Tex,
Thank you for the link. I found that very interesting.
I had no idea that you wore an appliance. You are so amazing. I was under the impression that wearing a pouch would solve the d problem along with all of the lovely things that go with it (cramping, gas, painful bm). I also thought that you could resume your normal eating and everything is all hunky-dory again. Do you still have to have a strict diet b/c the pouch does not bypass the small bowel? I find this all so interesting and I apologize for all of the stupid questions, but as you can tell, I know nothing about this stuff. I know my dear FIL wore one for a while as he was recovering from having a portion of this colon removed b/c he had colon cancer about 8 years ago, but he had it reattached.
Personally, I would not have my colon removed unless it was absolutely necessary.
Love,
Rose
Imuran Question
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Rose,
As long as the small intestine is not inflamed in the same way as the colon, then I believe that an ileostomy would indeed allow an MC patient to ignore their diet, after the procedure. However, many of us are either celiacs, or are only a step or two away from being a celiac, due to our gluten sensitivity. I've always suspected that I may be a celiac, but I've never had an "upper", with biopsies, so I have no idea if I've ever had villous atrophy or not. Even if one could tolerate gluten, after such a procedure, I would be afraid that doing so would eventually ensure that celiac disease would have an opportunity to become fully developed, so there is no way that I would ever ingest gluten, again.
In my case, since about two-thirds of my colon is still operational, eating gluten is not an option, anyway. Actually, the pouches themselves are not much of an issue. With a good two-piece system, it only takes about a minute or two, to duck behind a tree, (LOL, or any convenient location with at least a minimal amount of privacy - I often change pouches while standing beside my truck, with the door as a shield behind me), and change the pouch, without any special facilities - it's not necessary to undress, to change it, and as long as you don't get careless, it's entirely sanitary, also.
Pat,
A little over 3 years ago, I had to have emergency abdominal surgery, because of a stenosis in my Sigmoid colon, that was acting as a blockage. The GI doc had noted it in my endoscopy report, 5 years earlier, when he was unsuccessfully attempting to figure out why I had uncontrollable diarrhea, but he never bothered to mention it to me. I picked up a copy of that report after I had to have the emergency surgery, just because I was suspicious, and sure enough, the stenosis was already there, at the time of the colonoscopy. Here's my first post, after I got back home from the surgery:
http://www.perskyfarms.com/phpBB2/viewt ... sc&start=0
Here are some details - the pathology report:
http://www.perskyfarms.com/phpBB2/viewt ... t=stenosis
The pathologist called it acute diverticulitis, but I disagree. I had absolutely no noticeable pain in my lower left quadrant, and acute diverticulitis always causes severe pain in that area. I personally believe that I had diverticular colitis, a condition that has the rather unique characteristic of causing a stenosis in the Sigmoid colon of approximately 25% of the patients who have the disease. I suspect that the pathologist had simply never heard of diverticular colitis, because it's such a rare condition.
As to why I never had the procedure reversed, at first I decided to postpone a resection, because after I read the operative report, and discovered that the surgeon had botched the job of stapling the disconnected, (remaining), distal portion of my colon, so that it was subsequently discovered to be leaking, requiring that they re-staple it, and flush out my abdominal cavity, to remove the you-know-what,
, I was more than a little gun shy about voluntarily submitting to any additional surgeries. (It's probably a minor miracle that I didn't die from an infection, after that one.) Another consideration that concerned me was the fact that my paternal grandfather, an uncle, and my father, had all died in a hospital, due to complications following surgery, and I have no ambitions to continue that tradition.
If I had not discovered the two-piece systems, I probably would have caved in and had the resection done, about 5 or 6 months after the initial surgery, because the one-piece appliance that the ostomy nurse at the hospital issues you, and shows you how to use, truly sucks. It's very difficult to clean, without getting the "stuff" all over you, unless you have the proper facilities available, and plenty of time to do it right. With the two-piece systems, though, I have to say that using them is more convenient than what nature intended, in many ways. I never have to be in a hurry to get to a bathroom, even if I have diarrhea. (Of course, I can't put it off forever, because if the pouch should fill up, that could be bad news, obviously. LOL). In fact, as noted above, I don't even need a bathroom anymore, except that it's nice to use a bathroom for changing the body seal, (known as the wafer). Normally, that has to be done only about once a week, and even that job can be done just about anywhere, if necessary.
Sooooooo, call me lazy, but I rarely find it to be inconvenient. If I were a lot younger, I would have to give more serious thought to having it reversed, of course, but considering the "perceived convenience", the cost of the surgery, and the risks involved, I haven't been able to convince myself that a reversal is worth it.
Tex
As long as the small intestine is not inflamed in the same way as the colon, then I believe that an ileostomy would indeed allow an MC patient to ignore their diet, after the procedure. However, many of us are either celiacs, or are only a step or two away from being a celiac, due to our gluten sensitivity. I've always suspected that I may be a celiac, but I've never had an "upper", with biopsies, so I have no idea if I've ever had villous atrophy or not. Even if one could tolerate gluten, after such a procedure, I would be afraid that doing so would eventually ensure that celiac disease would have an opportunity to become fully developed, so there is no way that I would ever ingest gluten, again.
In my case, since about two-thirds of my colon is still operational, eating gluten is not an option, anyway. Actually, the pouches themselves are not much of an issue. With a good two-piece system, it only takes about a minute or two, to duck behind a tree, (LOL, or any convenient location with at least a minimal amount of privacy - I often change pouches while standing beside my truck, with the door as a shield behind me), and change the pouch, without any special facilities - it's not necessary to undress, to change it, and as long as you don't get careless, it's entirely sanitary, also.
Pat,
A little over 3 years ago, I had to have emergency abdominal surgery, because of a stenosis in my Sigmoid colon, that was acting as a blockage. The GI doc had noted it in my endoscopy report, 5 years earlier, when he was unsuccessfully attempting to figure out why I had uncontrollable diarrhea, but he never bothered to mention it to me. I picked up a copy of that report after I had to have the emergency surgery, just because I was suspicious, and sure enough, the stenosis was already there, at the time of the colonoscopy. Here's my first post, after I got back home from the surgery:
http://www.perskyfarms.com/phpBB2/viewt ... sc&start=0
Here are some details - the pathology report:
http://www.perskyfarms.com/phpBB2/viewt ... t=stenosis
The pathologist called it acute diverticulitis, but I disagree. I had absolutely no noticeable pain in my lower left quadrant, and acute diverticulitis always causes severe pain in that area. I personally believe that I had diverticular colitis, a condition that has the rather unique characteristic of causing a stenosis in the Sigmoid colon of approximately 25% of the patients who have the disease. I suspect that the pathologist had simply never heard of diverticular colitis, because it's such a rare condition.
Good question. I really don't know, especially since I am guessing that it was caused by diverticular colitis, and as far as I can tell, there is absolutely no documented research that would link the condition with MC. At this stage of the game, of course, there is precious little documented research linking MC with any other diseases, for that matter, (except for celiac disease), because no one seems to be interested in pursuing that sort of research. I have a hunch, though, that it might be.Pat wrote:Does this have anything to do with MC?
As to why I never had the procedure reversed, at first I decided to postpone a resection, because after I read the operative report, and discovered that the surgeon had botched the job of stapling the disconnected, (remaining), distal portion of my colon, so that it was subsequently discovered to be leaking, requiring that they re-staple it, and flush out my abdominal cavity, to remove the you-know-what,
, I was more than a little gun shy about voluntarily submitting to any additional surgeries. (It's probably a minor miracle that I didn't die from an infection, after that one.) Another consideration that concerned me was the fact that my paternal grandfather, an uncle, and my father, had all died in a hospital, due to complications following surgery, and I have no ambitions to continue that tradition.If I had not discovered the two-piece systems, I probably would have caved in and had the resection done, about 5 or 6 months after the initial surgery, because the one-piece appliance that the ostomy nurse at the hospital issues you, and shows you how to use, truly sucks. It's very difficult to clean, without getting the "stuff" all over you, unless you have the proper facilities available, and plenty of time to do it right. With the two-piece systems, though, I have to say that using them is more convenient than what nature intended, in many ways. I never have to be in a hurry to get to a bathroom, even if I have diarrhea. (Of course, I can't put it off forever, because if the pouch should fill up, that could be bad news, obviously. LOL). In fact, as noted above, I don't even need a bathroom anymore, except that it's nice to use a bathroom for changing the body seal, (known as the wafer). Normally, that has to be done only about once a week, and even that job can be done just about anywhere, if necessary.
Sooooooo, call me lazy, but I rarely find it to be inconvenient. If I were a lot younger, I would have to give more serious thought to having it reversed, of course, but considering the "perceived convenience", the cost of the surgery, and the risks involved, I haven't been able to convince myself that a reversal is worth it.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
Wow. I can't believe all that you have been through and am truly thankful that you are ok. What an experience. I have a greater understanding of the hows and whys of the pouch now. Thank you for your insight. I didn't realize that it was so easy to take care of either or that there were different options.
Love,
Rose
Wow. I can't believe all that you have been through and am truly thankful that you are ok. What an experience. I have a greater understanding of the hows and whys of the pouch now. Thank you for your insight. I didn't realize that it was so easy to take care of either or that there were different options.
Love,
Rose
Pat,
I saw your posts on your new diet and was wondering, what are you eating. Are eating veggies? I eat them, but I steam the heck out of them. Are peas a problem for people with cc? I love to eat frozen peas while they are still frozen. What about spinach? I am a regular popeye with that stuff.
Love,
Rose
I saw your posts on your new diet and was wondering, what are you eating. Are eating veggies? I eat them, but I steam the heck out of them. Are peas a problem for people with cc? I love to eat frozen peas while they are still frozen. What about spinach? I am a regular popeye with that stuff.
Love,
Rose
Rose,
I eat meats - chicken, turkey, fish, and some pork. I notice that every time I eat beef I get a stomach ache so that is out.
I eat veggies - very well cooked, nothing raw. Squash of all kinds are good. Asparagus is good. Spinach seems to bother me so I try to avoid it. Peas are legumes and a lot of people with MC do not tolerate legumes. I know that anything fiberous for me is not good right now and legumes are fiberous foods. I try to eat avocado, but I am a little concerned about their fiber content
I eat a little applesauce and I have cooked a banana.
I also eat rice. I have tried to do without but I just can't keep my weight up without it. It has to be white rice. Brown rice is a white rice covered with bran. The bran just goes right through me.
I eat eggs right now. I am a little suspicious because I usually eat them in the morning and something I eat in the morning is not good. I seem to have more liquid D several hours after breakfast. Thicker later in the day and night. I hope it is not eggs.
It is really hard to change your diet drastically. I have struggled with this for over 2 years since I found this board. I tried all the meds which didn't work and actually made me worse ( Neomycin ). So I have given up and am just struggling with a very bland diet. It seems to be helping along with the antifungal drugs. Figuring out that almonds were bad for me has been huge. We all seem to be somewhat different. I hope you can figure out what works for you.
Pat
I eat meats - chicken, turkey, fish, and some pork. I notice that every time I eat beef I get a stomach ache so that is out.
I eat veggies - very well cooked, nothing raw. Squash of all kinds are good. Asparagus is good. Spinach seems to bother me so I try to avoid it. Peas are legumes and a lot of people with MC do not tolerate legumes. I know that anything fiberous for me is not good right now and legumes are fiberous foods. I try to eat avocado, but I am a little concerned about their fiber content
I eat a little applesauce and I have cooked a banana.
I also eat rice. I have tried to do without but I just can't keep my weight up without it. It has to be white rice. Brown rice is a white rice covered with bran. The bran just goes right through me.
I eat eggs right now. I am a little suspicious because I usually eat them in the morning and something I eat in the morning is not good. I seem to have more liquid D several hours after breakfast. Thicker later in the day and night. I hope it is not eggs.
It is really hard to change your diet drastically. I have struggled with this for over 2 years since I found this board. I tried all the meds which didn't work and actually made me worse ( Neomycin ). So I have given up and am just struggling with a very bland diet. It seems to be helping along with the antifungal drugs. Figuring out that almonds were bad for me has been huge. We all seem to be somewhat different. I hope you can figure out what works for you.
Pat
Pat,
Thank you so much. You and I seem to be on the same system. I have tried everything and nothing works. I can't tolerate rice (white or brown), eggs or red meat either. After going 22 times yesterday including a leak last night, I think that next I will eliminate legumes. I don't eat nuts b/c they have always upset my stomach. Do you eat quinoa? I have not tried that yet and I need to put some weight on (dh calls me bones). I eat a lot of squash (love it - its the Italian in me) and eat nothing raw except bananas.
I have never had a problem with a lot of yeast infections. I have had some due to wearing mini pads for ungassy gas.
Anyway, thanks again. As you can tell I am feeding off of your knowledge.
Love,
Rose
Thank you so much. You and I seem to be on the same system. I have tried everything and nothing works. I can't tolerate rice (white or brown), eggs or red meat either. After going 22 times yesterday including a leak last night, I think that next I will eliminate legumes. I don't eat nuts b/c they have always upset my stomach. Do you eat quinoa? I have not tried that yet and I need to put some weight on (dh calls me bones). I eat a lot of squash (love it - its the Italian in me) and eat nothing raw except bananas.
I have never had a problem with a lot of yeast infections. I have had some due to wearing mini pads for ungassy gas.
Anyway, thanks again. As you can tell I am feeding off of your knowledge.
Love,
Rose
Oh, Rose, bless your heart. My last GI suggested opium drugs to slow down the D. I don't know if that would be appropriate for you but you have to do something to slow down the D. I haven't tried them yet. I would bet that you are dehydrated. I only go 4- 5 times a day, sometimes more sometimes less. 22 is ridiculous. I have been there though. If you eliminate legumes remember that peanuts are legumes. Look at your supplements very carefully. Make sure you are not taking magnesium - it's a laxative. Corn can cause problems for many. You don't have to have had problems with vaginal yeast infections to have an overgrowth of yeast. My dh hasn't called me bones but that is what I look like and feel like. I know people think I am anorexic. Have you tried coconut oil? It helps add some good fat and supposedly good for your intestines. I have eaten Quinoa but it goes right through me and looks the same as when I ate it. I really think that I am intolerant to everything! Hang in there, we're going to figure this out.
Pat
Pat
That suggests that you might possibly have a gastrointestinal yeast overgrowth. Frankly, though, I don't see why that would be the case, since I get the impression that you don't eat significant amounts of sugars and carbs, (to support the yeast), but maybe I haven't been paying close enough attention to what you've told us you're eating and drinking. Usually, (according to what I've read), if you have a GI yeast overgrowth, and you minimize your sugar/carb intake, you will crave sweets, because the yeast is actually capable of controlling your brain impulses, for it's own benefit, (it tries to keep it's host from starving it to death).Rose wrote:I have never had a problem with a lot of yeast infections. I have had some due to wearing mini pads for ungassy gas.
Do you have thrush? Yeast, (candida albicans), is certainly capable of causing your symptoms, if it has taken over your GI system. This is a problem that mainstream doctors almost never catch, (a lot of them don't even think that it's possible), so many patients with the problem end up going to a naturopath, in order to get treatment.
I'm not saying that you have a yeast overgrowth, but it's something that should be ruled out, since you've tried so many "remedies" without success.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Pat,
I have taken Lomotil and that is an opiate and it did nothing, just made it worse (plus it has lactose in it). Believe or not I am not dehydrated, I exercise a lot so I drink gallons of water a day. That is the only thing I really drink. I have a cup or two of black coffee in the am, but that is it. The funny thing is I only started losing weight about three months ago, before that I was holding steady. As far as magnesium goes, I will start looking for that. I did not know that it was a laxative.
Do you take any enzymes? What about B12? My MIL (retired nurse) is always asking me about those things and when I would bring it up with my GI he would tell me that I'm fine and I didn't need them. But then he just rolled his eyes when I brought up the connection between diet and cc.
I guess I will pass on the quinoa since I can't tolerate rice I am sure that will also go through my system.
Believe me Pat, going 22 times is about the norm for me. I average between 15 to 20 times a day. My daughter, who will be 8 in a couple of weeks, always tells me that I stink up her "personal space." My kids (I also have a son that is 11) always run out of the way fast when I tell them that Mom's gotta go.
Tex,
I don't eat sugar, except for fruit which is very limited. I don't crave sugar just peanut M & M's (thats b/c they have always been my favorite) but I don't HAVE to have them if you know what I mean. I crave salt, not potato chips, but tortilla chips. I love them.
Also, I have never had thrush. Is this something that I could have my GP check out. I am very curious and would love to rule this out or if it is it, control it.
Thank you both,
Love,
Rose
I have taken Lomotil and that is an opiate and it did nothing, just made it worse (plus it has lactose in it). Believe or not I am not dehydrated, I exercise a lot so I drink gallons of water a day. That is the only thing I really drink. I have a cup or two of black coffee in the am, but that is it. The funny thing is I only started losing weight about three months ago, before that I was holding steady. As far as magnesium goes, I will start looking for that. I did not know that it was a laxative.
Do you take any enzymes? What about B12? My MIL (retired nurse) is always asking me about those things and when I would bring it up with my GI he would tell me that I'm fine and I didn't need them. But then he just rolled his eyes when I brought up the connection between diet and cc.
I guess I will pass on the quinoa since I can't tolerate rice I am sure that will also go through my system.
Believe me Pat, going 22 times is about the norm for me. I average between 15 to 20 times a day. My daughter, who will be 8 in a couple of weeks, always tells me that I stink up her "personal space." My kids (I also have a son that is 11) always run out of the way fast when I tell them that Mom's gotta go.
Tex,
I don't eat sugar, except for fruit which is very limited. I don't crave sugar just peanut M & M's (thats b/c they have always been my favorite) but I don't HAVE to have them if you know what I mean. I crave salt, not potato chips, but tortilla chips. I love them.
Also, I have never had thrush. Is this something that I could have my GP check out. I am very curious and would love to rule this out or if it is it, control it.
Thank you both,
Love,
Rose
Rose,
Check out this site, and consider the symptoms. Note that you don't have to have all those symptoms in order to have a yeast overgrowth. Several of the symptoms are obviously a close match, but, of course, yeast overgrowth is rather difficult to diagnose, because yeast is always present, to some extent. Also, there is a "huge" overlap of symptoms with MC, which can mask a candida overgrowth. The fact that you eat a lot of fruit, and are "hyper", (and nothing else has worked), makes me a bit suspicious that you might have the problem. Your GP should certainly be able to order the tests mentioned.
http://ibdcrohns.about.com/cs/candida/a/candida.htm
Gluten, of course, is notorious for causing foul-smelling stools, but yeast can also cause that problem. Here's another site with information, and a list of symptoms, etc., in fact, this site has more information than the first one - note the FAQs on the right side of the page:
http://www.healthyhighway.com/candidiasis.htm
Love,
Tex
Check out this site, and consider the symptoms. Note that you don't have to have all those symptoms in order to have a yeast overgrowth. Several of the symptoms are obviously a close match, but, of course, yeast overgrowth is rather difficult to diagnose, because yeast is always present, to some extent. Also, there is a "huge" overlap of symptoms with MC, which can mask a candida overgrowth. The fact that you eat a lot of fruit, and are "hyper", (and nothing else has worked), makes me a bit suspicious that you might have the problem. Your GP should certainly be able to order the tests mentioned.
http://ibdcrohns.about.com/cs/candida/a/candida.htm
Gluten, of course, is notorious for causing foul-smelling stools, but yeast can also cause that problem. Here's another site with information, and a list of symptoms, etc., in fact, this site has more information than the first one - note the FAQs on the right side of the page:
http://www.healthyhighway.com/candidiasis.htm
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
OMG, I can't believe what I just read. That sounds like me to a "t." I am OCD, psoriasis, suppressed immune system, etc, etc. I think that you may be on to something here. I don't know how I am going to give up my coffee (it is my only vice), but I must. I don't eat a lot of fruit b/c my selection is so limited, just a banana (for potassium after all the d) in the morning b/f I work out and another one mid morning, sometimes blueberries, but no citrus (can't stomach it). I eat more over cooked veggies than anything. I go to my GP the 26th of this month so I will ask him to do some blood work on this.
Thank you so much Tex. This may be the missing link.
Love,
Rose
OMG, I can't believe what I just read. That sounds like me to a "t." I am OCD, psoriasis, suppressed immune system, etc, etc. I think that you may be on to something here. I don't know how I am going to give up my coffee (it is my only vice), but I must. I don't eat a lot of fruit b/c my selection is so limited, just a banana (for potassium after all the d) in the morning b/f I work out and another one mid morning, sometimes blueberries, but no citrus (can't stomach it). I eat more over cooked veggies than anything. I go to my GP the 26th of this month so I will ask him to do some blood work on this.
Thank you so much Tex. This may be the missing link.
Love,
Rose
Rose,
Note that bananas are exempted from the list of forbidden fruits, when treating a candida overgrowth, so you don't have to give them up. I agree that they are a great source of potassium.
I have no idea why caffeine is forbidden. I wonder if that might be just another "medical myth", (much like caffeine is incorrectly forbidden for MC), simply because some doctor, years ago, made an incorrect assumption, and everyone else just "parrots" the same incorrect information, without checking it out. I'll look into that, and see if I can find any logical reason why caffeine should be avoided while treating a yeast overgrowth.
You're most welcome. I certainly hope it's the missing link, also.
Love,
Tex
Note that bananas are exempted from the list of forbidden fruits, when treating a candida overgrowth, so you don't have to give them up. I agree that they are a great source of potassium.
I have no idea why caffeine is forbidden. I wonder if that might be just another "medical myth", (much like caffeine is incorrectly forbidden for MC), simply because some doctor, years ago, made an incorrect assumption, and everyone else just "parrots" the same incorrect information, without checking it out. I'll look into that, and see if I can find any logical reason why caffeine should be avoided while treating a yeast overgrowth.
You're most welcome. I certainly hope it's the missing link, also.
Love,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Tex,
I agree with you on the caffine thing. Everyone wants you to give it up, except the one drinking the stuff. I have been drinking it since I was 16 and am totally a bear without it. I hate it when I have to fast for tests and it is the first thing I want when the test is over, first coffee then food. I don't use any sweeteners so I would not think that it would be a problem. I appreciate you looking in to that for me. You are such a sweetie. I don't know where I would be (besides my "office") with out you and everyones help.
Love,
Rose
I agree with you on the caffine thing. Everyone wants you to give it up, except the one drinking the stuff. I have been drinking it since I was 16 and am totally a bear without it. I hate it when I have to fast for tests and it is the first thing I want when the test is over, first coffee then food. I don't use any sweeteners so I would not think that it would be a problem. I appreciate you looking in to that for me. You are such a sweetie. I don't know where I would be (besides my "office") with out you and everyones help.
Love,
Rose