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Consequences of Removal of the Ileocecal Valve - RS Hemi

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Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby Lifelong Battle » Sun Sep 27, 2009 6:01 pm

To all who are listening,
I had telescopic bowel at 22 months old. At this time in the 70's little was known about it in my small town. I almost lost that battle. 30 years later, after dealing with your same situations and a few heckles from my current co- workers, I went back to the gasternerology dr.- probabaly spelled wrong- and had him take another look to see if he could help. He just told me to watch my diet like all the others have over the years. So, I had a second opinion with my current Dr. and this guy was a genious to me. He explained my condition to me fully and how my body works with a lack of a I.C.V. It all made sense. He told me that the bacteria in the large intestine were being exposed to foods that were previously broken down by the small intestine. The bacteria in the large intestine were eating it up like candy causing gasses to build up in the large intestine and push the waste out before it was ready to pass on its own. Hope that makes sense. So to cure the problem I needed to "bulk up" on fibre foods to slow down the process. He also told me to eat smaller more frequent meals and watch my carb intake. I made an appointment with a dietition an she helped to explain the difference in carbs and complex carbs. Complex carbs take longer to break down. She gave me a list of foods to try and a list to avoid. The Dr. also suggested a fiber additive like citrucel( not metimucal). There is a difference in fibre and metimucal is the bad one.
After trying this for a few weeks I an proud to say that I have been constipated for the first time in my life. I was regular for about six months with my new diet and exercise but I have let it all go just to be sure it was what helped. Well what do you know. It is all back. The pain, the bloating, the 5 or 6 emergency bowel movements it is all back. Now all I have to do is get back on my diet and watch what I eat. The biggest helpers in my diet were brown rice, oatmeal and fiber bars. Oh, and the citrucel. I think it can be controled but you have to find the right doctor.
Hope this helps! I owe a big thanks to those hecklers. Even though they are my friends, their opinion mattered enough to me to take another look into my problem. Without them I would still be hopeless!
Lifelong Battle
 

Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby Semelka » Thu Nov 12, 2009 5:29 pm

JAZZtoo wrote:LidaRose

I had a right hemicolectomy 6 years ago with removal of the appendix, gallbladder and ileocecal valve with 4.5 cm of the ileum. I have not had any bowel problems as a result. The first few months I had several bms a day, no problem with diarrhea and for the last 5 years, usually just one a day, without any urgency and can eat all foods without a problem.

I disagree with your physician's statement - the ileocecal valve does not control the flow of fecal matter. When the intestinal contents pass through the valve at that stage it is liquified. The large intestine is responsible for the resorption of water into the body and that controls the formation of formed stool. This can be affected by food allergies, dumping syndrome (too fast transit time from injestion to ejection), spoiled food, certain medications (e.g. diabetes meds). The muscles around the anus control the ability to hold stool until you can reach a bathroom. The comment that without this valve toxins can build up and back up probably came from one of those "alternative medicine" websites similar to those that claim many pounds of fecal matter are plastered like glue on the intestinal walls necessitating many enemas of whatever brand the site is selling, which you as does anyone who has every had a colonoscopy know is a blatent lie. As far as toxins building and backing up and making one sick - peristaltic waves keep the intestinal contents flowing in the right direction so there is no backing up.

JAZZ



Hey Jazz -

I had my IC Valve removed about 1 yr ago. Long story short, I was in a major car accident 11/11/08 that should had taken my life I am told. I sustained many internal injuries, the worst being a rupture to my aortic artery which a stent was placed to stop the bleeding. In addition to the rupture, my pancreas leaked enzymes that ate at my cecum. The doctors felt they had to do what they do best, start removing body parts. They removed my spleen as well as my cecum and IC Valve. Well, I spent 1 yr in and out of the hospital for bowel leaks, fistulas, ileostomy takedown and hernia repair. My last surgery was October 9, 09. Although my IC Valve was removed in November of 2008, I had at least 80% formed stool 90% of the time. It was tolerable and not urgent most the time. Now 1 month after my last bowel repair, jeesh, it's so much worse now. The Docs are telling me that my Flora (good bacteria) needs to be replenished. OK, no problem, that can be accomplished with a little time. But then they go on to say I will have to be on meds and a strict diet for the remainder of my life to keep the diarrhea and BMS under control. I like to say that I have a pretty good diet already, so... And the meds don't sound like a good idea with all their side effects, especially the octreotide shot they gave me. I said all that to say that it is good to hear someone with a positive outcome after their IC Valve was removed, that is encouraging. I just hope my outcome is as good as yours and not like so many of the discouraging stories I have heard. For now I will be patient and eat lots of yogurt and probiotics as well as this fiber I read about called Citrucel. Maybe this will get me back on track. If you or anyone has information to what is really going on when missing your IC Valve and what to do to stabilize the bowel to get the diarrhea under control, please post your comments.
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Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby Ivona » Fri Nov 13, 2009 2:19 pm

JAZZtoo wrote:LidaRose

I had a right hemicolectomy 6 years ago with removal of the appendix, gallbladder and ileocecal valve with 4.5 cm of the ileum. I have not had any bowel problems as a result. The first few months I had several bms a day, no problem with diarrhea and for the last 5 years, usually just one a day, without any urgency and can eat all foods without a problem.

I disagree with your physician's statement - the ileocecal valve does not control the flow of fecal matter. When the intestinal contents pass through the valve at that stage it is liquified. The large intestine is responsible for the resorption of water into the body and that controls the formation of formed stool. This can be affected by food allergies, dumping syndrome (too fast transit time from injestion to ejection), spoiled food, certain medications (e.g. diabetes meds). The muscles around the anus control the ability to hold stool until you can reach a bathroom. The comment that without this valve toxins can build up and back up probably came from one of those "alternative medicine" websites similar to those that claim many pounds of fecal matter are plastered like glue on the intestinal walls necessitating many enemas of whatever brand the site is selling, which you as does anyone who has every had a colonoscopy know is a blatent lie. As far as toxins building and backing up and making one sick - peristaltic waves keep the intestinal contents flowing in the right direction so there is no backing up.

JAZZ


Isn't the sigomoid considered a sort of 'holding tank'??
dx'd Oct '08 (age 48)
T3bN2Mx
9/23 LN's
resection Nov '08
Folfox Jan '09 - March '09
Xeloda March 24/09 - July 6/09

"Yesterday is history, tomorrow is a mystery, but today is a gift. That is why it's called 'the present'. "
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Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby Lidarose » Tue Nov 17, 2009 3:04 pm

Post Script: I've also found that cutting down on the amount of fat I'm eating makes a big difference in the occurrence of diarrhea. As long as I keep my fat intake down, I'm not experiencing it anymore! Wonderful. Wanted to post this fact, so that if any others have experienced it the way I have, they will know to cut out the fat!

Best wishes and prayers for all!

Lida :D
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Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby pbelle » Wed Jan 20, 2010 7:39 am

I had 15 inches of terminal ileum and 5 inches of cecum removed Feb 14 '09. Apparently I swallowed something sharp and it cut a 1/4 inch slit which caused infection --> gangrene. Fortunately no cancer. But I've averaged 4-5 bowel motions a day since then. I was advised to eat a low fiber diet. If I ate lettuce at noon, I'd see it in the toilet about 2 pm, so I've been steering clear of fresh fruit and veg. But then I read "Eat to Live" by Joel Fuhrman. I figured things couldn't get much worse, so I tried his really high fiber diet and it definitlely helped. I've been doing that for 2 weeks and now I average 2 poos a day and they're mostly poo-shaped, not splat. Last week I went to my gastroenterologist after waiting 4 weeks for my appointment and he prescribed Questran, and now life is even better still!
This is from Wikipedia: "Cholestyramine is also used to prevent diarrhea in Crohn's disease patients who have undergone post-ileal resection. The terminal portion of the small bowel (ileum) is where bile acids are reabsorbed. When this section is removed, the bile acids pass into the large bowel and attract water due to their osmotic effect, causing diarrhea. Cholestyramine prevents this increase in water by making the bile acids insoluble and osmotically inactive."
Two days this week I've only had bowel movement per day!!! I never thought I'd ever get this good again. However, today I pigged out at Pizza Hut and had cheese pizza, garlic bread, lots of salad, and icecream just to see how good Questran was. It didn't prevent the diarrhea 2 hours and 4 hours after the meal, but at least that was it for the rest of the day. A 3-poo day and a pizza pig-out -- today is a red-letter day!

I'd definitely suggest giving Questran a try if you're missing your ileum. It was hard to drink the first day (it's like drinking fine sand), but I mix it with COLD orange juice and now it goes down the hatch quite well.

Cheers!
Pam
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Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby David » Thu Jan 21, 2010 9:28 pm

Sorry to learn of your challenges - thank you for having this discussion.

9 years ago - had a portion of my terminal ileum, appendix, cecum removed due to an unexplained micro perforation of my ileum. Two months later had my gallbladder removed. Enjoyed one year of superb health. Then bowel movements (BM) increased to 4 per day two of them very painful, often urgent, often diarrhea and general energy level declined. Saw many doctors - took many tests. No help. After 6 years of suffering - changed to a gluten free diet. BMs reduced to three per day, no pain, some diarrhea. Year 7 quit eating dairy - BMs reduced to 2 per day - no diarhea. Year 8 started drinking kombucha (tea with probiotics) - energy level up. On occasion now I enjoy a slice a pizza or some dairy ice cream and no ill effects. I am continuing to search for ways to improve my gastro health. Looking into ileocecal valve reconstruction. Plan to work with a nutritionist.
Good luck - I applaud you for reaching out for help.
Be well,
David
David
 

Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby Mark » Wed Aug 04, 2010 4:19 pm

I had my ileocecal valve removed in 1998. I recently started taking some fiber pills. It has slowed the transit time of my movements, and I get more solid movements. My doctor also has me on PREVALITE, which also slows things down. Between the two, I have a much better quality of movement. I still get diarrhea, but it's usually due to eating too much grease, or other such thing.
Mark
 

Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby Jw » Mon Apr 04, 2011 4:53 pm

I had part of my large intestine to Ed as s premie newborn which also included my valve. I keep getting bouts of ileitis - inflamation which on my case is thought to be from the contents backing up. Ileitis shows up for me as dustention of the abdomen, cramps, sweating, vomiting and horrible pain.
Jw
 

Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby Guest » Mon Apr 04, 2011 6:12 pm

I was diagnosed with Crohn's disease in 1999, and have had urgent bowel movements ever since. Most of my inflammation was around the ICV, and it was bad enough that the valve was distorted and could not close. As others have said, you learn to respond to different signals. I rarely have any issues with not getting to the bathroom in time.

I had the appendix, ascending colon, and several inches of the terminal ileum removed on 2/16 due to an adenocarcinoma on that side. Since then I'd have to say my bowel function has improved. Every 3-4 days I'll have 2-3 liquid stools in a day, but mostly they are well formed now. It is really strange, having a "normal" bm after a decade of loose stools.

Oh, and you can still travel. We just got back from a 12 night Caribbean cruise. I did pick excursions with an eye towards tours that would be near bathrooms periodically, and i went when I had the chance. Don't let it hold you back.
Guest
 

Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby deedoe60 » Thu Apr 14, 2011 1:17 pm

I had a ruptured appendix for 12 days back in 1978 when I was 18. There was removal of some intestines due to ganerine. I was misdiagnosed and sadly my parents chose to believe the doctor and not me when I insisted I was in severe pain. I had even called the doctor days later to say I had a lump growing in my lower right abdomen which was the gangerine. His response was "It will go away." It wasn't until the last few years that I learned that my Ileocecal Valve was removed at the time of my surgery. When I read on Cecal Disease I am amazed at the many symptoms I have of that disease. But, not having a valve anymore...do I have a Phantom Cecal Disease? I can not do anything about it because there is no valve to try and shut. Finally, after all these years I now know why I have suffered with some major and minor issues with my health. I also ended up with my first pregnancy in 1982 at 6 months that I had an Obstruction of the Bowel due to the adhesions that formed and attached to my uterus. I had the surgery and thankfully, my next 2 pregnancy were normal. I have many adhesions, need to go on antibiotics when bacteria gets into my small intestines and suffer as I said from many of the symptoms of Cecal Disease...i.e...pain around the heart, lower back pain, black rings under my eyes, etc... Do any of you take vitamins for the removal of your valve? I heard that B vitamins can help. I've always been a very athletic, outdoor type person and stay in shape. But the last few years I just feel there are so many nit picky issues going on and wonder if this lack of the valve is in some way responsible. I know it's in the past but sometimes I could sit and cry when I think of the fact I suffer with these symtoms due to the lack of adult intervention back in 1978.
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Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby sg » Sat Jul 09, 2011 8:08 pm

I was 22 when I had surgery to connect my small and large intestines together like a straight pipe, due to a bad car accident. They told me my loose stools would go away over time, but they never did. After my skin graff healed and they okayed me to go back to work for light duty, I realized my loose stools and horrable stomach pains weren't going away. I happened to look through my dads medicine cabnet and found some imodium. It was kind of trial an error but I found that if I took 2 pills of imodium multi symtom pills 10 minutes before I ate I was pretty much normal again lol. I take more daily than the bottle says to bt it really helped. I am 26 now and haven't had to many loose stools except when I eat greasy foods, etc. I take the generic version pills now due to imodium multi symtom so hard to find these days bt they work good too, u gotta buy two different sets of pills tho, one for diareaha and one for gas and bloating. Sorry for all my misspelled words lol hope this helps someone
sg
 

Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby pabl » Sun Jul 10, 2011 9:11 am

Speaking of fiber, if you get a can of natural psyllium (the same stuff is the main ingredient in Metamucil), you can measure your own amount/water so you can control exactly how much you take. Triphala is an Indian herbal supplement for digestion---to look into as well.
I take this every night about an hour before bed and have mostly good results...rarely concerned about toilet now. And I have had a history of diahrea problems since ileostomy reversal last September. With the bag, I used to drink a lot of juice to keep it clean (if you know what I mean)...my onc. nutritionist then told me that fruit juices can cause diahrea, so now I steer clear of those mostly.
RC 8 '09 at 45 y/o
Stage 3, 2 nodes
9 '09 rad and xel.
2 '10 resect, temp. ileo
3 '10 started 8 rounds Folfox, finished 6.
9 '10 ileo reverse
CT Scan---missed a 2 mm lung met (Jan '11)
Grew to 1 cm till yr. ct scan---VATS (Jan '12)
NED
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Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby rolandggreen » Sun Sep 18, 2011 8:05 pm

I had a bowel resection with removal of the ileocecal valve 23 years ago and have had diarrhea ever since. I continued to work, but always had to have a bathroom nearby. I have had a lot of discomforts but just always blamed them on my underlying Crohn's disease. I have tried every variety of medications and interventions without adequate relief or results but have figured that I could be a lot worse off. I have a supportive family who have always made sure that my needs are met. I have been increasingly uncomfortable over the past 6 months since having a colonoscopy and have discovered that I have a fistula and a fissure. It is extremely painful but I've also become aware that I have small bowel bacterial overgrowth as a result of the missing ileocecal valve. I now believe that it has been a chronic problem since my bowel resection. Since beginning a course of flagyl the pain at the rectal sphincter is finally bearable. I will be seeing a surgeon in a few weeks but seem to be healing since being on flagyl. I have taken flagyl before but only when I had fever and chills and clear indication that my bowel was the source of the symptoms. I always felt better following the antibiotic treatment but it was always fairly short lived. I now believe that I will have to keep on top of all of my symptoms and request that I be treated for infection whenever I notice increase of symptoms that fail to respond to other interventions. I understand that there are several antibiotics that are specifically effective against small bowel bacterial overgrowth. I read an earlier comment where the writer stated that the stool cannot reverse direction and reenter the small bowel. I know for certain that I have been plagued with abdominal distention pain and explosive diarrhea secondary to free flow of stool in both directions. However, I have lived 43 years with a diagnosis of Crohn's disease and am grateful to have remained functional. I have studied my disease since diagnosis but still find more to learn.
rolandggreen
 

Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby Udnas » Sat Jan 14, 2012 2:19 am

Lifelong Battle wrote:To all who are listening,
I had telescopic bowel at 22 months old. At this time in the 70's little was known about it in my small town. I almost lost that battle. 30 years later, after dealing with your same situations and a few heckles from my current co- workers, I went back to the gasternerology dr.- probabaly spelled wrong- and had him take another look to see if he could help. He just told me to watch my diet like all the others have over the years. So, I had a second opinion with my current Dr. and this guy was a genious to me. He explained my condition to me fully and how my body works with a lack of a I.C.V. It all made sense. He told me that the bacteria in the large intestine were being exposed to foods that were previously broken down by the small intestine. The bacteria in the large intestine were eating it up like candy causing gasses to build up in the large intestine and push the waste out before it was ready to pass on its own. Hope that makes sense. So to cure the problem I needed to "bulk up" on fibre foods to slow down the process. He also told me to eat smaller more frequent meals and watch my carb intake. I made an appointment with a dietition an she helped to explain the difference in carbs and complex carbs. Complex carbs take longer to break down. She gave me a list of foods to try and a list to avoid. The Dr. also suggested a fiber additive like citrucel( not metimucal). There is a difference in fibre and metimucal is the bad one.
After trying this for a few weeks I an proud to say that I have been constipated for the first time in my life. I was regular for about six months with my new diet and exercise but I have let it all go just to be sure it was what helped. Well what do you know. It is all back. The pain, the bloating, the 5 or 6 emergency bowel movements it is all back. Now all I have to do is get back on my diet and watch what I eat. The biggest helpers in my diet were brown rice, oatmeal and fiber bars. Oh, and the citrucel. I think it can be controled but you have to find the right doctor.
Hope this helps! I owe a big thanks to those hecklers. Even though they are my friends, their opinion mattered enough to me to take another look into my problem. Without them I would still be hopeless!


Hi Lifelong Batle,

Your explanation really helped... Are you still on that diet? How is it going?
I'm interested in more details as my 7months old child had telescopic bowel last days and doctors had to remove cecum and his ileocecal valve .

Surgeons tried to calm us down that on the 'long run' he will not be impacted in a negative way and he will be able to have a normal life...

Can somebody advice if they know similar cases? Should I try to find somewhere were to put him an artificial ileoecal valve?

Lifelong in those 30 years without ileoccal valve did you also had SIBO - small intestinal bacterial overgrowth ?

Thanks
Udnas
 
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Re: Consequences of Removal of the Ileocecal Valve - RS Hemi

Postby robpru » Mon Jan 30, 2012 12:17 am

I had the ileoceacal valve, and some intestine on both sides removed 9 months ago, and have had problems with diarhea, and needing a close bathroom, however my naturopath recommended that four times a day I take a glass of water with a tablespoon of xymogen lgG 2000 DF, and a tablespoon of nanci SF-10 in it. I asked if I could add a tablespoon of psyllium and he said that would be fine. This really helps slow down the diarhea and firm things up, so that I don't have so many trips to the bathroom, and so many emergency trips. My surgeon told me 3 months after surgery that he'd removed the valve after I complained of pain and diarhea. Anyway, my naturopath's recommendations have helped tremendously.
robpru
 

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