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Hi

it looks like May need to have my Jpouch removed or at least change loop to end  just waiting for MRI results.

Jpouch/butt Has been a problem Since it was created

I’m still not connect so I still have the loop.   Options Being suggested are to go to an end ileostomy, leave pouch, Or go to end ileostomy and Barbie butt.  My question is has anyone had any of those two options done laparoscopically?  The reason is my first surgery to remove colon and have an end was done laparoscopically and I had no issues. Waited the year to have a Jpouch done, have an incision that was done low hip to hip, now they say they will cut straight down from my belly button “because that is the way he does it” and I understand that but if I didn’t have to have an incision like that I would rather not. I was in the hospital for 35 days when the Jpouch was created due to ileus   On and off. Bowels would start then stop.  It was major.    Surgeon said likely that will happen again and I just don’t want to do it that way if there is others who have had surgeons perform either one of these surgery’s laparoscopically?

 

thanks

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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 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.

 

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.

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. 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.

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