j-pouch creation, and then he said I could pretty safely have the reversal done locally too since that step is fast and easy.   I am leaning towards that option. That would make things MUCH easier for me if I only had to travel once.

Sara, that sounds like a perfect solution, allowing you some peace of mind for all your concerns. Since I had a 1-step, it would not have worked for me, but I believe that they are not doing 1-steps so much anymore. Too many potential complications overall.

Jan

Thanks, Jan! I had a consult with a Cleveland Clinic surgeon this afternoon (2 virtual consults in one day, phew!) who also told me that could be a good option for me. Yeah, I wish I could get a 1-step, but none of the 4 surgeons I spoke to recommended that for me. They all said 3 steps would probably be the safest for me since I've been on steroids so long.

Can anyone explain to me why they advised me to go to someone more experienced for the second of three surgeries? I don't understand why the pouch creation would be the most difficult of the three because my local surgeons both told me that stapling the pouch together is fast and easy. So I'm just trying to understand. Is it the rectum removal part that is important to have a very skilled surgeon for or what exactly is it because both the Chicago and Cleveland surgeons rushed me off the phone right at the 30 min. mark, and I didn't even have time to ask all my questions. They both sounded knowledgeable and competent, but I felt very rushed and it is not easy to contact them like with my local surgeon. It was a total nightmare dealing with their schedulers (I had to call 5 times over 3 wks to even get an appt at Chicago...no one was calling me back...similar incompetence and rudeness by Cleveland schedulers who originally told me virtual visits were not allowed and I almost drove 6 hrs there for a 10 min GI consult with the most incompetent GI I've ever spoken to but spoketo 5 people and finally learned I can do it virtually...) eta and staff (I had one administrator raise her voice at me even) at both places so I still don't want to go to either if it's not really necessary... Thanks in advance...

Hi Sara,

Let me share my story on how I chose my surgeon. I am not sure that I made the correct choice, but maybe something I share will be helpful in some way.

last October after my GI told me I needed a colectomy I did not even know a jpouch was something.  The CRS at university of Miami had a telephone meeting and told me about it, and I was lucky in that it could be done in 2 steps not 3.

then I spoke to the ‘man’ at Cleveland clinic Florida. On numbers alone he does the most in south Florida. I did not like him

i then spoke to 3rd surgeon who did my mother in law 16 years ago as a one step. He now does 2 a year and used to be partners with u of m surgeon. This concerned me.

I went back and forth until I had a final meeting with university surgeon and he told me he does 5 a year and no way to a one step.

i then chose surgeon number 3 with the thought of a one step. Everyone was ok with this choice.

my results:

-colectomy with ileostomy

-acute urinary retention requiring self catherization.

-Takedown

-fistula/perforation

-emergency surgery to reconnect

-Severe UTI requiring hospitalization

unhappy poucher at the moment, waiting for things to settle down.

keep in mind that all of my care team thought I made a good well thought out choice, and yet my results grade is incomplete.

keep searching and doing your due diligence until you are comfortable. Do not rush or settle. I was told that once a surgeon has the skill to construct a jpouch, they don’t lose it.

did I chose the right surgeon? I can’t tell you at this point.

Should I have held my nose and went with the ‘man’ ?

should I have went out of state to a center of excellence?

the decision to choose a surgeon let alone to have the surgery in the first place is such a complex thought process that it still boggles my mind 5 months later.

Eric

The colectomy and take down of ileostomy are pretty common, simple procedures, overall. These are well practiced by pretty much any general surgeon.

While the ileal j-pouch is generally easy theoretically, it is the step least practiced by most surgeons and most likely to run into complicated issues specific to the patient. This is where someone with more experience becomes most useful. Since none of us came from a factory with the same “specs,” there are small anatomic differences that can mean a lot. They just don’t know until they are in there. Mostly it has to do with the mesenteric reach of the vascular and nerve supply that can mean surgical tricks for lengthening the reach. Do it wrong and it can mean pouch failure.

Sometimes if there is enough time after colectomy and you have weaned off of steroids for long enough, they can skip the diverting ileostomy after the j-pouch creation. But only the well practiced and skilled surgeon will be best to determine if this is safe for you.

Hope this helps.

Jan

@New577 posted:

Hi Sara,

Let me share my story on how I chose my surgeon. I am not sure that I made the correct choice, but maybe something I share will be helpful in some way.

last October after my GI told me I needed a colectomy I did not even know a jpouch was something.  The CRS at university of Miami had a telephone meeting and told me about it, and I was lucky in that it could be done in 2 steps not 3.

then I spoke to the ‘man’ at Cleveland clinic Florida. On numbers alone he does the most in south Florida. I did not like him

i then spoke to 3rd surgeon who did my mother in law 16 years ago as a one step. He now does 2 a year and used to be partners with u of m surgeon. This concerned me.

I went back and forth until I had a final meeting with university surgeon and he told me he does 5 a year and no way to a one step.

i then chose surgeon number 3 with the thought of a one step. Everyone was ok with this choice.

my results:

-colectomy with ileostomy

-acute urinary retention requiring self catherization.

-Takedown

-fistula/perforation

-emergency surgery to reconnect

-Severe UTI requiring hospitalization

unhappy poucher at the moment, waiting for things to settle down.

keep in mind that all of my care team thought I made a good well thought out choice, and yet my results grade is incomplete.

keep searching and doing your due diligence until you are comfortable. Do not rush or settle. I was told that once a surgeon has the skill to construct a jpouch, they don’t lose it.

did I chose the right surgeon? I can’t tell you at this point.

Should I have held my nose and went with the ‘man’ ?

should I have went out of state to a center of excellence?

the decision to choose a surgeon let alone to have the surgery in the first place is such a complex thought process that it still boggles my mind 5 months later.

Eric

At least your okay now, you made it hon

Thank you, Jan and Eric. That's extremely helpful.

Eric: So sorry you went through so much. I've been following your posts and that all sounds terrifying. I hope things get better for you soon.

I’m going with the majority here. If possible, go to a medical center that does 1000’s a year. My local GI doctor was managing my UC medically. I had also been to a GI in NYC for consultation (Dr. Ellen Schrel - love her.) She had us meet with Dr. Bauer to discuss surgery options prior to my not having a choice because I became so sick.  

I was in our local hospital for the 5th or 6th time on IV steroids and sick as a dog from UC (very stubborn and didn’t want surgery - I was scared and had four young children ages 5, 3, 3, 3.) I got to the point where it wasn’t a choice. My local GI was pushing for a local surgeon who performed a few of these surgeries each year.  There was a GI Fellow who had come from NY prior to his time in our local hospital.  I saw him daily.  He came in one day and told me to get the hell out of our local hospital and get to Mt. Sinai and Dr. Bauer for the surgery.  I was transported by ambulance and operated on the next day. Best decision we made. THANKFULLY, I have a pouch that has never given me any problems, except minor butt burn due to my eating habits but easily solved with calmoseptine cream.

Do what makes you feel comfortable and confident that  you will have a good outcome.  You will hopefully live with your pouch forever without major issues.  

Be well.

Lisa, congrats on your wonderful outcome, I am beyond thrilled to hear stories such as yours. 🙂🙂😁

Sara, I understand your situation and I am so sorry to hear you are all alone. Whatever you ultimately decide to do, please to not underestimate the need for support after each step. This is major surgery and just learning to use an osteomy bag, if you require one is no small feat. As I discussed previously, surgical outcomes vary and you don’t know what if any complications might arise. I urge you to consider in home support after each surgery or maybe a rehab facility. We are here for you and I am sure any member will help out the best we can, but please figure some level of support into your equation. I am lucky as my wife has provided amazing care for me since the beginning of this, I would not be able to do this alone. I hope you find a way.

eric

Thank you.