fap

[rjmwb2012]

i have been diagnosed with fap in 2009 and have been told i have to have my large bowel removed, i have had 2 colonoscopies done  and now my genetics team and surgeon have told me it is now necessary for me to have my large bowel removed, they say i have over 100 polyps in large bowel and that some have started to turn. For a long time i kept telling myself not to have the operation , but recently i decided to go with the operation in fear of what may happen if i dont have the operation.
I have tried and tried to get information on what i should eat after the surgery, but i do not seem to be getting anywhere. Macmillan nurses  dont seem to know anything , along with my gp and genetics team.
Along with this fap i also have been diagnosed with Obstructive sleep apnoae, have arthritis of the joints and have recently undergone surgery for a strangulated hernia, spent a week in hospital recovering , after surgery they told me they had severed a nerve  so i dont have much feeling in the right side of groin area, but i am still in some discomfort from the surgery which was like 3 weeks ago now.
Surgery for full large bowel removal is being set for sometime in september 2012, so any advice from people who have gone through this recently would be a very big help to me, and what foods are best avoided.
by the way i am 47 years of age., you can also contact me at ***@****.

[Morecambe]

Sorry - I didn't pick up on your posting earlier but I would have suggested that you study a previous posting of mine that Calgal kindly highlighted in her reply to you above dated 5 August (Many thanks Calgal...). Hope you located it OK??

As mentioned, after my surgery, one of the changes was the frequency and consistency of my motions which became "loose/liquid/runny" due to the absence of the colon and its "water retention" characteristics.

I ate pretty much everything I fancied, but in order to modify my motions to a more "muddy/sludgy" consistency, I ate a very high fibre diet.  Items such as:-

- pulverised fresh vegetables to which organic bran has been added
- pulverised fresh fruit to which organic bran has been added
- yoghurt + bran
- home made muesli (soak organic oats + bran in milk and add grated
apple/fruit/nuts/lemon juice etc)
- wholemeal bread
- no white bread, colas, junk food etc

I likened this dietary regime to clearing up a liquid spillage on the kitchen floor by throwing sawdust on the spillage in order to make it more easily picked up.

Do please come back if you need any further information.

regards
Morecambe

[rjmwb2012]

I forgot to mention  there was 10 in our family , 3 sisters and 7 of us brothers, my oldest sister died over 30 years ago to cancer , she died 2 years after being diagnosed.
the rest of my family , mostly all have their own children now have been diagnosed with fap or afap, and so their kids are going to need checking .
1 of my brothers has been found to be clear of fap so he is the lucky 1.
I know that this disease should be detected early in years but we didnt know we had it until my mother had a blood test, being 47 now i am  suprised  after what i have read and been told that these polyps have not already turned .
I already had a operation just 5 weeks ago due to a strangulated hernia,, so thats why i not having my large bowel removed till september, give my body time to heal from surgery 1st.
Also i have obstructive sleep apnoae  and am awaiting final results to see if i need a cpap machine, if i do i have been told by my surgeon that once i have had the operation , i will have to have the cpap machine on  straight away . 1 other thing is  for many years i have been very very tired, maybe this tiredness is part of the fap and nothing to do with sleep apnoae, only thought about this after i read of many people with fap being very tired. Did or does anyone in your family  suffer with tiredness  from this fap, ?

[rjmwb2012]

Thanks mammo and sorry to hear of your loss.
  My mother who now in her 70's  had blood tests and found out she had the AFAP  gene, she has a colostomy bag attached now  which will be for life now,  the family had to have genetic testing and we found out that some had AFAP  and some had FAP , my genetics team have told me i have FAP , they did 2 colonoscopies  and found more than 100 polyps in large bowel , recently i met up with my genetics team and surgeon who told me that the polyps had started to turn and have stated that the large bowel has to be removed.
I tried to find more information about diet from the macmillan nurses but they ignored me, my gp doesnt have a clue  nor does anyone else i have spoken too. it seems my best advice is from all of you nice people on here who have been through this at some point in their lives , so know whats best to eat and whats not good to eat .

[mammo]

Hi...so sorry to hear about your diagnosis of FAP, but it sounds more like AFAP (Attenuated Familial Adenomatous Polyposis) to me.  With FAP you are usually diagnosed with your colon being carpeted with hundreds to thousands of polyps and they develop during puberty.  With AFAP, the polyps show up later in life and there are fewer like you have now.  Either way you do have to have a total colectomy, but you won't have a permanent bag.  Some surgeons are doing everything in one surgery where others are still doing it in two steps and this results in you having a colostomy for 2-3 weeks.  We have FAP in our family, and the disease has many facets so be sure to do your own research because it doesn't necessarily end with the removal of the colon.  One rare side effect are Desmoid Tumors, I lost a son at 31 to a Desmoid  and a grandson at 18 to one as well.  My boys had their colons removed at ages 12 & 16, my grandson at 10.  Due to the development of a Desmoid in my oldest son and his son we lost them both, but my youngest son who was diagnosed at 12 is now 41 and lives a very normal life.  He is out in the High Sierras/John Muir Trail hiking as I type this, and he will be hiking for an entire month, he is a speed hiker.  He is a marathoner, ultrathoner, mountain biker and has competed in jujitsu....so you can see that you can have a normal life.  The weeks following your surgery you want to eat foods that are easily digestible...most importantly know that everyone who has their colons removed are able to eat pretty much of everything....some have to avoid hot and spicy foods...others need to be careful with fiber others can't eat fruit, etc.  My son can eat just about anything except for hot and spicy foods....he can eat them but then he has to make many trips to the restroom.  So, sometimes he feels it's worth it to indulge in these foods.  YOU will learn what you can and cannot eat, and what foods cause more frequent trips to the bathroom.  You'll always need to keep yourself well hydrated if you do much outdoors in the heat, my son doesn't let anything stop him so it's all do-able.  In the winter if you get a stomach bug where you're going from both ends you can become dehydrated very easily, and you may need to make a quick trip to the ER for re-hydration which only takes 3-4 hours. Desmoids are very rare with this disease but anyone who has FAP or AFAP should be checked after removal of the colon for the growth of one because trauma such as surgery to remove the colon is what triggers them.  There is an FAP Group on Facebook that offers a wealth of knowledge on FAP, and you will meet the nicest people who all share their stories and it's very comforting, educational and supportive....I think you would really benefit from it.  It's now a private group so if you have any trouble getting into the group just let me know and I can get you in.  I hope this helps and please feel free to write me with any questions or concerns....We've had a toatl of 5 people diagnosed in our family with FAP...my husband and brother-in-law were diagnosed too late and this is when we learned about FAP and we lost them to colon cancer.  I've seen so much of this disease, but I feel it's good that you made it this long before having to have your colon removed and I wish you all the very best.

[CalGal]

Consider checking the following post on MedHelp: http://www.medhelp.org/posts/Gastroenterology/colectomy/show/523166

On it, you'll notice the name Morecambe who had his colon removed some time ago. He's offered some great advice to others on this board on what to eat/try following the type of surgery you're having. Put his name in the search box, and browse through his posts for some great advice.

[Caryopteris]

Here is a very helpful article.  

http://www.****.com/article/372859-diet-after-colectomy/

It says you should consult with a dietitian after surgery to optimize health,  You might ask her if a nutritional supplement such as what AKEA offers would be of help.  It would probably be a way to get additional  nutrition from vegetables without all the gas associated with certain wonderful vegetables.  

http://****.com/healthy-living/