Hi everyone. I have a rather bad case of Crohn's Disease (which was once diagnosed as Ulcerative Colitis) and my doctors removed my ileocecal valve during a resection a few years ago. Ever since, I have had regular and quite chronic diarrhea. Has anyone here had their ileocecal valve removed and not had constant diarrhea or does it just come with the territory?
Ileocecal valve removal
- Thread starter Allie
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DustyKat
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Hi Allie and :welcome:
How much bowel did you have removed?
My daughter had a (R) hemicolectomy 5 years ago and had 68cm of bowel removed including the ileocaecal valve. She has short bowel syndrome and from the time of her op had frequent, loose stools, about 6-8 times a day. She tried many prescription and OTC meds to stop it but they didn't work, mainly because of the pain and cramping they caused. The problem has been greatly alleviated in the last 8 months due to her using natural psyllium husks.
My son has also just had a (R) hemicolectomy, he had 30cm of bowel removed including the ileocaecal valve, he is having loose stools as well but is only going twice a day. I don't know, given time, if the loose consistency of the stool will take up a bit or not. He is only 3 weeks post op and is on Flagyl.
I have read, over time, on this forum where some people have issues with removal of the valve and others don't. I think in my daughters case it has more to do with the amount of bowel she had removed, she has lost the ability to reabsorb bile salts and it is this that is causing the bulk of her problem. I know Questran Lite, a prescribed medication, worked for her but she found it too unpalatable, it is a powder, so refused to take it.
Dusty. :hug:
How much bowel did you have removed?
My daughter had a (R) hemicolectomy 5 years ago and had 68cm of bowel removed including the ileocaecal valve. She has short bowel syndrome and from the time of her op had frequent, loose stools, about 6-8 times a day. She tried many prescription and OTC meds to stop it but they didn't work, mainly because of the pain and cramping they caused. The problem has been greatly alleviated in the last 8 months due to her using natural psyllium husks.
My son has also just had a (R) hemicolectomy, he had 30cm of bowel removed including the ileocaecal valve, he is having loose stools as well but is only going twice a day. I don't know, given time, if the loose consistency of the stool will take up a bit or not. He is only 3 weeks post op and is on Flagyl.
I have read, over time, on this forum where some people have issues with removal of the valve and others don't. I think in my daughters case it has more to do with the amount of bowel she had removed, she has lost the ability to reabsorb bile salts and it is this that is causing the bulk of her problem. I know Questran Lite, a prescribed medication, worked for her but she found it too unpalatable, it is a powder, so refused to take it.
Dusty. :hug:
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Sadly, even the smartest surgeons and GI's aren't God, well at as far as I know. When you are faced with the surgery decision, emergency or non emergency, you want God in your corner. You want Godly answers and results to aide in your rescue.
Let's face it this valve is there for a reason and it sounds like surgeons can't replace the function of the valve loss. However, Dr.s can mask some of the symptoms with powerfull meds which also have consequences. I think the Dr.s just hope that the body adapts to not having it, which I am guessing is the narrowing or clamping of the walls to slow the transit down from the shortened transit and to prevent the backflow of contents and bacteria. Maybe someone has a better insight or an educated answer on how the body adapts to loosing the valve?
Cronic diarrhea and bacterial overgrowth from the loss of this valve are not good long term answers if you ask me and should not be taken lightly in the surgery decision... This is a last resort! If you took the trap out of your sink you would probably find some creepy critters and gases coming out of your sink drain from time to time. This creates a future need to keep going to the dr's as they can keep giving meds for relief.
It is too bad that there aren't ways to save the valve or to recreate it somehow.
I don't think anyone would want a life of D and sickness from bacterial overgrowth if you asked them! That is pure torture!
Let's face it this valve is there for a reason and it sounds like surgeons can't replace the function of the valve loss. However, Dr.s can mask some of the symptoms with powerfull meds which also have consequences. I think the Dr.s just hope that the body adapts to not having it, which I am guessing is the narrowing or clamping of the walls to slow the transit down from the shortened transit and to prevent the backflow of contents and bacteria. Maybe someone has a better insight or an educated answer on how the body adapts to loosing the valve?
Cronic diarrhea and bacterial overgrowth from the loss of this valve are not good long term answers if you ask me and should not be taken lightly in the surgery decision... This is a last resort! If you took the trap out of your sink you would probably find some creepy critters and gases coming out of your sink drain from time to time. This creates a future need to keep going to the dr's as they can keep giving meds for relief.
It is too bad that there aren't ways to save the valve or to recreate it somehow.
I don't think anyone would want a life of D and sickness from bacterial overgrowth if you asked them! That is pure torture!
DustyKat
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Unfortunately ileal Crohn’s is the second most common type of Crohn’s and it more often than not affects the terminal ileum. For those with stricturing disease the options are usually more varied and in most cases they have time on their side so surgery can be avoided for lengthy periods of time. However fistulising disease is another matter. The complications of fistulae and abscesses limit treatment options and surgery is often the only option as it is that or death.
Now the issue with removing the terminal ileum is that the ileocaecal valve is an integral part of the structure of that area of bowel, you can’t remove the terminal ileum without removing the ileocaecal valve. Just as you can’t remove the terminal ileum without removing the appendix. Add to that the anatomy of the large bowel. Distal to the ileocaecal valve is the caecum into which the ileocaecal valve exits, it is a pouch like in appearance and leads onto the large bowel. In order to successfully anastomose the disease free small bowel to the large bowel the ileocaecal valve and caecum need to be removed, it is just physically impossible to successfully resect if you don’t.
In many cases surgery is indeed a last resort when choices are to be had but for some surgery is the only treatment option so rather than a last resort it is a treatment just as medication is for others. It goes without saying that surgery has its legacies and given a choice it is not something most people would put up their hand to have done. But having said that the outcomes can and often are positive, successful and quality of life saving.
Dusty. xxx
Now the issue with removing the terminal ileum is that the ileocaecal valve is an integral part of the structure of that area of bowel, you can’t remove the terminal ileum without removing the ileocaecal valve. Just as you can’t remove the terminal ileum without removing the appendix. Add to that the anatomy of the large bowel. Distal to the ileocaecal valve is the caecum into which the ileocaecal valve exits, it is a pouch like in appearance and leads onto the large bowel. In order to successfully anastomose the disease free small bowel to the large bowel the ileocaecal valve and caecum need to be removed, it is just physically impossible to successfully resect if you don’t.
In many cases surgery is indeed a last resort when choices are to be had but for some surgery is the only treatment option so rather than a last resort it is a treatment just as medication is for others. It goes without saying that surgery has its legacies and given a choice it is not something most people would put up their hand to have done. But having said that the outcomes can and often are positive, successful and quality of life saving.
Dusty. xxx
Dusty,
Our daughter had 9cm of TI removed and also had her valve removed. Now she has some constipation issues b/c of where the poop sits before ascending. The GI suggested staying w/miralax to keep water content in the poop to keep it soft and moving. On her own, she makes good solid poops. Is this something you have experience with or knowledge of how to remedy?
As a side, she is currently doing EEN for 4 weeks to help quiet some inflammation as she just started Imuran last month. I know this will keep her poops soft but I know she will be anxious to begin solids as soon as that 4 weeks finishes.
Our daughter had 9cm of TI removed and also had her valve removed. Now she has some constipation issues b/c of where the poop sits before ascending. The GI suggested staying w/miralax to keep water content in the poop to keep it soft and moving. On her own, she makes good solid poops. Is this something you have experience with or knowledge of how to remedy?
As a side, she is currently doing EEN for 4 weeks to help quiet some inflammation as she just started Imuran last month. I know this will keep her poops soft but I know she will be anxious to begin solids as soon as that 4 weeks finishes.
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I too had my valve removed and I have had diahrea for 2 years so far. Every once in a while I have a solid movement but I could count that on one hand how many times that has happened. Other than that, I don't seem to miss the valve so far.
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I think there is a chance of solid movements with the right diet. I have had a lot of bowel removed, probably close to 4 feet including the terminal ileum and the valve. I do periodically have formed stool, although I also have some narrowing in the rectum these days too. For me there was a lot of trial and error involved, not really sure what is helping. Probably a lot of experimenting in the future...
I had my 15cm of bowel removed including the ileocecal valve. Since then I've been taking 2 capsules of Loperamide a day and I haven't yet had the courage to stop taking them. Some days everythigns completely normal or even bunged up; other days it's a rush to get to the bathroom; sometimes both in one day (like today).
When I questioned my GI about this a couple of weeks ago he said because of the surgery he thought it unlikely that my digestive system would ever behave "normally" again. A slightly depressing thought ie. this is as good as it gets. If anyone ever finds a cure for Crohn's then it won't make any difference to my current state.
I've been trying a low FODMAP diet recently and it does seem to help a bit. I've started by avoiding onions, garlic, apples and honey. My GI said that they use the diet to help improve patients' quality of life, it does not affect the Crohn's itself.
When I questioned my GI about this a couple of weeks ago he said because of the surgery he thought it unlikely that my digestive system would ever behave "normally" again. A slightly depressing thought ie. this is as good as it gets. If anyone ever finds a cure for Crohn's then it won't make any difference to my current state.
I've been trying a low FODMAP diet recently and it does seem to help a bit. I've started by avoiding onions, garlic, apples and honey. My GI said that they use the diet to help improve patients' quality of life, it does not affect the Crohn's itself.
DustyKat
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@ greypup: Sorry, we have never had the issue with constipation following resection so not sure what to recommend to ensure that constipation doesn’t cause issues.
@ highlandsrock: Sarah is now 7 years post op and she has had some degree of natural take-up. She has also moved to a vegan/raw vegan diet, reduced sugar intake and avoids oils. Diet has certainly helped with reducing frequency and consistency of stools and she states that most days she has one or two solid stool. In her words they ‘splash’. :lol: I do note though that she still uses psyllium when travelling, going out etc. Her resection was quite extensive, 68cm.
I know what you mean about the legacy of surgery. My greatest wish in life is a cure but I know full well that it won’t change the legacy both of my children have to live with for the rest of their lives. Surgery gave them their lives but in return it took spontaneity out of their lives. Something those that don’t have IBD rarely give a thought to or understand.
Dusty. xxx
@ highlandsrock: Sarah is now 7 years post op and she has had some degree of natural take-up. She has also moved to a vegan/raw vegan diet, reduced sugar intake and avoids oils. Diet has certainly helped with reducing frequency and consistency of stools and she states that most days she has one or two solid stool. In her words they ‘splash’. :lol: I do note though that she still uses psyllium when travelling, going out etc. Her resection was quite extensive, 68cm.
I know what you mean about the legacy of surgery. My greatest wish in life is a cure but I know full well that it won’t change the legacy both of my children have to live with for the rest of their lives. Surgery gave them their lives but in return it took spontaneity out of their lives. Something those that don’t have IBD rarely give a thought to or understand.
Dusty. xxx
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Surgery can definitely be a permanent game changer!
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I had the same surgery due to fistulas. Chronic D and even more so, the severe cramping was a huge problem for me. Another problem is that you no longer can gauge what normal should be post surgery.
Cholestyramine controlled things well but I could tell I was still inflamed and the Imuran was not helping with that.
In my case it was Mycoplasma Pnuemonia that was causing a bulk of the inflammation. Once I reduced the pathogen, using an alternative treatment, I could go without the Cholestyramine more often. Now I have a better idea of what my new normal should feel like. I still use Cholestyramine, when on long trips and while at work, but it is possible to not use it, as the severe cramping is not as big a problem.
I also stopped using the Imuran as it was not working anyway, and the inflammation is no longer there.
High acidic foods such as coffee and orange juice increase bowel movements, but I can eat most anything else without any consequences.
I agree that keeping this valve is the best solution. In my case it was decided to remove it while in surgery. It may have been necessary but I was not happy about it.
Dan
Cholestyramine controlled things well but I could tell I was still inflamed and the Imuran was not helping with that.
In my case it was Mycoplasma Pnuemonia that was causing a bulk of the inflammation. Once I reduced the pathogen, using an alternative treatment, I could go without the Cholestyramine more often. Now I have a better idea of what my new normal should feel like. I still use Cholestyramine, when on long trips and while at work, but it is possible to not use it, as the severe cramping is not as big a problem.
I also stopped using the Imuran as it was not working anyway, and the inflammation is no longer there.
High acidic foods such as coffee and orange juice increase bowel movements, but I can eat most anything else without any consequences.
I agree that keeping this valve is the best solution. In my case it was decided to remove it while in surgery. It may have been necessary but I was not happy about it.
Dan
