I have not been on here in a long time - somehow this came to my e-mail so I ought to do better at helping others. Sadly, my husband of 25 years asked for a divorce about 6 months ago - I'm a wreck. But, I'm going to get past it. Never dreamed this guy would betray me in a zillion years! That's how these things happen though.
Vonnie - I am so sorry to hear your story. You are going through a sort of hell right now about all this. I think now that genetic testing is so much different than back in the day (I'm 57), they don't always show "FAP" anymore - just some mutations which have no "name". I only know this because my sister and I have it and at one point, she had to get her kids tested and herself tested at Cleveland Clinic - her test did not come back "FAP" - but - regardless - that's really what we have. Her kids go to CC and all care is based on FAP even if that's not the exact name of the mutation. I wish I could help you out in Charlotte. I don't know any docs there, but hopefully someone on here will. Is there any way you can fly to Cleveland Clinic? (I can't - don't have the money - my sister does) - so I understand that perhaps financially you can't do it. They are so good there with FAP - the entire way they do everything is to avoid the nonsense you are going through. But, for now, please don't give up. Vent your anger and frustration on here. I too have times when my symptoms (have had the pouch for I guess 34 years?) are so awful, painful, etc. - I would miss work, etc. - and I never did apply for disability, but I should have. Too much pride. Another suggestion - are there any support groups for people who suffer from chronic pain? You need to (I know - it's one more thing to do) meet people who "get it". I've also read several books on managing chronic pain, fatigue, etc. and found them helpful. There are lots of them. One book - I forgot the name, but I'll find it for you - is by a man with UC (if I recall) and for years he went through the same stuff you did - doctors saying, "well - everyone gets diarrhea now and then" or "well, everyone gets GI cramps now and then" - the book teaches you how to go into a new doctor prepared so that you don't get the brush off. Docs are often good people, but they have patient after patient and frankly - as they age, they just get tired of it. They want you in and out as fast as possible and then- hand you the bill. Put simply, they are human. I've never really found one who understands any of it - but I just sort of gave up. CClinic seems to be the magic place to get true care, effort from doctors, and real solutions - knowing there will never be a 100 percent perfect solution. I find as I age I need more rest, more down time, etc. jsut to cope with it - but many people are not like this - we are all different. Please keep trying. Keep asking on here about Charlotte doctors. I bet if you keep asking - and also ask as many people as you can out there in your daily life- ask ask ask - that there is a kind, caring doctor who will help you more. You probably would benefit from meditation and yoga ( I know - I didn't want to do it either) - tons of chronic pain sufferers find relief and compassionate friends who understand daily pain. I can't go now becaue of Covid. My sister bought me 10 classes..I made it to two? and the Covid hit. OK - that's all for now. Again- you feel alone - I get it - but you are not. I will be moving eventually once my divorce is final and one of my goals is to find people in a church (I don't go regularly - but I need to for emotional well being), find suppport groups, and to not hide out in my house all the time because I am so tired of dealing with this. It just makes me more depressed - you (and I am bad at it!) have to get out. For now, with Covid - that may not be possible - so many things are cancelled for now - but this Covid, I pray, won't last forever. Keep us posted regarding how you are doing. As Jan says, "this too shall pass" - wise words!