TOTAL COLECTOMY POLL - PLEEAASE PLEEASE TAKE PART!!!

PLEASE VOTE AS TO WHETHER YOU NEEDED A COLOSTOMY BAG AFTER A TOTAL COLECTOMY BECAUSE OF INCONTINENCE.

this would be soooo helpful to me and making my decision.  thank you all soo soo much.

xxx

karen

thanks so much that really is encouraging.

i dont understand why my consultant told me 50% people who have t/c become incontinent ...it scares me.

thanks and all the best to you and daughter..x

karen

One more thing, very similar to you, I had a sigmoid resection 3/07 and had immediate colonic inertia....that is why I had the total colectomy.

I have to go back and have two more tests done in August. Some sort of small bowel test with barium (oh, joy), and some kind of CT scan. I cannot imagine what is going on. I don't think my doctor or surgeon did anything wrong, I mean I had the colectomy at the Mayo Clinic, but my body is just weird. My gastro here at home said sometimes after a colectomy people with motility problems will have the next portion of their intestine slow down. Please don't let the fact I am constipated change your mind about having the surgery, overall, I am so much healthier and better than I was before. Being constipated is better than rolling around on the floor in pain. I have been able to go back to work (I was out of work for months). I am optimistic these tests I am going to have done will show what the problem is (I am going back to Mayo for the tests). I think my overuse of laxatives leading up to the surgery is playing into it. I had to use them, though, if I did not, I would not go to the bathroom. If I can answer any more questions for you let me know, I will check back.

I also blow up massive if I don't go every day. If I were you, I would go to the pharmacy and buy fleets phosphosoda. It comes in like a 1.5 ounce bottle. Mix the whole bottle with 12 ounces of water, drink it, and follow up immediately with another 12 ounces of water. Drink as much water or tea (anything not carbonated) after that. You will swell up for maybe 30 minutes to an hour, but then you will start going to the bathroom. It will flush you out really well. I bet that will make you feel a lot better. It always works for me, just have to make sure you follow with lots of fluids. Hope that helps you some!

I had a total abdominal colectomy with ileo-rectal anastomosis September 5, 2007, and I don't have incontinence issues.
I was little concerned because of my age (53) at the time of the surgery, but only had incontinence problems a couple of times within the first month or two after the surgery. My surgery wasn't for colonic inertia but was for early stage cancer.
I did have some trouble when I used the prep kit HalfLytely the night before my flexible sigmoidoscopy at 6 months post-op, but I think thats because of the prep and liquid diet the day before the procedure. I think that it helped that my surgeon left a couple of inches of the very bottom part of my sigmoid colon as well as the rectum. He also pulled the end of the ileum a little bit past what he left of the sigmoid colon and attached the side of the ileum to the remaing part of the sigmoid colon.
Hope this helps.

Rick

Keep us posted on how you are doing and if you will have the surgery. If you ever have any questions let me know as our health situations seem to be so similar. I have been through so much and if the knowledge I have gained from my pain and suffering could help someone else I would at least feel like it served some purpose other than making me miserable.......

I am hanging in there. I seem to do okay by using the phosphosoda and eating a low fiber diet. I still don't have the dates yet as to when I will have the tests done, all I know is they were looking at August.

I was shocked that I have still had problems with constipation. My small intestine motility was EXTENSIVELY tested for motility. Mayo Clinic has very advanced tests. One of the tests they did is only performed six places in the world. All my small bowel tests came back normal. I think what may have skewed the results was that I was using laxatives. I would get like two days notice of the test and stop using laxatives, but I am sure that two days was not enough to totally get the laxatives out of my system. I was using 45 Dulcolax (bisacodyl) every night just to have some sort of bowel movement. I should say movements, because it would just be a little here, a little there, never just one movement. I knew what I was doing was wrong, but nothing else worked. I had been hospitalized five times in a six month periods for severe constipation that I was unable to treat myself. I only took those large amounts of laxatives for about 6 months, so I know that was not the cause of my problems, my problems began WAY before then. I had actually never used a stimulant laxative until after my sigmoid resection by the advice of my surgeon. I just had to keep using more and more and more. I so feel your pain about having to use large amounts of laxatives. If I were you, I would try to do the surgery as soon as possible so you can minimize damage. Senna is really hard on you, it was the one laxative my gastroenterologist told me to NEVER use because it can damage nerves in your colon. But there again, it has been used by people for so many years and many people swear it does no damage, so who knows. I could not tolerate it, it gave me terrible gas.

If I were you, I would also try to have a total colectomy. If it is not working right, even a small part of your colon remaining could make you miserable. Keep us posted on your progress

Thanks for your input Johnny.  I take it you had surgery last year?  Did you every get incontinent at all. 

Also is the urge to open bowels urgent now, or are you in control e.g you can hold on..doe syour life revolve around when you next 'go'?

i ask this because even though i have ci due to surgery last year, my life revolves around the loo because of the high amount of senna i have to take in order to go.  if i dont take it each day i am in pain/bloating and if i do take it i may or may not go, then i may also need the loo at the most awkward times etc.  the time the senna takes to work each day is different.

well thanks again, and enjoy your life! 

2much2bear

The first couple of months I had about 10-15 sometimes 20 BMs a day. I was always worried about being near a bathroom. I was very depressed. Everything I ate went right thru me. Metemucil helped some to give bulk to the stool. After about 8 mos the BMs are down to about 4-6. It was a slowwwww!!! process. It also depends on my diet. Whatever I eat usually shows up in a similar condition. I am getting used to it. Sometime stool is formed but mostly very loose. But it sure beats the alternative. I am not incontinent. Even though I suffered from colonic inertia I did not use laxatives. I needed the surgery immediately for the severe dilation (megacolon). I was severely bloated and my tranverse colon was bulging . I have had a few accidents at night but they are rare now. It takes about a year to fully recover from this type of surgery and for your small intestines to compensate for the change. Once again, "TIME" is the most important healing factor for any type of surgery and for some it takes longer than others. Regarding your fear of the bag- My rectum was saved and even if it is not, a"J" pouch can be constructed. I have a friend who lost his entire colon including his rectum and he now has a J pouch. He is doing great after 10 years. Just make sure you find a "GREAT" colorectal surgeon. I am from the Long Island, NY area and I got a great surgeon!

HI - I HAD THE SITZ MARKER TEST AND IT WAS ABNORMAL AND I HAVE HAD CONSTIPATION FOR 40 YRS TAKING LAXATIVES, BUT IT WAS NOT UNTILi I HAD MY ILEO-CECAL VALve removed from my intestine and placed at the stoma of my Indiana Pouch that I began to experience nausea- disabling nausea with belching. I have been suffering with this for 2 yrs. I am scheduled to have a total colectomy with ileo-rectal anastomosis sometime in Oct. 2009. Does anyone in this forum know if this surgery will relieve the nausea, I know it will help the constipation, but it is the nausea, that is really hard to live with. I also have psuedo-obstuction with slow colonic motility. thankyou for any feedback!!

2be colon free- thank you so much for reading my post and responding, you have been very helpful. Thanks,

Sarah- thanks for responding. i had the ileocecal valve removed and placed at the entrance of my Indiana Pouch stoma- it holds my urine, because I had my bladder removed. The doctor thinks that the wastes in my colon back up into the small intestine d/t constipation and lack of the valve to keep things in the large intestine, and I sense this with nausea. He told me he can't promise that the nausea will end with the total colectomy and ileorectal anastomosis, but that it should help. I am so hoping for this, because the constipation and nausea are disabling, and I really want to move forward in my life. Thanks and if there is anyone on this forum who was helped by the above surgery, please tell me, I need something to hope for. I feel like I am living behind a curtain (not really living) for 2 years. Shmuel