Please help me, it seems like I'm dying, no GI help after 6 years in NC

[danni3808]

I had stage III colorectal cancer in 2006, and the cancer is gone.  But I've had several problems since then including very slow motility, (up to 3 weeks with no BM), total bowel blockage in small intestines, total Ecoli infection in abdomen and intestines, constant fatigue and weight loss (was down to 94 pounds after previously weighing 154), blood and pus in stool, blood in urine, bladder issues and so forth. CT scans all show backup of stool in entire small and large intestines. I sent my CT scans and other reports out of state to get second opinions, to a total of 3 certified radiologists and MDs. I also had one local hospital that identified the same issues (the other hospitals reported nothing), but the local hospital that did report something did not tell me, I had to pull the record to see what was on it.  But now I have a somewhat general consensus of ileus, enteritis and a fistual at the anastomosis.  That all basically means Chrons disease, bowel atrophy, and a cyst where I was reconnected.  I orignially had a very powerful GI local doctor.  I can't get any local doctors to look at my examine or prescribe simple antibiotics and anti-inflammatory meds that will help.  I did find the original surgeon posted something about me on a system used by all doctors.  If I go out of state, can I get help?  I did try once for another issue and was turned away without reason.  I've been so sick over the last year, and my health continues to decline.  Can someone please help me?  I did get an attorney to pull my records after not getting any help for the first 2 years after surgery (bad idea), but I am way past statue of limitations to file a law suit.  I really need help, and can't get it.  Is there a GI doctor anywhere that will help?  I've been to a dozen here and they tell me to go back to the original surgeon (that would not see me even after the first surgery).  I go to the ER, unless I have a deadly event (like bowel blockage), they send me away.  I had to give up my full time job due to my health, and I'm working part-time. I have insurance, at least for now. Please, any help?

[reh459]

i am sorry for you all are having to go thru. did any of you suffer with rectal pressure. i have had that for 2 months and my lower back has hurt for past 4 months. the pain is debilatting. i have been confined to my couch for 4 months. i had mri and they say there is nothing wrong with my back. thanks

[danni3808]

Oh, and I was trying to point out that I was not filing a law suit and nobody could think that I was since so much time had past...

[danni3808]

And it is possible to have Chrons and paralysis from what I understand.  They know my bowels are not moving, and it appears there is an issue around the anastomosis (there is free air to the left and the staples have a left shift).  It could be due to a fistula or cyst.  I have had one cyst that ruptured (with Ecoli in it), they did treat me for that because I would have died if they did not.

[danni3808]

These are the possible diagnosis that I received.  I had Chron's in my twenties, but no symptoms since then.  They called it a fistula or cyst at the anastomosis (I had 3 reviews), another radiologist also thought it was Ileus from the surgery.  But I don't really know which is the cause, that's what I'm trying to find out.  Plus, like I mentioned, the local doctors will not help.  I'm not blaming anyone, just trying to find someone that will help.  I also had misfired staples (that caused the leak) that was not fixed until 4 months after the surgery,  and septic shock from the leak during the surgery. I was in the hospital for over a month.  Those issues are gone now, like the cancer, but I can't get help in NC.  That's why I think they won't help.  I did find another surgeon to fix the misfired staples, but he won't see me now either.

[Caryopteris]

You said ileus, enteritis, and fistula at the anastomosis.  Then you said Crohn's disease, bowel atrophy, and a cyst at the anastomosis.  

These do not equate with each other.  

Did you have Crohn's diagnosed before the cancer came?  That would make sense.  Enteritisi is inflammation of the colon.  That goes with Crohn's.  Ileus is usually a paralysis of a portion of the bowel after surgery.  A fistula is an abnormal opening which probably needs to be repaired surgically.  It is not the same as a cyst.  Bowel surgery is risky because of the bacteria that lives in the colon.  People with Crohn's disease have a bad time and will have complications a lot of times that are no fault of the surgeon's.  I don't know how good your surgeon is, but even a good one could have complications come up for patients with Crohn's.  A surgeon can be your best friend, and diet may also be helpful.  There are also medications, but they have side effects that are rough.  So I feel for you, but it sounds like you need surgery.