ileocecal valve removal

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Roni
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Date Joined May 2003
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   Posted 1/11/2011 12:15 PM (GMT -7)   
I had my ileocecal valve removed last resection a few years ago, but I developed a stricture right at the anastamosis. I have had chronic diarrhea several times a day ever since, even though I get obstructions too.

Next month, I am having another resection and they will do a side to side anastomosis, and I am a bit worried about the effects of having a wide open terminal ileum. I've heard the bowels can relearn stool formation.

Anyone have normal stools after ileocecal valve removal?

artist guy
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Date Joined Jan 2010
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   Posted 1/11/2011 12:58 PM (GMT -7)   
the only way for me is when flareing and I need to take pain med's, the next morning I will have a somewhat normal bm, then after that one it is bile d, I also suffer from severe dehydration and other comp's. from those surgeries that I had, so much so that I'm on ssdi

dunny2
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Date Joined Jan 2007
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   Posted 1/11/2011 1:09 PM (GMT -7)   
I've heard that it can re-learn. BUT hasn't happened for me after 10 years of trying:(
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with chronic pancreatitis and lupus.
B12 Shots bi-weekly

Laughter is the brush that sweeps the cobwebs from our hearts...

Nanners
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Date Joined Apr 2005
Total Posts : 14994
   Posted 1/11/2011 1:28 PM (GMT -7)   
I only had the diarrhea for about 3-4 weeks after each of my resections and since then I always tend towards constipation.
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

spookyh
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Date Joined Oct 2008
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   Posted 1/11/2011 2:50 PM (GMT -7)   
I never had regular D after my ileocecal valve was removed. My first BM after surgery was even formed! However my bowels were a little erratic in terms of how many BMs a day I had, and how formed they were. Things settled down though, and now I usually have 1 (sometimes 2) formed BMs a day.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, CoQ10, Betaine HCl
SCD since 12/01/08

lamb61
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   Posted 1/11/2011 3:42 PM (GMT -7)   
TI was removed 28.5 years ago and I did have urgency and D for about a year following. Then unless I've been flaring I typically have normal stools. Currently though I've had to start on a bile salt binder since my resection last year I tend to have loose stools. But for the most part I have no issues. good luck.

Roni
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Date Joined May 2003
Total Posts : 2480
   Posted 1/11/2011 10:31 PM (GMT -7)   
Thanks e1. I just want to have some hope that I might have relief from "d" for a while.

spookyh
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Date Joined Oct 2008
Total Posts : 1342
   Posted 1/11/2011 11:39 PM (GMT -7)   
Absolutely there is hope! You're going to do Maker's Diet too, right? That ought to help as well.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, CoQ10, Betaine HCl
SCD since 12/01/08

LiLa
Regular Member


Date Joined Nov 2007
Total Posts : 106
   Posted 1/13/2011 8:29 AM (GMT -7)   
Hi Roni,

I had the same surgery as you had 1st time. Ileocecal valve removed. However i never had formed BMs since my surgery. Went back to having frequent D and i thought i'd have it for the rest of my life. Then i started to take the bile salt binder Questran as lamb61 mentioned. This cured the D problem for me and i began having formed BMs. I get D from time to time also but that's because my disease is active again after 10 yrs so i could be facing surgery again just as you are.
Do you already take Questran or anything for bile salt? If you've managed without it until now and you have problems with D after your next surgery, i would suggest trying it as it could very well help matters. Hope this has been of some use to you!

Lila

Roni
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Date Joined May 2003
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   Posted 1/13/2011 8:59 AM (GMT -7)   
I take cholestyramine all the time, but the problem is that because of my stricture, I can only take enough to slow down the diarrhea or else I'll get obstructed. Sometimes, I have to avoid cholestyramine for months because of the obstructions.
I'm also not keen on the artificial sweetener in it.

spooky, I'll probably do a modified version of the MD. I can't do all those whole grains yet or the nuts. I will probably do gluten free grains for a while. And definitely no raw dairy, that seems so risky! I'm not even sure if I will do much dairy.

Homeboy
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Date Joined Dec 2005
Total Posts : 575
   Posted 1/13/2011 4:43 PM (GMT -7)   
You will need to get B12 in your body.

You are probably doing the injections already, but I didn't see anyone mention B12, so I bring it up.

Take Care

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/13/2011 4:54 PM (GMT -7)   
Where exactly is B12 absorbed in the bowel? My labs always comes in above the range, so I must still have that part ;-).
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, CoQ10, Betaine HCl
SCD since 12/01/08

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 575
   Posted 1/13/2011 5:22 PM (GMT -7)   
Ileocecal valve is all I know about it.

Your liver does store B12, but how much, and for how long, I dunno.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 1/13/2011 5:49 PM (GMT -7)   
Huh, odd. A year after my valve was removed, my B12 was still high.
35 years old, Crohn's disease for 15 of them
Resection of ileocecal valve on 09/22/09
Current Meds: LDN, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, Vitamin D, CoQ10, Betaine HCl
SCD since 12/01/08

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/13/2011 7:20 PM (GMT -7)   
Supposedly, it takes a long time for b12 to deplete.

I've been doing shots since before my 1st resection because my TI was toast.

LiLa
Regular Member


Date Joined Nov 2007
Total Posts : 106
   Posted 1/14/2011 4:41 AM (GMT -7)   
Hi Roni, well i would imagine once the stricture is sorted out through surgery, then you should be fine taking the Cholestyramine for D. I'm guessing if you had D after the ileocecal valve was removed originally, then it'll be the same again after the next surgery. Although maybe i am completely wrong and you may be D free and the bowels can relearn stool formation. But i'd imagine it's bile related D and that the Questran is the only thing to stop that. At least you will be able to take it without the risk of it causing obstruction.

Hopefully you won't need it but if you do - here's what dosage works for me: 1 sachet of Questran per day (morning) - you should have formed stools & almost no D. I know it tastes horrible but i would have no quality of life without it so i don't care about the taste - i just mix it with water but putting it in orange juice masks the taste quite well. I also get B12 shots every 3 months. And i find Lomotil very very handy if i get D for a long time.

Have the doctors discussed maintenance meds with you for after the surgery? Or are you just gonna try the MD and see what happens?

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 1/14/2011 9:03 AM (GMT -7)   
We're definitely keeping pentasa and we'll think about imuran too.

Even if I were in remission with diet, surgery, and all my supplements, I wouldn't give up the maintenance meds. I have suffered too much and I think that's too risky at this point. Plus, I would only do that if all my docs told me to. My docs are awesome and I trust them completely.

Also, I don't do the MD 100% anymore, because I don't think the dairy agrees with me nor all those sourdough/soaked/sprouted whole grains. After my surgery, my GI wants me to try a gluten free diet. I'm already almost gluten free, but I prefer to eat sourdough white bread, which is probably not 100% GF, but is sooooo easy on my tummy. I'm sad about giving that up, even if it's temporarily, but I'll do whatever I have to.

I'm concerned about the weight loss from surgery and Gluten free/dairy free diet. I've already lost all my pregnancy weight. Ensures have so much sugar, and I am afraid they will trigger a new flare after surgery. I'm not sure what to do about weight. Any suggestions?

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 1/14/2011 12:01 PM (GMT -7)   
their was kefir thread a few days ago, I can't drink ensure, but no problems with kefir

SaladShooter
Regular Member


Date Joined Jan 2011
Total Posts : 82
   Posted 1/16/2011 7:51 AM (GMT -7)   
B12 is absorbed in the Terminal Ileum. If you take PPIs, you are in double jeopardy for the depletion of B12 because B12 requires stomach acid (the Intrinsic Factor) to bind with so it can be absorbed in the Terminal Ileum. B12 and Folic Acid could be (perhaps should be) in your future?

Mdsimon80
New Member


Date Joined Feb 2011
Total Posts : 1
   Posted 2/27/2011 12:47 PM (GMT -7)   
Roni
I had my ileocecal valve removed in 2007 with a badly ruptured apendex. There drugs your doctor will give you will help. For me to stop the diarria eat bananas daily and to take imodim ID one to two times a day if needed. Bananas are bulky and slow things down. I avoid eating between meals. Over time things get better but there is no cure. I hope this advice helps.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 2/27/2011 3:05 PM (GMT -7)   

it also depends on how small bowel is removed, i've got 9ft removed, so taking a binder is asking for trouble for me. I would rather have a little d than c for sure. so when things are moving thru me, I just figure it was supposed to get out of my body. If I'm really depleted, I'll take a vicodin and that will slow it enough, but still let gas out. when I tried immodium, my god that stopped the gas from moving. became to painful and a bit scarry. I usually will let things be until I've gone 6 times, then I'll try to slow it down.

AG


vilan
New Member


Date Joined May 2012
Total Posts : 1
   Posted 5/29/2012 9:33 PM (GMT -7)   
I found a natural remedy=bananas:

Ten years ago I had a major bowel resection from my Crohn's disease, and in the operation, my ileocecal valve was removed. I had every possible symptom mentioned here as well as daily bloody stools causing enough of a blood loss to knock me out. By accident however, 2 years ago, I ended up eating 6 bananas in one sitting (because they were all that was available), and discovered that the next day was the first one with no symptoms.

In the past 2 years, as long as I religiously eat at least 6 bananas (or more), I am fine. If I miss a day or two, the symptoms return. The happy news is that when I resume eating the bananas, I go back to being symptom free. By the way, after eating the 6+ bananas (at breakfast, usually coated with cashew butter or cream cheese to make the meal more appetizing), I can eat almost anything I want at dinner- even spicy foods and things definitely not on my prescribed Crohn's diet. (I skip lunch because the bananas curb my appetite, and thus despite the high caloric content of bananas and cashew butter, my weight is stable.)

Try the 6 bananas diet yourself. The first week may create bloating as you adjust, but that will soon go away. I am 6'2" and maybe you can get by with 4 bananas if you are smaller. If you try this, perhaps you can report your results.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 5/29/2012 10:15 PM (GMT -7)   
Thanks, Vilan. That is interesting. I wonder what is in bananas that is so helpful for you.
I also eat bananas and find them helpful sometimes, but sometimes they don't always sit well with me.
Also, I've heard that when people eat too much of something, their bodies might develop an allergy. I'm not sure how true that is, though. What does your GI/doc say about eating so many bananas?
Co-Moderator for Crohn's Disease and Epilepsy forums.
Crohn's Disease since the 1990s.
Close family member has had epilepsy for more than 45 years.

JNorth
New Member


Date Joined Sep 2013
Total Posts : 2
   Posted 9/24/2013 6:12 PM (GMT -7)   
I know this is a very old post, but I found this last year when searching for information about removal of ileocecal value. I assume others will continue to find it through google. The information here was very worrying, and I wanted to give another experience.

I had my ileocecal value removed a little over a year ago. It was due to a polyp on the valve, and so I did not have any colon problems before the surgery. So my experience relates ONLY to removal of the value.

I would say that within two weeks of the surgery, my stool was firming up to the point it would have been OK. It continue to firm up and within a month it was pretty much normal. Since then I have changed my diet (very high fiber) so my stool is naturally softer/looser, but if I am travelling and go back to a more "normal" (not so much fiber) diet, my stool goes back to very being very solid (what most people would call normal). I've heard I might have more gas, but due to my change in diet, it is really hard to say. But in summary, I would say I have no real change due to the surgery.
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