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I have seen an ND or 2 in the past. They do seem to have a tendency to prescribe numerous supplements which can add up to a lot of money. I have not found nd's to be very helpful. In fact what I concluded a while back was that ND's, like MD's, seem rather set in their ways with similar one size fits all protocols, the only difference being that they use a different paradigm, with supplement protocols rather than prescription medicine protocols. I understand the need to have someone who will order tests but I find the info I get on this forum much more useful than anything I have got from either an ND or an MD. I was told to take Endefen too (this was about 10 years ago). I just looked it up and it contains soy. I would be very careful and defer to the experts here rather than to the ND. I wish this were easier for you.
Jean
Patience ?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
Jean, thank you for your quick search on the Endefen. I have never been good at research and never thought of looking it up. There is a lot to read about and research - turning into a full time job. 
In time I'm sure I'll get better at it.
Thanks again.
Paula
In time I'm sure I'll get better at it.
Thanks again.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
HI Paula,
I'm sorry that you are going through a rough time and for the shock you must have felt when your husband offered his solution. Men just do tend to want to fix things, in my experience. And especially for a loved one. I've had to ask my husband to STOP asking me if I'm okay. After about the 1000th time, it starts to wear on me.
I've not taken the supplements you describe but 30 supplements seem like a burden on an already distressed system. Typically when I feel I am struggling I drop back to keeping things more simple-- simpler foods, fewer vitamins-- back to the basics of managing LC until I see some consistency. I'd say 'trust your instincts'.
Carol
I'm sorry that you are going through a rough time and for the shock you must have felt when your husband offered his solution. Men just do tend to want to fix things, in my experience. And especially for a loved one. I've had to ask my husband to STOP asking me if I'm okay. After about the 1000th time, it starts to wear on me.
I've not taken the supplements you describe but 30 supplements seem like a burden on an already distressed system. Typically when I feel I am struggling I drop back to keeping things more simple-- simpler foods, fewer vitamins-- back to the basics of managing LC until I see some consistency. I'd say 'trust your instincts'.
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
Paula - It's just too easy to blame stress. I had someone (not a husband) try to suggest that stress was a major factor and it just felt dismissive to me. I hope your husband can begin to see things differently. I know that mostly I just don't discuss what's going on with anyone (I live alone so its easier for me to do that) because people just don't seem to be able to get it. It is so good to have this place to come where people do get.
Jean
Jean
Jean, I have to respectfully disagree here about the stress factor. I believe my MC was triggered by stress. It started the weekend I found out a best friend was dying. I am one of the lucky ones. I was diagnosed quickly and modified my diet quickly and attained remission relatively quickly. I've done pretty well for a couple of years. This last week I have been under a much higher amount of stress than usual (I always have quite a bit it seems). The last couple of days it's been like a couple of years ago when I was first diagnosed. Huge pain, huge D. I forgot how bad this can be. I can't identify any significant food factors....it has to be the stress. I think some of us just internalize it to our guts. Deb
Deb - I didn't mean to imply that stress can't play a role in MC or even be a major trigger like it is for you. It's only that my experience has been that when people have suggested to me that my problem lies in stress they tend to be implying that if I could only learn to relax it would go away. I know that for me that certainly isn't the case. So if someone persists in this position rather than deferring to my greater wisdom concerning my own body it feels dismissive to me. Also I wanted Paula to know that I understood how her husband's remarks could feel hurtful since I had experienced something similar.
Jean
Jean
Hi Paula,
Sorry you are having a rough week. I'm not a medical person but when I was in big flare (before) I found this site I eliminated all supplements. I knew it was risky to eliminate calcium and at that point I was clueless about what vitamin D is. For three little "situations" I've had since (3 day kind of things) I eliminated all supplements. I was off of all supplements during big flare for like an 8 week period and then got to softserve. I'm not sure I would recommend that for very long in that I was kind of weak, run down and dizzy at the end of the period but it did get me to permanent softserve. This was before I found this website and was just kind of random....i.e. no one told me to do it. Due to the calcium and vitamin D situation there are negatives to eliminating supplements for very long.
I think loved ones in our life want us to feel better and get frustrated at the slow pace of healing that this disease takes for a lot of us (like me.)
Brandy
Sorry you are having a rough week. I'm not a medical person but when I was in big flare (before) I found this site I eliminated all supplements. I knew it was risky to eliminate calcium and at that point I was clueless about what vitamin D is. For three little "situations" I've had since (3 day kind of things) I eliminated all supplements. I was off of all supplements during big flare for like an 8 week period and then got to softserve. I'm not sure I would recommend that for very long in that I was kind of weak, run down and dizzy at the end of the period but it did get me to permanent softserve. This was before I found this website and was just kind of random....i.e. no one told me to do it. Due to the calcium and vitamin D situation there are negatives to eliminating supplements for very long.
I think loved ones in our life want us to feel better and get frustrated at the slow pace of healing that this disease takes for a lot of us (like me.)
Brandy
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Paula
I am one that has used natural therapies and supplements for MC. Mindful, I was using the treatments and various supplements for 10 years or more before Dx.
One thing that we have identified is that the ‘typical’ approach that a naturopath, or natural therapist would use for IBD’s did not work for MC. (this applies to treatments as well as supplements)
(I cant give you a technical reason why other than what I wrote in my post a few weeks ago about immune system and inflammation - it is like MC reprograms the immune system)
One thing that has worked is (using Ant’s analogy) is softlee softlee catchee monkey (slow, gentle and steady will bring results).
Like conducing a major renovation on a house, you cant fix all things at the one time, there has to be a plan, plumbing done before you affix tiles, repairs and preparation to walls before you paint.
I have found MC Management and healing to be very similar, deal with one issue, one symptom at a time, (be patient) and when things have improved then you can move to the next task.
I have had many people (mostly co-workers) that have asked, isn’t there a pill you can take to get rid of it?? it can be mentally draining dealing with the questions and the advice from people that don’t understand.
Don’t feel you have to justify your decisions about your MC management plan to anyone (easier said than done I know…) just like most new people have to accept when they join this group that there is no quick fix or short cut, we have to help our families, friends etc accept that fact as well.
If our digestion is inflamed and not absorbing nutrients from foods, IMO you wont absorb that much if any of the ingredients of the supplements.
IMO the first goal has to be minimise the inflammation and get the digestion “relatively” happy (where there are more good days than bad ones).
Yes, there will be ups and downs during this process, but if you stick with it you will make progress. Like some have mentioned, for me as well stress has been a major trigger, coming up with a MC eating and management plan that suits my lifestyle, work schedule and budget was important, I spent the first 12 months focussing on eating ingredients that helped to heal the leaky gut and reduced inflammation.
Part of the balance is having the ingredients and the eating plan figured out so you are relaxed. You know you have the next couple of meals figured out.
Even now, 2.5 years post DX and the MC is technically in remission, my eating plan is the same as what it was 2 years ago, quite plain, small base of ingredients, most of my meals are ‘mashed’ low inflammation, low histamine ingredients that are easy to digest.
Yes …there are times here and there I miss eating out, or after a long day at work I wish I could grab take away on the way home or I see others eating ingredients that pre MC were my favourites and I haven’t had them since Dx …. There comes a time in the process where wellness and minimal symptoms means way way more….
I have got my digestion happy enough, and my eating plan working well that the sub lingual supplements I was taking daily 6 months ago (Vit D3 and Zinc) I don’t need to take.
Linked to the title you gave this thread ‘patience’ there is also ‘tenacity’ tenacity towards your eating plan, your attitude and for the sacrifices and changes you will make……
I am one that has used natural therapies and supplements for MC. Mindful, I was using the treatments and various supplements for 10 years or more before Dx.
One thing that we have identified is that the ‘typical’ approach that a naturopath, or natural therapist would use for IBD’s did not work for MC. (this applies to treatments as well as supplements)
(I cant give you a technical reason why other than what I wrote in my post a few weeks ago about immune system and inflammation - it is like MC reprograms the immune system)
One thing that has worked is (using Ant’s analogy) is softlee softlee catchee monkey (slow, gentle and steady will bring results).
Like conducing a major renovation on a house, you cant fix all things at the one time, there has to be a plan, plumbing done before you affix tiles, repairs and preparation to walls before you paint.
I have found MC Management and healing to be very similar, deal with one issue, one symptom at a time, (be patient) and when things have improved then you can move to the next task.
I have had many people (mostly co-workers) that have asked, isn’t there a pill you can take to get rid of it?? it can be mentally draining dealing with the questions and the advice from people that don’t understand.
Don’t feel you have to justify your decisions about your MC management plan to anyone (easier said than done I know…) just like most new people have to accept when they join this group that there is no quick fix or short cut, we have to help our families, friends etc accept that fact as well.
If our digestion is inflamed and not absorbing nutrients from foods, IMO you wont absorb that much if any of the ingredients of the supplements.
IMO the first goal has to be minimise the inflammation and get the digestion “relatively” happy (where there are more good days than bad ones).
Yes, there will be ups and downs during this process, but if you stick with it you will make progress. Like some have mentioned, for me as well stress has been a major trigger, coming up with a MC eating and management plan that suits my lifestyle, work schedule and budget was important, I spent the first 12 months focussing on eating ingredients that helped to heal the leaky gut and reduced inflammation.
Part of the balance is having the ingredients and the eating plan figured out so you are relaxed. You know you have the next couple of meals figured out.
Even now, 2.5 years post DX and the MC is technically in remission, my eating plan is the same as what it was 2 years ago, quite plain, small base of ingredients, most of my meals are ‘mashed’ low inflammation, low histamine ingredients that are easy to digest.
Yes …there are times here and there I miss eating out, or after a long day at work I wish I could grab take away on the way home or I see others eating ingredients that pre MC were my favourites and I haven’t had them since Dx …. There comes a time in the process where wellness and minimal symptoms means way way more….
I have got my digestion happy enough, and my eating plan working well that the sub lingual supplements I was taking daily 6 months ago (Vit D3 and Zinc) I don’t need to take.
Linked to the title you gave this thread ‘patience’ there is also ‘tenacity’ tenacity towards your eating plan, your attitude and for the sacrifices and changes you will make……
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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humbird753
- Rockhopper Penguin
- Posts: 1014
- Joined: Mon Nov 28, 2011 4:44 pm
- Location: Wisconsin
I want to thank each of you for your support. It means a lot. It would probably be less stressful on me if I avoid trying to make people understand. Although, I do think at least my husband should become more educated on what this is about.
I was pretty sure I was going to refuse supplements, but needed to run that by others to see what kind of responses I would get. I am glad to hear others' opinions are lining up with what my "gut" has been telling me about this.
Cory, I have decided I will eliminate beef from my diet since this is the only undigested meat I have been able to detect. It did give me a "what now" moment.
Jean, Cory, Leah, Kitty, Brandy, Deb and Gabes - It is true that we have to be patient - and slow and steady wins the race here. I know I am not alone in this. Your thoughtful comments are all appreciated.
Kitty - I am sorry to hear about the comment a family member made to you - "just wear depends"! That was thoughtless, and again shows how much people around us understand MC.
Paula
I was pretty sure I was going to refuse supplements, but needed to run that by others to see what kind of responses I would get. I am glad to hear others' opinions are lining up with what my "gut" has been telling me about this.
Cory, I have decided I will eliminate beef from my diet since this is the only undigested meat I have been able to detect. It did give me a "what now" moment.
Jean, Cory, Leah, Kitty, Brandy, Deb and Gabes - It is true that we have to be patient - and slow and steady wins the race here. I know I am not alone in this. Your thoughtful comments are all appreciated.
Kitty - I am sorry to hear about the comment a family member made to you - "just wear depends"! That was thoughtless, and again shows how much people around us understand MC.
Paula
Paula
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
"You'll never know how strong you are until being strong is the only choice you have."
"Life is not about waiting for the storm to pass... It's learning to dance in the rain."
One of the "unthoughtful" things my mother-in-law said to me recently ( who I love dearly) was "boy, you are hard to have over for a meal now". I guess it's true, but I hate being a burden on people. This Mother's Day, we are going to a park for a family BBQ and it does make me feel bad that most of the meal has to be centered around my disease. I am still trying to get use to the idea that this is my life now and I guess my extended family is still getting use to it.
Leah
Leah
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Deanna in CO
- Adélie Penguin
- Posts: 220
- Joined: Mon Feb 20, 2012 2:16 pm
- Location: Colorado
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
regarding peoples reactions.....
generally what people say (or in some cases dont say) is related to their fears....
they may think they could never handle the same situation
or that they could not willingly give up their favourite food or drink...
or that they could not handle the day with so many unknowns and variables
in a society where there is a med to fix everything, the concept that there is no quick fix is hard to comprehend for some
I look at it that without the knowledge of what MC is really like, their statements are basically air.... nothing...
generally what people say (or in some cases dont say) is related to their fears....
they may think they could never handle the same situation
or that they could not willingly give up their favourite food or drink...
or that they could not handle the day with so many unknowns and variables
in a society where there is a med to fix everything, the concept that there is no quick fix is hard to comprehend for some
I look at it that without the knowledge of what MC is really like, their statements are basically air.... nothing...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Leah, I understand your not wanting to feel like a burden. I try really hard to avoid that too. I've gotten where I just prefer to do the majority of the cooking and that eliminates a lot of that but I realize that's not for everyone. I happen to like to cook. I just make sure that I bring something I like when going to, especially, holiday dinners. I know that meat (for me at least) should be okay. Likewise, potatoes are usually a safe bet but I double check that. I then supplement with a side dish and/or a dessert that I know I can eat and usually am pretty content. I hate when my family feels guilty that I "can't" eat something. I assure them I am okay with it and I really am. Our family has become increasingly difficult to find foods for everyone. My sister and daughter get migraines (I used to) so they have a whole bunch of foods they avoid. My daughter eats pescaterian (veggie plus fish/seafood) and is allergic to tree nuts. We just try to have something for everyone and it seems to work.