Posted 10/25/2009 3:59 PM (GMT 0)
Hi Jenise,
I had a great colon, no inertia, and went every morning with no medications. Issue was I went 6-8 times every morning over 2-4 hours. Some moves were complete and relieving; others were incomplete and required me to take a fast walk around the block, get the urge back, then literally run back to my house and do a complete move. This took from about 7:30 to 11:30 every morning. BUT, I was otherwise in excellent health and I WAS going tons of poop daily. The only reason I (unfortunately) looked into it was I was missing most mornings of my FT teaching job which I loved. BUT I shoud've just taken an afternoon job and worked PT.
I had a defecogram at a large Boston GYN Hospital. What was listed on the report was a moderate sigmoidocele, small rectocele, and tiny cystocele. I had no anismus. The anorectal angle widened normally for defecation and angled normally for continence. Digital Exam showed no issue with the anal muscles.
Colorectal surgeon there said they could take out the sigmoid colon, close the space between the top of the rectum and vagina through which it dipped when I pushed and put in a piece of mesh to keep that space closed. He then went on to say how dangerous the mesh was and that this repair may not last for more than 3 months but hopefully longer. I asked why I may not get lasting benefit or what they could do if a mesh issue, he did not answer there or to my follow up requests for information. I then took the defecogram DVD to a GYN doc at a big medical center in Northern New England, he watched the DVD and told me the same thing.
Then I consulted at the place where I ended up going; a large medical trauma center in my end of the state (Massachusetts).. A colorectal and GYN team did 2 of these procedures per week and they said patients got 8+ years of lasting benefit. They did not use mesh and said they'd seen too many problems with it. They used all my own parts. The GYN doc retrieved a half cup of urine from my bladder through a small straw and TOLD me I retained 170 cc's and if he didn't also raise my bladder I could get infections in the future. (I'd never had one. Unknown to me at the time...a half cup is only 80 cc's of urine not 170. Also as I didn't know patients could get their doc's notes, I didn't know at the northern NE med center on month earlier, I'd only retained 66 cc's of urine post-void. Anything under 100 is normal. So this is how the western Mass GYN got me to consent to the unneeded bladder lift.
I also had a large benign right ovarian cyst so needed the right ovary out. The left one was fine on ultrasound but the w. Mass GYN doc went on and on about how if he left it in it could turn cancerous. (Any body part COULD but we don't just remove parts on the future threat this might happen. I had no personal history of cancer or any family history.) THis is how he got consent for unneeded left ovary removal.
So consent was for 2 ovaries out, the "bladder lift" I later found out I didn't need (It's now too high and hard to pee), and the sigmoid removal (for the sigmoidocele.......which in review for my law suit never existed. The defecogram was mis-read by a resident at the Boston hospital, her teacher didn't proof her work. Then in surgery it became evident that my sigmoid was not elongated, but the 2 western Mass docs removed it anyway. This part wasn't discovered until 2 years after surgery when I had the original defecogram read by a forensics radiologist then 5 other expert radiologists. They all said the same thing.....it was only a loop of small intestine that temporarily descended into the space between my rectum and vagina, the loop of bowel was not colon.
Needless to say, I wish I'd sent my DVD of the defecogram around to have it read by other radiologists, but I'd gone on 3 surgical consults and the docs all said that was colon (unknown to me at the time, they were only going by what the report said.)
Then in surgery, consent was far exceeded, they hooked my vagina to my backbone (I had no vaginal prolapse), they over-corrected my bladder not falling in the first place, removed both ovaries, "fixed" the rectocele (which on medical review was all I really needed fixed along with closure of the space between vagina and rectum into which the loop of small intestine descended), then for unknown reasons, the colorectal surgeon removed the top of my rectum along with the sigmoid. I had no disease and no sigmoidocele, so why he took the top of the rectum is beyond any of my legal reviewers and my atty who used to be a surgeon.
So til this point, there was wrong diagnosis, surgery done knowing (when they got in there) dx was wrong, doing unneeded, unconsented procedures.
Then 3 weeks post-op I developed a severe stricture at the anastomosis (where what was left of the rectum was joined to a very tiny portion of the sigmoid which he left. I've since read that no part of the sigmoid should be used to make the anastomosis. The descending colon should be what is joined to the top of the rectum.) The stricture narrowed my colon in to a diameter of only 3 millimeters (half the diameter of a pencil). I couldn't pass stool through this. The colorectal surgeon took a gastrograffin enema xray and said there is huge amounts of stool backed up above the anastomosis. I said I know, what will you do about it. He said nothing.
I kept calling and calling for help. Finally in a month, my neighbor drove me to mass general where they dilated the stricture right away. After 2 more dilations it stayed open, but was no longer muscular colon. Then the ischemia (lack of blood flow) spread to 4 inches of my colon just above the anastomosis. So this was non-muscular colon. Poop had to drop from the end of the descending colon into what was left of my rectum. That was quite a trick to get that to happen.
With all they did, they scarred my levator ani muscle to which the puborectalis muscle is attached. This kept my rectum at a right angle just like anismus would. So after their surgery the scarring caused the right angled rectum that couldn't straighten for defecation as it could prior to surgery. PT and BOtox shots proved it wasn't development of anismus but instead was scarring.
Then 2 loops of small intestine because severely scarred in my deep pelvis 7 months after surgery. Then for the next 7 months I was unable to eat due to recurring small bowel obstructions. I was hospitalized everywhere with NG tubes. No offers of help for long term help were made. I was never given IV nutrition. I went from 125 to 99 lbs and was literally dying of starvation and was unable to defecate through all the scarred colon and rectum.
I went to the Mayo Clinic. They found the scarred loops of small intestine but said it was too dangerous to free them from the scarring and I should keep using my PEG nutrition tube (which I did not have!) and take their $6,000 physical therapy course, though I had explained my pelvic floor had been scarred. Prior to the surgery it moved totally normally.
I saw 7 top surgeons at 10 medical centers before I found help. I ended up at Lahey Clinic where they did the only thing that could be done to save my life: free the loop of scarred small intestine, put in an adhesion barrier, and do a permanent ileostomy. I was lucky to find someone who would break the wall of silence that docs have to protect each other and do what needed to be done to save my life. I am very grateful to this doc. The others would've just covered up and said "She starved herself." My PCP had already written me up with an eating disorder I didn't have. Mass General, after they couldn't figure out why I continued to have problems, locked me in the psych ward. The psychiatrist really listened to my tale and told me I needed a good surgeon not a psychiatrist. Every place was all prepared to cover up whatever could be.
So that is why I send my Lahey Clinic doc post cards from all my cruises since his surgery. After my suit on the original radiologists and the two original surgeons I'm going to write a book on how to avoid such situations if a patient can. It's going to start with advice on getting every record from every doc you see in your quest to solve a problem, how to get your scans reread by other professionals, basically how to double, triple, and quadruple check.
The real kicker is I didn't know my original 2 surgeons had nearly a dozen law suits already on file on them at their local court house. I didn't know to go there. They are for unnecessary surgeries, patients with loss of bodily functions, deaths due to ignored post-op complications, all the stuff I experienced. Our state medical board does a great job of covering for these two. If you call, they will say only one has 2 complaints and the other has 2 suits. Far from the truth.
So, that's how I came to be. Am trying to help others avoid what I fell into. Most docs I believe are honestly trying to accurately diagnose and at worst may just not understand, then get defensive. I, however, fell into a serious "malpractice" that nobody seems to be addressing on a system-wide basis such as the hospital where they practice. After my suit, which could take until 2012, I want to see what I can do to help protect others from them, while living my life in the meantime. We'll see. Sincerely, Rosemary