March 2007 my diagnosis - rectal cancer. The first (general) surgeon said I'd have to have a permanent colostomy, because the tumor was so low. I changed surgeons, who sent me to chemo/radiation to shrink the tumor. That was successful, and my dead tumor was removed 8/07 at City of Hope. (laproscopic total proctectomy)

Before my surgery, having read this website, I asked my surgeon if I was getting a j-pouch and he said yes.

I had a loop ileostomy until my takedown surgery April 15, 08. Hated that bag! I was really excited to get rid it and to poop normally.

I knew that it would take time to adjust to my new plumbing, but I'm impatient. Then when I recently asked my surgeon a pouch-related question, and he said "I did not create a pouch"... that sorta blew me away, and I didn't ask him WHY.

After doing some research online, I find that the outcomes are about the same with the pouch or straight colo-anal attachment. As I read this forum, I see that my symptoms are about the same, butt burn, frequent small stools, avoiding certain foods, etc. I'm hoping to avoid the pouchitis issues I've read about here. I trust that my surgeon knew what he was doing when he chose not to create a pouch. It's just a matter of curiosity, doesn't really matter why, haha.

I'd like to thank everyone for their advice about how to take care of my sore butt. I'm using my sitz bath and several creams and baby wipes. I take metamucil in the morning, and immodium throughout the day.

I am scheduled to go back to work in 2 weeks, and I'm hoping to regulate myself enough to go without a BM from 8am-4pm! I was hoping to drink some coffee in the morning and eliminate before work, but I find that the coffee isn't working fast enough, and its taking 4 hours before my first BM of the day. So tomorrow, I'm going to take immodium first thing, and try to wait until after 4pm to start the BM process.

I'm curious if anyone else has "no pouch" like me. Anyone have any questions for me?

Looking forward to meeting you all!

Nancy M
(its ok to call me Melanie)

Your situation is actually very different from that of (I presume) the typical member of this forum. The J Pouch procedure is designed for individuals who have had their entire colon and rectum removed, and now have only their small intestine remaining. The pouch is created from the last portion of the small intestine - the jejeunum. From what you describe, you still have most of your colon remaining and therefore would not be a candidate for a J Pouch. If any pouch was to be created for you, it would have to be fashioned from your remaining colon (I guess you'd call it a C Pouch!) I don't know much about your type of surgery, but I don't believe they routinely do this.
Jeff

Sorry - Correction: When I wrote last portion of the small intestine (above) I actually meant to write the ileum, not the jejeunum!
Jeff

They actually do perform colonic j-pouches, but whether or not it is done depends largely on how much colon was removed and the intraoperative findings. Different surgeons have different views on it, but it is mostly to reduce frequency. The ileal j-pouch is what most folks here have, as said above, for people who have had their complete colon and rectum removed. The necessity is because the small intestine delivers a very loose stool, due to the fact that the colon absorbs most of the water from stool before discharging it. If you have a good portion of your colon left, you should still have decent water absorption. Without the rectum, you still will have a higher frequency than normal. If you did have a colonic j-pouch, I don't think you would be susceptible to pouchitis as most of us are, since the colon is more adapted to stool storage than the ileum.

The j-pouch is not named after the type of intestine it is constructed from, but by the shape, which is like a "j" when the intestine is folded back upon itself. The same is true of the "s" and "w" pouches.

Bottom line, yes, you just have to trust that your surgeon worked in your best interest as far as the configuration of your surgery. The main thing is that you were able to avoid the colostomy. Here's a link discussing the various surgical options for rectal cancer:
http://www.cancer.org/docroot/CRI/content/CRI_2_4_4x_Surgery_10.asp?sitearea=

Jan

Hello and thanks

My entire rectum was removed, and since my surgeon hasn't mentioned it, I assume I have all or most of my colon left. My surgery (proctectomy) is not listed on that webpage.

I must be the only one!


/nancy

Just a suggestion....go to the medical records dept. of the hospital where you had the surgery and order the surgical notes associated with the procedure you had. I have a scrapbook with these notes....most of which I don't understand. However, there are people here who could help you decipher what those notes say. Some physicians/surgeons think we couldn't possibly understand this stuff. If it happened to my body....I want to know WHAT happened and I'll do my best to make the information comprehensible....to me!

Yes exactly - I think I will start by asking to read my files at the surgeons office. I agree that they probably assume that we won't understand... but with all the online reading I've been doing, I think they underestimate me!!

thanks for your comments!

/nancy

Thanks Jan for clearing that up - I had not seen the term J pouch used for anything other than a pouch constructed from ileum, probably because I've only read about reconstruction after total proctocolectomy.
Jeff

Hi Melanie,
I've been on this site since last year when I was trying to decide what surgery to have. My surgery was because high grade dysplasia showed up in one of the biopsies from my colonoscopy last May and when my colon was removed cancer was found in one of the biopsies. My cancer was on the right side of the colon (in the ascending colon) and I was given the option of keeping my rectum and having the rest of the colon removed, which is what I did. So I guess my surgery was kind of the opposite of yours.

I was given the option of the j-pouch surgery but decided to keep the rectum because I was told that my bowel function would be closer to normal. My surgery was a total abdominal colectomy with ileo-rectal anastomosis. The surgeon pulled the end of the ileum past the top of the rectum and did a side attachment, which I guess gives my a little more capacity. My gastroenterologist called it a modified j-pouch when he a did a flex sigmoidoscopy this past February. My surgery was September 5, 2007, and was done in one step so I never had the loop ileostomy. Like you, I have had some of the same post-op symptoms as the j-pouch, with butt-burn, frequent bm's, avoiding certain foods, etc. I take Metamucil with breakfast in the morning and it helps me have a closer to normal stool than without it. Now, I can go most days without a BM from 8 to 5 while at work but sometimes have to go at work, too. I can even go through the night most of the time without a BM but still have to get up and go in the night sometimes. I've found that using the flush-able wipes wipes helps reduce butt-burn for me.
I agree with the others that suggest getting a copy of the surgery notes. I found it fascinating to read through and found out that the surgeon also left a couple of inches of the very bottom part of the sigmoid colon, where it comes up through the peritoneum into the abdominal cavity. The surgical notes actually called the procedure a total abdominal colectomy with ileo-sigmoid anastomosis, even though only a couple of inches of the sigmoid colon was left.
Best of luck to you as you return to work. I found that even though I thought I was ready to go back, I got really tired in the afternoons the first couple of weeks back to work.

Hi Melanie -

Your story sounds just like mine - was diagnosed 3/6/2007 with tumor located at 5 cm. Original surgeon wanted to do a permament colostomy, but I got a differing opinion from another doctor who did an ultrasound when I was getting more info on what I was dealing with.

With differing opinions on this, I decided to get a world-class opinion and took a trip to the Cleveland Clinic with the opinion that a colostomy was avoidable. Finished up Xeloda/radiation in June and then had Dr Fazio do a TME with straight-line CAA and diverting loop ileostomy on 8/6/2007 (thankfully no lymph node involvement), followed by 24 weeks of FOLFOX-6 chemo.

Everything been looking good and PET scans are clear - now two months out from chemo (just a small amount of neuropathy left).

Getting the loop ileostomy closed tomorrow in Dallas by a surgeon (Dale Burleson) trained by Fazio...basically been told that long term there really isn't any real statistical difference between colonic pouch and straight line, although there may be some extra issues in the short-term. I believe one factor that led to the straight line CAA was that it turned out that the mesenteric artery branch was a bit higher than normal which left less "slack" available in the descending colon (which was a surgical-time decision).

I'll try to relay experience shortly, but have also been told that they don't really measure "well, this is the result" until nearly a year after the ileostomy closure.

This message has been edited. Last edited by: SteveB,

I tried to send you a PM but I guess you don't have your acct set up for that....So that being said I am now going to give you my standard list of Buttburn cures and ideas. A lot of folks have had good results with this list. I suffered from chronic diahrea for 6mo before finding this site that did save my butt..
I made this list using all sorts of sources, mostly from here...I also have an ileo yada,
yada anastosmosis...I do have a rectum and the pouch...
Here is the list
Posted Tue Apr 22 2008 10:54 AM
I have posted this list before for other folks.
I swear by this list and many others have also benefitted...Read on AND GOOD LUCK!!!
Julie


I have dug around in my head and tried to remember all the things I wish I had, or did have, close by after the surgery and being home.
FIRST AND FOREMOST!
Butt burn remedies!
1) Ilex, Ilex, Ilex!
2) Nupercainal, Nupercainal, Nupercainal Nupercainal!
Ok...That's out of the way(I will briefly tell you about this stuff listed after I write them all down...
3)Fiber Choice or some other type fiber product
4) Neutrogena Bath oil
5) Imodium
6) Prescription or actual drug on hand> Lomotil
7) Crib pad protector
8) One or two old towels
9) Squirt bottle
10)prescription or actual medication of>Nystatin cream<
11)Charmin toilet paper> NO rough stuff!<
12) Probiotics!

These are the explanations of the list of stuff above...
1) Ilex is a great barrier cream to ward off butt burn. Some people don't like it because it's a little bit sticky and it can paste your cheeks together
Using the Nupercainal at the same time keeps that from happening(or any oil/ petroleum based cream will)You can order this stuff thru your pharmacy, it costs about 10$.
2) Nupercainal is best numbing and soothing cream I have ever used. Other folks on the site also swears by it.
3) Fiber Choice. I like this brand simply because all you have to do is eat it. The flavor (orange) is really good, even my eight year old likes them. Of course you can use anything you want, what ever works for you.
4) Bath oil, I like this brand because it doesn't leave you slicker than snail slime. It's great to use while soaking during butt burn nights and days. As you know actual water dries the skin out and the bath oil helps sooth the butt as well (sorry so graphic).
5) Imodium helps cut back on the # of stools and thickness as well.
6) If the Imodium doesn't work then try the Lomotil. They both act differently in the digestive system. But, who really cares when it's two in the morning and you have taken a 1/2 dozen sitz baths (low water in bathtub is the best definition)
7) Accidents do happen, every once in a while I still have an accident. This usually happens to me if I'm exceptionally tired and ate late (11 pm or worse) I’m 6 yrs out with my pouch.
A little way of keeping the sheets clean is to take a towel and wrap it around your waist, and then do same with the pad. This works really well if multiple accidents are happening. Of course keep your food intake down as well> Nothing after 8 pm and always go to the bathroom before going to bed. Make sure you DO eat as this will affect the pouch, some times in a negative way (+ bm's).
8)see # 7
9)A squirt bottle that you can squeeze with your hand is a good thing to have...Kind of what they give to Mom's after their fist baby is born(that's how I got mine) It was very handy when I needed to stay away from toilet paper.
10) Nystatin is one of the topical creams used to get rid of yeast infections. If you have butt burn and it's going on for a long time for really no reason then yeast can be the culprit. Another one of those things that at 2 am come in handy.
11) Charmin toilet paper...It seems softer than any of the others.
12) Probiotics...Start taking probioitcs now. Probiotics are known to cut down on a bunch of things. One of them being butt burn. It also helps in thickening up stool and helps avoid pouchitis and/or cuffitis. Pouchitis is someone asks the big question I'll be able to send it to them. I hope everything works out. Give it the ol' college try and of course you can go back. Make sure you give it a full year too.
Hope you find this helpful!
Julie
O ya..I also recomend A&D ointment(the brown/clear kind
I now save this post as buttburn issues continuously show up on the site. I hope this helps you AND anyone approaching takedown!

What I say is from the heart...To give, from my experiences..So others can feel well enough to do the same
Posts: 1131 | Location: Northern Ca. Wine country | Registered: March 18, 2003

What I say is from the heart...To give, from my experiences..So others can feel well enough to do the same