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!

Pros

Cons

Experience

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.

Bill

 

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. 

"high grade dysplasia and a malignant polyp in the anal canal made pouch removal necessary" wow it's a really good job I read your post then, going to certainly talk to mine about that then, though I don't know what kind of risks I have with that, believe there arent any right now but certainly going to raise that with them next time I see them or certainly ask.

Thanks so much

In response to FAPQUEEN (love your photo seriously) yeah people can have varying experiences of having a pouch done, some just sail through it whereas some then spend a while adjusting I am in the latter rather, taking me a while for it all to settle down, even on codeine phosphate right now to help control it all.

It can really be tough to yeah get everything done, I mean you think you've conquered one area then one problem happens (for me a heck of a lot of tiredness but then worked out why that has been a problem for a rather large part of it but that's partly nothing to do with the pouch itself at least), now just exercising my pelvic floor, for things like that it's better to get a really experienced doctor to do the pouch due to things like damage to the spinchter muscles, luckily when I had a continence nurse look at mine they said mine were absolutely fine though the surgeon doing the pouch back in early december in 2016 is the most experienced surgeon in the UK doing pouches overall so was really lucky with that.

I could have got to 40 years old or should have rather, but I thought 36-40 it's not that bigger gap really and I was going to have to have this at some point anyway may as well be now and it's convenient was off employment for a while, ended up with some mental health issues so it was far more convenient not to worry about having to go back to work also my actual consultant as my surgeon who did the pouch isn't my consultant, they said I was like a ticking time bomb.

I think really it all boils down to having an amazing support network around you both social ones and clinical ones (family and/or friends) is really crucial with all this that's what I think anyway.

You have to be really patient with the pouch though since it can take anything up to a year (mine when I told them of my problems I have can take 4-7 months to settle down, believe others may have said up to a year so yeah.

All the best,
Jez.

Thanks for the responses. My surgery consultation is on the 2nd of October and I will know when my surgery is booked then. I refuse to sign or agree to anything until every one of my question has an answer but I have been told by other doctors she is the best female in the field.. she’s just a total B-Word.

not totally prepared to leave my job for a year, that’s going to be really hard. My boss is going to treat it like maternity leave so my job will be waiting for me to come back- but as I am an esthetician, leaving for an extended period of time means that I’ll basically be restarting my career from scratch. 

I had my surgery at 43 for FAP. My preference was to get it taken care of and done, before I developed cancer.  I didn't trust that any doctor could reliably monitor the number of polyps I had.  In my mind,  the only option was which surgeon,  hospital and pouch method (stapled or hand sewn). I was scheduled to be discharged from the hospital after six days but they discovered a blood clot and nutrient malabsorption which extended my hospitalization to 16 days. I think I took approx 2.5 months off work.  I kept my ostomy four months before having the takedown performed.  I only took two weeks off work for that surgery.  I had issues with my ostomy leaking, the ostomy nurse said women have more curves which contributes to difficulty getting a good seal.  Yes,  my fatigue lasted almost a year.  But I didn't stay home for that year.  And my bathroom needs didn't prevent me from working in home healthcare which entails driving from location to location all day long.

I currently take 6 mg imodium, twice a day to firm things up (it's still not firm,  but that's ok). It is an adjustment to different bowel habits.  When I go to an event with port-a-potties and crowds, such as a street fair or festival, I bring a secret stash of toilet paper in case they run out (take a partial roll from home before the roll runs out, flatten the roll and put in a small ziploc bag).  I eat whatever I want without issues.  I get scoped yearly,  which is an added expense.  But I try to remind myself it's the cost of staying alive,  a small cost when viewed in that light. Oct 10 will be thirteen years since my surgery.  

I was 19 when I had a total colectomy with a temporary ileostomy for 6 months and then a Reversal to a j pouch. I am now 43 and am just now at a point of loosing the j pouch to an ileostomy.  I had thousands of polyps and did not want to take a chance of having cancer as I was told at that time in 1994 that there would be a high chance of cancer If I did not have the colectomy.  I was able to work day care for my cousin after about 2 months as my recovery process was rough.  I ended up with a total hospital stay of about 3 weeks but my system was not “waking up” well. So I was in hospital for two weeks then went home got dehydrated and went back for another week.  I am not gonna sugar coat since I was so young I went into it so lighthearted but it really is a major surgery and hard on the system and about took me out because it was more than I thought it would be.  But once I got past those three weeks I began to mend and get my strength back. And then it was just the issue of dealing with the issues of the temporary ileostomy for the 6 months.  Once I got the j pouch I loved my life once I adjusted to what to eat and not eat and gain control of the frequency. Not sure if any of this helps.

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