FAP -J Pouch pros cons and experiences

Im about to get my J pouch surgery for my FAP and my surgeon is not good at answering questions, so I thought I’d ask people who actually been through it so I can prepare myself.. please help!




Recovery time

do you regret it?

Original Post

I hope that your surgeon is much better at performing J pouch operations than he is at answering your questions. This surgery is complex and it is best to have a surgeon who has done many of them.  I suggest that you ask if you could talk with some of his patients who had this surgery.  Most people have good results with a J pouch, but with FAP, it is essential to have the pouch and upper GI tract scoped frequently (annually for me) since polyps can re-occur.  I had my J pouch for 30 years before recurrent high grade dysplasia and a malignant polyp in the anal canal made pouch removal necessary.  I opted to get a BCIR (continent internal pouch) since I very strongly did not want to get an ileostomy with its associated issues.  With hindsight, I would get a J pouch again as an initial procedure.



My first colonoscopy at age 33 revealed a very limited number of polyps, which my GI removed.  Two years later, I had a repeat colonoscopy following a significant discharge of blood. There were now hundreds of polyps present, and any one of them could become malignant.  FAP can only be cured by having your colon removed.  I would definitely follow your surgeon’s recommendation regarding the urgency in having surgery.  If you have any doubts, you could get a second opinion.

I am too 22 though I dont have FAP but I can say surgery is worth it. If you can't get the disease in control with meds just go for the surgery . I've been just more than a month out with takedown and there's nothing I cant do or eat now . Its all the pain is history . Just make sure your surgeon is experienced. Sometimes good surgeons are busy so they dont give patients enough time. 

I was 29 when I was diagnosed with rectal cancer. Come to find out that I have a biallele MUTYH mutation which is a polyposis syndrome. I was not given the option to remove a potion of intestine/rectum due to the location of the tumor  and the hundreds of polyps. I opted for jpouch after several consultations with colorectal surgeons. We went out of network with our insurance to go with the surgeon that we chose. He was great. Answered questions, helped with the decision making process, helped following surgery with several minor setbacks. I had an ileostomy for 3 months and had the 2 step procedure. I recommend using the ostomy nurse as much as needed. The ileostomy was not horrible at all. Mostly more of a nuisance with choosing clothing and figuring out what supplies worked the best and how to prevent skin breakdown and leaks. Then comes the j pouch... I hated it with a passion initially. I had a high output ostomy and my pouch followed the same pattern. I had horrible butt burn, multiple fissures, cuffitis and horrible pain until I figured out what to eat and not eat and how to care for the skin. . It’s a learning process. It takes time, but has improved for me. I can’t eat many things that I did before, but I have learned to be creative with meals and times of meals to ensure that it doesn’t affect my daily life as I do work outside the home.  I had the initial surgery 11/2016 and 2nd step 2/16 and it is manageable. You will have set backs, but you will get through it. I would definitely discuss with your significant other regarding fertility. I have one child (prior to this starting)  and due to a few complications, the fertility specialist has discussed surrogacy as pregnancy is not a safe option for me. It is definitely something to consider if you plan to conceive. There is a forum on this site that discusses fertility experiences. Ultimately it is your decision. Do not settle! If it doesn’t feel right, schedule another consult. If you have questions, feel free to PM me. 

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