very frustrating

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nietzsche6
Regular Member


Date Joined Jan 2008
Total Posts : 22
   Posted 1/3/2008 10:17 PM (GMT -6)   
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

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 1/7/2008 8:01 PM (GMT -6)   

Angie,

I am responding to your post in hopes that others will see it again and reply to you.  I have an ileo, but not for motility issues.  I cannot really advise you, but wanted you to know that I am thinking of you.  Good Luck,

 

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/7/2008 9:39 PM (GMT -6)   
Angie I can't help either, but I have an ostomy coming up this month. This site has been extremey helpful and when somebody comes along with some helpful info ( which they will!) ull see that there's hardly n e such thing as a long post lol. I'm sorry for what ur going thru. And for my two cents, I too am afraid of the bag, but my doc says either get it now temporarily or get it later for life. It sux that we have to make these decisions....my prayers are with u
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


praying4healing
Veteran Member


Date Joined Dec 2007
Total Posts : 739
   Posted 1/7/2008 9:39 PM (GMT -6)   
Angie I can't help either, but I have an ostomy coming up this month. This site has been extremey helpful and when somebody comes along with some helpful info ( which they will!) ull see that there's hardly n e such thing as a long post lol. I'm sorry for what ur going thru. And for my two cents, I too am afraid of the bag, but my doc says either get it now temporarily or get it later for life. It sux that we have to make these decisions....my prayers are with u
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!


Amey
Veteran Member


Date Joined Jul 2006
Total Posts : 942
   Posted 1/7/2008 10:24 PM (GMT -6)   
Angie,

I had a colectomy for slow motility issues. In my opinion, having less diseased colon is better. My surgeon did a sub-total colectomy which means he left my sigmoid and my colon. This surgery did not work well for me. As it turns out, the motility issues are also present in my small bowel. Now, seven years after my first colectomy and after two addtional surgeries to try to help things move along, I have an ileostomy (bag). I still suffer with the motility issues and I have to take Amitiza and prune juice to have a bowel movement. However, now my stools stuggle to get past my sigmoid and my rectum. There are other people here who have had colectomies for slow movement (also called colonic inertia). You may want to look under the "colonic inertia" thread to read more about their experiences. I know many have had good success.

I hope this helps. Congratulations on having so many wonderful children. I am very envious. I wanted a large family but got sick in my early twenties.
Amey
 
 
Ileostomy 8/2007
Revised Coletomy/ Reset Anastimosis 2006
Revised Colectomy/ Obstructions 2005
Sub-total Colectomy 2001
 
Prov. 16: 20 Whoso trusteth in the Lord, happy is he.
 
Zelnorm, Colace, Motilium, Citrate of Magnesium, Nexium, Amitiza, Potassium, Magnesium, Miralax, Milk of Magnesium, Corgard, Glycerin Suppositories, Sorbitol, Bentyl, Senokot

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