Twenty five years after getting my j pouch, my GI found high grade dysplasia in a polyp in my anal canal. It was successfully removed. Then, five years later, high grade dysplasia was again found in the same location. Over a period of many years, my GI found and removed a number of polyps from the pouch itself, but none had developed HGD by the time they were removed. I had a surgical consult at Mayo Clinic and they recommended an ileostomy, which I strongly did not want considering its quality of life issues. After doing online research, I opted for a BCIR which was successfully done by Dr. Ernest Rehnke three years ago in St. Petersburg, FL, and I now have a very good quality of life. Cleveland Clinic has an excellent reputation for doing the very similar k pouch procedure that also avoids the need for an external bag. You may want to ask CC if you would be a candidate for one of these alternatives to an ileostomy. Both of these procedures have a high rating for patient satisfaction and only a small percent are unsuccessful and need to be removed. Please feel free to PM if you have any questions or would just like to talk.

Bill

Thank you so much Bill. That kind of info is exactly what I was looking for. 

I agree with Bill - do a lot of research.  I have a pouch - and my Dad has had his for 32 years - they tried to get him to go back to ileostomy about 5 years ago due to HGD - he said - "try to get it" - they tried and tried again - they "didn't know if they got it all." Well - it's 5 years later - no cancer or HGD.  They do scopes more frequently -the docs at Duke wanted ileostomy - he is fine.  There is always risk - but for him this was the right decision - he is 79 today.  First colon cancer from FAP at age 23.  Don't give up! Sister and family go to Cleveland Clinic and love it. Good luck and get the very best docs in this field you can afford. 

Be sure to ask a lot of questions. I am not sure that HGD with a UC diagnosis is the same as with an FAP diagnosis. I have no doubts that Dr. Shen and the surgeons at the CC have the latest data at their disposal, so I would defer to their knowledge base. The good news is that they do continent ileostomy procedures there, so if you are a good candidate, you won't have to leave their system.

Here is a link to a good article on the topic:

http://onlinelibrary.wiley.com...1002/cncr.25886/full

Jan

I'm sure there HGD is different with UC and FAP - just wanting to give you hope and wanting you not to jump at whatever the first doctor tells you.  I truly hope the solution is easy rather than difficult and that if you do have to get an ileostomy, you can get one of the newer, improved models with no outside bag.  But - I hope you get lucky and don't have to do any of that!

Angie and Jan. Thank you for your responses. The Drs. at CC are great. I had an earlier reading of HGD and was sent  to CC where they have monitored me very closely(6 month pouch and endoscopy). Now that HGD has reared its ugly head again 2 1/2 years later they are very concerned. I have not asked about the alternative procedures(K pouch and BCIR) but will now enquire. I have regained my freedom over the last 5 years and if it comes to permanent ileo I'll have to deal with it. Thanks again for your stories and info!!!

So glad you are at CC - they are the best.  I am hoping for a positive outcome -as in a least invasive, easiest to deal with outcome for you...and if that cannot happen, I am hoping for the alternative options now available for you.  So sorry you are going through all this - your attitude is so positive and that is a lot of the battle, as you know.  Take care and know people out here care.