For Everyone Who Has Had Colon Surgery....

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Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 7/25/2007 8:20 PM (GMT -7)   

I had a total colectomy, no bag, and I am still having problems.  When I try to move my bowels I can feel things getting stuck and ripping me inside.  I have only been able to eat jello for the past 5 days and I have been in the hospital several times because I have poor nutrition.  I am going to see my GI specialist (for the 9th time this year) on Wednesday and I am going to BEG him to fix this problem.  I truly think that my rectum has shut down and is not allowing things to pass.  I rip and tear just trying to pass the liquid jello and I have to use about 30 suppositories a night.

 

Ok, so here is my question.  What should I ask my GI doctor to do?  Should I ask him to put me on a bag?  For those of you who have bags, does this eliminate the need to a rectum and keep things moving? 

 

Or, should I ask for a J-Pouch?  Does this also help with rectal problems? 

 

I do not know anything about any other surgery other than the one I had (a Total Colectomy).  So, are there other surgeries that could help me? What is a colostomy, an

 

The hospital attending told me that if I cannot find a way to eat more solid foods then I am going to kill myself.  I cannot keep starving myself because my defective rectum (gosh, I cannot believe I am even writing about something so personal, but I really need some help).

 

Any advice about your personal surgery, what your surgery means and how it affects you would be FANTASTIC.

 

Thank you,

Amey

 


Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 7/26/2007 11:42 AM (GMT -7)   
indersonu....a lawyer? why a lawyer? just because someone is sick, and doesn't get better right away, is no reason to call a lawyer.....

Amey. i am sorry to hear u are not doing so well after your surgery.....and feeling so uncomfortable.....

In my opinion, while this forum is a great place to get info and opinions, you should ask your surgeon about these different types of surgeries. In fact, before you go ahead with any other surgery (unless it is a total emergency) you should ask about all the options available, rather than just assuming your doctor will offer the info.

Unfortunately, some doctors don't offer more info, unless you ask....but you have to ask.....

my point is.....usually, the patient asks the doctor, rather than tells him, what needs to/can be done.

Good luck.....

and yes, you can certainly get a second opinion from another GI doc and/or Colorectal surgeon
Save yourselves.....do something crazy! download videochat from camfrog.com
my id is: natglad1 i'll see you in cyberspace..also find me on myspace.com/nathanael_glad aka Ned Flanders
****oh, yeah....my illness/symptoms/progression....ummm...it sucks....let's just say I put the "Bag" in "GladBag" ok! / diagnosed at age 15, i have made it to 30 now (yeehaw), temp. ileostomy 4/20/07 due to multiple, persistent fistulas of the worst imaginable variety....any fistula sucks if you ask me..but now that I had surgery....I am loving live..for the most part..if I could only find a new girlfriend


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 7/26/2007 1:59 PM (GMT -7)   
Indersonu,

Indersonu, my hubby is a lawyer ....LOL. Too bad he knows nothing about medical malpractice. He is an assitant state attorney.

Glad Bag, I have been begging my GI specialist for 9 months to help me and he has only offered me medications. When I go to him on Wednesday, I would like to say to him.."How do you feel about a _________________ (colostomy, J pouch, rectal surgery .....) My GI specialist is the gateway to a surgeon. I cannot see the surgeon without the GI's referral. When I called to see a new GI specialist, the office said that new patients would have to wait 9 months to see one specialist in the office and 8 months wait to see another specialist.

I do not want to start all over with another doctor and have to explain my whole story again in hopes that he will send me to a surgoen. It would be so much faster if I can get my GI specialist to believe me about this problem and refer me directly to the surgeon.... (Oh why does it all have to be so complicated????)

Thank you for your help...

Glad Bag
Veteran Member


Date Joined Mar 2007
Total Posts : 699
   Posted 7/26/2007 3:16 PM (GMT -7)   
I see.....still, i am pretty surprised the GI won't give you a simple referral...even if just for a consult......you can appeal to your medical group I think......how can they make someone wait 9 months? just drive to the friggin office and sit in the waiting room until they see you, pay cash for the consult if you have to....they are usually only around $160 a visit, i think for most surgeons and gi's that is....pricey yes, but worth it for your life?

i know, it is pretty frustrating though.....

as for what to ask about, i think you have all the names of the surgeries you want to know about...

i still can't figure out why you had the surgery to begin with, Crohn's, Colitis, Cancer?

and as for being personal.....open up, I sure do, and it helps tremendously.....as well as helping the others here relate to you better......try talking to someone face to face about a fistula! here it is much easier.....

after all, you can remain anonymous here if you like, so if anyone is judging you, who cares about them anyway.....

good luck.............
Save yourselves.....do something crazy! download videochat from camfrog.com
my id is: natglad1 i'll see you in cyberspace..also find me on myspace.com/nathanael_glad aka Ned Flanders
****oh, yeah....my illness/symptoms/progression....ummm...it sucks....let's just say I put the "Bag" in "GladBag" ok! / diagnosed at age 15, i have made it to 30 now (yeehaw), temp. ileostomy 4/20/07 due to multiple, persistent fistulas of the worst imaginable variety....any fistula sucks if you ask me..but now that I had surgery....I am loving live..for the most part..if I could only find a new girlfriend


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 7/27/2007 9:39 AM (GMT -7)   
Glad Bag,

I have offered to pay cash for a GI consult. It would be between $175-$250. Personally, the money means nothing to me compared to my health; however, the office said the wait time to see the doctor would be the same because I am a "new patient." As far as why I had the surgery, I was told that I had a lazy intestines and I would go 12 days without having a BM. When ever I would eat, I would vomit. So, now since my colectomy, I can feel things moving through my intestines (yippie), but I can feel them back up at my rectum. In 2001, I went to my surgeon 9 days after my surgery and told me about this rectal pressure and constipation. He told me that I was impatient and I needed to heal more. However, 3 weeks after surgery, I still could not go and my life has been this way ever since....

Thank you for your kind words and for your suggestions.. It means a lot to me that you are willing to post these messages on my behalf.

mortisha
New Member


Date Joined Jun 2007
Total Posts : 11
   Posted 7/29/2007 5:33 PM (GMT -7)   
Hi Amey, I am confused as to why you had such radical surgery just because your bowel was lazy.  I'm also confused as to exactly what surgery you had done. If you had a total colectomy that must mean that your small bowel is connected to your rectum and then you would have diahhrea-like stools. I had a total colectomy and removal of rectum/anus 30 plus years ago and have had an ileostomy since then.  I've never had anything other than baby-food consistancy stool.  The colon is what reabsorbes water and if your colon is gone how come you're not just having diahhrea? How come your rectum/anus isn't functioning?  I'd have a lot of questions and if you have to threaten legal action to get them do it. If I was you I'd really be after the GI doc as to what exactly they did and what is your realistic expectation from this surgery.   
 
 

Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 7/31/2007 12:38 PM (GMT -7)   
Mortisha,
Here is a little synopsis of my history, I hope this answers your questions.

In 2001 I was told that I had a "lazy" intestines with no motility. A Total Colectomy was preformed in which case my large intestines were removed, except for my sigmoid, and my sigmoid was connected to my rectum. Immediately after surgery, I went back to the surgeon because I did not have bowel movements. Periodically I would vomit; I developed painful rectal fissures, and constipation. I insisted that something was still wrong and again, none of the doctors where able to help me. They recommend a liquid laxative similar to Latulose called Sorbitol solution which I have been using ever since.

For the next five years, I sought many physicians and specialist seeking help, most concluded that I was anorexic and had an eating disorder because I could not eat solid foods.

Finally, in September 2005, I was rushed to Brandon Region Hospital with small bowel obstruction. The attending surgeon noticed my anastomosis was extremely narrow. In fact it was too narrow for any stools to pass through and move into my rectum. This explained why I could not eat solid foods. The surgeon did not fix the narrowing instead he sent me to another surgeon.

In June 2006, I underwent a "revised colectomy" where the surgeon widened the anastomosis and cut away some scar tissue.

Since this surgery, I continued to struggle to have regular bowel movements without laxative assistance. The laxatives are so depleating that I keep ending up in the hospital because my eletrolyes are too low. Further, it causes dehydration which has lead to kidney failure and heart failure.
When I do not take Sorbitol, my stools will not come through my rectum. I can feel them and the pressure is so instense that my body will shake and quiver, but nothing comes out. When I do get something to pass, it is soft and mushy. For some reason, even soft and mushy stools cannot pass through my rectum.

Arundinaria
Regular Member


Date Joined Apr 2007
Total Posts : 160
   Posted 7/31/2007 1:56 PM (GMT -7)   
This sounds to me like you have a severe blockage. Personally I doubt if any medications are going to solve the problems. It sounds more like necessary surgery to me. However, I am not a medical practioneer. I am simply a poor nerd who had a complete blockage and your symptoms sound like mine. I wish you well.
Arundinaria
When there are no more choices, tha decision is easy!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 8/1/2007 10:20 AM (GMT -7)   
Arudinaria,
I appreciate you saying this to me. I have been telling my doctors that I feel like I have blockage but they say that I am fine. (Note, that no x-rays or tests have been done to rule out blockage) There opinion is based completely on looking at me and saying "Oh Amey, you're fine, go home." I always leave the office in tears. I am going back to you GI specialist today and I am going to BEG for a surgery consult referral. My surgeon is wonderful but he will only take patients who have a referral from a GI specialist stating that surgery is needed. I believe that I need another surgery.

Again, thank you for your comments.

Amey

colon gone crazy
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/18/2008 1:15 AM (GMT -7)   
i have seen a gi and had 2 failed colonoscopies then he ha me swallow a capsule with 24 sitz markers after 5 days they took an xray and 24 were still in my colon i have seen a colon surgeon and she wanted 1 more test called a defogram, it was awful.the dr that did the test said he idnt think the muscle was not functioning i have slow transit colon and laxative dependent since teenager but i am 43 and the minute i eat something after taking 1/2 bottle of milk of mag i run to the bathroom. did the surgeon have me do this last test to see if she had to give me a bag meaning she sent me for this test to know if she could do a colon resection but if muscle doesnt work does it mean i have to have it all removed

colon gone crazy
New Member


Date Joined Oct 2008
Total Posts : 5
   Posted 10/18/2008 1:28 AM (GMT -7)   
could someone answer me why did my surgeon have me do this test surgery is inevitable but what kind she said on my 1st visit with my surgeon she said she is cutting me vertically and my belly button ring will be gone someone please answer me

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 10/18/2008 9:03 AM (GMT -7)   
This is a question for your surgeon. Unfortunately, we can't read her mind. I would suggest you contact her and ask her exactly what type of surgery she thinks you will need.

Good luck.
I have had an ileostomy for 32 years now due to UC.
 
Moderator of the Ostomy Forum
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


Ohio43
Regular Member


Date Joined Aug 2007
Total Posts : 212
   Posted 10/24/2008 8:50 PM (GMT -7)   
Amy, I would look for a colorectal surgeon other than the one that needs a referral. Also, if you still have your small intestines, why don't you look into an ileostomy? You could have your rectum closed up. Just a thought. I certainly didn't need to go to a GI Specialist before seeing a colorectal surgeon. What type of insurance do you have?

Ohio43

mom9mom
Regular Member


Date Joined Sep 2008
Total Posts : 489
   Posted 10/27/2008 12:28 AM (GMT -7)   
I am so sorry that you are having so much truble.Mortisha is right thereis something wrong. I had 1/2 of my small intestin removed at the end of Jan. had a bag tell June Then had that reverst and in all this time I have never had anything but diearea.Once in a great while I will have a stool that is a little more formed but it still is very very soft.Most of the time thay are just strait water no matter what I eat.Can you find a new DR. The one you go to dosnt seem to want to leason to you.This is your life Make him leason to you or find one that will.Good luck and I will pray for you.
Lost half of my small intestine, Nerve damage to right leg,part of my right hip bone removed,hernia,infection in my back called discites,and depression

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