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Anyone make the same mistake I did?? New member w/ FAP - Long post/ Lots of questions

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Irritable Bowel Syndrome
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HoustonGuy
New Member
Joined : Apr 2011
Posts : 3
Posted 4/28/2011 10:19 AM (GMT -8)
Hi all,
First, let me introduce myself. I am a 28/M from Houston and have been browsing these forums for a while now and finally decided to join as this seems like an excellent site with great members willing to help where they can. I have FAP, unfortunately that's all I really know because of the mistake I made, which is try to ignore it for 12 years. I found out I had FAP when I was 16 because I used to play hookie at school, until my dad insisted I go to the doctor since I was always 'so sick'. The doctor did a colonoscopy because my mom had also had FAP and passed away from complications of it. Pretty much, I was told I needed surgery, and freaked out after having it explained to me. I went the next 10 years trying to ignore the symptoms and live with it, after all, I was used to it. I also had the attitude of "hey, when I die, I die." Well, a few years ago things started to finally get to me, I had constant blood in the stool and I started suffering from anemia. Next, the amount of BM's increased, pain increased, and everyone around me started to notice that I looked pale and lacking color. I lacked any energy, got winded very easily, and became pretty moody. Flash forward to present day, I've wised up and value my life now and hope this can still be treated. Unfortunately, I don't have insurance so my first question is, does anyone know of an insurance company that won't deny you for FAP, or am I best just trying for the Texas High Risk Pool? My next questions involve my symptoms. Currently, I still have blood in my stool 90% of the time, I have been diagnosed with severe anemia (doc said my blood level was around 8, avg male is 14-15), I have about 10 BMs/ day and another 2-3 overnight but seem to always have the urge to go, and scariest and most concerning of all is when I do have a BM there seems to be a yellow fleshy mass that pushes out and retracts when I'm done (gross, I know). Has anyone else ignored their problems to this level of seriousness? Has anyone gone a long time with no treatment, and if so were there any other problems that came of it? Does anyone have any idea what the mass could be? I've read about anal prolapse, and I don't think that's what it is. My best guess is a polyp or tumor that is causing a blockage and that's why it pushes out. I also think that explains the constant urge to go. I'm debating going to the emergency room next week, but I worry that they will only diagnose me and release me without treatment due to lack of insurance. Am I right about this or do you think that a hospital would, at minimum, have to perform some sort of surgery? What about a county hospital (Ben Taub in Houston)? I also have many questions regarding the surgery itself but I will take those to the ostomies forum. If you've made it this far I thank you for your time, and any help would be greatly appreciated.
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kazbern
Veteran Member
Joined : May 2010
Posts : 8384
Posted 4/28/2011 10:30 AM (GMT -8)
I don't know much about Ben Taub, but MD Anderson has an endowment for treating low income cancer patients. It might take a while to get into their system. Have you been taking any iron supplements?
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HoustonGuy
New Member
Joined : Apr 2011
Posts : 3
Posted 4/28/2011 10:35 AM (GMT -8)
I take a multivitamin and B-12. If I take straight iron I find it makes me extremely ill, though someone recommended taking an iron supplement at night so that I can sleep through the ill feeling. And thank you for the information on MD Anderson, I will contact them today!
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dbab
Veteran Member
Joined : Jan 2004
Posts : 4151
Posted 4/28/2011 10:37 AM (GMT -8)
I agree about MD Anderson (I'm in Houston as well).  Given that FAP is so rare, you may be able to get into some kind of program.  It doesn't hurt to contact the hospital.  In certain cases of rare diseases, there can be trials and such where they are able to treat you even without insurance because they need the patients.  Of course, there are downsides to this as well but that is other options.  I would start with the best hospitals in the Medical Center and just see what info you can get. 

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Ides
Forum Moderator
Joined : Nov 2003
Posts : 7200
Posted 4/28/2011 1:42 PM (GMT -8)
MD Anderson has a FAP Center, clinical trials for FAP, FAP registry, etc. I am sure they can get you into a program on some type of sliding scale. Call them NOW:
FAP Registry Contact Information
Phone: 1-888-502-8446
Fax: (713) 563-9740
E-mail: FAPteam@mdanderson.org
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shawn12
Veteran Member
Joined : Jul 2004
Posts : 1293
Posted 4/28/2011 5:50 PM (GMT -8)
HoustonGuy

I am glad the others can help you out here. I am not familiar with FAP, but I am sorry to hear your going through such a rough time and I hope someone can help you out soon.
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