OK. Not doing well. I am sick of it. I have NO idea why.
The same cycle. C for 3-4 days. 1 tsp citrucal 1-2x a day. When I can't stand it any more I take either Dr. Schulze's intestinal formula, or pediatric liquid parafin sent to me by dear, dear Gabes. Then, when something works, I get shooting cramps that take my breath away until the BM starts. First one is hard because there is a plug, and then it starts coming out in various stages and forms another 5-6 times.
Last time this happened I had an accident. I was out with Licorice and barely got into the house.
2 days into this cycle. Now I have a constant nagging pain in the center just under the breastbone, and discomfort/pain all through my gut.
I have almost constant GERD, and often, at night, serious pain and nausea. Taking ranitidine and omeprazole. And the carafate.
I started eating beef again, since it didn't bother me before, so proteins and beef and lamb, and occasional fish, veg is mostly potatoes (lots of chips) squash, mushrooms and onion since they are low green, and also never bothered me, oat cakes made with coconut oil, and pecan butter since those were ruled "kosher" by both tests, coconut milk ice cream for treat.
Too much sugar since I suck on rock candy to keep the GERD down by stimulating the salivary glands.
That's about it.
I have lost a fair amount of weight. I needed to, but now it's still coming off. I don't know why.
I don't know what else to do. Any ideas?
I need help...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Lesley, Are you using the potty stool? I get cramps and sense of urgency, when the BM starts it is always well formed but the stools from the second and third levels are looser. The stools are not in the colon long enough for the water to be absorbed. What is the color of the stool? The best color is like cardboard. If is light it may mean undigested food that will ferment and cause gas and bloating. I stay away from any type of refined and artifical sugars. I do not have a potty stool but get in the squat position and it helps open the spincher muscle. Jon
Squatty Potty
http://www.squattypotty.com/
Never heard of it previous to Jon's post.
We could Have Squatty Potty People.
Never heard of it previous to Jon's post.
We could Have Squatty Potty People.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
I have one, and use it all the time. I can't squat - never could. A left over from childhood polio. The stool really helps.
I eventually get it out, but go through really tough cramps before it finally comes out. Most of it is darkish cardboard colored. It's formed at first, but with mucous, but the last couple are sort of disintegrating.
They we start again, and the bloating and discomfort is awful. I have cut out everthing. I don't know what to do next.
I eventually get it out, but go through really tough cramps before it finally comes out. Most of it is darkish cardboard colored. It's formed at first, but with mucous, but the last couple are sort of disintegrating.
They we start again, and the bloating and discomfort is awful. I have cut out everthing. I don't know what to do next.
Lesley,
Have you ever tried Elavil (amitriptyline)? For some people who have MC it helps to regulate motility (by speeding it up slightly, to counteract the C tendency). Don't take the higher doses used for treating depression. Something like 10 or 15 mg would be more appropriate, but you may have to experiment with the dosage to get it right. Carol (carolm) may be able to help you with this, based on her experience.
Tex
Have you ever tried Elavil (amitriptyline)? For some people who have MC it helps to regulate motility (by speeding it up slightly, to counteract the C tendency). Don't take the higher doses used for treating depression. Something like 10 or 15 mg would be more appropriate, but you may have to experiment with the dosage to get it right. Carol (carolm) may be able to help you with this, based on her experience.
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.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Bugger, bugger, bugger
A) that you are still having the fluctuating issues
B) that you are getting the discomfort and pain
C) that the paraffin didn't work..
I can't offer any suggestions.
The paraffin was the most the most gentle option I know of.
Poop accidents when out and about are not the ideal,
I hope you can get some calm for your gut soon....
Healing hugs from aus xo
A) that you are still having the fluctuating issues
B) that you are getting the discomfort and pain
C) that the paraffin didn't work..
I can't offer any suggestions.
The paraffin was the most the most gentle option I know of.
Poop accidents when out and about are not the ideal,
I hope you can get some calm for your gut soon....
Healing hugs from aus xo
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Tex,
I have been taking the Amitryptiline for years. I was first prescribed it for migraine, and kept on with it when I was kicking everything else because it is the only thing that eases the pain a bit.
Carol and I discussed this long since. I take more than she does.
Gabes - bugger indeed. The paraffin DOES work in that it helps with the C. It just that it doesn't get me closer to N, both in terms of the BM and the cramps.
What can I tell you? I guess this is going to be as good as it gets and I have to live with it. I wonder what I can add in to my diet that won't make it worse, but will make eating easier and more enjoyable?
I have been taking the Amitryptiline for years. I was first prescribed it for migraine, and kept on with it when I was kicking everything else because it is the only thing that eases the pain a bit.
Carol and I discussed this long since. I take more than she does.
Gabes - bugger indeed. The paraffin DOES work in that it helps with the C. It just that it doesn't get me closer to N, both in terms of the BM and the cramps.
What can I tell you? I guess this is going to be as good as it gets and I have to live with it. I wonder what I can add in to my diet that won't make it worse, but will make eating easier and more enjoyable?
Hi Lesley,
I have not been around as much lately so have probably have missed a number of discussions, but I have been thinking about your problem. It seems you have a problem with bowel motility far beyond what we usually see with MC. I am wondering if you have ever been diagnosed with "chronic intestinal pseudo-obstruction"? Here is some info on it:
http://www.nlm.nih.gov/medlineplus/ency ... 000253.htm
What struck me is the fact the certain neurologic conditions like cerebral palsy can be an underlying factor. So I suspect that polio can be too, and I saw that you did have polio in the past. A number of references came up when I googled "polio and intestinal pseudo-obstruction". Apparently acute pseudo-obstruction can occur in infants after receiving the oral (live) polio vaccine. Of course, your problem would be a chronic (ongoing) one.
I don't know if your docs have ever entertained this diagnosis, but if not, you might look into it further. It might be worthwhile to find out which medical center is most familiar with treating the long-term effects of polio. Maybe they have some tricks up their sleeves that would help you. Have you ever tried the med. mentioned in the article (neostigmine)?
I apologize if I have missed a discussion of this in the past - I haven't been able to keep up with all of the posts lately.
Love,
Polly
I have not been around as much lately so have probably have missed a number of discussions, but I have been thinking about your problem. It seems you have a problem with bowel motility far beyond what we usually see with MC. I am wondering if you have ever been diagnosed with "chronic intestinal pseudo-obstruction"? Here is some info on it:
http://www.nlm.nih.gov/medlineplus/ency ... 000253.htm
What struck me is the fact the certain neurologic conditions like cerebral palsy can be an underlying factor. So I suspect that polio can be too, and I saw that you did have polio in the past. A number of references came up when I googled "polio and intestinal pseudo-obstruction". Apparently acute pseudo-obstruction can occur in infants after receiving the oral (live) polio vaccine. Of course, your problem would be a chronic (ongoing) one.
I don't know if your docs have ever entertained this diagnosis, but if not, you might look into it further. It might be worthwhile to find out which medical center is most familiar with treating the long-term effects of polio. Maybe they have some tricks up their sleeves that would help you. Have you ever tried the med. mentioned in the article (neostigmine)?
I apologize if I have missed a discussion of this in the past - I haven't been able to keep up with all of the posts lately.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Polly to the rescue......
My ponderings were that if the paraffin still caused the discomfort, there had to be something physical......
Lesley, Polly knows her shi*!!!!! ( pun intended) !!!
She figured out my FMS from the other side of the globe......
May not sound the ideal to have another dx, but when you know what it is, managing it and abating the symptoms is way way easier.....
My ponderings were that if the paraffin still caused the discomfort, there had to be something physical......
Lesley, Polly knows her shi*!!!!! ( pun intended) !!!
She figured out my FMS from the other side of the globe......
May not sound the ideal to have another dx, but when you know what it is, managing it and abating the symptoms is way way easier.....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
DB with C either was diagnosed with that or thinks he has it. He did have that camera scope a while ago.
He researched it and he had the exact symptoms he found on Medline for something with initials ACPO or Olgilvie(sp?) Syndrome. I think I may have posted that previously.
His GI said DB doesn't have it because it would have shown on x-ray.
Thanks, Polly. Will check out that med mentioned. He doesn't have a home computer.
He researched it and he had the exact symptoms he found on Medline for something with initials ACPO or Olgilvie(sp?) Syndrome. I think I may have posted that previously.
His GI said DB doesn't have it because it would have shown on x-ray.
Thanks, Polly. Will check out that med mentioned. He doesn't have a home computer.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Coke as in cola!
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
That is awesome Polly. I was going to suggest Lesley find someone willing to look at motility via smart pill or whatever means one checks motility. I just can't accept that she can't be helped.
The one thing that is clear Lesley is that it does seem like you have issues that are well beyond what most of us deal with. I am C prominent and have had my trials but they have not been anywhere close to what you have dealt with. And the more I heal the less prominent my C is. I don't even take my Citrucel daily anymore, depending on if I eat fruit.
I know you don't like your GI. Dump that guy and find a group that will work with you. Please.
Carol
The one thing that is clear Lesley is that it does seem like you have issues that are well beyond what most of us deal with. I am C prominent and have had my trials but they have not been anywhere close to what you have dealt with. And the more I heal the less prominent my C is. I don't even take my Citrucel daily anymore, depending on if I eat fruit.
I know you don't like your GI. Dump that guy and find a group that will work with you. Please.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
You are all wonderful, and Polly, you are miraculous!
I have gastroparesis, dx about 3 1/2 years ago and esophagitis, and I KNOW the motility of my colon is severely compromised. I did ask at one point if polio could have caused/played a part in my digestive problems, but was told that, since it is a lower motor neuron disease, it couldn't have affected me that way.
I was puzzled at this because we know the effect of some types of polio on the brainstem, and on the lungs.
I KNOW for a fact that I am immune to all 3 types of polio, so the viruses have been in my body.
Carol, I belong to Kaiser and can't do much about changing my GI again. This one is better than the one who diagnosed me. More willing to work with me, although I haven't been in touch with him for a while since I had the endoscopy that proved I don't have Barret's (phew!). I could ask for another change, but it would be counter productive at this point, especially since I want to throw Polly's suggestion into the mix and see what happens.
I will email this to him and see what his reaction is. If not satisfactory I will see what else I can do about it.
Polly, that is a great suggestion. Brilliant!
Thank you, and thank you all. What I would do without you is beyond me!
I have gastroparesis, dx about 3 1/2 years ago and esophagitis, and I KNOW the motility of my colon is severely compromised. I did ask at one point if polio could have caused/played a part in my digestive problems, but was told that, since it is a lower motor neuron disease, it couldn't have affected me that way.
I was puzzled at this because we know the effect of some types of polio on the brainstem, and on the lungs.
I KNOW for a fact that I am immune to all 3 types of polio, so the viruses have been in my body.
Carol, I belong to Kaiser and can't do much about changing my GI again. This one is better than the one who diagnosed me. More willing to work with me, although I haven't been in touch with him for a while since I had the endoscopy that proved I don't have Barret's (phew!). I could ask for another change, but it would be counter productive at this point, especially since I want to throw Polly's suggestion into the mix and see what happens.
I will email this to him and see what his reaction is. If not satisfactory I will see what else I can do about it.
Polly, that is a great suggestion. Brilliant!
Thank you, and thank you all. What I would do without you is beyond me!
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Given the impact the compromised motility is having on your days, they have gotta listen and do something at this point....
There may not be a quick fix or magic pill, with some research I am sure there will be some things that can help you.....
Can't wait to hear what your gi says.....
There may not be a quick fix or magic pill, with some research I am sure there will be some things that can help you.....
Can't wait to hear what your gi says.....
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama