Newbie Here

Walt1Member

Good evening to all,
My name is Walt and I'm new here. I'm 32 y/o from Alabama.

I was diagnosed with FAP back in 2004. My family (mother's side) has a history of colon cancer. Back then my physician suggested I see a gastroenterologist. I saw one and after a colonoscopy, he informed me that I had FAP. He then suggested I needed my colon removed. He referred me to a surgeon, who was able to perform the removal with J-pouch construction. I've had it for a little over 10 years now. I've been having some upper and lower endoscopies about every 2 years. I had the same exam done a few days ago. The doctor informed me that he found some polyps in my J-pouch and some in my duodenum, at least more than I should have. He discussed the results with my surgeon, then informed me that they are both in agreement that I should see a specialist in such rare cases. They are referring me to the Mayo Clinic. I must have to say that I'm beyond terrified at this point. I don't know what to expect, and as human nature, we tend to be afraid of the unknown. Some of my family members/friends suggested that maybe participating in a forum may help release some of the worries and stress regarding this situation. That's basically my story. I'm just so afraid of what's going to happen next. Anyways, I thought I'd share my story.

Thank you very much for reading.

-Walt

11/5/144:08 AM

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Scott FMember

Welcome, Walt! I saw you posted the same message in the FAP Forum, and that's a great place to get thoughts from other folks with FAP (it's usually best not to duplicate the messages, though). Here in the General Discussion you'll find a larger group of people who are also dealing with uncertainty, pouches, distant specialists, and bathrooms.

"Polyps" can be all kinds of things, some of them inconsequential. Do you know if biopsies were taken? Even when biopsy results stink they at least let you make solid plans based on reality. The unknown is tough for most of us, since we tend to imagine the worst possibility. Good luck!

11/5/149:32 AM

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wsh6745Member

Hi Walt,
Welcome to the forum. I'm sorry I don't know anything about FAP so I can't help you there. I do however, know exactly how you are feeling. I've been through a lot too and the unknown/uncertainty is terrifying. I just wanted you to know that you are not alone. I'm praying that you have a good visit with the specialists at Mayo. Hopefully there will be a simple solution to the polyps and you will have worried for nothing.

The forum is definitely a great place to hear stories from other people and to get lots of insight on problems you may be having. It can be comforting just knowing that there are other people out there who truly know how you feel.

I wish you great luck with your appt. Keep us posted.

Take care,
Wendy

11/5/149:28 PM

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Walt1Member

Good evening to all again,
Scott- I actually didn't see there was a FAP forum prior to typing the first post. I guess I just didn't even pay attention. My mind was of all out sorts. You are right about the part of imagining the worst scenarios. I think I'm actually making myself sick, at least my wife has noticed. I've even lost most of my appetite, not to mention my depression has gone into overdrive.

Wendy- Thank you so much for understanding too. It is good to know there are others out there and that I'm not alone on this. With this I'm not saying that anyone should have such conditions. I'm not saying that at all. I don't wish such conditions on anyone. It is tough having to deal with these kinds of issues. Uncertainty and the unknown is just what keeps worrying me. I just hope that the doctors there will be able to help me. From what I've read and heard, the Mayo Clinic is an outstanding hospital.

Anyways, thank you so much for your support!

-Walt

11/6/141:55 AM

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ChuckusMember

Walt,

I posted a reply in the FAP forum to your inquiry.

I'll help you any way I can..........just ask. I did give a recommendation for the FAP Guru @ Mayo Clinic in Jacksonville, it'd be in your best interest to see him directly as like I say, he IS the guru and is quite versed in FAP!

I'm here to help. Hang in there, chin up and there are lots of us to help.

Are you on Facebook? If so, shoot me a private message here and we will hook up there and I can get you into some of the "private" groups for those of us with FAP and you can get a ton of help/support there as well.

All the best,

Charlie

11/6/1412:04 PM

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TE MarieMember

I'm glad you posted twice and have seen it many times. I don't have FAP as an underlying cause for my j-pouch.

I'm concerned about your mental well being too. I have depression and anxiety and have been helped by medications and therapy. I hope that you are getting help for your depression. It is not something we can "will" ourselves out of and seeking help is only going to help whatever lies ahead for you medically.

Charlie is fantastic, I hope you take him up on his PM offer. If he hasn't been in your shoes he knows someone who has been.

I'm also go to Mayo's but in MN. Considering your location I'm assuming they are referring you to the Florida location. It is an outstanding organization that doesn't seem large. I'm being seen by 3 different departments, the other 2 my Mayo GI referred me too. No one has ever made me feel like I am staying too long, asking too many questions or that I don't understand what is going on with my body. I'm treated as an individual and not a number which is fantastic. I've had local doctors that practically have their hand on the door knob as they see me. I know the minute I leave they are not giving any more thought to my care.

Take care and remember to post again with any question or help for another person.

11/6/1412:55 PM

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Judy1Member

Walt, you will do well to listen to Chuck. He is very well versed on FAP. If he doesn't know the answer to what you ask, he will find it for you.

11/8/149:48 PM

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