Hi, I have just registered,but have been coming here since my takedown surgery. I had both surgeries at the Moffit Cancer Center in Tampa. Although the facility and people are nice, I just could not get any answers. I was starting to feel like a lab rat and the doctors made me feel like all the problems were in my head. I switched doctors recently to a local doctor in Orlando, Dr. Larech. This doctor is much better and I he really made me feel like he really cared. I have FAP that runs in my family (my mom's side is all dead now). I know it might sound silly, but I regret doing the surgery now. I thought I was being smart by preventing the polyps to turn into cancer. In fact, by eating healthy, I was able to shrink the polyps, but gave into fear and had the surgery.

After the second surgery, I have had nothing but problems. My job forced me to go on disability since Feb and I haven't been able to return since. Money is growing tight, and I do not know how to continue to provide for my family. I feel like my family, just cannot understand and feel that I am lazy, etc. The truth is I live in unbearable pain almost everyday. For me to drive 5 miles is like driving 50 miles. I have to sit on 2 pillows to go anywhere, which barely helps.

I am just wondering if anyone else has had the same issue and if their is any solution. I cannot imagine to continue living like this. The doctors cannot find out what is wrong and the money is getting really hard to keep paying them. To go back in history, the doctors first thought that I might have a fissure or pouchitus. They were not able to find this. They did find that my organs had to be dilated because they would shrink. Now they say that is ok. I have been on flagyl in the past, which helped the first time. I have tried all cremes, taking immodium, metamucil, nothing seems to really help. Still have bowel movements 10 - 30 times a day. I usually feel this pressure that is so unbearable. The problem is usually caused by sitting down for too long. It is even hard to sleep because of the pain. Pain medicine does not do anything. I just need to find some answers and have lost all patience with the doctors. Food is not really the issue, more than the pressure. Lately, the pressure seems different, almost like nerve damage. It feels kinda like a shot hitting the bone. Far as bowl movement, it always feels like swallowing glass or nails coming out of my rectum. Ouch!! If I drive for more than 30 miles, it takes me usually a day to recover and barely can get out of bed. My weight keeps dropping, as well. Almost getting in below 110.

Sorry to sound like a broken record, just need some answers.

I do hope you get some relief soon. Is the Cleveland Clinic anywhere near you? It might be worth going there for a consult. Have you considered having a permanent end ileostomy? The people here who gave up their J-pouch seem to have regained a wonderful quality of life after making this decision. Best wishes.

Wow, I was thinking that it was all the way up in OH. So it is close to Miami. It is still a stretch, but maybe it is worth it. Anyone else been to the Cleveland Clinic in Westin, FL? I have thought about going with the permanent bag, but I am still scared. I am already ashamed of how I look now, but to permanently be with a bag, scares me. I have thought about it alot and I am considering it, I just don't want to do it, until I cover all bases.

I'm sorry to hear about these problems that you continue to experience.

You are new to this forum, but it sounds like you have been reading for awhile. You may want to PM Jan Dollar with your situation. She is away due to personal reasons but posted recently stating that if anyone really needs her input, they could PM her. She is very knowledgeable and might be able to assist you.

Hope you get some help soon.