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TOTAL COLECTOMY PART 18

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Posted 12/15/2007 10:26 AM (GMT 0)
I have a question concerning a friend of mine.  She has been told by her doc to take two Senekot everyday as she was on Fibercon before she was diagnosed with gastroparesis (slow emptying of the stomach--fiber is hard to digest).  The good news is, she goes everyday...but she will be taking Senekot for the rest of her life.  She has been on this regimen for a year now.  Does anyone know if this is recommended/safe?  She is a nurse herself and doesn't see a problem with it...mainly b/c she is getting relief everyday and that is really all she is concerned about at this point.  But I am concerned for her down the road...is this something that could cause kidney/liver problems?
Posted 12/16/2007 10:57 PM (GMT 0)
Robin

Well, let's see. The first thing he did was ask if the balloon job helped. I told him that I've now from from a pinkie to a thumb, but that I'm still having problems. So he told me to try each of the following for ten days before switching to the next: Lactulose, Miralax, and Amitiza. None of these worked before surgery, so we were hoping that maybe they'll help now. He said if none of these work that a visit to UCSF (University California San Francisco) Motility Clinic would be next.

First up was Lactulose. Believe it or not, it worked! I go to bingo every Saturday with one of my friends, so of course it decided to kick in while I was there. LOL  I kept asking her to watch my cards so I could go; plus during the games nobody else is in the bathroom. teehee  I'm still having issues with Mr. Hemorrhoid. He likes to 'hang' around and won't go away.

I also had an appt in the Bay Area on Friday with a surgeon regarding my thyroid. The second biopsy wasn't definitive either way; cancer or no cancer. He said that it's definitely not two types of thyroid cancer (worse outcome) but that it could be either papillary or follicular thyroid cancer. There are basically four types. So the plan on that is that we're going to wait for three months and do another thyroid sonogram. If it's still there, we'll do another needle biopsy to see what that shows. If it again shows what this one did, then it will be coming out. I'm comfortable waiting since thyroid cancer is slow growing and easily cured.

Posted 12/18/2007 2:50 PM (GMT 0)
MOM2SOPHIA - I'm sorry that I'm not able to help concerning your friend.  However, I don't see a problem with taking a stool softener daily but I may be wrong.  I'm taking MiraLAX daily under the advise of my doctor due to some issues that arrived after the TC. 

There are so many people that "MUST" take medications daily - prescription or OTC - for numerous reasons, me being one of them.  I've been taking "strong" medications for manic depression, OCD, and anxiety for 15 years and the benefits of these medications outweigh the risks involved in taking these medications.

TERRI - You always make me smile :-) :-) !!!  Glad to hear the Lactulose is working for you (sorry it had to be in the middle of your BINGO though)!!!  Sorry to hear the tests on the thyroid wasn't difinitive.  Hopefully when you go back in three months all will be OK!!  Maybe, just maybe, Mr. Hemorrhoid will get tired of "hanging" around and decide to go back where he came from!!!

Hope everyone else is doing good!!

Posted 12/18/2007 8:54 PM (GMT 0)
Hello Everyone

I'm glad to hear alot of you are doing well.  I'm still the same.  Some days I don't go

to much, then the next I'm on the toliet all day.

Still looking for a job, I might have found a job, it is full time and I have not worked

in over a year. And with the problems I've been having I'm not sure I can do it.

I would hate to take a job and be in the bathroom all the time and farting up a

storm with that odor.

Any ideas?

Or just to say hello?

Miss chatting..............

Posted 12/19/2007 3:20 PM (GMT 0)
So is farting with an odor pretty common after this surgery?  Why is that?
Posted 12/20/2007 5:53 PM (GMT 0)
Hi Everyone,

Terri - glad they found a med that can help you go. I hope the next test they do on your thyroid shows more clearly what the problem is. Hemmoroids, I know how they are. I had them for a long time, but since the TC they have cleared up pretty much.

Mom - I have heard smelly farts and foul smelling poo happens from the food you eat.

April - do you check the foods you are eating to see which run through fast and which ones run through at a more slower pace. I know with me some foods cause me to go more often and loose/watery while others my poo is more formed and not so many trips to the bathroom.

One thing I have noticed since my TC - before surgery my intestines were so quiet never made a sound. Now my small intestine is talking up a storm. Girgle, Girgle all the time. I'm still thinking of seeing a new GI doctor just to check things out. If he notices anything that calls for my surgeon's attention then I will go see my surgeon.

I have lost another 7 lbs. Now I am 10-12 lbs from my goal. Total weight loss so far is 55.

I hope everyone is doing good this day. If I do not get on again before Christmas I hope everyone has a joyful and blessed one.
Posted 12/24/2007 1:56 PM (GMT 0)

Resa,

That's great you have lost so much weight.  You go girl.....I am doing weight watchers and so far have lost 30 but need to lose about 40 more.  One ounce at a time.....

Happy Holidays to everyone

Phyllis

Posted 12/26/2007 1:58 AM (GMT 0)
MERRY CHRISTMAS to ALL of you!!!! - I hope ALL are doing well!!!  Hope each one of you have had many blessings come your way!!!

 

RESA and PHYLLIS - Congratulations on your weight loss!!  I've actually regained ALL of the 30 pounds I lost post-op sad sad sad sad !!  I guess my New Year resolution will be to incorporate better eating habits and start a consistant exercise program.  I have ALL the equipment I need - I just need to dust it off LOL!!!

 

Posted 12/31/2007 9:04 PM (GMT 0)
    I just wanted to wish everyone a HAPPY HEALTHY NEW YEAR!

Posted 12/31/2007 11:04 PM (GMT 0)

Hi April - How are you doing?  I hope things are going much better for you and my the new year bring you many, many blessings!!!

I would also like to wish everyone a Happy New Year!!!!

How is everyone doing?  How was your holiday? 

Posted 1/1/2008 12:10 AM (GMT 0)

Hello Robin,

Good to hear from you.  The holidays were busy as we traveled out of state to visit my husband's relatives.  It was a nice trip.  Weather cooperated most of the time too.

Did you have a good holiday?  Any plans for the New Year?  I quit making NY's resolutions years ago.

Happy, Healthy New Year to everyone!!

Posted 1/1/2008 12:24 AM (GMT 0)
Hi Peggy - Good to hear from you as well!!  I quit making resolutions years ago too LOL!!  It's nice to hear you trip was safe and the weather cooperated - can't get better than that.  I did have a nice Christmas and I'm staying in for the New Year.  I don't like being on the road because too many people drink and drive.

Posted 1/1/2008 12:41 AM (GMT 0)

Ditto for us - the NOT traveling on NY's eve thing.  DH loves FB and so he is watching FB tonight and will be watching it all day tomorrow too.   I'm not much of a fan, but the university I work at is actually in a bowl game tonight and I just saw my orthopedic dr that did my shoulder surgery last month assisting one of the fb players that was down on the field.  Huh - go figure!

Back to work for me on Wednesday - YUK!  I plan on doing NOTHING tomorrow!

Posted 1/1/2008 4:02 AM (GMT 0)
Question  has anyone tried Activa after a TC?

Posted 1/3/2008 10:12 PM (GMT 0)
Well, surgery is scheduled for March 27th.  In the meanwhile I am on 3A Magnesia and Similase...I am also starting acupuncture...anyone have any results with these methods for constipation? 

Hope everyone is doing well.

Posted 1/4/2008 4:21 AM (GMT 0)

im new to this so accidentally made it a new topic not a reply haha sorry.

I am having a colectomy. yes ofcourse they gave me the option have half of it removed or total. seems from my research. many who have partial due to slow transit constipation or obstructed have to go back and have the rest removed.

 

To give you some history I have had bowel issues since I can remember I had a nissan wrap done to correct my reflux and then somehow that didnt work so i had it done again. This time it worked but I am always nauseated.

 

on top of that I never- and I am not saying never because I really go once in a while. I never go to the bathroom. I take Miralax 4 times a day am on amithesia  2x day and misoprostol 4xday, take promethazine 4x day for nausea i have tried laxatives herbal and prescribed enemas etc etc you name it ive done it over the last several years. Nothing works.

 

I had sitz marker study after ten days they were all still in large intestine. I had small bowel study thankfully it worked fine. I defecalgram and that showed that I have a pocket so when my stools due come down they go in a pocket first then i have to strain extremly bad to get it out. I have had colostomy and had many polyps im only 31. I guess I have a twist in my sigmoid colon, and had a lot of tight spots in my transverse colon. all the markers were in my transverse and sigmoid colon they quit checking after ten days. I had a monomatry sp?? done. If they have it ive done it pretty much.

 

My doctor finally referred me to a surgeon after 11 differant medicines we have tried failed and all tests point to slow transit constipation or o.d. Met with surgeon she gave me option to do total colectomy and hook small bowel onto anus. or partial but warned many have to have total after because the partial doesnt work. Any suggestions? Im not fond of having repeated surgeries being I had two to correct reflux. sounds like diet is simmular I was on clear liquids for a few weeks, then liquids then soft foods cottage chez yogurts applesauce and soup broth. Then I could gradually increase to other foods.

 

Surgery isnt easy for anyone but I have 5 kids, all under 12 youngest is 2, so I have to make arrangements for them to go to school etc while im in hospital and help after as well. Very frustrated because I am in constant pain. I went to three doctors all suggest I increase my fiber and excersize change diet etc. Im not a total moron ofcourse ive tried that. Sometimes Im so bloated I look like I am pregnant, I get horrible nausea used to vomit a lot but since reflux surgery thats painful and difficult so more nausea and gagging now. I get very painful gas like cramps in my abdomin, and I am so totally frustrated with dealing with hospitals tests doctors and terms like may help, or lets try, or I know you are frustrated but we cant guarentee.

 

Have any of you heard wheither you gain or loose weight after colectomy. I used to be extremly overweight after having kids. I am still a little chubby maybe 15 lbs overweight. But I really dont want to end up huge again, its hard for me to loose it as obesity runs in my family. Also because I am used to just never going to the bathroom the fact I may be going 6 times a day it sounds like is crazy. Can you not go places because you have to go so much. I really am affraid of a colostomy bag. I think bathroom issues are the most embarrasing thing ever, maybe because I just never have been normal but its so gross.  anyone been through this anyone have any feedback?

 

Sorry so long I am just at the end of my rope with all of this very confussing and annoying not to mention uncomfortable and extremely painful.

 

Thanks

Angie

Posted 1/4/2008 1:44 PM (GMT 0)

Hi Angie,

Welcome to the forum.  I had a total colectomy 6/2006.  No regrets.  I went to Cleveland Clinic and the surgeon there would not perform a hemi colectomy as the majority of patients have to return to have the rest removed.  The diffuse nature of the problem, he said will eventually effect the entire colon.  This is big surgery and you must prepare yourself for it,not only physically but you must prepare emotionally.  You have to prepare your home for your return....have premade meals for the family, do a thorough house cleaning prior and have plenty of soft toilet paper on hand.

As to the surgery and post, I initially was going about 20X/24 hours...eventually, it has slowed to 8-10X.  Some people who have posted have reported going much less.  Recently, I developed proctitis and some small ulcers in the blind loop...Others report no problems at all...Everyone is different.

I did not lose any weight but have been going to weight watchers and have lost 30 lbs.

You may have to change your eating habits...with me, vegetables come out the same way they went in..but I eat them anyway.  I can eat anything I want...others are limited...

As I said, I have no regrets...I'd rather go 8X in a day then 1 time in 8 days.  It has not limited my activities, it just takes a little planning.

Good luck to you and I do recommend that you go back and read the other colectomy parts as there is a wealth of information.

Phyllis :-)

Posted 1/4/2008 2:53 PM (GMT 0)
Angie I saw you on the other boards.  I am scheduled for surgery in March.  Your story sounds exactly like mine.  I am scared just  as you are for having a bag or constant diarrhea.  Until surgery, I am trying acupuncture, probiotics, digestive enzymes and Betain HCI for my reflux. 
Posted 1/6/2008 3:04 PM (GMT 0)
Hi Everyone,

Angie - Welcome to the forum. I had my TC on 3/12/07. Like Phyllis, I was going about 20 times a day at first. Now I am at 5 to 10 depending on what I eat or drink. I did lose weight. Within two weeks after surgery I had lost 30 lbs. My surgeon said it was most likely the weight of the colon, stress to the body, and excess body fluid. Since March 2007, I have lost another 25 lbs. A total of 55 lbs. I still need to lose another 10. Everyone is different. I believe others lost weight while others did not. My surgeon also would not do a partial because people come back within the year to get the rest out. So he takes the whole colon for CI. In my case my whole colon was damaged. I love my bathroom visits and I also do not have any regrets. If you go back and read TC 1 through TC 18 you will find a wealth of information.

Mom2spophia - It is nice to hear you have your surgery date. It is natural to be scared. My surgeon said there is a 3% chance one might need a temp colostomy. In the 22 years I suffered with CI I tried every med and procedure I could think of. I tried prescriptions, OTC, herbal, colonics, massage, acupuncture, the list goes on and on. Fact is no med or procedure could or would have helped my colon get better. I read my pathology report. After surgery my chest pains disappeared, my acid reflux disappeared, and other symptoms I had have disappeared. Even my addiction to sweets has disappeared.

I hope everyone is enjoying their weekend. Where I am the weather is stormy.
Posted 1/6/2008 4:59 PM (GMT 0)
Resa--I am hoping for the same results when surgery is finished.  I just want to wake up and not deal with reflux, nausea, and constipation.  I am hoping the colon coming out fixes all that.  You mentioned that your whole colon was damaged...what do you mean by that?  I start acupuncture Tuesday...not keeping my hopes up.
Posted 1/9/2008 1:28 PM (GMT 0)

Hi Everyone,

Wondering if someone out there has had the same experience...I am bleeding and have very bad pain in lower tract with burning.  I was previously diagnosed with proctitis and ulcers in the blind loop.  I have been given retention enemas and also suppositories however I wake up with a splitting migraine...The medicine helps a bit but I can't take these headaches.  Any advise?

Phyllis

Posted 1/10/2008 12:01 PM (GMT 0)

PHYLLIS - I would go directly to the ER!!!  Let them contact your surgeon and let him/her know what is going on.

I hate that you're going thru this - my heart goes out to you!!  Back in September, in fact the 11th of September, I had dark, dark red blood (no stool) for three days.  I waited and waited and kept promising myself that I would go to the ER if it happened again (but I didn't go).  Eventually, after three days, it stopped as fast as it came on.  After that and a month later I still wasn't feeling well and then went to see the surgeon.  He ran a host of tests and came up with NOTHING and advised if it ever happens again to call his office ASAP (which I did the first time and they advised me to go to the ER if I had that much blood).

To make a long story short - I still have bouts of pain and discomfort ranging high in the abdomen then low in the abdomen.  I'm convinced that if I had gone to the ER while the bleeding was going on they would have found the source of what is causing me the pain and discomfort.

Please keep us posted!!!

Posted 1/11/2008 7:44 PM (GMT 0)
Hey guys, Sorry its been so long since I updated. Hope all your holidays were fabulous. Mine were pretty much status quo. Try and benormal....throw up....etc. I just wanted you all to know I am leaving for my trip to Mexico before surgery. I plan o consuming a liquid diet of alcohol on the beach in the sun. I am ready to get away from this Michigan snow. I come back on the 20th and prep for surgery on the 24th-28th. I have four days of clear liquids with 2 days of phospha soda and other junk. I am very nervous and that seems to be getting worse each day. Hope you all well. I will keep you all updated.
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Posted 1/11/2008 8:28 PM (GMT 0)
PHYLLIS PLEASE GET SOME MEDICAL HELP ASAP! Your post scares me. You are the anchor to this forum..we need you! Please call your Dr or get to the ER. I am going to check this forum all day...please update as soon as you get the chance.

Xtreme, becareful drinking before surgery...alcohol is very dehydrating.
Posted 1/11/2008 8:50 PM (GMT 0)

Hi Everyone

Thanks for the concern.  Spoke to GI on Thursday and he ordered suppository and the bleeding has stopped, the pain is still present.  However, can not take suppositories anymore because I get a tremendous headache from it.  Will be seeing him on Tuesday when he will probably schedule a scope.  Hopefully he will prescribe something that I don't have an adverswe effect.

Phyllis

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