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12 replies

Polyps in J-Pouch / GI Doc recommends removal of Pouch...

S SarahKate319Member
Hello, all. My name is Sarah and I have had my J-Pouch for 20 years now due to FAP. I have had several obstructions in my time, 2 severe obstructions requiring major surgery. However, despite our issues, I love my pouch. I love my life with my pouch.

Recently, I relocated to St. Louis and have seen a GI doc specializing in FAP. I was rather awe struck to find a doc specializing in this rare disease. However, now I am reconsidering my feelings due to his recommendations.

We did a flex sig and upper GI this month to find I have a significant load of polyps both in my pouch and my duodenum. Our course of action, per the GI, was to remove the polyps from the pouch and then monitor every 3-6 months for growth. We would then move on to remove the polyps from the duodenum in a few weeks with similar monitoring.

However, after the flex sig to remove the pouch polyps, the GI is recommending that the pouch should be removed and I should have a perm colostomy. He has said that there are just too many polyps and he feels this has a very high risk. Please keep in mind, though, that biopsies have come back with no issues or dysplasia of any type.

I have recently seen the surgeon who gave me my J-Pouch for his opinion and thoughts... keeping in mind that his expertise is not in FAP but in Pouches. He says he does not necessarily see "polyposis" in my pouch and recommends I visit the Cleveland Clinic or Mayo Clinic for another opinion.

I am working with the Cleveland Clinic to schedule an appt for within the next 30 days.

However, my question to the community is this...
Because I have FAP, is my pouch compromised due to polyp growth?
Is it out of line for me to question the recommendation of removal of pouch? I certainly DON'T want to have a bad for the rest of my life (I am 41 years old and very active).
I wonder if I need to find another GI doc.

Any suggestions, thoughts, insight would be greatly appreciated.

Thank you!
Sarah
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BillVBillVMember
Sarah,
I also have FAP and had a J pouch for 30 years. During this time, my GI did regular upper and lower scoping (did both during the same visit) and removed any polyps he found in my pouch, up to 25 in my stomach and all polyps in the duodenum. Seven years ago, a malignant polyp in my anal canal was removed, with no spread and sufficient margin, and I declined to have an ileostomy at that time. In December, 2013, my GI found high grade dysplasia in the same area. I got a second opinion at Mayo Clinic that recommended removal of the pouch. They would only give me the bag, which I strongly disfavored (quality of life issues). To make a long story short, I researched the two continent ileostomy options, the K pouch and BCIR, and had the BCIR by Dr. Ernest Rehnke in St. Petersburg, FL. The surgery went very well, I had excellent hospital care, and my quality of life now is very good. If you are interested, Dr. Rehnke and two nurses will hosting a free informational seminar in Chicago this Saturday, August 9. More information on this seminar can be found on their website: www.bcir.com. There will be some BCIR “alumni” there as well; I will be attending.

I would think that the frequency of polyp formation in your pouch and number present are factors in determining if it should be removed. How often have you been scoped (upper and lower)? I was on a 6 month schedule. It was not the presence of polyps in the pouch itself that prompted its removal. In my opinion, I would fight to keep the pouch, but keep in mind the risks and definitely have frequent scopings. I am also very active and feel the decision I made about BCIR surgery was best for me.

You are wise to have an evaluation at Cleveland Clinic since their doctors are among the best in dealing with pouch problems. Feel free to send me a PM if you wish, and best of luck to you.
Bill
vanessavyvanessavyMember
Pfft. Monitor them. I have constant big suckers in my duodenum. I can never have a whipple so they have no choice BUT to monitor me. I just got bumped to every 3 years instead of a year for scopes and I am a high risker. I would have many opinions before removing a pouch. It can calm down over time, mine just stay the same.

I have a BCIR. No polyps form in it yet.
BillVBillVMember
Vanessa,
I also have FAP and am on an annual scoping schedule. In my opinion, your doctor is playing with fire to have you on a 3 year scoping schedule, especially since you say polyps in your duodenum are “large suckers”. You want them removed and biopsied well before they become malignant. I will also want to make sure my GI scopes my BCIR, for the same reason.
Bill
vanessavyvanessavyMember
This past year I am good and only small ones have formed. So I am ok with 3 years. Most people I know go 5 years. I have had most of my stomach removed so I can't have a whipple. I wouldn't make it and would be on TPN forever.

Weird thing is I had one grow in my stomach that on this scope wasn't present. My duodenum has been ablated so it is better now. Again, I get to make the call as well and I am comfortable with 3 years. I have stuff to do and a busy person. This disease doesn't get to control me.
C ChuckusMember
Vanessa,

Your entitled to do what you want, but, as far as I'm concerned going 3 years between scopes is very, very dangerous. Sure, I'm busy to and I have stuff to do and no, I don't let this disease control me either, but, that's really playing with a very dangerous fire.

I choose to continue to be able to have stuff to do and be busy, instead of getting duodenal cancer or worse if I waited 3 years for scopes.

Just FYI, I had "minimal" polyps in my duodenum at one scope, sounds quite similar to you, then the next scope a year later they were out of control and I had a very highly modified duodenectomy done less than 6 months after that because they were so bad.

I wish you all the luck and hope things work out for you. I would strongly urge you to re-think your mentality, but, it's your choice.
skn69skn69Member
I am both pleased and shocked to read this thread...when I complained to my French surgeon years back that I thought that I had a bleeding polyp in my k pouch valve I was told that 'there is no such thing as a polyp in a pouch'.
Whatever it was they burned it off and I have never had another one but geeze...some people really do not know what they are talking about.
Sharon
W Walt1Member
Good evening to all,
My name is Walt and I'm new here in this forum. I'm 32 y/o from Alabama. I was diagnosed with FAP a little over 10 years ago. Back then, I saw a gastroenterologist due to my family history of colon cancer. I was referred to a surgeon that specializes in colon surgery. My colon was totally removed with J-pouch construction, this was back in 2004. I've had many complications over the past couple of years, from obstructions, to abscesses, to a desmoid tumor. Just a few days ago, I had to go through an upper and lower endoscopy. My doctor found some polyps in my J-pouch and some in my duodenum. My gastroenterologist and surgeon discussed my results, and was informed yesterday that they will need to refer me to the Mayo Clinic. Apparently, they specialize in such rare conditions. I am afraid, scared beyond belief. I can't even seem to be able to sleep because of this. Even though my current doctors are excellent, and have saved my life on several occasions,they thought it was best for me to see someone at the Mayo Clinic. The polyps my doctor found seem to be non-cancerous, but said that I should not have as many as he found.

I thought that maybe talking to others with similar condition(s) would help me release my worries and stress. Like I said earlier, I've never been this scared in my life, even when I was diagnosed with FAP.
ksrksrMember
I too have FAP and got my j-pouch in 5/2002. Before my j-pouch surgery, I only grew the bad polyps in my large intestine. Since I got the j-pouch, I started growing the polyps in my stomach, duodenum and rectal stump. My colorectal surgeon advised me when I got my j-pouch never to go over a year without having the EGD and pouch scope. The one time I went a 1 1/2 years for the EGD and pouch scope, the polyps that had grown already had cell changes to them.

You are your own advocate. I would never go over a year without having the EGD and pouch scope. The GI doctor that I was going to retired and had to find a new GI doctor. The GI doctor I went to, told me there was no need for me to have the EGD and pouch scope but every 3-4 years. I told him what my colorectal surgeon said and he disagreed with him. I found another GI doctor that told me the same thing that my colorectal surgeon said. Do not go over a year without having the EGD and pouch scope.
R RittenhousecmMember

Good Evening,

I am new to this forum and so glad that I have found it.I am 64.  Walt, I am from Alabama also and have FAP. They found hundreds of polyps in my colon after only five years of being completely clean. They removed my colon and rectum. I now have a J-Pouch for almost 2 years.I also have Autoimmune disease (lupus plus others, neuropathy and had a mass of fibromas removed from my brain) I have had no major problems with my pouch but the last 2 days I have had stomach pains and pain in my right side ( I don't have an appendix). My surgeon sees me once a year.My appointment is not until June and she is 5 hours away. Who should I call about this. Wondering if I have a blockage or pouchisis. Would my family physician be able to help me. The gastro that found the polyps only comes to my town once a week. Thank you for starting this forum. I feel like I have found some friends and people that understand what I have been through.

 

Sincerely
Rittenhousecm

 

 

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