Hi Lesley,
Just have to put in my 2 cents worth! I think I am just angry that the medical field is so lacking in ways to help us. This site provides more help than any doctor, and sometimes even that is not enough! At this point, the only thing I could suggest is meditation and all positive thoughts, and try to remove all stress from your life. A local man recently published a book on how meditation cured his Crohn's (and his doctors were suggesting surgery to remove his colon). Anyway, it can't do any harm to continually think that "tomorrow you will be absolutely fine". Think that every day and maybe it could happen. Apparently that is what the man did that wrote the book. There has to be a lot of stress involved just in attending events that provide food, and you end up just having water. Maybe you could bring a safe food to share? Maybe I can share more on this if I get a copy of the book. My sister did buy it, and she is almost done reading, so then I can borrow.
Wishing you well!
Marion
In full scale flare...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I haven't talked to my doctor in months. I only come here for help. Unfortunately this has been going on for a very long time, and I have had numerous problems that have complicated things some.
I have managed to persuade my friends, who were going to leave me out of events because they felt bad I couldn't eat anything, that I was then being deprived 2x - once with not being able to eat, and 2nd of the company and fun. And they weren't leaving me out for me. It was for them.
I either eat before, or I take something with me. And I am usually fine.
I just wish I could figure out how to find a relatively happy medium.
I got the book yesterday. My son took it to check it out.
I have managed to persuade my friends, who were going to leave me out of events because they felt bad I couldn't eat anything, that I was then being deprived 2x - once with not being able to eat, and 2nd of the company and fun. And they weren't leaving me out for me. It was for them.
I either eat before, or I take something with me. And I am usually fine.
I just wish I could figure out how to find a relatively happy medium.
I got the book yesterday. My son took it to check it out.
Lesley, I can't add anything or be helpful as I've never had an issue with C in my life. It sounds horrible and I'm so sorry you're having to deal with it! I hate this disease and am dealing with a flare of the other sort so I feel for you not wanting to go out and spend time with friends. Hope things get better soon.
Dear Lesley,
I hear you about social events and friends.
I am very aware that if I was not taking a maintenance dose of entocort I would have NO social life and be a hermit. It gives me enough confidence to go out.
Even with it, unless I know that the restaurant or private home is "safe" - I bring my own food. And if I think the food is interesting I bring enough to share.... That helps break some barriers with friends......
What makes my heart go out to you is that you have C more the D, so entocort does not help. What, what.... is the entocort equivalent for C? If there was an answered to that you could have, at least a temporary, solution...
Wishing you all the best in finding a way through this.
Best, Ant
PS. "To C or not to C? that is the question" (sorry, this poped into my head and I could not resist adapting the famous Shakespearean dilemma)
I hear you about social events and friends.
I am very aware that if I was not taking a maintenance dose of entocort I would have NO social life and be a hermit. It gives me enough confidence to go out.
Even with it, unless I know that the restaurant or private home is "safe" - I bring my own food. And if I think the food is interesting I bring enough to share.... That helps break some barriers with friends......
What makes my heart go out to you is that you have C more the D, so entocort does not help. What, what.... is the entocort equivalent for C? If there was an answered to that you could have, at least a temporary, solution...
Wishing you all the best in finding a way through this.
Best, Ant
PS. "To C or not to C? that is the question" (sorry, this poped into my head and I could not resist adapting the famous Shakespearean dilemma)
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Oh Lesley,
I am so sorry to hear about your continuing struggles. I don't have much to add - you already have great suggestions here.
I am thinking that there is more to this than just MC. I agree that you may have bowel motility problems beyond those that occur in MC. Are you off of all constipating meds now? With kiddies who have chronic constipation one of the treatments is to use daily mineral oil by mouth to "retrain" the bowel. With longstanding constipation, the bowel becomes "flabby", stretched, and loses its muscle tone. The tone can usually be recovered in this way. I am not really recommending this approach for you - not sure how an MCer would tolerate the oil. Perhaps daily enemas shorterm might help?
Also, I am assuming you drink adequate amounts of water each day. Adequate hydration helps to prevent constipation. At least 8 full glasses (or maybe even more since you live in a hot climate) I would recommend.
I agree with Gabes that there are likely sensitivities you are still dealing with. I can't remember what tests you have had, but of course, Dr. Fine's tests are helpful as a first step. And then MRT really helped me to fine tune my diet. I never would have guessed that I was sensitive to white potatoes and carrots, for example. I know it's expensive, but defintely might be worth saving up for. Hey, maybe you should start charging for your fabulous paleo muffins - and start a fund to use for more testing. It sounds as if folks might readily pay to eat your yummy creations! I know I would!
I don't envy you dealing with C. It has been many years since I have had it, but I would take D over C any day. C is miserable - and can be one of the most painful conditions, too.
Hang in there, dear. Here is a big hug for you: ((((((((((Lesley))))))))))
Love,
Polly
I am so sorry to hear about your continuing struggles. I don't have much to add - you already have great suggestions here.
I am thinking that there is more to this than just MC. I agree that you may have bowel motility problems beyond those that occur in MC. Are you off of all constipating meds now? With kiddies who have chronic constipation one of the treatments is to use daily mineral oil by mouth to "retrain" the bowel. With longstanding constipation, the bowel becomes "flabby", stretched, and loses its muscle tone. The tone can usually be recovered in this way. I am not really recommending this approach for you - not sure how an MCer would tolerate the oil. Perhaps daily enemas shorterm might help?
Also, I am assuming you drink adequate amounts of water each day. Adequate hydration helps to prevent constipation. At least 8 full glasses (or maybe even more since you live in a hot climate) I would recommend.
I agree with Gabes that there are likely sensitivities you are still dealing with. I can't remember what tests you have had, but of course, Dr. Fine's tests are helpful as a first step. And then MRT really helped me to fine tune my diet. I never would have guessed that I was sensitive to white potatoes and carrots, for example. I know it's expensive, but defintely might be worth saving up for. Hey, maybe you should start charging for your fabulous paleo muffins - and start a fund to use for more testing. It sounds as if folks might readily pay to eat your yummy creations! I know I would!
I don't envy you dealing with C. It has been many years since I have had it, but I would take D over C any day. C is miserable - and can be one of the most painful conditions, too.
Hang in there, dear. Here is a big hug for you: ((((((((((Lesley))))))))))
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Lesley said:
This sounds as though there might be more than just MC going on here?
Wondering with this kind of history if they have ever done studies for Megacolon? Megacolon can be a dangerous situation which could be either congenital, acquired or idiopathic. But if the nerves aren't working, no matter what the reason could be, ... they just aren't working?
Gayle
Whow -- that's a dilemma!I am sure I have permanent motility problems, but I have had them all my life. Long term narcotic use can't have helped. I have to take laxitives and stool softeners because, if I don't, nothing moves. Remember, I have been known to go 3 weeks without a BM, and once ended up in hospital because the pain was so bad the paramedics thought I was having a heart attack.
This sounds as though there might be more than just MC going on here?Wondering with this kind of history if they have ever done studies for Megacolon? Megacolon can be a dangerous situation which could be either congenital, acquired or idiopathic. But if the nerves aren't working, no matter what the reason could be, ... they just aren't working?
Gayle
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Sheila
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Lesley, I have nothing to add either, except good wishes and for you to find an answer to your C and D problems.
I can't imagine how frustrated you must be with diet, doctors, meds etc. It does sound as if you have severe motility issues. Good luck, Lesley, in finding an answer or at least, relief.
Sheila W
I can't imagine how frustrated you must be with diet, doctors, meds etc. It does sound as if you have severe motility issues. Good luck, Lesley, in finding an answer or at least, relief.
Sheila W
To get something you never had, you have to do something you never did.
A person who never made a mistake never tried something new. Einstein
A person who never made a mistake never tried something new. Einstein
Thanks everybody, so much! This is day 3 of C since my 3 days of D. I am bloated and uncomfortable, and have cramps that seem to presage D. I hope it presages something.
Gayle - point taken. I will ask my doctor because the bloating is so pronounced and uncomfortable.
Polly - I drink as much as I can, but I have hyponatremia, and every time I get to about 6 gasses I can feel my sodium dropping. I feel even more exhausted and weak.
I will bet you are right. I tried liquid paraffin. I saw that in the ingredients of Gabes' laxative. My mom would give it to my brother and I when we were kids. My brother sent me some since I can't get it here. I didn't tolerate it very well.
I have had both enterolab tests and the MRT. Enterolab took priority, but I used MRT to fine tune (or so I thought.) MRT said celery is red for me, so I cut it out of my soups and juices.
I don't know what to cut out next.
And I don't know what, in the foods I AM eating, is causing either C or D.
I will address this with my doc. It scares me. This just doesn't end!
Thanks again.
Gayle - point taken. I will ask my doctor because the bloating is so pronounced and uncomfortable.
Polly - I drink as much as I can, but I have hyponatremia, and every time I get to about 6 gasses I can feel my sodium dropping. I feel even more exhausted and weak.
I will bet you are right. I tried liquid paraffin. I saw that in the ingredients of Gabes' laxative. My mom would give it to my brother and I when we were kids. My brother sent me some since I can't get it here. I didn't tolerate it very well.
I have had both enterolab tests and the MRT. Enterolab took priority, but I used MRT to fine tune (or so I thought.) MRT said celery is red for me, so I cut it out of my soups and juices.
I don't know what to cut out next.
And I don't know what, in the foods I AM eating, is causing either C or D.
I will address this with my doc. It scares me. This just doesn't end!
Thanks again.
Lesley, when I am in a flare I drink at least a liter of this http://www.emergenc.com/index.php/produ ... lectro-mix a day. It is sodium free but what if you stirred some good sea salt into it? It's good....only a slight taste of lime. Even my four year old grand liked it.
Deb,
Adding salt to my diet does not increase my NaCl but does make my BP go up. This has been a catch 22 for a long time. When I didn't have MC I tried to keep the sodium stable at least. I have never managed to get it up much above 130, but when it goes below that I feel dreadful.
This happens even when I drink gatorade, or any other electrolyte rich drink.
I haven't seen this one. Thanks for the link.
The D is back on this 3rd day. I took the stool softener/ laxative mixture last night, and this afternoon I went to the pool. Playing with a few kids (I am the pied piper - I always have several kids hanging off my arms and back) and swimming a bit, and the D began again. I only just made it to the toilet.
Adding salt to my diet does not increase my NaCl but does make my BP go up. This has been a catch 22 for a long time. When I didn't have MC I tried to keep the sodium stable at least. I have never managed to get it up much above 130, but when it goes below that I feel dreadful.
This happens even when I drink gatorade, or any other electrolyte rich drink.
I haven't seen this one. Thanks for the link.
The D is back on this 3rd day. I took the stool softener/ laxative mixture last night, and this afternoon I went to the pool. Playing with a few kids (I am the pied piper - I always have several kids hanging off my arms and back) and swimming a bit, and the D began again. I only just made it to the toilet.
Hi Lesley,
I'm a pretty newbie to this so I don't have all the fine knowledge that you do but during my months of bad D I sure did find out who my real friends were. If I couldn't go out for Margaritas with them I was nobody. Most didn't have any interest in coming to see me at my home that I couldn't leave but I have a few real friends that are even going GF along with me and we are going to start switching off fixing GF meals and having get togethers that way now. The others I guess I was only a good Margarita friend. Wish I could help more like the rest are but I just don't have the knowledge and background. I can be a supporter for you though like some of the rest. Hang in there!!!!
I'm a pretty newbie to this so I don't have all the fine knowledge that you do but during my months of bad D I sure did find out who my real friends were. If I couldn't go out for Margaritas with them I was nobody. Most didn't have any interest in coming to see me at my home that I couldn't leave but I have a few real friends that are even going GF along with me and we are going to start switching off fixing GF meals and having get togethers that way now. The others I guess I was only a good Margarita friend. Wish I could help more like the rest are but I just don't have the knowledge and background. I can be a supporter for you though like some of the rest. Hang in there!!!!
Cathy