hi sandy,

 

i am with a jpouch for 14 years (october 2001) one step. Fellow FAP'er.

 

i have adenomatous through out the jpouch itself (neo rectum). i get scoped yearly for surviellence and biopsied of anything suspicious.

 

i would not jump to any conclusion that an ileostomy is in your future. I have had a gastroenterologist threaten me that i was headed down that way. I no longer see him, because i deemed his approach inappropriate. And he has 6 cases of fap patients, where as the new hospital i go to, deal with fap every day/many, many cases.

 

you should be monitored closely, but having adenomaous in the j-pouch does not mean you will lose your pouch. the nature of our illness is "adenomatous" as part of diagnosis.

 

i recommend yearly surviellence with you gastro dr to stay on top of the newer and older growths.

 

I also have a stapled j-pouch where i have the rectal cuff attached. Its usually done this way based on the surgeon and your individual case. some pouchers have continannce issues with muscosectomy/hand sewn pouches, others do not. and also your surgeons training depends on how your pouch would be constructed.

 

back in 2001 my surgery was laproscopically hand assist, and it was 10 1/2 hours. today it is possible to get a one step completed in a couple hours, certainly 10 hours.

 

i believe if you stay on top of your situation you can keep your pouch with proper surviellance included.

 

I hope ive made you feel better/not alone somewhat.

 

regards,

 

len

 

Thank you Len for your input. Definitely does reassure me. I have been fortunate to not have too many issues with my pouch other than the fast rate of adenoma growth. I just switched GI docs, to one that is more experienced with FAP as well.  My body seems to create adenomas quickly throughout my small intestine as well. I always seem to get a wait and see approach, and for someone that likes to plan and prepare for the future, that makes it very hard! I rely on the experiences of this group to help give me an idea of what to expect with this disease.  I'm hopefully looking forward to many more years with my pouch and the avoidance of any major surgeries!!

hi sandy,

 

glad you feel better after hearing from me.

 

i didnt grow polyps, adenomas for the first several years with the pouch. after about year 5ish my doc started to tell me after pouchoscopies that i have polyps here and there within the pouch before they pretty much invaded.

 

with fap, its hard to predict the future but not productive to sit and dwell "what if" this or what if that comes along. I rest in the fact we had our surgeries to prevent us from having cancer, mine was done electively because the onset of cancer development in fap is that of by age 39. I was 23 when i had my colon removed/pouch made etc.  There is alot of "cure" in that alone having the surgery when the dr's say its time, and youve been through a second or third opinion (i have been through 3 opinions before agreeing to the jpouch, that colon needed to come out etc).

 

a good gastro dr will just continue to monitor you and take out the suspicious, larger of the polyps and keep you on your toes with your pouch.

 

my duodenom is clear around the pancreas/common bile ducts etc, no polyps at the ampula of vator etc. i just have hyper plastic gastric polyps and/or fundic gland polyps through out the upper g.i tract and the lower g.i tract in the pouch itself are all adenomatous. I am here to offically say that you can keep your pouch, im 14 years going on 15 and still pouching along.

 

we have a few faper's here, with more experience than I, and who have had another surgical procedure following colon removal/jpouch that are doing well, they(he) may weigh in as time goes on.

 

but you will be fine. just gotta try to stay positive, a good physician who deals with fap cases also helps lots.

 

-len

Sandy, it is possible to perform "pouch advancement" surgery to eliminate the rectal cuff. I honestly don't know if it's appropriate for you. The surgery is delicate and hand-sewn, best done by a very experienced surgeon.

I went 25 years with a j pouch and had no polyps in the rectal cuff, although a number were removed from the pouch itself and duodenum.  At the time, I was on an annual scoping schedule.  Then my GI biopsied a suspicious spot in the rectal cuff that turned out to be malignant.  A CR surgeon removed it and fortunately took sufficient margin to eliminate risk of spreading.  However, I believe my sphincter was compromised by that surgery.  Five years later high grade dysplasia was found by the sphincter and my GI said that the sphincter was very weak.  A second opinion at Mayo Clinic confirmed the diagnosis and an ileostomy was the only option they offered.  I was very strongly against having the bag for quality of life issues it has and did further research on options that would avoid the bag.  Fortunately, I found a surgeon who gave me a BCIR and I am very pleased with the results.  Another similar procedure is the k pouch.

 

My thoughts are for you to continue frequent scoping, including several biopsies of rectal cuff tissue to determine if any dysplasia is present.  With FAP, the short section of rectal cuff can contain colon tissue not removed by the original surgery, and this can become cancerous over time.   Frequent monitoring should enable you to safely keep your j pouch. 

Thank you all for your responses.

I am awaiting the biopsy results to see if there was any dysplasia or malignancy of the polyps. I am assuming it will not result in any surgeries right away no matter the result. I have a very severe case of FAP and have been told I will undoubtedly end up with an ileostomy eventually. At this point we are trying to prolong it as long as possible.

I have lots of polyps in my stomach and small intestine as well and have had adenomas removed from my ampulla already. My small intestine has no normal tissue present anymore. It seems everywhere they biopsy, even where no polyp is present , still comes back adenomatous. I have been told the Whipple procedure should also be expected within the next 10 years.

I have a three year old daughter that is already being scoped every 4 months to remove adenomas from her small intestine and has been routinely for the last year and a half. It just seems that our gene mutation is very severe. With all that said we do not dwell in what this disease has in store for us, but rather have faith that no matter what happens it is all in God's hands.