Hello All,
After reading some of the posts, I am getting more frustrated - not with the posters, but my GI docs. I just feel like I am getting worse and not better. I've tried to adjust my diet - still no relief. It seems like the more I do to help, the more I see my GI, or DO - the worse I get. I have some food journals, nothing consistent, there were times when I could eat almost anything GF, now, if I just have plain chicken I get uncomfortable. If I eat carrots, no matter how cooked, I just don't digest them.
I did find out that I not only have Celiac, I have MC - 2 out of my 3 GI's said basically, there is nothing they can do for me. My GI now - the more helpful one says that I have IBS - which I just read a bunch of posts on how that doesn't really exist. I was also told by the GI at Lahey Clinic that it could be MC and/or Refractory Sprue. I am on more meds now than I have ever been on - I take amitriptilin for depression and sleeping, Apriso for the MC Potassium because I just can't seem to absorb it, Xifaxan for the IBS/runs. My DO has me on UNDA drops to help detox my body, I don't know if its too much to be doing that while taking all these meds. I see a dietician, who is sweet, but I don't know how confident I am in her guidance. I know the financial stress that we are going thru doesn't help. I just wonder in the long run if all this is just simply stress related - maybe I just need massage therapy instead of drugs and taking out foods! I have such an emotional attachment to food, it's crazy! I am going to a support group and reading a book for that.
It's almost noon and I just don't feel like eating - last night I was up with nauseau, 3x with the runs at least. I think it was the macadamia nuts I ate, I tossed those!
Has anyone had success just taking out sugar from your diet? I found if I take out too much of my regular foods, I get so tired and winded, my blood pressure goes down and I'm sure my potassium levels too. I wonder if my body absorbs the potassium better with foods/drinks than with the supplements?
Sorry to go on and on - I just keep thinking, If I take out all this food I'll be fine, then it's just too hard on me, and it doesn't change things.
Enough, the sun is out here in Maine and I just need to enjoy that! Thanks for letting get all this out! I do so much better with writing than speaking!
Have a wonderful day!
Theresa
I feel so overwhelmed... I don't know where to turn...
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I'm sorry to hear about your frustration. There is nothing worse than doctors who give up on us. They should just quit their jobs while they are at it, because they are failing at their profession, not just failing you. How long have you taken Xifaxan? It's an antibiotic, and it could explain the changes you feel in reacting to foods you used to tolerate. Any time you alter the mix of your intestinal flora, you run the risk of getting worse results instead of better. Not to mention the risk of C.difficile-related diarrhea. Did you get pretty quick results from it at first? Do you take it all the time, or a couple weeks on and several weeks off?
Hi Zizzle,
I just started the Xifaxan last week - I am on a 2 week sprint - 3x a day. I see the other GI on the 10th, as well as the dietician. We will see, but I'm ready to just wean myself off the meds and just get on with my life. lol.
I know even my GI and dietician don't agree on the use of probiotics either. They say that most studies don't think it helps and may hurt. Yikes!
Sorry - I will get out of this slump, I just have to eat and see what happens.
THanks for your support Zizzle - you are the best!
Theresa
I just started the Xifaxan last week - I am on a 2 week sprint - 3x a day. I see the other GI on the 10th, as well as the dietician. We will see, but I'm ready to just wean myself off the meds and just get on with my life. lol.
I know even my GI and dietician don't agree on the use of probiotics either. They say that most studies don't think it helps and may hurt. Yikes!
Sorry - I will get out of this slump, I just have to eat and see what happens.
THanks for your support Zizzle - you are the best!
Theresa
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Theresa
firstly here is a hug as you sound like you need one, then take a few deep breathes
whether you are using meds, meds and diet, diet or other treatments, it takes time for your digestion to settle down, for the inflammation to abate and for the cells of your digestion to heal and to function normally. with that time it also needs patience, diligence and calm.
stress is one of my main triggers, so worrying about food, or reactions is not good.
majority of the people here agree that there are not many in the medical profession that are good at supporting a MC patient, that is why this forum is here and why there are so many of us here sharing our stories, the informtion and support here has got people well and into remission
my suggestion is go back to the start (this is what I did) treat your digestion system as if you are starting again, like a baby going from milk to solids.
have very small meals (6 or 7 small meals) of gooey consistency with one or two ingredients, like a baby the first BM may be horried but then it should settle down over 24 hours. Stick to minimal ingredients for a day or two and then gradually add new ingredients. if the BM's become D, go back a few steps, ie reduce the amount of ingredients and go back to the stage where you were ok
many here when in flare do have a meals based things like banana, rice, apple sauce, tea.
just because the first or the second BM after eating an ingredient is D does not mean that you cant tolerate it, have a small amount of a new ingredient 3 or 4 times, as it takes time for your body to accept it.
frequently when i am not well, i will eat gooey rice with an egg (the rice is made with home made stock)
i know others have the gooey rice with maple syrup and cinnamon etc
eating a meal that is a bit easier to digest helps your digestion system, it does not have to work so hard and it helps to reduce the inflammation.
I too loved food, i have been an emotional eater all my life (why else would i seek out and pay a fortune rice milk chocolate) Adjusting to my MC management diet has meant alot of sacrifices, giving up favourite ingredients or cooking styles, only eating out very occaisionally, but wellness means more to me than being able to eat ice cream.
some of my friends have said, 'i couldnt stop drinking wine or I couldnt stop eating ice cream' and sometimes my reply is, when you have D 10 - 20 times a day you will be surprised what you will be willing to cut out of your diet !
my current step is that i am cutting out sugar from my diet, in a week i have adjusted to 1/3 of the intake of coffee (where i would have 2.5 sugars) now i will start to reduce the amount of sugar in the coffee,
i didnt go cold turkey, the same as introducing ingredients eliminating an ingredient gradually will help to avoid withdrawal headaches etc
Adjusting to life with MC is not easy, it took me 9 months to go from chronic D to having my ingredient base figured out and now symptoms are intermittant.
i can assure you that the outcome is worth the effort and sacrifice....
dont let the current situation sway you to think that it all too hard, there are loads of people here that will help you.
firstly here is a hug as you sound like you need one, then take a few deep breathes
whether you are using meds, meds and diet, diet or other treatments, it takes time for your digestion to settle down, for the inflammation to abate and for the cells of your digestion to heal and to function normally. with that time it also needs patience, diligence and calm.
stress is one of my main triggers, so worrying about food, or reactions is not good.
majority of the people here agree that there are not many in the medical profession that are good at supporting a MC patient, that is why this forum is here and why there are so many of us here sharing our stories, the informtion and support here has got people well and into remission
my suggestion is go back to the start (this is what I did) treat your digestion system as if you are starting again, like a baby going from milk to solids.
have very small meals (6 or 7 small meals) of gooey consistency with one or two ingredients, like a baby the first BM may be horried but then it should settle down over 24 hours. Stick to minimal ingredients for a day or two and then gradually add new ingredients. if the BM's become D, go back a few steps, ie reduce the amount of ingredients and go back to the stage where you were ok
many here when in flare do have a meals based things like banana, rice, apple sauce, tea.
just because the first or the second BM after eating an ingredient is D does not mean that you cant tolerate it, have a small amount of a new ingredient 3 or 4 times, as it takes time for your body to accept it.
frequently when i am not well, i will eat gooey rice with an egg (the rice is made with home made stock)
i know others have the gooey rice with maple syrup and cinnamon etc
eating a meal that is a bit easier to digest helps your digestion system, it does not have to work so hard and it helps to reduce the inflammation.
I too loved food, i have been an emotional eater all my life (why else would i seek out and pay a fortune rice milk chocolate) Adjusting to my MC management diet has meant alot of sacrifices, giving up favourite ingredients or cooking styles, only eating out very occaisionally, but wellness means more to me than being able to eat ice cream.
some of my friends have said, 'i couldnt stop drinking wine or I couldnt stop eating ice cream' and sometimes my reply is, when you have D 10 - 20 times a day you will be surprised what you will be willing to cut out of your diet !
my current step is that i am cutting out sugar from my diet, in a week i have adjusted to 1/3 of the intake of coffee (where i would have 2.5 sugars) now i will start to reduce the amount of sugar in the coffee,
i didnt go cold turkey, the same as introducing ingredients eliminating an ingredient gradually will help to avoid withdrawal headaches etc
Adjusting to life with MC is not easy, it took me 9 months to go from chronic D to having my ingredient base figured out and now symptoms are intermittant.
i can assure you that the outcome is worth the effort and sacrifice....
dont let the current situation sway you to think that it all too hard, there are loads of people here that will help you.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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natythingycolbery
- Rockhopper Penguin
- Posts: 590
- Joined: Tue Aug 31, 2010 5:23 pm
- Location: York, United Kingdom
Hey hun, I just wondered if maybe your Anti-depressents might be adding to your MC symptoms? How long have you been on them?
'The more difficulties one has to encounter, within and without, the more significant and the higher in inspiration his life will be.' Horace Bushnell
Diagnosed with MC (LC) Aug 2010
Diagnosed with MC (LC) Aug 2010
Theresa,
You mentioned you went to Lahey? My GI is at the Mass General North Shore, I like him a lot (well when he returns my calls...) There is also a great Celiac Dr. in Boston that I used to go see but, I hate driving in there. Where are you located if you don't mind me asking??
With Celiac, it's very tough. In the begining I had a really hard time finding out what things were safe for me to eat. Maybe the nuts you ate had gluten in them? I know the nutritionist will def help out. Good Luck!
You mentioned you went to Lahey? My GI is at the Mass General North Shore, I like him a lot (well when he returns my calls...) There is also a great Celiac Dr. in Boston that I used to go see but, I hate driving in there. Where are you located if you don't mind me asking??
With Celiac, it's very tough. In the begining I had a really hard time finding out what things were safe for me to eat. Maybe the nuts you ate had gluten in them? I know the nutritionist will def help out. Good Luck!
Hi All,
I've been on the Anti-depressants since November or so, same time I started the Apriso, my GI put me on both. Before then I wasn't on any meds other than Potassium and birth control pills. I have D for over 8 yrs - Celiac diagnosis since 2003. MC diagnosis since Aug 2010.
I am in Southern Maine - my health ins is only for Maine - somehow we got the Lahey Dr covered, not sure how, I won't ask why, just grateful it was.
Thanks again! Theresa
I've been on the Anti-depressants since November or so, same time I started the Apriso, my GI put me on both. Before then I wasn't on any meds other than Potassium and birth control pills. I have D for over 8 yrs - Celiac diagnosis since 2003. MC diagnosis since Aug 2010.
I am in Southern Maine - my health ins is only for Maine - somehow we got the Lahey Dr covered, not sure how, I won't ask why, just grateful it was.
Thanks again! Theresa
sounds too me like you are on too many drugs at one time. It is best to try or take one thing at a time and see how your symptoms are while taking them.
Some drugs will make you worse.
Also, start a food diary to see what other foods are making you sick aside from Gluten. Nuts are very hard to digest. Try to stick with foods you would eat as if you had the flu, just for a week or so, and let your colon rest, and be sure to start the diary.
Good luck,
karen
Some drugs will make you worse.
Also, start a food diary to see what other foods are making you sick aside from Gluten. Nuts are very hard to digest. Try to stick with foods you would eat as if you had the flu, just for a week or so, and let your colon rest, and be sure to start the diary.
Good luck,
karen
Contraceptives have been known to cause reactions for many women with MC - even the transdermal patches are a problem in some cases.Theresa wrote:birth control pills. I have D for over 8 yrs
Due to the persistence of hormones, it can take a while for treatment changes to bring results, IOW, just stopping the treatment for a day or two may not be long enough to stop the D, if they are a problem - it can take weeks or months, in some cases.
I have to agree with Karen - as many drugs as you are taking, the odds are very high that one or more of them may be causing you to react. Drugs are a primary cause of MC, unfortunately.
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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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
For what it's worth, Teresa, Macadamia nuts will definitely cause me D every time!
I struggle so much with trying to get enough magnesium into my body as it really causes me D. Some people take gatorade ( 1glass or bottle a day) and it has potassium in it. Have you tried getting your potassium that way? I don't get D. from taking potassium but maybe it is bothering you. I keep thinking that if you are still reacting it must be something you are still ingesting.. either food, but just as likely, supplements or drugs. But you have to eat something, so I agree with Gabes, cutting back to the least number of ingredients you can until you quit reacting might be place to start. Or maybe try a rice protein drink with almond or rice milk for few days ? They have had success with putting people on these complete enteric drinks ( powder mixes) There is one called Absorb Plus, though it is very expensive.
I am sorry you are feeling so poorly, Teresa. I hope you get some improvement soon.
Linda
I wonder if my body absorbs the potassium better with foods/drinks than with the supplements?
I struggle so much with trying to get enough magnesium into my body as it really causes me D. Some people take gatorade ( 1glass or bottle a day) and it has potassium in it. Have you tried getting your potassium that way? I don't get D. from taking potassium but maybe it is bothering you. I keep thinking that if you are still reacting it must be something you are still ingesting.. either food, but just as likely, supplements or drugs. But you have to eat something, so I agree with Gabes, cutting back to the least number of ingredients you can until you quit reacting might be place to start. Or maybe try a rice protein drink with almond or rice milk for few days ? They have had success with putting people on these complete enteric drinks ( powder mixes) There is one called Absorb Plus, though it is very expensive.
I am sorry you are feeling so poorly, Teresa. I hope you get some improvement soon.
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
Theresa,
FWIW, my impression is, that you are geting far too many drugs at the same time. Once you are finished with the antibiotics, try to cut down on drugs as much as possible. Most people here are adopting the diet and entocort treatment as a long/short term remedy. Excess of drugs will most likely obcure the way out of MC, and will cause other long term problems because of high levels of toxicity.
As to the diet, you will have to discover your intollerances (look up in the diet info how to do it). In the meantime, avoid fiber and anything that causes you to react.
As to the stress/depression, it might be beneficial for you to read the book "Relaxation Revolution" by Herbert Benson, and try to adopt the relaxation/self healing techniques to enhance other elements of your healing strategy.
Best of luck
Marek
FWIW, my impression is, that you are geting far too many drugs at the same time. Once you are finished with the antibiotics, try to cut down on drugs as much as possible. Most people here are adopting the diet and entocort treatment as a long/short term remedy. Excess of drugs will most likely obcure the way out of MC, and will cause other long term problems because of high levels of toxicity.
As to the diet, you will have to discover your intollerances (look up in the diet info how to do it). In the meantime, avoid fiber and anything that causes you to react.
As to the stress/depression, it might be beneficial for you to read the book "Relaxation Revolution" by Herbert Benson, and try to adopt the relaxation/self healing techniques to enhance other elements of your healing strategy.
Best of luck
Marek
Awwww, Teresa,
You need a big hug.
It does appear that your docs are using a shotgun approach to treating you. When in fact, MC seems to respond best to a more limited, basic approach. One major landmine is the fact that so many meds/ supplements/herbs, and probiotics contain substances that we react to. As Gabes said, a soft, soothing, nonreactive diet can go a long way. Of course, you will have to accept the fact that your diet will be limited and boring for a while, maybe indefinitely, but I am here to tell you there is hope for the future. Once that gut settles down, you will be able to add in more foods. This can take months to a year or more. How about exercise? Are you able to? I find that it really helps my MC, because it reduces my stress/irritablity level.
And why do you have a problem with potassium? It is unusual and usually due to a medication causing one to lose it.
OK, here is my best advice: what is your intuition telling you? It sounds as if you feel that you need to SIMPLIFY. If so, go for it! Also, given your history and multiple intolerances, you might be a candidate for MRT (mediated release testing). Check out the forum on MRT for more info.
Hang in there.
Love,
Polly
You need a big hug.
It does appear that your docs are using a shotgun approach to treating you. When in fact, MC seems to respond best to a more limited, basic approach. One major landmine is the fact that so many meds/ supplements/herbs, and probiotics contain substances that we react to. As Gabes said, a soft, soothing, nonreactive diet can go a long way. Of course, you will have to accept the fact that your diet will be limited and boring for a while, maybe indefinitely, but I am here to tell you there is hope for the future. Once that gut settles down, you will be able to add in more foods. This can take months to a year or more. How about exercise? Are you able to? I find that it really helps my MC, because it reduces my stress/irritablity level.
And why do you have a problem with potassium? It is unusual and usually due to a medication causing one to lose it.
OK, here is my best advice: what is your intuition telling you? It sounds as if you feel that you need to SIMPLIFY. If so, go for it! Also, given your history and multiple intolerances, you might be a candidate for MRT (mediated release testing). Check out the forum on MRT for more info.
Hang in there.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
You all are so amazing and so supportive! I really appreciate it! I have a friend that is big into nutrition and the more holistic approach - she and I are going to have a chat this afternoon!
Well, to add to my issues, I need to see my regular Dr., because I probably have another bladder infection, I was up for 2 1/2 hrs last night peeing and trying to pee - I drank a quart of water, finally I had relief and could sleep!
I have been on potassium for 7 yrs - it was before I even started any other meds. The assumption is that due to leaky gut - I am not absorbing the potassium. I feel pretty good today.
Now, how do you all go about pulling things out of your diet - how do you know for sure what you are or are not reacting to?
I just started exercising this week - I do a 15min pilates/core/balance ball routine - works great on the abs! I also do a 15min stretch routine. I have been increasing my walk time with the dog. I need to start an evening routine of a 20min stretch/relaxation routine. I do feel in my heart that the more natural approach will be most effective. I really thought we had the answers.
You just don't know how much all this support and guidance helps me - when I check my email and see a message for this - I just feel so supported and cared for. I really, really appreciate it!
Thanks again
Theresa
Well, to add to my issues, I need to see my regular Dr., because I probably have another bladder infection, I was up for 2 1/2 hrs last night peeing and trying to pee - I drank a quart of water, finally I had relief and could sleep!
I have been on potassium for 7 yrs - it was before I even started any other meds. The assumption is that due to leaky gut - I am not absorbing the potassium. I feel pretty good today.
Now, how do you all go about pulling things out of your diet - how do you know for sure what you are or are not reacting to?
I just started exercising this week - I do a 15min pilates/core/balance ball routine - works great on the abs! I also do a 15min stretch routine. I have been increasing my walk time with the dog. I need to start an evening routine of a 20min stretch/relaxation routine. I do feel in my heart that the more natural approach will be most effective. I really thought we had the answers.
You just don't know how much all this support and guidance helps me - when I check my email and see a message for this - I just feel so supported and cared for. I really, really appreciate it!
Thanks again
Theresa