I had my surgery to remove my colon laproscopictally. 

(is that a word?) lol. 

But in the following weeks I had two surgeries and was cut open to untwist my bowel and one exploratory surgery for bleeding. 

So when it came time two years later to remove my pouch (never worked right) I was cut open and given an end ileo. 

But in saying that my last surgery was the easiest. I healed quickly and was back to work in six weeks. 

I don't know if that helps any. 

I think it may depend how long you have had your pouch and how much adhehion has occurred over time. 

Good luck. 

R. 

It helps a lot thank u.  I have been trying to read up much as i can on the Barbie butt as it sounds major and like pouches some good , some not so good.  I am Hopeful that they only have to take pouch and make an end and not a Barbie butt but right now I don’t know 
Yes these pouches.... I guess it is great if it works out but wow when is doesn’t, for me I wish I hadn’t done it. My first surgery to remove colon and have an end instead of this loop ...didn’t know how good I had it.   Thank u again for reply 

I don't have a Ken Butt.... I'm a male. 

My surgeon left everything in place there and sewed it from the inside. I have about an inch and a half anal canal. Kinda glad she left it because I read it's a painful ending... Pun intended. 

R. 

  😊. Good to know ...   next week mtg with surgeon to review mri results and I guess pick a direction 

Hi Leann,

I am sorry that you are having such trouble.  I wanted to ask, what is wrong with the JPouch that is has never been activated?

Draining mucus/water constantly.  No warning...  surgeon Then  felt if connected it would be a disaster.  So never done. The draining was almost immediate after the second surgery 

I am so sorry.  Have you gotten a second opinion on the pouch surviving?  Dr. Feza Remzi at NYU does a lot of pouch redos.  If it’s a really sick pouch it’s a big decision to leave it in or take it out.  In the end, you will figure it out and get better, but I hope it is any easier road.  Best - Doug Karson - call me if you need anything 917 519 7292.

Thank u!  For number and surgeon.  My surgeon hasn’t done any testing for a year and I feel like now that at least I finally have something (the mri) that I can send to another surgeon and they could review as travel is so difficult.   I think you are right - getting a second opinion is a smart choice.  Help make an informed choice.

Before you do anything id get a second opinion for sure. Theres a huge difference between doctors.

Hi Leann,

Please do get a second opinion or even a third.  The next step is a big step.  I don’t know why the surgeon waited a full year to test the problematic pouch with an MRI.  I really feel for you.  You have went through such a tough time.  You owe it to yourself to get to a major IBD surgical site to render an opinion.  Mt Sinai or NYU in Manhattan, Cleveland Clinic in Cleveland or others.

Sorry for your sufffering! After all of that trouble I would get it removed ASAP and live Happily Ever After with an Ostomy. Are there any updates??? I hear  laparoscopically has less side effects than getting cutt open but I would follow the surgeons advice. 

Any updates???

Tuesday this upcoming week I will at least know the results of the MRI and then I can hopefully look into some opinions. Right now and for the last long while I feel like I haven’t been able to do anything as I have not had any supporting information and no real assistance to make an informed decision.  But I guess I have finally made enough fuss the mri was ordered and I got it done right away   

@Leann posted:

Tuesday this upcoming week I will at least know the results of the MRI and then I can hopefully look into some opinions. Right now and for the last long while I feel like I haven’t been able to do anything as I have not had any supporting information and no real assistance to make an informed decision.  But I guess I have finally made enough fuss the mri was ordered and I got it done right away   

That is great!!! Please let me know how it goes! I

Hi Leann,

What did the MRI show?  Hopefully it gave you some information.

Not a lot more  information. I am getting a copy of the report... I walked out of the office without it.   I think I was disappointed and processing it all. But I will post when I have the correct wording. However he is referring me to another surgeon for another opinion. So that is great.

That sounds good.  Where do you live?  If you don’t mind me asking - I would have a few names for you in the New York/Boston area.

Leann's profile says she lives in Canada, so coming to the USA right now is not an option for her. Unless she flies - and based on my recent experience flying, you don't want to do it unless it's absolutely necessary. I don't know if Canada's government funded healthcare would pay for treatment in the USA anyway.

Thank you for clarifying.  Leann, I am sorry that the MRI may have not yet yielded any useful information, but I hope that it helps you find some potential solutions.  Best of luck.  Doug 

Hi. I do live in Canada and although we do have a healthcare system however I have been “told” that if I am unable to get the care I need I can apply to the healthcare system to assist with treatment out of country. Now I don’t know if that is just a story or fact.   So an example of something that may qualify for this instance is there is no surgeon available “according to my surgeon” that does K pouches creation/surgery so I can “apply” for assistance.  I’m not sure if this is true but I plan to look into it. 

I had a nurse tell me that a patience from Canada went to Cleveland and was quoted a number $ for a surgery that took into consideration the difference in the CDN $ vs USD so a bit of a difference in cost was applied as there was no insurance.  

I have no idea what a surgery costs in the states but I think if I could even get a consultant from a place like Cleveland and a clear direction I would do it.  It Is about the quality of life and worth it as this has been so difficult.

I hope to pick up copy of MRI and will post some details. 

Thanks so much to everyone - this is the best site and group of people that take time to share their experiences.  It is hard for other friends and family to understand how difficult this can be at times.

Leanne, you are taking the right approach by looking into a second opinion.  The choice you make will have a significant affect on your quality of life.  It would be great if you cold get your J pouch to function well, so a consult with a surgeon who is well-experienced in dealing with J pouch problems is in order.  According to your earlier post, an end ileostomy with several options regarding the pouch were the only options presented to you.  Two other options that do not require having an external bag are the K pouch and the BCIR.  It is my understanding that there are 2 surgeons in Canada who do the K pouch.

I had to have my 30 year J pouch removed for medical reasons and opted to get a BCIR because I strongly did not want an end ileostomy.  I have had excellent results with it since my surgery 7 years ago.  Since my surgery, I have become very active in the continent ileostomy community and am a columnist in UOAA’s magazine. “The Phoenix”. One of my articles is entitled, “Researching My Options” which can be viewed at: https://j7d.873.myftpupload.co...chingMyOptions-1.pdf. .  This article is also available on the website of the Quality Life Association (www.qla-ostomy.org).  This website contains additional information about the BCIR procedure as well as a list of surgeons who perform continent ileostomies, including 2 in Canada.  I would be pleased to provide more information if you are interested.  Just send me a PM.  Bill

@Leann posted:

Not a lot more  information. I am getting a copy of the report... I walked out of the office without it.   I think I was disappointed and processing it all. But I will post when I have the correct wording. However he is referring me to another surgeon for another opinion. So that is great.

I am sorry to hear that! I understand your frustration, I hope everything ends well in the end. I hope he refers you to the right surgeon. Do you have any idea what you might want to choose? Is a permanent ileostomy sounding more appealing??? 

@BillV posted:

Leanne, you are taking the right approach by looking into a second opinion.  The choice you make will have a significant affect on your quality of life.  It would be great if you cold get your J pouch to function well, so a consult with a surgeon who is well-experienced in dealing with J pouch problems is in order.  According to your earlier post, an end ileostomy with several options regarding the pouch were the only options presented to you.  Two other options that do not require having an external bag are the K pouch and the BCIR.  It is my understanding that there are 2 surgeons in Canada who do the K pouch.

I had to have my 30 year J pouch removed for medical reasons and opted to get a BCIR because I strongly did not want an end ileostomy.  I have had excellent results with it since my surgery 7 years ago.  Since my surgery, I have become very active in the continent ileostomy community and am a columnist in UOAA’s magazine. “The Phoenix”. One of my articles is entitled, “Researching My Options” which can be viewed at: https://j7d.873.myftpupload.co...chingMyOptions-1.pdf. .  This article is also available on the website of the Quality Life Association (www.qla-ostomy.org).  This website contains additional information about the BCIR procedure as well as a list of surgeons who perform continent ileostomies, including 2 in Canada.  I would be pleased to provide more information if you are interested.  Just send me a PM.  Bill

I see you are very resilient!!! I would have probably gotten the ileostomy but I totally understand your choice! I am glad the K-pouch is working

What made your J-pouch fail after 30 years??? I never heard of that before after that long time

Lauren, I had recurrent high grade dysplasia and a malignant polyp next to the anal sphincter.  Surgery to remove the polyp eliminated the cancer, but significantly weakened the sphincter.

@BillV posted:

Lauren, I had recurrent high grade dysplasia and a malignant polyp next to the anal sphincter.  Surgery to remove the polyp eliminated the cancer, but significantly weakened the sphincter.

Oh my goodness! I am sorry to hear that! Thanks for sharing

Are you more happier with the K-pouch over the ileostomy/J-pouch???

I would definitely get a second opinion before making a decision!!!! I have a lot of confidence in the Mayo Clinic. One in Rochester MN is where I had my first surgery and they saved my life. There were others there that were getting repaired from bad surgery other places. I have also been to Jacksonville, Mayo Clinic. Though I have not been to the others mentioned I have heard good things about them.  Thoughts and prayers for you as you make this decision.

Lauren, I would have preferred to keep my J pouch if the high risk of cancer and leakage problems from a weak anal sphincter had not been present.  Getting the BCIR eliminated the risk of cancer and the leakage problems and significantly improved my quality of life.  I would never have been happy with and end ileostomy.

@BillV posted:

Lauren, I would have preferred to keep my J pouch if the high risk of cancer and leakage problems from a weak anal sphincter had not been present.  Getting the BCIR eliminated the risk of cancer and the leakage problems and significantly improved my quality of life.  I would never have been happy with and end ileostomy.

I totally understand! I am just glad you are doing better overall. It must be hard to have to keep the catheter clean all of the time, I am sure you do an amazing job at it though!