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life after a colectomy

I RECENTLY HAD A SUB -TOTAL COLECTOMY.  I AM LOST AS FAR AS WHAT I SHOULD EAT AND DRINK , EXERCISE AND HOW TO MAINTAIN MY HEALTH.  I DID NOT HAVE CANCER, MY COLON JUST SHUT DOWN AND STOPPED WORKING.  SO I WAS ALWAYS TOTALLY IMPACTED.  MAYO CLINIC DECIDED AFTER MANY TESTS AND SPECIALISTS ADVISE,  THE ONLY OPTION WAS TO REMOVE MYCOLON. I HAVE AROUND 1 FOOT LEFT THAT WAS CONNECTED TO THE RECTUM.  IF YOU KNOW OF A BOOK OR HAVE ANY ADVISE I WOULD TRULY APPRECIATE IT.
THANK YOU


This discussion is related to Life after a total colectomy....
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611067 tn?1458591483
I have a friend who had her colon removed over 20 years ago.  She eats most foods, but is very careful.  She also makes sure to supplement so she stays healthy.  There are books out there you could buy at a health food store that talk about healing with whole foods.  I drink chlorophyl to help with chronic pancreatitis and it has made a HUGE difference.  I hear that works for everyone!

In the meantime, good luck to you!!!  

P.S. See if you can find a nutritionist that specializes in cases like yours.
Helpful - 0
Avatar universal

Hi - may I refer you to a posting I placed on Medhelp in response to another patient following a total colectomy.

Please log on to:-

http://www.mwdhelp.org/posts/show/523166

Pleasae come back if you need any further info

regards
Morecambe
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Avatar universal
I am  anticipating having a total colectomy and Ileoanal anastomosis because of chronic constipation.
extensive testing has shown that I have slow tranit time in my colon.  Constipation has been a problem for me since infancy.  Laxatives do not seem to work much of the time.  Some respite has occasionally come from getting a high colonic irrigation.

My  question is:  What will life be like for me if I get this procedure?  What are the worst case scenerios for poor results or long term complications from it.  Is the ileal pouch to serve as a substitute rectum a good idea.
I would like to experience commentary from as many people as possible who have had such surgery and read studies of how people fare in long term follow up.

I worry that I could be crippled by long tern consequences of the operation and might wish I had never gone througy with it.
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Avatar universal
I had a total colectomy in August 2007 for chronic constipation, slow transit, and colonic inertia.  This surgery has been the hardest thing that I've ever gone thru, but it's been worth every minute of it.  My surgeon wanted to do my surgery laproscopically, but it ended up being open surgery and I felt like a truck ran over me when I woke up.

I am able to go to the bathroom now and not be constipated.  Before surgery, laxatives would not work for me and I ended up quite a few times impacted in the emergency room.  I was incontinent the first couple of months after surgery and wore diapers, but now only have a bowel movement once a day and am quite normal.

I was overweight before surgery and have lost 85 pounds since surgery.  Most of the weight loss is because I exercise now.  My surgeon told me that I'll need to walk and have some type of exercise for the rest of my life, or my motility disorder would come back again.  

Also, they said that the more you have to chew something, the harder it will be for you to digest and after this surgery, you have to chew your food carefully or you could get a blockage which means additional surgery.  I've given up red meats and eat chicken, turkey, and fish.  I don't eat any fried foods or lots of butter, because it gives me the diahrea.  Spices bother me now, too.  Since surgery, my stomach is more tempermental and sometimes it will gurgle for hours before it calms down.

I've got one side effect after this surgery that has been really hard to deal with.  No matter what I eat or do, sometimes, I am really gassy and nothing will stop it.  My surgeon says that it'll never go away and it's just one of the things that some of us have to live with after this surgery.  However, between gas and a bag, I'll take the gassiness for now and be thankful.
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Avatar universal
Just wanted to add my thoughts and to try and reassure people.
I had a total colectomy because of megacolon. it was back in 1988 and I was one of the very first to have the op where they attach the small intestine straight to the rectum (no bag needed).
I was in hospital for two weeks, then at home sore for a month or so, but only sore cos of the big slice down my tummy. Once that healed, I had no problems. And I've had no problems ever since (21 years now - I'm 45). I eat what I want, when I want (whereas before the op I couldn't do fried or fatty food etc - got terrible pain in stomach).
I can honestly say that apart from having to poo two or three times a day (and it has never been solid - sorry to be graphic) it has had no bad effects on me at all - in fact it completely changed my life for the better. So although I'm sure some people have a hard time afterwards, it is not always so - and i was one of the early guinea pigs!
Helpful - 0
1704915 tn?1357601254
How was the experience in the hospital with the BM's and when you first were home? Did you have any control of your BM's or was it something you had no control over at all?? How long did it take before you were able to go to work and be able to do normal things again?
Helpful - 0
1704915 tn?1357601254
Has anyone had there large intestine removed and had their small intestine attached to their rectum for colonic inertia and ended up with constipation after surgery? I heard that is a risk factor. That you can get the surgery but there might be a chance you will have constipation again one day. Also has anyone had their large intestine removed for colonic inertia and then their small intestine eventually give out on them? What happened then
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Avatar universal
wow can I email u? my grand son had the same surgey my email is ***@**** please i want to talk to u thanks
Helpful - 0
1704915 tn?1357601254
So had a special doctor visit after hours with some of the staff (gi specialist and colon surgeon) at a hospital I have been having all these tests done at. They talked to me about all the results and all that I have told them and they feel I have 2 issues going on

1.) Colonic inertia = constipation/slow transit
2.) SIBO/IBS

they told me that the only way to be sure if the large intestine is working is to do a temporary jpouch for about 4 - 6 weeks. Test the waters and see if I feel better without use of the large intestine. If I do then we know the large intestine is to blame and they can remove it. They told me that they would remove the jpouch and the large intestine and then connect my small intestine to my rectum.

Did anyone else go through this before having their large intestine removed. It means 2 surgeries for me.
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1704915 tn?1357601254
I worded that wrong.. its a temporary ileostomy
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Avatar universal
In the past , ( 1994 ) I'd began to experience problems with what I believed to have been constipation . I Went the whole routine  medical doctors , stool softeners, bulk laxatives , ( the bulk seemed to have made the condition WORSE and later associated  that with the wheat allergy).
       Ultimately , found Gastro MD ,who ordered in depth testing to find the colon was clamped off in many areas
resembling a link sausage and had stopped functioning, however , the rectal muscle was fully functional and weeks
later , a sub total colectomy with a bowel resection was done resulting in no pathological reason for the  dysfunction.
         I had to learn a new physical sense of awareness of when my bowels had to move , had to introduce small portions of bland , balanced meals into the bowels initially ,until my system began to adjust. (I spent 3 weeks in the
hospital ) . After discharge was readmitted  with dehydration.That surgery  was in 1997.In  2002 ,I was diagnosed with Celiac disease, around 2005 Lupus and Pernicious Anemia. I was told all of the above are related to The (Celiac ) ,wheat allergy. In my research I have learned  much about DNA Markers and have come to understand , through my personal research, the role celiac disease plays in each separate disease. I hope my journey has be a help, there have been side effects of each process and a need for close medical supervision. But I urge you Be Informed !!!!!
Helpful - 0
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