Is there any hope for someone like me to not require a permanent ostomy?

So sorry you're having to deal with this. I don't have FAP - but I did have high grade dysplasia after 40 yrs of UC. I  had a colectomy with mucosectomy - all the mucosa removed -because of where the dysplasia was located.

You've got time to gather a few opinions from highly experienced surgeons  to  help you chose what's right for you.  When you begin to narrow down which medical center you'll use, consider having the pathology slides themselves sent to be read by the pathologists there.  I had my path slides sent to Columbia for a second read when I set up my consultation with Dr. Kiran. Interpretations do vary, and most pathologists don't have extensive experience reading j-pouch biopsies.  

After you weigh the options, please post back and let us know what you decide to do.  

Amb,

Thanks for responding.

Maybe I could be a candidate for a mucosectomy even that the current jpouch with sigmoid colon intact and my own rectum have low grade dysplasia polyps

I obsess alot and require reassurance. I am hoping I have some time and can be survillienced and the dysplasia polyps removed despite my risk of cancer being greatly increased

Mentally im not ready at all for a surgery. The big would not suite my lifestyle what so ever.

I fear I'd wake up with the bag and no ileal pouch because something could happen in surgery

Temporary 3 months or so I could get my head around but I want control of when i empty either by way if getting a pouch or another shot at a jpouch

I read that chomoendoscopy gives good picture shots during scopes

Gi doc of 20 yrs didn't provide pictures but any dr be it at fox chase cancer or NY Columbia or John Hopkins would prob want to scope me and see themselves.

I will post back when I have answers/a clearer picture

Your response gives me hope I could get another shot at a pelvic pouch given I have low grade dysplasia and yours was high grade and you still came away with a pouch

Thanks again

Len

Hey Len,

I have taken a few days to respond because I have read and reread your post several times.

I understand your concerns because although I don’t have FAP, I had high grade dysplasia lesions in my rectum. I was never given a option for hand sew/mucosectomy.

Therefore I have a rectal cuff and residual colitis in that area.  I take canasa daily to prevent cuffitis/inflammation/dysplasia.

having said all that, I have informed my GI he must treat any residual colitis aggressively since I absolutely do not want to submit to another surgery/ileostomy.

i have played out in my mind what I would do if I ever faced the above.

Could be one of the following:

pouch advancement

redo

kpouch

i would talk to surgeons who perform redo’s.  Like a dr remzi.  Surgery is a guarantee of nothing and who knows what you will wake up to, so you have to be in really good hands.

but like you I will do almost anything to avoid a permanent ileostomy.

had a appt after 21 years since my jpouch was installed.  Saw dr rolandell who did my colectomy and jpouch in October 2001

he would try to advance the pouch in a pouch advancement operation similar to a redo.

my colonoscopy reports from my gastroenteroligist of 21 years really are poorly written . I don’t have an ileorectal anastomosis the rectal cuff of 2-3 cm remains . There is no sigmoid or left or right side of colon just the reports  state so

he Performed an anoscopy/flex dig in office to confirm that my Gus reports are mis communicated/dictated

no one with a jpouch and just 2 3 cm of cuff needs miralax prep for scopes which my gastroenteroligist calls colonoscopies

surgeON rolandelli said it’s not good for my compromised kidneys to use miralax either

i will have a ouch advancement with mucosectomy but first he would like a mri without contrast to make sure none of the jpouch anenomas polyps are malignant but gastro can’t specify what is what and it’s not clear if there is even low grade dysplasia

the screen for anoscopy today shows a large tubular andenoma and others which were friable my surgeon described and bleeding

i live in pa so the anoscopy isn’t covered fully I just have Medicare 80 percent since nj dr don’t take pa Medicaid . Anoscopy costs 4k so I’ll find out soon what it will cost after Medicare pays there part that I’ll have to pay

the trip was well worth it to see dr rolandelli 1 hr and 45 minutes I’m glad I won’t need to go to Cleveland for a redo/ with advancement

i still have questions for dr rolandelli but I prob won’t persue a surgical oncologist at. Fox chase cancer center here in philly because rolandelli said it doesn’t look good in the pouch it has to go

looks like april sometime I’ll have surgery in the beginning

if I won’t no longer be bleeding intermittently from my rectum and loosing ferritin will I no longer require iron infusions?

I have low grade dysplasia but the mei will rule out true malignancy my gastro said it was low grade dysplasia everywhere and pathology didn’t show cancer

rolandelli wrote in my after visit summery his nurse wrote in the patient portal patient will get a acr anterior resection removing anus rectum and Anus and diverting ileostomu I  don’t want an appliance but I told his nurse I’ll take the kpouch should the j advance not work I just. Don’t want a permanent unconinent appliance

so the story is I need a redo advance and all these years of treating me 20 yrs gi doc has been. Throwing words and n my reports that I have an ira ileo rectal anastomosis I don’t have any colon just the texts 2 3 cm cuff.

so he rest of this week I’ll get to scheduling my mri without contrast for rolandelli and then we move forward with a surger date and the course of action to take

Hello again,

theres quite a-lot in your above post, but here is my initial takeaway.  (BTW, I really relate to your post as I am constantly thinking “what-if”)

I think a second opinion is in order here. You seem to indicate that your jpouch is coming out and the rest of your backside. You also want a k-pouch in lieu of permanent oestomy.
does Dr R perform k-pouch surgery?

when you sign that surgical consent and it’s not listed, you might be surprised when you wake up.

this is huge, so please keep us up to date, and I wish you the best.

Hi new,

the kock pouch was discussed as an option if he sees that he can’t do the pouch redo/mucosectomy with advancement

My mri with and without contrast is Friday this morning week the 17th

I’m am not ready for a bag for 2 months and hope it goes fast. He said after advancing the pouch and removing the 2 to 3 cm rectal cuff tje ostomy needs to be there because of the pouch being manipulated alot

will I lose ileum during the redo/mucosectomy since he’s removing the current jpouch that’s stapled to the anus and creating a new jpouch?

It sucks I have to go through this and march 29th Wednesday I will have a zoom with the fox chase dr .

I don’t want a new permanent bag if I need to I would get the kpouch since it is continent

the fox chase cancer center here in philly would be by second opinion

I hope the Mri doesn’t  find anything cancer wise In my jpouch

I always thought pouch advanced preserved the pouch and cuts out the cuff, hand sews and mucosectomy.

if the pouch needs to redone you will lose another 12-14 inches of ileum, which has its own implications.

again, although it sounds like you are in good hands, is your surgeon well experienced in advancement and/or redo surgeries?

I think you need to literally take this one day at a time, have the MRI this Friday, then based on results evaluate your options with the surgeons.

you are about to consider/embark on a very intense process, so second opinions and maybe consulting with the New York City gang should be considered.

Like New577 I understand pouch advancement to reuse the current pouch. This isn't normally called a "redo" - that the name for building a brand new pouch. In pouch advancement the attachment of the existing pouch is re-made directly to the anal canal, instead of the rectal cuff.