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ileocecal valve, cecum removed

Kathleen808's picture
Kathleen808
Posts: 2300
Joined: Jan 2009

Hi,
When Dick had his surgery 1/12/09 the surgeon removed 75% of his colon and 7 cm of small intestine, ileocecal valve, appendix and his cecum. The tumor was in his cecum and was causing a 98% blockage. He is wondering if anyone else had those parts removed and what it means in the long run. He also is having what he thinks is nerve pain that at times shoots from his belly button area toward the anus or penis. Anyone else that situation? With everything moved around so much he wonders if a nerve was involved. Also, he sometimes feels his bladder is not emptying. We know things won't feel "normal" yet but anyone else like this?
He has not started chemo yet but will in about a week.
Thanks.
Kathleen

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i am sorry to here about all the removals,my situation is not that severe.i only had tumor removed from rectum and a few cm from my colon but i to have bladder issues. my surgen kinda blew me off when i asked him about it although after surgery he did tell me he had to beat my bladder up during surgery. if you think about it we do have alot to move around to get to our rectum.i need to drink alot more water myself and see if that doesnt seem to clear this up.i go for my port tomarrow then start 12 rounds of chemo wish i could have been more help. God bless and have a good day.....johnnybegood

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Had shooting pains...not to severe but enough to be uncomfortable enough to gripe about it. When you go anywhere around the rectum there are all the nerves that control everything from incontinence to ejaculation...They lay it back and have to scrape to get everything out they can (or they did on me anyway) and they interrupt the nerve endings "sometimes" that controls all of that...Most all of the nerves are up against the pelvic area so the slightest miscalculation could sever a nerve ending causing the pain. Mine went away after a while and is not there at all anymore, plus the plumbing still works but be careful after surgery such as ours because sex sometimes isn't as pleasant as it is suppose to be....It actually felt as though someone was pulling a walnut through my urethra.......sooooo with that said....Good Luck...

Kathleen808's picture
Kathleen808
Posts: 2300
Joined: Jan 2009

Thanks. I read your comments to Dick and he said it makes sense. He feels better knowing that the pain should go away. It really help hearing other's stories.
Thanks!
Aloha,
Kathleen

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Kathleen... tell Dick that this "nerve pain" is probably totally normal. I'm not sure where his surgical wound is, but in my case it was basically from the pubic bone straight up, just passed the belly button. When they cut in that area, they are actually cutting through muscle and nerves. The "nerve pain" can actually be both the nerves and muscles regenerating themselves and repairing the damage. It can certainly be uncomfortable, as all pain can be... but if this is what he is experiencing, then this is a GOOD thing because it means the body is regenerating and healing itself. Nerves and muscles do take some time to regenerate... but they will, and yes, the pain will disappear once they are healed :)

Oh... and just a word of advice because I'm not sure if it was this topic or another one... you had mentioned that Dick was really looking forward to getting back on his surfboard. That is good that he wants to do this... but I can't stress enough to really give his body time to heal before doing anything too strenuous like sports. Even if he is feeling great... and the surgical wound looks good... he is still healing on the inside and he really doesn't want to hurt that healing process. I felt great shortly after my surgery and one of the reasons was because the nerves weren't feeling anything because they had been cut. So obviously I started doing things a little more quick than I should have... guess who ended up with a fair size hernia??? And they are not going to operate on that unless absolutely necessary because they want to make sure I don't need any more life/death surgeries... and that I'll be strong for them if I need them. Dick does NOT want to end up with a hernia and have to worry about that on top of everything else :)

Hugggggs,

Cheryl

Kathleen808's picture
Kathleen808
Posts: 2300
Joined: Jan 2009

Hi Cheryl,
Thanks for that. I just read it to Dick and he feels better hearing from more people that you can feel the nerves repairing. He says it makes sense.
You are right in regard to the surfing. I keep stressing to him that moderation is the key to him feeling better in body and spirit. Today we walked/ jogged (more walking than jogging) about 3 1/2 miles with our 2 dogs and our 12 year old daughter. She has special needs so she has an adult sized jogger. Dick said he feels like he is getting more of a workout when he pushes her so I met him 1/2 way and we each pushed 1/2 way. The aim is moderation. :)
Have a great week.
Aloha,
Kathleen

Joy1216's picture
Joy1216
Posts: 279
Joined: Mar 2006

My tumor was also in my cecum (stage 1). The surgeon removed 9" of large intestine, 5" of small intestine, and everything in between. In the three years since my surgery, I have noticed that food moves through faster (partially due to a high fiber diet) and there is more urgency to go. When you gotta go, you gotta go now! I also have more gas at times. Sometimes I feel like my colon is completely filled with gas and is about to explode, which is not pleasant for me or anyone around me. Just can't hold it in. LOL It's embarrassing and I try to watch what I eat to prevent it from happening. I also have more frequent bowel movements. All of these are tolerable, just different (the "new normal.") Sorry to be graphic, but you asked about the long run. Things will be different because your plumbing has been rerouted.

I also had stabbing pains at the resection site as well as the incision site (2" above belly button to 4" below). My family doctor said what Cheryl did. These are nerves regenerating and this results in stabbing pain. She also told me that I should worry if the pain is constant, not stabbing. The stabbing pain will be considerably less in a few months. I still get a stabbing pain every now and then.
Joy

Kathleen808's picture
Kathleen808
Posts: 2300
Joined: Jan 2009

Thanks Joy. That makes sense. Thanks for the info. We appreciate the details because that's what helps Dick feel like it is OK. He is glad to hear another person describe the nerves regrowing. He said the pain is not constant but stabbing like you described.
Aloha,
Kathleen

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Now keep in mind, this isn't personal experience, it is with a friend. She doesn't have colon cancer, but had 25 inches of her colon removed due to her Crohn's. She was having AWFUL issues with her bowels and I actually took her to her last colonoscopy appointment and happened to be in the room with her afterwards when her doc was speaking to her. He said they removed the ileocecum and that the reason for her diarrhea is that the valve is responsible for fat absorption/management. Without it, her intestines were unable to process fat the way it should, hence the constant diarrhea issues. He wrote a prescription for some kind of powder that she had to mix with something (I think she settled on applesauce cause she couldn't stand it in a drink) and the problem went away! You might want to ask his doc about that, although a gastro would be more knowledgeable on the subject than would an onc. I'm gonna ask my friend what the powder was called.

ETA: it's cholestyramine for oral suspension USP Light powder 4gram. It's supposed to be good for cholesterol as well.
mary

Kathleen808's picture
Kathleen808
Posts: 2300
Joined: Jan 2009

Thanks Mary, that's godd info. That helps to know what some of the "stuff" that wa removed did for the body. Interesting about the fat absorbtion. When Dick wakes up I'll let him know.
Aloha,
Kathleen

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I agree, I never even knew I HAD an omentum until it was removed! Then I researched it. What's really funny is the brochure I got about the IPHC where it's discussing various parts of the abdomen that might have to be removed, since they aren't necessary for life, and they mention things like the intestines, the spleen and the STOMACH! Well, I suppose necessary is in the eye of the beholder!
mary

RickMurtagh's picture
RickMurtagh
Posts: 530
Joined: Feb 2010

It is not quite a valve in the way the heart has valves, but it does "control" passage of bowel through that section of bowel. The last 19" or so of the small intestine is what absorbs fat soluble vitamins among other things.

Cholestryramine is was made for cholesterol management, but works pretty darn well at slowing down the GI tract by adding bulk just like Metamucil, etc. Immodium and Lamotil also work to slow things down. I have no colon and last the last bit of my small intestine in a useless jpouch and now have a perm ileo. You just have to have your blood tested regularly to make sure you are getting everything you need and make adjustments as needed.

MD Anderson has some Bowel protocols that may help manage the diarrhea that may help.

peace and best wishes
Rick

misterdoug
Posts: 1
Joined: May 2009

My Mom had the ileocecal valve removed almost three weeks ago as well as 13 inches of intestines, do to a ruptured appendix. Still in a lot of pain but has not made a BM since. I hear a lot about diarrhea, but has anyone experienced the lack of movement?

Kathleen808's picture
Kathleen808
Posts: 2300
Joined: Jan 2009

Hi,
Does her doctor know she hasn't had a BM in 3 weeks? If not, I suggest you get in touch with the doc.
Kathleen

gobbies20
Posts: 1
Joined: Nov 2010

My appendix burst in 2004, and I had three inches removed from my colon and I also had my ileocecal valve removed, and I have never been the same. I have been sick with constant diarrhea, the doctors cannot control it nothing works so I'm always weak and been in and out of the hospital for dehydration and after having IV I get a little stronger, but they just end up sending me home because all my blood tests come out negative. I'm always bloated. I could hardly eat, and if I do over eat I get so huge that I can't function because I get so fatigue. I'm always losing weight, last year I was 108 my normal weight is 124. I take digestive pills, probiotics, natural herbs which seem to help a little, but for five years all doctors did was put me on antibiotics and didn't help, in fact, made me feel worse because antibiotics gave me even more diarrhea. Presently, doctors are still trying to figure out what is causing the diarrhea and how can they stop it, but I think they know there's nothing they can do because of my valve missing, so I'm just trying to live day by day and hope for better days than worse days. I don't even know what to do or who to go to anymore. I just try to eat well and exercise, which seem to help with my fatigue. I hope your mother by now has gone to the doctor, because it's not normal not to go for three weeks. I never thought I would find another person who had their iliocecal valve removed. I wonder how damaging and dangerous it is to not have one. Take care of your mother, and God bless you both.

Kathleen808's picture
Kathleen808
Posts: 2300
Joined: Jan 2009

Hi Gobbies20,
Wow old post! It was a bit weird to read it after almost 2 years. Just an update. Dick has been off chemo for about 2 months. His last scan he was NED. He is actually quite healthy right now. He is working out at the gym and hiking. He is doing pretty much everything that he did before. He still has bouts of diarrhea but is having normal bm more often. He doesn't know if things will ever get back to "normal" in terms of bm's but all we're hoping for is not more cancer.

Take care.

Aloha,
Kathleen

thxmiker's picture
thxmiker
Posts: 1214
Joined: Oct 2010

I had a similar surgery, not as much colon removed. The colon is the major source of moisture from food. I drink a lot more fluids then I did before. Under my docs advice I now take immodium frequently. Immodium helps the colon asorb moisture.

The long term affects are I have to drink more fluids(more moisture intake) and loose stools. Immodium helps in both of those issues. (I may buy immodium stock.) Before the big C, if I took a half of a immodium I would not have a stool for 24 hours. I can take 4-5 a day to get my stool near normal.

Get your Docs advice on this.

Best Always, mike

John23
Posts: 1832
Joined: Jan 2007

The ileocecal valve is usually taken out when an ileostomy is
made, it's a normal procedure.

The valve is part of the Colon. If they left the valve connected
to the colon, and used that section to make the stoma, it would
be called a Colostomy.

Since they have used part of the Ileum to make the stoma, it is
called an Ileostomy.

The ileocecal valve has two functions:
1. It prevents waste/bacteria from backing up from the colon, into the ileum.
2. Allows the body to have (another) way of controlling the speed of the
digested output from the ileum into the cecum/colon.

Without the valve, our body has lost another way to regulate the speed
of the digested food passing through our intestines; it leaves our body faster.

The faster speed means less of the nutrients, etc., are absorbed from
the digested food. Liquid is also expelled out of the ileostomy faster,
so ileostomates are always on the brink of dehydration. We can't
wait until we feel thirsty to drink water, we have to have an almost
constant intake. 4oz per hour can be sufficient. Too much at any one
time will just pass through; our ileum can only absorb a specific
amount of water at one time, so drinking more often, rather than just
"more", is the proper way for us to stay hydrated.

Dehydration can be very subtle. A lessening of urine output can
be a sign of an extreme condition... The feeling that there isn't
sufficient emptying of the bladder, or having to go again soon,
can also be a sign of dehydration. Kidney stones, blood in the urine,
and the pains of passing stones, are all the usual result of allowing
yourself to become dehydrated. DRINK WATER - 4oz PER HOUR.

As far as pain? Our "buzzard" hit it right. Surgery is damaging.

After any abdominal surgery you can also expect adhesions and
hernias; both will cause extreme pain when they occur.. They do not
always rear their head immediately. I am over four years from the
date of surgery, and it's only been the last three/four months that
I have experienced intestinal blockages due to the adhesions and
hernias. It might put me back into the hospital for surgery soon...

During any radical abdominal surgery, they remove a lot of "stuff"
that fills in and around the intestines (like that "stuff" in a canned ham?).
The intestines loose that nice cushion, and can slide to places they
don't belong. They can easily impact the bladder, or the prostrate,
or whatever... Lifting heavy objects can add to it, but so can
sneezing, coughing, or absolutely nothing.

So there it is..... life as it will be.

Cancer changes us, and no one really understands that until they
experience it. The changes go beyond the cancer, and into our souls....

May you both see better days!

John

edit:
OH WOW....
This initial thread was two years ago?
Oh well...

Nongord53
Posts: 1
Joined: Oct 2012

I am a 59 year old male with a flat, mixed serrated adenomatous polyp smack on my appendix stump/. i had an emergency appendectomy in 1972, which leaked and required a second procedure a few days later. The polyp is classified a a "difficult" case due to the location in the cecum and the proximity to the appendix stump so i am going to have surgery to remove the sedum, and possibly the ileosecal valve and portions of the ileum if cancer is found or scar tissue prevents stapling of the cecum alone. I am getting a second opinion on this, as I would like to keep the removal to the cecum itself if possible. And of course, the patient doesn't get to vote at the time the decision is made. My GI says that he has only seen 4 cases of polyps on the appendix stump, and none of the others were adenomas. Anyway, I would appreciate whatever insights you can offer. I was supposed to go in for surgery tomorrow morning, but have delayed for a few weeks to get a second opinion. Many thanks.

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