Total Colectomy Part 11

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Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 4/24/2006 5:15 PM (GMT -7)   
Hi everyone,
We got locked out of the last thread, so I figured I'd do the deed and start the next one.
 
Zoe- I hope that you're dilation goes well.  Whenever I get diarrhea, the stool is real thin (pencil thin) and I always freak out thinking that I might have scar tissue at the anastamosis site, but then the diarrhea goes away and my heart rate goes back to normal.  I am sooo done with doctors, it's not even funny.  I can't even bring myself to go for my post surgical check up with my PCP.  My veins will never be the same.
 
I hope everyone is doing well.  It's been a little quiet here lately. mad
My best to everyone.
 
Cathy

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 4/24/2006 6:13 PM (GMT -7)   

Hi Everyone

Although I haven't posted recently, I have stayed current with all the postings..Hope everyone is doing well.

I am currently at the Cleveland Clinic and have a meeting with the colorectal surgeon...I sincerely hope that he will help me.....My home town GI doctor was not too agreeable for the surgical option...nothing works now except multiple enemas...he is talking about biofeedback but it is beyond me how that would help..well tomorrow is all that counts

Good night..take care

Phyllis

 

 


Somer
Regular Member


Date Joined Mar 2005
Total Posts : 104
   Posted 4/25/2006 8:21 AM (GMT -7)   
On the rare occasion that I have diarrhea, mine too is very skinny.  Must be normal for us huh?!
 
Cathy, I feel the same as you.  Up until that little problem with GERD, I did not want to see the inside of a doctor's office, unless I was working! 
 
Phyllis, I know it's frustrating, but it really is worth all of the time doing the tests to really make sure.
 
~Somer

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 4/25/2006 10:36 AM (GMT -7)   
Somer,
I'm finding that I have more reflux since surgery. As if there is less storage space or something. Ice cream gets me the worst. So far, Tums works pretty good though.

Phyllis,
I hope everything goes well today. Let us know. We'll be thinking about you.

Cathy

sashayac
Regular Member


Date Joined Dec 2005
Total Posts : 47
   Posted 4/25/2006 1:38 PM (GMT -7)   
Hey All,
I went to the doctor yesterday, he said everything looked good. I have finally healed. I am so thankful for that.

Somer, Kathy- My mom recomended Bitter's compound. She said it help with your reflux. I think you can get it from a health food store. I tried it several times before. I really don't need it now.

Phyllis- Hope everything goes well with you. Let us know when your procedure is.

Blessings to you all,
Sasha

rbowden
New Member


Date Joined Jan 2006
Total Posts : 12
   Posted 4/25/2006 4:45 PM (GMT -7)   
hi my name is robin and i have posted one time before and someone told me that they did not think that i was a good candidate for surgery. I have been really sick, really sick. and i look like i am about 9 months pregnant. but anyway i am going in for surgery on May the 24th. he is going to take out the whole colon. I have been verry sick for so many years and i am so looking forward to being able to get my life back. i have read alot of good info from some of the pages on here. i have seen so many doctors and finally have found my help. but just wanted to talk. he is going to try to do it laproscopic. i am very excited to be able to get my life back. i am so tired of being sick, i do not care about the scars or anything. i am just tired.
and just think i may be home from the hosp for my 2 year anniversary with my husband. i have been sick the whole time i have been married. if anyone has any good info about the abdominal swelling please let me know. i am so tired of looking pregnant.

Cathy W
Regular Member


Date Joined Aug 2005
Total Posts : 218
   Posted 4/25/2006 6:03 PM (GMT -7)   
Robin-
Welcome back. I'm glad that you finally have a date for your surgery. It's like a light at the end of a very long tunnel. Abdominal swelling happens for a number of different reasons. First, constipation. Secondly, poor digestion. Inflammation occurs when we are unable to breakdown the food that we eat into easily absorbable components. The chronic constipation creates a toxic environment and that gives off a lot of gas. Well, you get the point. One thing leads to another which leads to another... it's like which came first the chicken or the egg?

I have to admit that I haven't felt swollen since my surgery, I eat what ever I want and I go 2-3 times a day. I don't feel toxic anymore.

We'd be glad to help you, you'll have lots of questions between now and then. Believe me that unless you've been through this, you can't know how it feels. So, talking to your friends and family is usually fruitless. They just don't understand.

This is the first step to recovery!

Cathy

rbowden
New Member


Date Joined Jan 2006
Total Posts : 12
   Posted 4/25/2006 7:12 PM (GMT -7)   
Thank you so much. I am so gald that there is finally light at the tunnel. i did not think i was going to see that light. i do have tons of questions and thoughts. and you are right unless you have been through it you have no clue what it feels like. this site is a god send in so many ways.

Emmaleigh
Regular Member


Date Joined Jun 2005
Total Posts : 183
   Posted 4/26/2006 8:00 AM (GMT -7)   

Amen about the statement that your friends and family dont understand!  I work with a bunch of nurses and even they did not always understand the reasons or purpose of things.  Now in graduate school, I still have people who dont get it... and I will often forget that everyone doesnt know and make some comment about my mini colon... lol and people look at me funny!

Funny, on the rare occasion that I have diarrhea mine is pencil thin too!  No GERD for me, but ice cream in large amounts is just NOT a good thing (cramping, excessive output) but in small amount (like a weight watcher dessert or something like that) I dont have any problems!

Only 2 weeks of school left.  I just got sent home from clinical because I have a 101.4 fever and my doctor that I was working with thinks I have the starts of a pnemonia!

Hugs,

Emma


sashayac
Regular Member


Date Joined Dec 2005
Total Posts : 47
   Posted 4/26/2006 9:48 AM (GMT -7)   
Emma- I am sorry you are so sick. I hope you feel better soon. How are you otherwise? I am much better. I have been having a little stomach upset but nothing I can't handle.

Robin- I was one of those people that looked not only pregnant, but real fat all over. I have lost about 25 pounds since both my surgeries. I know how you feel. The surgery was one of the best things I could of done for myself. I love being able to go to the bathroom not 1 time but 3 to 4 times a day. You said your doctor is taking out all of your colon, right? Are you going to have a bag? I had 5 1/2 feet of my colon taken out. He said I wouldn't need a colonoscopy until I turn 50 yeah. I am only 33 years old. I will be 34 at the end of May. But I totally know how you must be feeling. I hope everything goes well with you. yeah

Cathy, Somer, everyone else- Hey I hope you all are doing fine.

Blessings,
Sasha

tweety110968
Regular Member


Date Joined Mar 2006
Total Posts : 25
   Posted 4/26/2006 10:23 AM (GMT -7)   

hello everyone,

Thank you so much for all the concern.  I really appreciate all the help and understanding you guys have given me.  I am doing pretty well , I am 2 weeks out and things are going pretty good , the diarrhea finally slowed down.  I only go about 3 -4 times a day depending on what I eat.  I have noticed some formed stools though the doctor has me taking a stool softner once a day.  I did not have an NG tube at all . My veins did give out on the fourth day and they had to put in a picc line though.  I am having some swelling around the incision still but its only been 2 weeks.   And I also have some pain there , not much I really havent taken many pain pills since I came home.  I am up and walking still resting alot though , no lifting yet, get to start driving this week.   I think things are going pretty good.  If there are any other suggestions please let me know.   I did have to have an open procedure, it goes from my belly button to my bikini line.  Not bad.  Like I said not much pain.  The pain before the surgery was a whole lot worse. 

 

Tweety :-)


Nonna
Regular Member


Date Joined Jan 2006
Total Posts : 23
   Posted 4/26/2006 5:29 PM (GMT -7)   

Hi everyone.  I too am glad I had the surgery.  Life is wonderful and GOD is good.  I had mine on 31 Jan 06 and this is my second week back to work.  I was really tired last week, but this week is better.  I just feel so much better and everyone is telling me how I have a sparkle in my eyes and my skin looks so good.  It is the best thing I ever had done.  I am going to the bathroom about three times a day.  I suffer from anxiety and have a stressful job, so when I need to go at work, I get a little nervous and have to concentrate and that bothers me, it is like I am afraid I am going to mess something up, you know?  But at home and on weekends, I am relaxed and I am in and out of the bathroom quickly.  When I do have diarrhea mine is thin also - must be a thing with us now. 

My daughter is 27 and she visited the same surgeon that I used, she has seen him in the past and she has loops in her colon.  She is doing the sitz market test next week and depending on the results he told her she was probably looking at surgery.  She has been on all the medications that we have all been on.  I wished I had had it done 10 years ago.  She is miserable, don't we all know about that.

I have lost 20 lbs and I feel great, hoping I don't gain it back.  I was so bloated and that does not happen anymore.  When I eat, I get full, but not bloated and before I could just eat a small amount and BLOAT.

Those of you that are like a year out on your surgery, do you bloat?  What about constipation, please tell me that won't happen anymore? 

God bless,

Nonna

 

 


Somer
Regular Member


Date Joined Mar 2005
Total Posts : 104
   Posted 4/27/2006 12:25 PM (GMT -7)   

Nonna,

I had my surgery February 2005, a couple of months over 1 year ago.  I do not have ANY bloating.  I'm with you, I wish someone had offered the surgery to me 10 years ago.  Never felt better!!

Tweety,

I'm so glad you are feeling ok.  Rest is important to your recovery.  I remember I was excited when I was able to finally drive.  I didn't care where I drove, I just wanted to go!

~Somer



Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 4/28/2006 10:48 AM (GMT -7)   

Hi Everyone,

This is a report on how my visit to the Cleveland Clinic was.  I saw Dr Geisler, although he was running 2 hours behind schedule he took and hour with myself and my husband and explained the risks, benefits and what I was going to go through.  Prior to speaking to me, he reviewed reports and x-rays and when he came in he went right to the surgery...no convincing him that there was a problem or anything....what a relief that he believed me...

I am having surgery on 6/19.  It will be laparascopic with 4 holes and one will be larger than the other and he will be using the previous bikini cut a had from gyn surgeries to pull the intestines through.  I will be having total colectomy with ileo-rectal anastomosis.  I asked about a partial colectomy since my problem is on the (L) and he was not in favor of that due to anatomical restraints.  He has a 98% success rate.  5% of his cases have to be converted to open usually due to previous surgeries.  there is about a 2% chance that a may have to have a temporary ileostomy.  If I have surgery early, I will be walking that evening (sounds unbelievable).  If lap I will be in hsp for 3-5 days if open 5-7 days.  No NG tube unless problem develops.

Prior to surgery. I will have to have a defacography just to make sure there are no additional problems...He said no point doing the surgery if it won't be fully successful due to a secondary proble.  I will have a 2 day full liquid diet prior to surgery and the day befor op I will have to take the whole bottle of miralax in 2 liters of fluid over a period of time and 4 ducalax pills.....

It was well worth the travel from New York to the Cleveland Clinic....

 

Phyllis

 

 

 


rbowden
New Member


Date Joined Jan 2006
Total Posts : 12
   Posted 4/28/2006 10:55 AM (GMT -7)   
i am in so much pain it is not even funny. I cannot sleep or anything. they do not want to give me anything because my colon might perforate, is what they told me. the surgon told me that i should not have to have a bag unless there is complications and still it could be reversed. he said that my rectum still works. it all depends on what happens when he gets in there. and all my swelling is in my tummy. i look pregnant. i have not gained any anywhere except my tummy area and it is hard and tight just like a pregnant lady. i had a lump come up and the surgon told me to take it easy till the surgery, he said that my colon is pushing out onn the abdominal wall. i wish that he would go ahead and do it.

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 4/29/2006 11:33 AM (GMT -7)   

Hi R

Isn't it possible for the doctor to make your surgical date sooner?


rbowden
New Member


Date Joined Jan 2006
Total Posts : 12
   Posted 4/29/2006 3:06 PM (GMT -7)   
i wish they could. i am sooo miserable. i am supposed to see the surgon again on the may 11, and i am going to say something to him. I have talked to him and my gastro by phone and they did not say anything about moving but i did not either, i just feel that i am so lucky to be able to have the surgery. i have also got this lump on my left side (which is the side that i have all my pain) beside the norm abdominal swelling, the doc told me that my colon was pressing on the abdominal wall. my surgon does not have a swell beside manner and it is like pulling teeth to get anything done. there is only two colon rectal surgons in my area and they say he is supposed to be the best. I will let you know on that in about 3 month lol.

mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 4/29/2006 5:00 PM (GMT -7)   
Hi everyone, just a quick note  because I need to go lay down.  I just got home today and everything went very well.  I actually pooped the 2nd day.   I will write more later, but the oxycodone is making me kind of fuzzy.  I'm just glad its over and glad I had it done.  more later!

rbowden
New Member


Date Joined Jan 2006
Total Posts : 12
   Posted 4/30/2006 4:43 AM (GMT -7)   
mom23 i am excited to hear how all went, i am scheduled for may 24 and if you can tell me your experience i would greatly appreciate it. did they take your whole colon? how long was you in the hosp? tell me all that is is you feel like it. glad your home!

Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 4/30/2006 7:23 PM (GMT -7)   

tongue  Hi! Mom23

Darn glad to see you recoverly at home.  I hope you are feeling better with the exception of  little pain and plus actually having BMs with the assistance of laxative, enema, etc.  Did you have a sub total colostomy through the laproscopic method or open method?  Did you end up with a temporary bag (ileostomy).  Or did you just get automatically connect from you small intestine to your rectum?  So glad you are home. Home is the best place to recovery from such an extensive surgery.

Please reply when you are feeling better.

Take care and get plenty of rest!

Angel


mel38
New Member


Date Joined Apr 2006
Total Posts : 13
   Posted 4/30/2006 9:07 PM (GMT -7)   
I had a total colectomy 2.5 weeks ago after years of problems. Today was the first time to not be in the bathroom 15 times or so. I have only lost about 5 pounds.....how long does it take to lose weight after this surgery? Any suggestions on food to avoid?
Thanks!
Mel

mom23
Regular Member


Date Joined Mar 2006
Total Posts : 82
   Posted 5/1/2006 10:59 AM (GMT -7)   
Hi everyone, I cant believe its only been one week today.  They sure got me out of the hospital quickly (sat).   Overall I feel pretty good but I am having some mild upper stomach pains which my Dr. said was because they were up in there moving so many things around that my body is just going to take some time to adjust.  I am trying already to get off the oxycodone...I dont know if its the medicine withdrawl or what , but I do feel pretty weepy today.  My oldest son is   graduating college and it just really hit me that he wont "live here again" .   Anyways, emotionally i'm a mess, but the surgery went well.  open surgery, no bag, very simple he said, NG tube for less than 24 hours, which I didnt even know was there!.  I do not have  diarreah all the time, and I go maybe 3-4 times a day.  I dont have much of an appetite either though.
    Phyllis, are you having the surgery because of colonic inertia?  RBOWDEN,   if I were you I would get my self into the emergency room and demand to be admitted .  This just doesnt sound right at all.  Stay there until they get you a 2nd opinion from another GI on call.  Try not to read too many negative things on the internet also.  It can make you crazy.
     I'll be back later!
   
 

Phyllis B
Regular Member


Date Joined Feb 2006
Total Posts : 196
   Posted 5/1/2006 12:05 PM (GMT -7)   

Hi Mom23

Boy am I glad you are doing so good....

Yes, I am having the surgery due to colonic inertia...Sitz marker showed all the rings still in the colon after 5 days....They have tried all the medicines and the only way I can move my bowels is by multiple enemas (5-15) and I have to do this daily or instead of looking 6 months pregnant I'll be 12 months pregnant...you get the drift...Anyway, can't wait til it's over...

the opnly thing that concerns me is the ride from Cleveland to New York....-


mel38
New Member


Date Joined Apr 2006
Total Posts : 13
   Posted 5/1/2006 6:28 PM (GMT -7)   

Hi....I am new to this site and looking for knowledge. Had a total colectomy almost 3 weeks ago. In the bathroom alot. What foods should I avoid? Have only lost 6 lbs. was hoping weightloss would be the siver lining.....anyone have info on how much and how long weightloss takes?

Mel


Angel Baby
Regular Member


Date Joined Mar 2006
Total Posts : 50
   Posted 5/1/2006 6:36 PM (GMT -7)   
Welcome Back! Mom23

I am very glad that you are doing fine with the exception of a little stomach pain. Your insides definitely need time to heal properly. Did you doctor tell you not to lift anything over 10 pounds, no house cleaning, working, etc? Just to get plenty of rest and relaxation for at least six weeks. Did you doctor put you on a restrictive diet until he see you at the post-operative appointment? Mine did and then I was told to eat anything and everything in small portions like six to eight times a day so that you don't get a blockage. Take things slow, you were very lucky not to experience the ileostomy. Nice to have you back. Get plenty of rest, your body will tell you what you can do and what you cannot do. Sleep is the best medicine in the beginning that way you cannot do to much and that you won't damage anything internally.
Good Night!
Angel
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