prophylactic colon surgery

[ineedanswers2]

I had no idea 10 years ago i had polyps because i went for my first colonoscopy to diagnose IBS symptoms, yeah was i surprised, i didn't have ibs,  doctor told me that just needed to have repeat colonoscopies every two years. far as he told me they were all hyperplastic (not dangerous), so i put my trust in him,  so every two yrs i had about 10 polyps removed and biopsied and now 10 yrs later, they say they are all adenomas, >40 adenomas, and now stomach polyps too, last enoscope was 5 yrs ago.  i was diagnosed with afap April 2010. geneticist says I'm extremely lucky, i don't already have cancer. but that my luck is running out.

my gastroenterologist , where i live now. told me that he wanted both colon and rectum removed based on 2010 colonoscopy and previous pathology reports and he was stunned that i had only been monitored every two years, he says if i don't have the surgery, i will get cancer. i guess they are worried that some of my polyps are already 10 yrs old, they just kept multiplying i guess because they were not all being taken out 10 yrs ago.

fast forward to 2011, saw a surgeon just last week and had a sigmoidoscopy two months after colonoscopy ugggh, anyhow he said that there are a few polyps in rectal area, most of them are in the transverse, hepatic flexure, and ascending colon. but with careful monitoring of it every year, i might be able to keep it longer, not sure how long though, it will have to come out at some point, so i opted to have rectum removed later on, so i am being booked for surgery for end of march beginning of april. they are doing a subtotal colectomy with ileorectal anastamosis. im a little worried because my gastroenterologist had told me that it was too dangerous to keep my rectum intact, but the surgeon disagreed, hope i chose the right thing to do.  in deciding to keep rectum longer, my thoughts were whether or not they remove all but 16 cm or just the muscle, i can still get cancer. i am coping better but worried my son has this too, he is 12 yr and will be monitored at age 15 yrs.

To this day i am still trying to wrap my head around having surgery while i am not sick, but i will do it anyhow, so i stay around for many years.

what should i expect after surgery? weight gain, food intolerances etc?

[mammo]

Hi.  We have FAP in our family so I can relate to all of this.  You don't need to have your rectum removed and it's good that you have gotten more than one opinion on this.  
AFAP rarely involves the rectum. You have the attenuated form which is  better than FAP, it allows you more time before needing the inevitable surgery.  My sons had their colons removed at 12, and 16, and my grandson at 10.  Are you working with a geneticist?  There is genetic testing for this, and if they locate the mutated gene APC in you, then your son can have a blood test to determine if he has the mutated gene.  This is a much better alternative than the on-going testing.  I lost my son and grandson due to a Desmoid tumor which if they're going to develop, they do so after removal of the colon  (they're rare).  My surviving son is almost 40 and he lives a very normal life.  He just completed a 100 mile trail run, is a marathoner, ultrathoner, mountain biker, cross country hiker, and until recently competed in jujitsu.  He eats pretty much what he wants and has 2 BM's a day.  What you will experience after surgery is many BM's a day, which can be controlled via medication and watching to see what foods make it worse. You will maintain weight, but most importantly at all times is to keep yourself well hydrated.  Without a colon you become dehydrated more easily, especially if you get a stomach virus and are going from both ends.  Then you want to go to the ER for immediate IV hydration which only takes a few hours.  My son has to do this 1-2 times during the winter. He stays hydrated with water, but if doing anything outside when it hot, you need to consume not only water, but orange juice and gatorade.  The latter two will replenish your electrolytes and potassium as well as eating a banana.  There are only a couple of things my son can't eat, and you will learn what yours will be with time.  Don't feel like you'll have to be on a strict diet because this just isn't true.  My son says it's all about attitude and the only big way it's affected him is that he chose to not have children due to the herditary nature of this.  But the biggest thing you can do is to educate yourself on AFAP with geneticists, they are all on the cutting edge with this and can best advise you.  There are many facets to this disease that doesn't end with the colon, make sure you are educated on everything.  It is very hard when you feel well to have this surgery, even harder to explain it to a child. You don't say how old you are but with the attenuated form, cancer normally doesn't develop until the mid 40's at the earliest.  Doctors do take a "wait and watch" attitude with AFAP because your polyps develop slower, and you have fewer. Make sure you are happy with the opinions you have gotten before making any decisions about surgery.  When my children were young it was called Gardners Syndrome and was considered an Orphan Disease, but now there is so much more known about it.  Google it and educate yourself and work with a geneticist so you know all there is to know.  You'll do just fine and I do wish you all the best.

[ineedanswers2]

i was 30 when the polyps first developed, i am releived that my rectum will stay in. i am confused though that afap shouldn't involve the rectum, my polyps are there too, but only a few. i also read that when the colon is gone, rectal polyps can develop at a 17% increase, ever hear of that? some of the info is contraditory to what others say. i figured the hydration part would be an issue. a question i had was will my meds go right through my system or will they process normally, ever had issues with that? i am waiting on testing for the apc gene now, my oldest son is being tested by colonoscopy shortly.

[mammo]

Polyps in the rectum must be rare because I've never heard of this and that's what makes having a total colectomy with a J-Pouch possible.  They can remove the polyps in your rectum very easily.  I have never heard about rectal polyps increasing after the surgery. I work with 4 different geneticists across the country who are all on the same page with these two conditons and never has this been mentioned. My sons had no problems processing any meds and my grandson had a 5 organ tranplant while he had his colostmy bag, which put him on many anti-rejection meds with no problems and everything he ate went thru him like a freight train into his bag.  So you should be fine.  Since they can and do remove polyps as they find them with AFAP, I would opt for having them remove the few in your rectum or at least watch them.  My son still gets upper and lower scopes, and has not developed any new polyps in 28 years.  I hope they can locate your mutation, the geneticists have not been able to do this in our family.  They are telling me now that because 33% of all mutations are not found that they are looking at another gene causing the APC gene to malfunction.  I stay very involved in this because the son I lost at 31 had two boys, and his oldest was diagnosed at 10.  He, like his father suffered horrendously and their ashes sit side by side in my daughter-in-laws living room.  My oldest grandson is 17 and has lost both his dad abd big brother and knows he may be facing the same.  So we, the geneticists and doctors have vowed to keep him as healthy as possible.  I have a daughter who is 39 and they feel she hasn't inherited the mutation, but she still gets regular scopes.  She has a 4 year old son who we want to keep healthy as well, and they say for every year she goes without developing any polyps (she's had none) the less likely it is that she has the mutation and therefore her son can't possibly have it. Below are two good websites, but you get the best and most accurate answers from your geneticist.  I know scientists have seen some good results with polyps shrinking and even disappearing when a patient is put on an aspirin regimen. You may want to ask about this. I'm surprised that they told you they are surprised that you don't already have cancer because the polyps don't become cancerous until you're around 50.  If it were me, I'd contact the AMA and ask for the name of the top Gastroenterolgist in your area and get another opinion.  Had I done this with my son, he would still be with us. I did do this but by then it was too late for my son, and the new doctor said he should never have been in the condition he was.  I trusted his doctors to do everything to save him and they didn't.  Trust me, another opinion is well worth it and needed since you have two doctors in disagreement.  It's a serious condition and knowledge is power, get a third opinion from a Gastro doctor.  I will you and your family all the best and feel free to contact me any time.  Take care.

http://www.cancer.net/patient/Cancer+Types/Attenuated+Familial+Adenomatous+Polyposis

http://www.mskcc.org/mskcc/html/59185.cfm

[Morecambe]

  I can make a few comments on what you should feel after colon surgery although my own reasons for undergoing this surgery (torrential diverticular bleeding) were different from yours.

In response to another Medhelp patient's posting, I recorded my experiences on:-

http://www.medhelp.org/posts/show/523166

You may want to print off these comments and show them to your surgeon and ask whether he/she agrees,

regards
Morecambe