New Member, upcoming surgery.

Hello -

I am new to this site and thank you for accepting me.  I was first diagnosed with FAP in 1989 and have been watched with scopes since then.  I am now getting ready to hit 40 yrs old and still have not had any surgeries, but within the last 6-9 months I have started to experience some issues and found new doctors that actually know about this disease in depth (thank goodness).  I will be having my colon removed this year and am no stranger to these types of operations. My mother has had an ileostomy for 30+ years and I have an uncle (not blood related) that has had the J- pouch surgery for 15 years then changed to ileostomy within the last 5 years.  My upcoming appointment with my surgeon is scheduled for 4/26/17 and that is when he will let me know which type of surgery is best for me.  I am hoping for the J-Pouch, and this is where my question comes in.  I have a lot of polyps in my rectum and according to my new gastro he said that they are very concerning due to the number and also they are within  1-2 cm from anal verge and vary from 3 to 20mm in size. So just curious if anyone knows or experienced themselves this being a reason why a J-Pouch surgery would not work for cases of this nature.    Any advice/experience is greatly appreciated. 

Original Post

Hi Lisa,

Welcome to this forum.  I have FAP and had J pouch surgery in 1981.  During the following 25 years, my GI found and removed occasional polyps from my pouch. In 2006, he found a newly malignant polyp in my anal cuff that was successfully removed. Six years later, high grade dysplasia was found in the same area and pouch removal was recommended.  I opted to get a BCIR rather than a conventional ileostomy that I strongly did not want for its quality of life issues.

The key issue is whether J pouch surgery would significantly affect the strength and function of your anal sphincter.  You can always get a second surgical opinion if your surgeon does not recommend a procedure that you are comfortable about.  There are two options to the ileostomy that do not require having an outside bag:  the K pouch and the BCIR.  My BCIR surgery was done by Dr. Ernest Rehnke in St. Petersburg and I have had excellent results and a good quality of life.  Please feel free to send me a PM with any questions that you have.

Bill

Your physical size determines how much rectal cuff the surgeon needs to leave in.  Im a thin guy so apparently he could leave minimal cuff.  Surgeons like to remove as much cuff possible of the colon comes out, because it's part of the colon and can be subject to further disease!

It sounds like that would be a call for your surgeon for your specific circumstances possibly even while your in the table,. But if your real thin my understanding is they can basically get rid of all the rectal cuff.

 

Thanks Bill and Bobish for your replies.  I have had one surgical consult with Dr. Rehnke myself and am impressed with the BCIR procedure and he said I would more than likely be a candidate for any of them, however once they get inside things could change due to internal structures and or issues.  Luckily he is just about 30 min from where I live here in Florida. I am meeting with Dr. Julian Sanchez who is at Moffitt Cancer center on the 26th of this month for his medical opinion on which surgery he thinks is best for me.   I have not decided yet which surgeon to go with as I do like them both.    I will be going to Moffitt every 6 months for endoscopes with Dr. Pena there, as I have numerous polyps in my stomach and duodenum that he wants to keep a close eye on. 

As for my size I am short and a bit overweight (chunky), I am not considered to be thin framed (although it would be nice lol). 

 

Thank you both for the information and advice, I greatly appreciate it! 

 

Hi there, Lisa! Hope this finds you well.

I was diagnosed in 2014, had my surgery in 2015. My polyps were similar to yours; my entire colon was completely covered with small to large polyps, no dysplasia. I met with the surgeon who did my mom's pouchitis surgery in 2001, then a second surgeon who works closely with my GI doctor. Both had different plans: one wanted to do laparoscopic, which was fairly new at the time, and should take about three hours; the other wanted to do laparoscopic and then use a robot of sorts to shape my j-pouch, which was extremely new at the time, and would take up to five or six hours. This was also a two-step surgery, and I knew I wanted a one-step. 

I went with the first doctor, mostly because the longer you're out, the more time there is for something to go wrong--but also because we were already familiar with him. My surgery went mostly well. My bladder had a minor puncture, but it healed itself in a manner of days. It was a one-step, no external pouch required, and I've been doing just fine ever since!

Something to keep in mind, though, is that I was in good health when I went in. If you've been having FAP symptoms, it won't be so easy. Ultimately, my best advice is to seek a second opinion and decide what plan seems best for you. Ask the surgeons about different surgeries and what they're comfortable doing. Ask them how many FAP patients they've seen. 

Hope this helps! 

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