Hi Sally,
I am no expert in this because I had everything yanked out at once but from what I remember the rectum does have some impact on control issues and since you have a sphincter problem it could become very difficult for you to 'hold it in'...if I remember correctly the mucosectomy can be problematic but less so....but like I said, I am no expert.
Have they taken into account the sphincter problems? They must consider that when making a final decision or you could potentially end up incontinent.
I hope that they are able to do the right thing and give you your life back.
Good luck
Sharon

What disease do you have, and where is it located?

Was the first hospital talking about a few centimeters of your rectum? I doubt they were talking about the entire rectum. If they were talking about the entire rectum I say NO WAY. The cells can grow back and that is too big of an area, IMO.

Thanks guys I've for ulcerative colitis, it's in the rectum to quite badly, and yep they said the whole thing has to go! That's why I was so scared and reluctant, I can't imagine how taking the recrimination out would be a good idea :/ I'd rather they do the mucostectomy and take away the lining so I can keep the rectum, is that an option? And does the mucustectomy take away the disease?

No, they do not do the mucosectomy on the entire rectum, just the rectal cuff that remains to attach the pouch to. Most people do not have a mucosectomy because it isa very technically difficult procedure.

Removing the entire rectum, including the rectal cuff or performing a mucosectomy does completely remove the disease,but it increases the risk of fecal incontinence. So, the only time it is routinely done is if there is a very low rectal cancer or high grade dysplasia. There are a few surgeons who routinely perform mucosectomy on the rectal cuff, but they are more "old school." They also have a lot of experience with it.

If they are saying they can preserve your whole rectum and strip the mucosa on it, you need clarification. I think you misunderstood.

Jan

thanks jan,
im abit confused about it all to be honest, st marks hospital in harrow told me they remove the whole rectum and only the anus remains, and wexham park hospital told me they keep part of the rectum but take away the lining...my concern is that my rectum is very very badly inflamed with uc still so keeping it will mean i still have to take medication, and what is that likely to be? and on the flip side if they remove my rectum they have told me my anal sphincter is very weak and removing the rectum would mean even more incontinence?

Hi Sally,

You are right to be a little confused. First, it is common for those with Ulcerative Colitis to have a very diseased and ulcerated rectum. However, if the disease is not absolutely horrible or cancerous in the rectal cuff, than it is usually left behind. The rectal cuff that is left is only 1-2 cm in length. This amount of rectum generally does not cause any types of long term problems. However, like you can imagine, if too much rectum is left behind, major problems can result.

The downside of a mucosectomy or removing the last 1-2 cm or tissue, is that there are several studies that show a slightly increased risk of incontinence and poor control. The mucous lining in the rectum is thought to contain the nerves that allow you to sense whether you are passing gas or stool.

Dan

Weak sphincter muscles can make having a Jpouch difficult, no matter how long the rectal cuff, and I have heard that doing a mucosectomy can further exacerbate that-it is not usually done as standard.

My sphincter was weakened as a result of fistula surgery several years post-pouch, and I have struggled with incontinence since. Many people lose sphincter tone during the pouch surgery but it is not usually enough to make any difference functionally. The challenge with weak sphinters is that the pouch procedure leaves you with very watery stool which is the hardest for sphincters to hold in. To manage my incontinence I take a lot of fiber, immodium, and codeine to helo thicken the stool as much as possible, and I also got a spinal chord stimulator a couple years ago which also helps some. I still struggle with a certain amount of incontinence, but for me, it is a worthwhile tradeoff for my other otpion, which is to go to a perm ostomy (bag).

Generally speaking ,the rectum is removed in the jpouch procedure, and a "rectal cuff" anywhere from a couple millimeters to an inch or 2 (usually a centimeter or 2) is left behind. Yes, you can still get UC in this little cuff, but many do not. Some do, and it is called "cuffitis" and it is treated usually with suppository medications or sometimes oral meds.

The mucosectomy is not done often, but sometimes it is done on patients who are really struggling with cuffitis, but it is known to have reduced continence as a known side effect, which is why most drs do not do it as a part of the j pouch procedure anymore (more of a "last ditch" option to try to save the pouch function if the cuffitis is intollerable, when the only other option is ostomy anyway).

Good luck

My doctor did a mucusectomy on my rectal cuff in 1991. I have never had any incontinence issues because of it, but he's a pretty adept surgeon.

Thanx for the replies guys, not really sure what to do, my brain was so set on having the j pouch done and so far the surgeon is advising against it

Has anyone heard of or tired EMS? it works for urinary incontinence and apparently for fecal incontinence to? any ideas or experiences with using it??

You can have your colon removed and get a permanent ostomy for now. This doesn't mean that you can't get a j-pouch later correct? You would need to discuss this with your surgeon so that s/he would leave everything needed for a future potential j-pouch inside of your abdomen.