Is my surgeon nuts???????

Hi all,

    I'm so thankful I found this forum, as I've had ostomies very much on my mind lately. I apologize in advance for the length of this but I need some advice and want to get as much detail as I can out there.

   I have dealt with constipation essentially since childhood, though I never saw a dr. When I was 13 I suddenly started having truly terrible pains that I felt first in my back but would rotate into my sternum. They would last for 4-5 hours and there was nothing I could do or position to assume to calm it down. They lasted for nearly two years keeping me up all night appx 4 days a week

about a year ago when I got married and got insurance I finally went to a doctor for the constipation. He ordered Colace, which didn't do anything. I took that, milk of magnesia, prune and prune juice....etc.

In July I went to my new dr who thought my gallbladder felt funny but didn't follow up on it until one morning in august I looked jaundiced. I hadn't moved my bowels in a month so I bypassed my PCP and went to a gastroenetologist, who found complete rectal prolapse and reffered me to a surgeon.

He ordered a barrage of tests before deciding which surgery would be the right one. These were the results:

*Celiac (tested twice) was negative

*stool sample was normal

*Thryoid was normal

*BUN, WBC and RBC normal

*Liver fxn normal

*Gastric Emptying exam.....bad. showed marked delay. I was diagnosed with Gastroparesis

*Small Bowel Transit....somewhat slow but was told it wasn't slow enough to merit medical attn

*Sitzmarker.....surprisingly normal. No colonic Inertia

*Colonoscopy....normal.

*CT scan........biliary colic with many gallstones

*Video Defecography....massive rectal prolapse, rectocele and enterocele.

On Halloween I had a sigmoid resection/rectopexy, an open-abdominal enterocele repair and a cholecystectomy. The surgeon also described my peritoneal connective tissue as being "pediatric".

then an MRI found blood clots in my portal vein and put me on a 6 month regiment of coumadin. I got a blood test to see why I clotted and high levels of anticardiolipin antiobodies were found. They then tested me for autoimmune disorders (lupus, for example) but everything else had normal levels

THEN (lol....sorry) I started having excruciating rectal pain and a return in constipation. My gastroenterologist put me on zelnorm in addition to the reglan I was already on for the gastroparesis. She also presribed miralax which I take daily.

Still none of the above has helped, and the rectal pain is getting more severe with a return in prolapse. I spend between 3 and 4 hours daily on the toilet. (At home I now keep my laptop and a portable dvd player in there!) Maybe it's related to the stress of it all, but I've also started losing hair, and suddenly have acne and terribly oily skin. I also have had severe fatigue (almost narcolepsy really) since I began college.

The surgeon said I am not a candidate for biofeedback therapy because my pelvic muscles function fine, and said I should consider a colostomy if I'm in such pain.

which FINALLY brings me to my question. without having an obvious disorder....is this an overly aggressive approach? I am only 22 years old, and I am a fitness competitor so otherwise I'm in fantastic physical shape with a clean diet. it seems as though I should have an actual physiological merit of a colostomy.

any thoughts? (sorry about the length once again!)

I agree with Judy.  You need expert advice from an expert. Doctors are no different from plumbers and mechanics in that there are good ones and not so good ones.  You need to do some detective work and find the right doctor. I have a very good GI now, but I've seen a few lulus in my time.

thank you so much; I agree with all of you. As much as I want relief I'd like to see if there are any less drastic measures that would do so before commiting to something so huge

Have you been checked for Cystic fibrosis?

yours could be more of the GI kind & not the pulmonary kind.

Please keep searching for the root of your troubles.  Thank goodness you have insurance now! 

In addition to a second GI opinion, I would ask you to seriously consider having a full evaluation by a Colorectal specialist.  And then perhaps another opinion by a second one.  There is a national association, but I don't have that info at hand.  Cleveland Clinic, I know, is one of the primary colorectal facilities - wouldn't hurt to call.  You'll want this type of qualified specialist anyway, if surgery is necessary.

I have a granddaughter your age and would give her the same suggestions.  Gather ALL! the reports from previous doctors, copies of all your lab work, test results, etc, etc, etc - then get to someone who can give you answers, and somebody else to verify them.

Good Luck!      Martha

hi i'm a female and just turned 26 and i just want to let u know that if all else fails and u end up needing the surgery, its not the end of the world (as i thought it would be). I just wanted to suggest whether u decide to have the surgery or not, don't wait too late. I put mine off for a year and was almost to the point of no return, meaning it would have had to be permanent due to the damage it was doing to my body. These surgeries can be reversable. Which brings me to my second point

if u do decide to get the surgery, do not just stop there. Continue to do ur research and find a doctor who will diagnose u correctly. sometimes, due to the bag and the fact that im feeling much better, i dont think about my crohns and dont focus on keeping it under wraps. Im trying to get better at it lol. But i said that to say, if you get it and u still havent been diagnosed, use the time that ur feeling better to actively search for ur much needed answers

I'm so sorry you've had to go through all of this at such a young age.  My heart goes out to you, and I'm glad you found this forum, too.

To answer your question, I do not think your surgeon is nuts. He wants to help you feel better and not be in so much pain. I had Crohn's disease in my rectum and large intestine for 7 years before finally agreeing to have surgery. Looking back, I can't believe I waited so long, because I feel so good now.

Having an ostomy is really not a big deal when you compare it to being sick and in pain all the time. It is completely hidden under your clothes, and nobody would know you have it unless you tell them. My husband is so happy that I'm healthy now, and he doesn't even notice it.

I agree that you should get a second opinion to make sure that surgery is the right path for you. With all of the pain you've been having in your rectum, bypassing it would bring you some much-needed relief. Imagine never having to sit on the toilet again waiting for something to happen! You shouldn't have to go through that anymore.

I bypassed my colon and rectum for 8 months with a temporary ileostomy before deciding to make it permanent and have them removed. By getting the chance to try the ileostomy out before committing to it, I found out that I liked it much better than I thought I would.

Good luck with your decision, and please keep us posted on how you're doing.

Ohio76, you're right about the association. I'm lucky, because my surgeon is the head of it, over about 6,000 colorectal surgeons. His name is Dr. Wexner and he practices at Cleveland Clinic near Ft. Lauderdale, Florida. He is literally the best colorectal surgeon in the world and trains many doctors each year. Cleveland Clinic also has the largest colorectal library in the world and lots of doctors study there. I would trust the doctors with my life there (and I did). They are wonderful and understanding. I was in the hospital for 10 days and doctors routinely visited 3 times a day and made sure that their patients were up and walking. There is an entire hospital floor devoted to colorectal patients. The doctors are very thorough and I had eight days of tests prior to getting a diagnosis and my options. A colectomy is an elective surgery, regardless of circumstances.

There is also a Cleveland Clinic in Cleveland, Ohio. Cleveland Clinic will also accept sent in medical records and give their recommendations back in the mail for a small fee. That may be an option for others if they don't live near a facility.

By the way, Cleveland Clinic is in the process of building another hospital in the Middle East in Dubai, which is near Quatar.

butterfly