Hi Cristi,
Just wondering if you have reached any decision about how best to proceed with further medical evaluation? Also, how are things going?
Love,
Polly
Cristi, whazzup?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Cristi, whazzup?
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
I'm hanging in there...still coasting ...no changes. Still on entocort and methimazole. No explosive watery D but large amounts of unformed D.
I contacted people at Johns Hopkins and they seemed very helpful. I've also traded e-mail with a Dr. Pardi at the Mayo Clinic. He seemed very willing to work with me and also to hook me up with an endocrinologist at the same time. I'm hoping to get something scheduled for the first week in December. He's a GI who has worked with many MC patients.
I also received a list of GI from Dr. Fine. One of the names is Dr. Alexander, whom I am currently seeing. I looked up the other names and they are either naturopaths or "renegade" GI. They all endorse gluten free diets and use herbs and vitamin IV therapy. One of Dr. Alexander's lastest recommendations was for a colloidal silver colonic. I am not keen on that idea. He is treating another patient with MC, so I left the name of our support group with him and he said he would pass it on. He is a great Dr. but is moving to Florida in Nov. to be near his girlfriend.
My "theory of the week" is that perhaps I have diarrhea IBS on top of the MC. D iarrhea IBS people generally have too much serotonin in their gut as I do. There is a chinese herb remedy for morning diarrhea that has been used on IBS patients with good results. So I may do the lab rat thing and try that as well.
My husband thinks my body is giving off toxins since I usually feel ill part of each day. That makes me think it could be the bacterial overgrowth problem....but I eat no grains or sugar so I would think those little buggers would have starved by now .
My fecal fat test came back normal ...just like it did with Dr. Fine's test.
So I'm trying to be patient but also keep digging around to figure this out. This has certainly been the most difficult year of my life but I am so grateful to have this place to come and be with people who understand. To know that you all have been through this and now you laugh and cut up gives me hope. Thanks.
Love,
Cristi
I'm hanging in there...still coasting ...no changes. Still on entocort and methimazole. No explosive watery D but large amounts of unformed D.
I contacted people at Johns Hopkins and they seemed very helpful. I've also traded e-mail with a Dr. Pardi at the Mayo Clinic. He seemed very willing to work with me and also to hook me up with an endocrinologist at the same time. I'm hoping to get something scheduled for the first week in December. He's a GI who has worked with many MC patients.
I also received a list of GI from Dr. Fine. One of the names is Dr. Alexander, whom I am currently seeing. I looked up the other names and they are either naturopaths or "renegade" GI. They all endorse gluten free diets and use herbs and vitamin IV therapy. One of Dr. Alexander's lastest recommendations was for a colloidal silver colonic. I am not keen on that idea. He is treating another patient with MC, so I left the name of our support group with him and he said he would pass it on. He is a great Dr. but is moving to Florida in Nov. to be near his girlfriend.
My "theory of the week" is that perhaps I have diarrhea IBS on top of the MC. D iarrhea IBS people generally have too much serotonin in their gut as I do. There is a chinese herb remedy for morning diarrhea that has been used on IBS patients with good results. So I may do the lab rat thing and try that as well.
My husband thinks my body is giving off toxins since I usually feel ill part of each day. That makes me think it could be the bacterial overgrowth problem....but I eat no grains or sugar so I would think those little buggers would have starved by now .
My fecal fat test came back normal ...just like it did with Dr. Fine's test.
So I'm trying to be patient but also keep digging around to figure this out. This has certainly been the most difficult year of my life but I am so grateful to have this place to come and be with people who understand. To know that you all have been through this and now you laugh and cut up gives me hope. Thanks.
Love,
Cristi
Thanks for the update, Cristi. It sounds as if things are moving along.
Am I understanding correctly that you will be traveling to the Mayo Clinic in Dec. for an evaluation? I know it is a superb institution! As is Hopkins. Any chance you will be coming to Baltimore? If so, OF COURSE I would love to meet you and spend some time together if you are able.
Glad to hear that you not any worse. Are the hyperthyroid symptoms under control? You could certainly have IBS on top of MC. Have you tried any of the anti-spasmodic meds that help IBS? Just a thought. I don't know anything about IV vitamin therapy or colloidal silver colonics. Tell me more..................
One of the treatments Dr. Fine was working on was a "cleanout" using several doses of Epsom salts orally. He said that it was a good way to treat prolonged D - that the antibodies can stay around in the gut for a very long time wreaking havoc and that this is a way to hasten their departure. It has long been known that some people's MC goes into remission just from the colonscopy cleanout procedure. (I think this may have happened to Alice here). Anyway, last I heard he was figuring out the best doses to take and had not published it yet.
Anyway, hang in there. I am keeping everything crossed for you.
Love
,
Polly
Am I understanding correctly that you will be traveling to the Mayo Clinic in Dec. for an evaluation? I know it is a superb institution! As is Hopkins. Any chance you will be coming to Baltimore? If so, OF COURSE I would love to meet you and spend some time together if you are able.
Glad to hear that you not any worse. Are the hyperthyroid symptoms under control? You could certainly have IBS on top of MC. Have you tried any of the anti-spasmodic meds that help IBS? Just a thought. I don't know anything about IV vitamin therapy or colloidal silver colonics. Tell me more..................
One of the treatments Dr. Fine was working on was a "cleanout" using several doses of Epsom salts orally. He said that it was a good way to treat prolonged D - that the antibodies can stay around in the gut for a very long time wreaking havoc and that this is a way to hasten their departure. It has long been known that some people's MC goes into remission just from the colonscopy cleanout procedure. (I think this may have happened to Alice here). Anyway, last I heard he was figuring out the best doses to take and had not published it yet.
Anyway, hang in there. I am keeping everything crossed for you.
Love
,Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
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harvest_table
- Rockhopper Penguin
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- Joined: Wed May 25, 2005 6:29 pm
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Hi Cristi,
Sure wish things were moving along smoother...you are indeed a special case, I mean woman.
I so admire your fortitude and determination in tackling your health problems and it appears you are seeking out the very best in caregivers so it's comforting to know your in good hands.
Just out of curiousity, what is the chinese herb that they are using to treat IBS patients?
Keep the faith!
Love,
Joanna
Sure wish things were moving along smoother...you are indeed a special case, I mean woman.
I so admire your fortitude and determination in tackling your health problems and it appears you are seeking out the very best in caregivers so it's comforting to know your in good hands.
Just out of curiousity, what is the chinese herb that they are using to treat IBS patients?
Keep the faith!
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Hi Cristi, good luck hope everything improves for you.
Did anyone hear what Ophrah said yesterday that 39% of Americans suffer the D, thats a lot. must be something because thats sooo much.
My Gas Dr told myself that it affects mostly Celts. and as Im fairly new to Canada, (five years), it seems like a contradiction somehow.
Came here from Cork but Welsh by birth.
Asacol is helping not 100% but better.
Dr suggested steroids but Im nervous regarding those.
Have a great day.
Janet
Did anyone hear what Ophrah said yesterday that 39% of Americans suffer the D, thats a lot. must be something because thats sooo much.
My Gas Dr told myself that it affects mostly Celts. and as Im fairly new to Canada, (five years), it seems like a contradiction somehow.
Came here from Cork but Welsh by birth.
Asacol is helping not 100% but better.
Dr suggested steroids but Im nervous regarding those.
Have a great day.
Janet
jmg
Hi Everyone,
I have an appointment for Dec. 6 at the Mayo Clinic. I decided to go there since I actually communicated directly with the GI instead of just the scheduling desk and his apparent willingness to work with as endocrinologist. And It's closer to my neck of the woods. I am trying to keep my expectations in check. My GI here wants to do another colonoscopy and I thought if I am going to go through testing again I want it to be with someone who is familiar with MC and what it's symptoms are if all of mine are MC. Plus I remember my Gyno saying that when she went to remove my appendix she couldn't find it and had to go "digging" around. I want to be sure everything was put back where it belongs.
The thyroid symptoms are better..heart racing is mostly gone, panicy feelings are mostly gone and odd muscle twitches and weakness are gone. I still get very hungry and need to eat a lot...I haven't lost any weight this month though...so that's a start.
Polly...I took a hair analysis to check my mineral levels...and they came back very low. Dr. Alexander said that trying to absorb nutrients in a compromised digestive system is a slow process so they give me minerals and amino acids through an IV....helping the body help itself. I don't know much about the colonics....will keep this in mind as a very last resort.I wish the Johns Hopkins had worked out just so I could meet you and give you a big hug. When I am better I will come to a potty people party and give everyone a hug.
Joanna...I get the herbs in a week after I take an ACTH stimulation test next Monday. I think it is a mixture of different herbs. Chinese medicine is over 4 thousand years old and it's interesting to read the different descriptions of illnesses that we now have names for. They have different herbs for different kinds of digestive issues. I'll know more in a week and will let you know.
Hi Janet...I saw that Oprah show too. I'm glad people are finally getting comfortable talking about poop. I passed hard marbles all my life and didn't know that wasn't normal.
Thanks for the hugs Shirley. My Mom is coming out to stay with our son in December. He's old enough to stay by himself but i would be less worried about him if I knew she was here.
I'll keep you all posted. Thank God for family and good potty friends.
Love,
Cristi
I have an appointment for Dec. 6 at the Mayo Clinic. I decided to go there since I actually communicated directly with the GI instead of just the scheduling desk and his apparent willingness to work with as endocrinologist. And It's closer to my neck of the woods. I am trying to keep my expectations in check. My GI here wants to do another colonoscopy and I thought if I am going to go through testing again I want it to be with someone who is familiar with MC and what it's symptoms are if all of mine are MC. Plus I remember my Gyno saying that when she went to remove my appendix she couldn't find it and had to go "digging" around. I want to be sure everything was put back where it belongs.
The thyroid symptoms are better..heart racing is mostly gone, panicy feelings are mostly gone and odd muscle twitches and weakness are gone. I still get very hungry and need to eat a lot...I haven't lost any weight this month though...so that's a start.
Polly...I took a hair analysis to check my mineral levels...and they came back very low. Dr. Alexander said that trying to absorb nutrients in a compromised digestive system is a slow process so they give me minerals and amino acids through an IV....helping the body help itself. I don't know much about the colonics....will keep this in mind as a very last resort.I wish the Johns Hopkins had worked out just so I could meet you and give you a big hug. When I am better I will come to a potty people party and give everyone a hug.
Joanna...I get the herbs in a week after I take an ACTH stimulation test next Monday. I think it is a mixture of different herbs. Chinese medicine is over 4 thousand years old and it's interesting to read the different descriptions of illnesses that we now have names for. They have different herbs for different kinds of digestive issues. I'll know more in a week and will let you know.
Hi Janet...I saw that Oprah show too. I'm glad people are finally getting comfortable talking about poop. I passed hard marbles all my life and didn't know that wasn't normal.
Thanks for the hugs Shirley. My Mom is coming out to stay with our son in December. He's old enough to stay by himself but i would be less worried about him if I knew she was here.
I'll keep you all posted. Thank God for family and good potty friends.
Love,
Cristi
Morning Cristi,
Sounds like a good plan. Yes, I would also wait on the colonoscopy - in case Mayo wants to repeat it. Another thought......maybe you should hold off on any additional treatments/supplements/herbs just now (other than the methimazole and Entocort). Since you will probably be undergoing lots of testing at Mayo, it might be best for you to be at a "baseline" so that they will be more likely to pick up existing problems. IMHO. Taking "extras" now might give false values on tests, and I know you want to get as much as possible out of the Mayo visit.
The mineral deficiencies are interesting. If I remember correctly, minerals are absorbed in the small intestine (actually, virtually all nutrients are absorbed there), but your fecal fat test was normal, indcating no malabsorption in the small intestine. So I wonder why you are low in minerals? (By minerals, they usually mean calcium, iron, phosphorus, copper, zinc).
What is the accuracy of the hair analysis test vs. blood tests for mineral levels, do you know? (I don't). I don't know much about IV minerals, but I would worry about vitamin excess, which can be even more dangerous as vitamin deficiency. It might be best to check mineral BLOOD levels before going the IV route, IMHO. The levels in hair, after all, reflect times past and not what is happening in the body right this minute.
Glad to hear that the thyroid is in much better control. I'm sure that is a relief.
Interesting about the GYN and appendix. Maybe you have adhesions in there from all that rooting around which have been contributing to your GI problems.
Yes, I am sorry you won't be coming to MD. By the way, you sound like a native - how did you know that the correct term is "the Hopkins"? Most people don't know that! I know we will meet one of these days - perhaps at a Potty People gathering as you mentioned. You won't believe how much fun it is to meet kindred souls!
How old is your son? I have one boy also - age 19. He's just starting to be more fun to be around. LOL!
Love,
Polly
Sounds like a good plan. Yes, I would also wait on the colonoscopy - in case Mayo wants to repeat it. Another thought......maybe you should hold off on any additional treatments/supplements/herbs just now (other than the methimazole and Entocort). Since you will probably be undergoing lots of testing at Mayo, it might be best for you to be at a "baseline" so that they will be more likely to pick up existing problems. IMHO. Taking "extras" now might give false values on tests, and I know you want to get as much as possible out of the Mayo visit.
The mineral deficiencies are interesting. If I remember correctly, minerals are absorbed in the small intestine (actually, virtually all nutrients are absorbed there), but your fecal fat test was normal, indcating no malabsorption in the small intestine. So I wonder why you are low in minerals? (By minerals, they usually mean calcium, iron, phosphorus, copper, zinc).
What is the accuracy of the hair analysis test vs. blood tests for mineral levels, do you know? (I don't). I don't know much about IV minerals, but I would worry about vitamin excess, which can be even more dangerous as vitamin deficiency. It might be best to check mineral BLOOD levels before going the IV route, IMHO. The levels in hair, after all, reflect times past and not what is happening in the body right this minute.
Glad to hear that the thyroid is in much better control. I'm sure that is a relief.
Interesting about the GYN and appendix. Maybe you have adhesions in there from all that rooting around which have been contributing to your GI problems.
Yes, I am sorry you won't be coming to MD. By the way, you sound like a native - how did you know that the correct term is "the Hopkins"? Most people don't know that! I know we will meet one of these days - perhaps at a Potty People gathering as you mentioned. You won't believe how much fun it is to meet kindred souls!
How old is your son? I have one boy also - age 19. He's just starting to be more fun to be around. LOL!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Polly,
That makes a lot of sense to not start any new meds or herbs before the Mayo appointment.
I didn't research the accuracy of the hair analysis test vs. blood tests for mineral levels. I have never tolerated oral vitamins very well anyway and they said this was a better way to get them when your digestive system is messed up. At first they wouldn't tell me what was in the IV, but I refused to take it unless they did, so they showed me the different dosages and none of them were crazy high doses of the minerals.. in fact they said I wouldn't absorb high doses all at once..better to take smaller doses once a week or so....so I was okay with it.
I'm concerned as well about the possible adhesions or scar tissue that could be causing problems from the surgery. I'm not sure what if anything can be done about those...hopfully they will at the Mayo visit.
I don't know how I knew it was called the Johns Hopkins...I grew up in Ohio....so a little closer to you than I am now. Maybe our daughter looked there on her college tour.
Our son is 16. We have always been close...he went through adolescense late so I got to enjoy his company for longer than most. Now I am lucky if he says two words to me.LOL Words are being generous...grunts are more like it. He is now loving his independence. I hear they need to separate from mom to grow into a man...so I'm trying not to take it personally, but I'm glad to hear it starts to turn around later on.
Thanks so much for all your help. I am so looking forward to the day when I can meet all of you.
Love,
Cristi
That makes a lot of sense to not start any new meds or herbs before the Mayo appointment.
I didn't research the accuracy of the hair analysis test vs. blood tests for mineral levels. I have never tolerated oral vitamins very well anyway and they said this was a better way to get them when your digestive system is messed up. At first they wouldn't tell me what was in the IV, but I refused to take it unless they did, so they showed me the different dosages and none of them were crazy high doses of the minerals.. in fact they said I wouldn't absorb high doses all at once..better to take smaller doses once a week or so....so I was okay with it.
I'm concerned as well about the possible adhesions or scar tissue that could be causing problems from the surgery. I'm not sure what if anything can be done about those...hopfully they will at the Mayo visit.
I don't know how I knew it was called the Johns Hopkins...I grew up in Ohio....so a little closer to you than I am now. Maybe our daughter looked there on her college tour.
Our son is 16. We have always been close...he went through adolescense late so I got to enjoy his company for longer than most. Now I am lucky if he says two words to me.LOL Words are being generous...grunts are more like it. He is now loving his independence. I hear they need to separate from mom to grow into a man...so I'm trying not to take it personally, but I'm glad to hear it starts to turn around later on.
Thanks so much for all your help. I am so looking forward to the day when I can meet all of you.
Love,
Cristi
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kate_ce1995
- Rockhopper Penguin
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- Location: Vermont
Christi,
It sounds like this last month has started some improvement for you! Perhaps you have turned that corner you have been waiting for.
Good luck with your trip to Mayo. I've always wondered how adhesions affect our guts. I certainly had plenty just from my endometriosis (my pelvis was completely stuck together), and I know that any time you have surgery, more adhesions form as part of the healing process. A good question for a well informed doc (my GI was useless and said it would have no effect, but he didn't believe MC was real either so I don't trust a lot that he told me).
Katy
It sounds like this last month has started some improvement for you! Perhaps you have turned that corner you have been waiting for.
Good luck with your trip to Mayo. I've always wondered how adhesions affect our guts. I certainly had plenty just from my endometriosis (my pelvis was completely stuck together), and I know that any time you have surgery, more adhesions form as part of the healing process. A good question for a well informed doc (my GI was useless and said it would have no effect, but he didn't believe MC was real either so I don't trust a lot that he told me).
Katy
Hi Katy,
I can't imagine a GI dismissing the effects of endometriosis...well I guess I can after my last GI appointment. I had a wierd thing happen last week...one of the internal ropes around my scar released. It's been ichy ever sense so I'm hoping it's healing....so maybe some of those adhesions heal after a while.
Thanks for the good luck wishes.
Love,
Cristi
I can't imagine a GI dismissing the effects of endometriosis...well I guess I can after my last GI appointment. I had a wierd thing happen last week...one of the internal ropes around my scar released. It's been ichy ever sense so I'm hoping it's healing....so maybe some of those adhesions heal after a while.
Thanks for the good luck wishes.
Love,
Cristi
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MaggieRedwings
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