Total Colectomy

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tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/5/2009 10:23 PM (GMT -6)   
Hi, i am new to this site... just looking for information on what life will be like now after having a total colectomy... i had it done last tuesday  (12/30).... the pottie running is obnoxious... and its weird i never have the urge to pee.. i have never gone into the bathroom since the surgery just to pee... is that normal??  i have heard anywhere from 3 times a day to the extreme of 15 times a day you can have diarrhea.....  right now im on the high end of that range......
 
Right now i am so swollen and bruised i expect everything to be off...... i have to see the doctor tomorrow one of the incisions opened up and is draining.. so they want to double check.. pack it up again.....
 
what will life be like down the road after having this surgery!!????   they did the surgery for colonic inertia... and i also suffer from gastroparesis = so the eatting/diet they put you on after this surgery is really a blessing for me because i was almost o n a liquid diet before the surgery anyway.. my colon had shut down so much........
 
well thanks for any info you can send my way
 
 
  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


amy476
Regular Member


Date Joined Jan 2009
Total Posts : 37
   Posted 1/5/2009 10:41 PM (GMT -6)   
Hi, and welcome to the site. I have found this site to be very helpful. My daughter had a total colectomy 11/11/08.  She has had some complications and now has a temporary ileostomy. Anyway, she too was going to the bathroom all the time. They had just put her on immodium, lomotil, and something to bulk up the stool.Those did indeed help. If you are not on them already, might be worth running it by your doctor. Her surgeon told us that it would be a good 6 months to a year before your body was back to "normal" but the frequencies and consitancy should change and become more normal.
Dont know if this helps, but rest assure you  are normal. There are many times that my daughter goes to the bathroom and doesnt pee.. She thought that was very weird.
Take Care,
Amy
Amy,
taking care of daughter w/ Crohn's since 12-04
MD's switched her diagnosis to Ulcerative Colitis 10-08
her medications: Remicade, imuran, benyl, levisin, humara, TPN (in hospital and home) home iv antibiotics
Multiple admissions for flares, sepsis
2 ports inserted/removed
Total Colectomy 11-11-08
revision of anastomosis 12-08
Temporary ileostomy 1-2-09
 
Thanks for all the support!


tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/5/2009 10:54 PM (GMT -6)   
i should also state that my colorectal surgeon -  pending how i do this month, clearing me in 4 weeks for a 2 level lumbar fusion surgery....
 so my insides dont have a lot of time to figure all this out before i am put thru an even more involved surgery = which will involve ive been told 6 weeks round the clock pain drugs... and we know what that does to the colon...... so i have till the beginning of february and if all goes well the next 4 weeks with the healing process... they are going in to do the lumbar fusion.......
 
but right now im focusing on the colon and how it will change my life.. and what i will go thru while it heals...

thanks


  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/8/2009 10:01 AM (GMT -6)   
 
 
i know its only been 9 days since my surgery ( colectomy) but does anyone get terrible pain having to go to the bathroom.... its coming thru like liquid so it shouldnt hurt... but it hurts inside-- its painful......
 
how long before those staples have totally healed around that incision....... i hate having to go the bathroom its so painful... its like i cant completely go and my body is hurting inside with what i cant get out.... and im past the place of pushing i learned that before the surgery... i could be pushing till next xmas.. so i know i wait - i just take what comes when it comes... but i dont remember this pain before the surgery
 
thanks
  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/8/2009 10:16 PM (GMT -6)   
I'm confused.
Did you have a total colectomy, or partial? Do you have a pouch, or an ostomy, neither?
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery to redo ileostomy and switch to other side 12/25/08; pred., (ileostomy temporary....not so sure?)


tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/8/2009 10:23 PM (GMT -6)   
 
 
I had a total colectomy... no pouch no nothing ... was a laporscopic colectomy
  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 1/8/2009 10:26 PM (GMT -6)   
They just connected your small intestine to your anus? I've never heard of that b4.....
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery to redo ileostomy and switch to other side 12/25/08; pred., (ileostomy temporary....not so sure?)


tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/8/2009 10:29 PM (GMT -6)   
 
 
Yes, the stapled the small intestine to the rectum...... i got the details of how all that happens after the fact... glad i found out after... but yes thats how it was done....
  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


JoJosMom
Regular Member


Date Joined Nov 2008
Total Posts : 24
   Posted 1/9/2009 2:39 AM (GMT -6)   
I had total colectomy with ileorectal anastamosis, and my first few weeks were very similar to you.l Will not say its better but different. New challenges.
56 year old
Endometrial cancer, hyst 1992; Invasive breast cancer, 1999 w/rad & chemo
Lacunar infarc (strokes, 8/01 & 05/02);found Benign falcine meningioma, 3/04 (watch & wait); Bilateral mastectomy 2005; Bilateral salpingo oopherectomy & breast reconstruction 2006
Bone met in rib from breast cancer, just one so watch & wait
Genetic diagnosis of Lynch Syndrome II 2008 (have had previous cancers related to Lynch)
Had my Colectomy w/ileorectal anastamosis 11/25/08, clear path in the extra stuff
 


tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/9/2009 11:43 PM (GMT -6)   
what is ileorectal anastamosis!?????
  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/10/2009 9:40 AM (GMT -6)   
Here is a good description:

http://www.webmd.com/brain/ileoanal-or-ileorectal-anastomosis-for-ulcerative-colitis
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 1/10/2009 11:17 AM (GMT -6)   
Hi TCR,

ileorectal anamastosis is where they connect the ileum from the small intestine to the rectum. That is what I had done when I got my total colectomy. My whole operation was a total colectomy with ileorectal anamastosis. I hope this helps you. good luck with everything.

Maya

tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/10/2009 9:01 PM (GMT -6)   
is that the same as i had done???? all they said was my small was stapled to my rectum
  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 1/10/2009 9:22 PM (GMT -6)   
hi tcr,
yes that is exactly what you had done. You had the same thing done as I did where they stapled or attached the small intestine with your rectum. The ileo refers to the part of the small intestine where called the ileum. When we had our colons, the ileum was the last part of the small intestine which was attached to the colon (large intestine). When me and you had our colons removed in our total colectomy, the ileum part of the small intestine ended up being attached to our rectum. That is where the term ileorectal anamastosis comes from. I hope this helps you alot. good luck with everything and again welcome to the board.

Maya

tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/10/2009 10:01 PM (GMT -6)   
thank you for that information... i meet with the surgeon wednesday for the first follow up since the surgery... funny i never knew any of this ....
  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/13/2009 7:17 PM (GMT -6)   
 
 
I wanted to know if anyone has had bladder problems when there intestines act up......before they did my surgery and even the first week after the surgery... whenever the intestines arent moving food... or swollen( i use to be able to visually see where food was stuck - the intestine would pop out...) but when it does that i can not pee... i did not pee for a whole week after the colectomy ... has anyone else had those problems.........
 
its been  a c hore trying to figure out what to eat that doesnt make the pottie runs excessive..... has anyone had luck with a certain diet... or left things out and it has helped them.... i see right now i need to keep everything very liquid or i have a hard time with cramps and going to the bathroom... when i keep it to soup - even though it comes right out.. there is no cramping with it.... i tried white rice tonight...
 
saltines and peanut butter last night didnt go well..... its to painful to have to try to push when you go... so right now i know if i chew it im going to have problems - if i can swallow it i wont have the cramps....
 
frustrasting!!  but its only two weeks today and i am hoping it gets easier as i go
  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 1/13/2009 8:22 PM (GMT -6)   
tcr,
with the food, usually for a while everything you eat will go out you. Alot of foods still come out the way they went in for me even though it has been 5 months since my surgery. As for the intolerances, I have a ton of them where I am limited to skinless fish, chicken, and pork that is broiled or baked, not fried. I also can tolerate acidic foods like oranges and especially I can not tolerate spicy foods, nor greasy foods as well. I talk to my surgeon and he told me that everyone is different with what they can and can not tolerate, and he says what one person can tolerate anotherperson can not. So what I did and it is the best method every is keeping a food diary. Keep in mind everything when you first get out of surgery will go right through you. After a couple of weeks, whatever foods made me go to the bathroom with painful diareah, those were the foods I could not tolerate. Basically, everytime you eat you will go right away, but the key is to see how many times you went after you ate each food. For me if I ate something and I only went about 2-4 times within an hour- an hour and a half after eating it and then stopped, then the food was okay to eat. But if I ate something and constantly kept going to the bathroom repeatedly non-stop like in 8-10 times an hour and it lasts for 2 hours or more, than I knew I could not tolerate it. Some people are lucky and may not have any problems at all and can eat anything they want. As for the butt, alot of times the butt gets sore and when it does, I recommend the destine cream especailly the equate version of it because it works wonders for the pain and itching and it makes the next BM not so painful to come out. You will see to that there are certain foods that come right out and alot of time they come out the way they came in. It does not mean you are intolerant. It simply means the foods don't stay in the intestine long enough to be digested, so they come right out the way they come in. I find this with alot of the canned veggies, spinich and other veggies and other types of foods. Well, I hope everything is going okay and I hope this helps alot. Good luck with everything.
Maya

tcr1130
Regular Member


Date Joined Jan 2009
Total Posts : 33
   Posted 1/13/2009 8:31 PM (GMT -6)   

 

 

maya,

 

thank you for the information... you are 5 months past surgery... how long after your surgery could you say it wasnt the surgery anymore and you could truely judge the food... im two weeks today.. and when have you healed enough to truely judge the food........  im surprised i had just white rice tonight and its the first time i havent run to the bathroom right after i ate..... even soup goes right thru.. but i dont get cramps and thats what matters to be right now..... got cramps with rice.. and i know its coming... but it seems tolerable right now...

i see the surgeon for my first follow up tomorrow., and scarey for me she is suppossed to be clearing me if all goes well for a 2 level lumbar fusion in the beginning of february.. scarey thinking intestinally i would be ready for this in another 3 weeks.

i do like the food journal idea.. i will start that... just if someone could give me an idea when can you truely judge the difference between post surgery diarrhea and food problems..........  and im guessing if i had problem with a food before hand i will now too... before i get sick and try it... i have gastroparesis ( very severe case of also) so food i have to chew alot scare me.. and i probably wont try them..... but need to start rotating something in besides brothy soup and scrambled eggs and maybe the white rice..

thank you for the info.....

 

tammy

 


  • Had total colectomy 12/30/2008 for colonic inertia
  • severe gastroparesis
 
 
 


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 1/14/2009 9:51 AM (GMT -6)   
hi tammy,
Usually about a month after surgery you can really trust what you can or can not tolerate. when I eat the foods I can not tolerate, The diareah is very runny, oily, and very acidic as well, and very painful like in when it comes out, it feels as the skin is being burned at that moment. Also the frequency as i mentioned has alot to do with it too. Also, after 2 months I started taking the powdered form of metamucil 2x a day. With the metamucil,if you eat something and you can tolerate it, usually you would not go as much probably 1-3 times after eating like people who have normally functioning colons do. The bowel will be formed, but it could be soft formed and not hard though, but it would still be formed where it is not diareah consistancy at all. If on the metamucil you eat something and get diaerah and keep having it frequently like going constantly, then those are the foods to avoid. but as you were saying about how you got sick with some foods before your surgery, I would try those again because now that you have your colon out, those foods you could not tolerate with the colon in you probably had something to do with the colon did not agree with them. But now you do not have your colon, so maybe, you can have those foods again since the colon is not there anymore to prevent you from having them. Do not worry about the food you have to chew alot. When you have formed bowels the foods that go out the way they come in usually are inside the formed bowel and that is not a problem, so you can have those foods. Actually, that is pretty normal that this happens.It is the diareah causing foods I would avoid. For the metamucil part, I would wait until see your surgeon for your follow up first because you are only recently out of surgery and they like to see how things are moving first to see if everything is working.Then, when you see her for a follow up, then I would ask about it. My surgeon did the same thing when he saw me the day after the surgery while i was in the hospital and he told me that he did not want to try anything yet until I saw him for the follow up because he wanted to make sure everything was moving okay, especially after years of things being slowed down and in my case my colon just died, so he wanted to make sure everything was okay. Well, I hope verything is going well. Good luck and I hope this helps alot.

Maya
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