1097812 tn?1258292704

answers for my colon surgery

I have a family history of cancer, on both sides I have gone for my scope 3 yrs, straight the first yr. I had 30 pre-cancerous polyps, next yr. I had 12, next yr I had 8, 2 of them turned out to be High grade dysplasha.So for the last 4 months I have gone back every month, first month I had 5 more, next month,6 more, next month 4 more plus a lot of inflamation, The Dr. called me and said he thinks I will end up having part of my colon removed.so Yesterday I went back and got my last scope, I had 3 more, But before he did the scope, he told me I would probably have to have all my colon removed,due to the large amounts of polyps and he's afraid they will turn into cancer,and also I can't keep coming every month having them removed.I asked him if I would have to have a bag, his answer was no.I'm really upset not knowing what to except.my brother has cancer, my dad died of cancer, my aunt had colon cancer. I'm even having a problem finding a gastroenterologist/surgeon in or near my area. I don't want just a general surgeon, I want one that knows all about my problem,I live in Princeton Wv. I will travel to Roanoke Va. or Charleston WV.or Huntington Wv. can you help me?. Thanks so much
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Avatar universal
Have you been tested for FAP?  It sounds like it is in your family, and considering the number of polyps you are developing, it is the attenuated form.  I had 5 family members with this.  Two died of colon cancer at 32 and 38 because we didn't know the disease was in the family, but this is when my children had to start getting yearly scopes.  My sons were dignosed at 12 and 16 and had complete colectomies.  My oldest son died at 31 due to a Desmoid tumor that is associated with this disease, we lost his oldest son just 10 months ago at the age of 18, who was diagnosed at 10 and had a colectomy.  My surviving son is almost 39 and does not even let not having a colon slow him down.  He is a marathoner, ultrathoner, mountain biker, speed hiker, and competes in jujitsu.  He is married but no children due to the hereditary factor of FAP.  One of the first things you need to do is meet with a geneticist, this is the only way you will know what to expect should you have children, and in regards to your future. The worst part of all this is the frequent bowel movements you will have for 1 - 2 months afterwards, but this can be controlled with Immodium.  You will have to learn what food triggers the increased bowel movements (there won't be many) and adjust your diet. You can become dehydrated easier without a colon, just when exercising or in hot weather drink orange juice or Gatorade every day to keep yourself hydrated.  A stomach virus will hit you harder, and if you get one and start going out of both ends, go to the ER for some IV rehydration.  It's no big deal and you go home after a few hours.  My son has to do this about once a year.  Other than this you will live a normal life!  You need to truly speak with a geneticist, because if FAP is in your family, you need to know this because of other things that can occur.  My son has  polyps in his duodenum which they have been monitoring for years.  These rarely turn cancerous, but they can.  I research FAP everyday and work with 5 geneticists across the country, because I have 2 grandsons to keep safe.  I'm sure with all the colon cancer in your family, you have already met with a geneticist and they are your best resource with anything that is prominent within a family.  I know the Cleveland Clinic is excellent for this surgery (the man who invented the J-Pouch which you will have, practices there).  The Univ. of Cincinnati Medical Center is also excellent and this is where I'd go.  Good luck to you.  I know it's scary, but if you could meet my son, you would feel so much better about life without a colon.
Take care.....
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Avatar universal

Hi - about five years ago I underwent a total colectomy for torrential diverticular bleeding and, in response to another Medhep patient's question, I posted my own experience on:-


Maybe you would like to print this off and show it to your surgeon and ask him/her "is this what I might anticipate for my own situation".

I endorse your suggestion to seek out a specialist G.I surgeon who carries out total colectomies on a frequent basis rather than a general surgeon who performs hernias, varicose veins and ingrowing toenails!!  Also try to have your surgery performed at a hospital with a special G.I. department such as the ones mentioned in the above posting.  I do not live in America but I believe you have specialised Mayo (and other) clinics that specialise in G.I. surgery.

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Avatar universal
With all the helpful advice on here, always remember that everyone is different.  You will experience the many BM's in the beginning, but no special diet is necessary, just learning what causes the increased BM's is what needs to be eliminated.   Blogs do have some bad stories, and this is why people come here, we never hear from the good ones, which far out number the bad. The hospital in Texas is MD Anderson, and I have found that many do go there regarding this surgery, or for a second opinion. Good luck to you, I know you'll do well.......
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