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TOTAL COLECTOMY POLL - PLEEAASE PLEEASE TAKE PART!!!

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Ostomies
After having a total colectomy did you become incontinent to a point that required you to have a colostomy/ileostomy bag?
yes - 15.4% - 4 votes
no - 65.4% - 17 votes
I only suffer from incontinence occasionally - 19.2% - 5 votes
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Posted 9/23/2009 3:34 PM (GMT 0)
shmuel,

could you please tell me about your urostomy (indiana pouch)? I also experience significant difficulties with my bladder.I can't empty it by my own and that's why I have a permanent catheter going from the abdominal wall into the bladder. But I am not happy with this solution, many urinary tract infections and it's not really practical.
Why do you have your indiana pouch? Do you also have difficulties with urinating?

If you have pseudoobstruction and general dysmotility of the intestines (not only colon) then I would rather go for the ileostomy since it is the easiest way for the wowel to empty. With the ileorectal anastomosis the bowel has to work more to empty.

Sarah
Posted 9/23/2009 3:44 PM (GMT 0)
i forgot to mention that I also lack the ileocecal valve. If you don't have it any more there may be problems with vitamine absorption, mainly vitamine B.
Since the valve is considered to be a barrier for the stools/bacteria in the colon you may suffer from bacterial overgrowth. The stools back up into the small intestine without passing the barrier of the valve and this way false bacteria come into the small bowel where they are not supposed to be.

There, they can produce gas and make you feel nauseous. So that would be a possible explanation for your nausea either.
If you had a colectomy you wouldn't have the ileocecal valve either but probably the stools wouldn't back up so easily.
Posted 9/24/2009 3:15 AM (GMT 0)

hi Pelztier- I had my bladder removed and an Indiana POuch placed at UCLA by Dr. Shlomo Raz- he is the best. I had suffered with interstitial cystitis for 2.5 yrs and nothing relieved the pain. Now I have no pain. I hope so much you are right. My surgeon stated that I do not need an ileostomy, just an ileo-rectal anastomosis. He also made the statements that you did, that because I am missing the ileo-cecal valve, there is back up of stool into the small intestine and I sense it as nausea. Removing the colon and having frequent bms should resolve the nausea, but he can't promise me. It will be so different to have 3 bms a day without laxatives and suppositories. My surgery is a total abd. colectomy with IRA and is scheduled for Oct. 14. I have to drink Go-Lytely the day before. That stuff is nauseating for sure.

this is what I wanted to te ll you- when I have eaten a bean taco- had severe nausea with some vomiting and I believe it is due to the severe build up of gas that beans can create and backed up in my intestine. This will be my 4th and last abdominal surgery. Hope you are doing ok. Thanks, Shmuel- I am a female and Shmuel is my laptop-puppy's name

 

Posted 9/24/2009 2:06 PM (GMT 0)
shmuel,

thanks so much for sharing your experinces with me...

what is interstitial cystities? Do you have frequent/persisting symptoms of urinary tract infections with this condition which can't be considered as a "real" infection since no bacteria can be found? Do you also had problems with emptying the bladder?

If that's the right explanation then I have also been experiencing this for many years. Now I also get real infections due to the catheter but I always have cramps and pain in my bladder without a real infection.
That is why I want to look for an urostomy or a pouch like you have.
Do you have any problems with your pouch/bladder any more? Was it a good decision to take..and when was the puch done?
Do you know if interestitial cystitis is generally treated with a kind of urostomy when other treatments have failed?

Thanks!
Sarah
Posted 9/24/2009 4:46 PM (GMT 0)
did you already suffer from constipation before and has it got worse since your surgery - or was the constipation a new issue after your surgery?
Posted 9/25/2009 3:54 AM (GMT 0)
Hi Sarah- my pouch was placed in Aug 2007, I never have bladder pain anymore, because I don't have a bladder. It sounds like you have interstitial cystitis, -burning urinary pain without infection. you need to google- Dr. Shlomo Raz, he can fix you like he did to me, and that will be the end of the pain. If you get a pouch, you just cath it every 3 hrs, not hard, better than peeing every 15min. and burning pain. Yes the constipation got worse after the pouch and that is when nausea started. So got some good things with some bad. Shmuel


Posted 9/25/2009 4:02 PM (GMT 0)
do you know if you could also use the small intestine to create a pouch? I know there are different methods...
Since I don't have a colon any more only small bowel tissue could be used....
thanks!
Sarah
Posted 9/25/2009 4:06 PM (GMT 0)
and which conventional therapies have you tried before the surgery? My docs are very reluctant to operate on the bladder, they say there is nothing else than the suprapubical catheter. I guess it is also because they don't want to take such a radical step with such a young woman (I am 23y.)
Posted 9/25/2009 9:47 PM (GMT 0)
to make the indiana pouch they use the right colon and some of the ileum, we need most of the small intestine to absorb nutrients. You may need to get the urostomy and wear a bag to collect the urine. I have tried Elmiron, sacral neuromodulation, physical therapy,- nothing worked, the bladder removal is the only thing that got rid of my pain. please, please - google - dr. shlomo raz and get a new patient appointment, he can fix you.

Posted 9/26/2009 3:11 PM (GMT 0)
shmuel,

I really would like to contact your doc....BUT I live in Germany...
Do you need less small bowel for the urostomy than for the pouch?

I have tried many meds, I have had the catheter since I am not able to empty the bladder, I tried self-catherization before (that completely failed...had to self-cath every 30minutes! since my bladder has no capacity any more), pelvic flor training would not help me since they stated that's not a problem caused by the pelvic floor....

nonetheless I still have disabling symptoms and I now get urinary tract infections due to the catheter that worsen the symptoms.

Did you also have a very decreased bladder capacity so that you had the urgency to go already with a 100ml in the bladder?
Posted 9/26/2009 3:12 PM (GMT 0)
do you have a mail-address of Dr. Raz?
Posted 9/27/2009 4:34 AM (GMT 0)
i couldn't hold 100cc in my bladder, it burned. I really don't want to put Dr. RAz on this website- just google him and you will find out what you need to know- just put in Dr. Shlomo Raz- UCLA medical Center. I know you have I.C. you have all the same symptoms I had. It is a horrible disease. Constant burning pain in the urethra, bladder. To make a urostomy they use less intestine, so that is probably what you will need. Shmu
Posted 9/27/2009 1:36 PM (GMT 0)
thanks so much! I am quite sure I have IC...
Posted 5/4/2010 10:17 PM (GMT 0)
HI guys


im new on this site, i have been diagnosed after many many years with STC. I cant eat properly anylonger food has become my enemy, i get so bloated and uncomforatble i was smaller a 6 month pregnant 12 years ago.. I am 34 years, now 6stone 10 and have bmi of 15,, not good, I am now having a total colectomy in june10 yippee, via key hole and prob wont need a ileostomy, i am unsure pain after the op, not real bothered tho i will deal with it when it happens, i also know v little about life there after, will all my bloating be gone, can i eat what i want months after the op?

Has anyone got any experiance to share with me on this,, there are many people that sound in similar situations on here for dif reasons, any help would be much appreciated ..... thanks

Have put similar questions twice now,, u can tell im new doh!!
Posted 7/4/2010 4:37 AM (GMT 0)
Hi! I am 30 yrs old. I am having severe constipation. My surgeon wants me to have a total colectomy. I am all for it, but my family is freaking out. To me it will be worth it b/c I suffer on a daily basis with constipation. They are worried I will become incontinent down the road and are scared for me. Does anyone have any encouraging things to say about having a total colectomy. Does it really make you feel better?
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