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Question: Where I'm really at when "Getting better"

 
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virginianaughton

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Joined: 19 Feb 2016

Posts: 8
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2017 Nov 22 - 4:45 AM


Food Intolerances : working on it

PostPosted: Thu Feb 25, 2016 12:21 pm    Post subject: Question: Where I'm really at when "Getting better" Reply with quote

I am a Newbie (diagnosed end January 2016). I feel lucky considering how this disease can manifest. My symptoms are much better after self-imposed diet of no gluten, oats, soy, diary, eggs and two 1.2 gm tabs of Lialda a day. Poop is nearly normal, 1-2 a day. I don't want to get too much ahead of myself but I want to understand the nature of this beast. Is bowel urgency a phase or can I expect to always have to deal with poop emergencies? What about traveling?. Right now I have to carefully coordinate talking a walk never mind going out, getting on public transportation. Does anyone have success using a cup of coffee in order to venture out into the world "on empty'? Is that a bad idea? I also want to know what "remission" means if I am able to eventually achieve this. A person in remission would be advised to continue taking their meds? Consistency and urgency become normal? Most foods -other than gluten- are tolerated in remission? Thanks for helping me think through these issues. Thanks for maintaining such a helpful, important site.
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Gabes-Apg
Emperor Penguin
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Joined: 21 Dec 2009

Posts: 7216
User's local time:
2017 Nov 22 - 8:45 PM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Thu Feb 25, 2016 1:08 pm    Post subject: Reply with quote

there is a discussion in the main message board last week where someone asked 'what is remission'

I have copied some of the replies from that post


Gabes said
It means different things to different people
For me it is majority of days with minimal symptoms.

there are quite a few that with the right diet and lifestyle changes, that have no symptoms for many years
there are some that as they have multiple heath issues (like me ) remission is majority of days with minimal symtpoms
and there are a rare few that despite every effort, continue to have mild symptoms more days than not.

keep things realistic, poop wont be perfect every day. A change in water supply or change in routine can be enough to cause changes.


Erica said
I agree with Gabes...
Remission means so many different ways to many....I go along doing ok (and this is after healing for almost 9 months now) and then it might be a mild stress that sets me off, but luckily now days the bathroom adventure only lasts a few hours and not days.


I added this a few days later after listening to a podcast;

one thing to keep in mind - being in remission doesnt mean you have 'got rid of' or 'fully healed' MC.
MC is in us for life. we cant exterminate it or eradicate it totally.

Another element of remission is that we are at peace with living with MC.
We know it is there, we know its triggers, we know our limits physically, mentally, emotionally.
We know how to socialise, travel, get through tough days at work or family gatherings.
We understand the messages from our body to know if the digestion is going well enough to have a treat of eating out or to have some sometimes type foods.
We know the days that we need keep our meals bland and easy and rest a bit more
we have our safe products, our shopping and cooking routine sorted and life 'flows' - we are not overthinking too much.


Re Medication: For some it means low dosage medication - especially for stressful events or travelling. Remission is what works for you!

Re Urgency: When I am having a bad day, the urgency returns. there is a certain 'niggle' that lets me know that I have about 15 minutes to find a toilet, and that the poop will be a bit messy. I can go weeks and not have this issue and then have a day or so of it and then it goes again.

What foods you can add back in - is very individual.
It depends on so many factors
- what other health issues you may have,
-what stress levels of your life are like,
-what your supplement protocol is like (ie can you maintain good Vit D and magnesium levels)
- how well your body copes with inflammation and heals from it.
We are all very very different, and we go through different stages. Those under the age of 40 will heal better and quicker than those over the age of 60.

Hope this helps...
_________________
Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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brandy
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Rockhopper Penguin
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Joined: 16 Oct 2011

Posts: 1955
User's local time:
2017 Nov 22 - 4:45 AM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Thu Feb 25, 2016 2:40 pm    Post subject: Reply with quote

Hi Virginia,

Short reply, but for me remission means no urgency and eating a broad category of foods other than gluten and dairy. It took me years to get to the point of eating a broad category of foods. I've been off of meds for years but they were helpful very early on. i.e. staying on meds is not required to get to remission and many folks on the board never go on meds but I found Entocort helpful in the early stages.

Travel is doable but it takes practice and preparation to minimize the stress.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30725
User's local time:
2017 Nov 22 - 4:45 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Feb 25, 2016 3:56 pm    Post subject: Reply with quote

Hi Virginia,

Welcome to our Internet family. While many of us are able to return to normal (or near normal) bowel movements (BMs), and no more urgency that normal, we do so by maintaining our treatment forever. Remember that even "normal" people sometimes have very urgent BMs if they eat something they shouldn't, or they're involved with a very stressful event.

In general, some of the foods that cause our immune system to produce antibodies, (primarily gluten, dairy, and soy but not all of us are sensitive to all of those foods) have to be avoided 100 % forever in order to remain in remission. But as Brandy pointed out, we may eventually be able to reintroduce many of the other foods back into our diet if we are careful with our diet early on so that our digestive system heals well. Many foods such as raw vegetables and fruit will eventually be safe for most of us. After we do some healing, we can usually tolerate salads again, and citrus fruits and juices foods that are off limits to most of us while we are recovering.

Most of us are able to heal well enough that we are able to pretty much do whatever we want (travel, etc.) and not worry about "accidents" or uncommon urgency, so long as we remember that we have to be very careful about what we eat, and minimize stress. In some of the more difficult cases (which can involve many food sensitivities) some members find it helpful or necessary to remain on a low-dose maintenance program where in addition to a restricted diet they take a budesonide capsule at some interval that's sufficient to maintain control (which can range from 1 capsule per day to maybe 1 every tenth day).

Again, welcome aboard and please feel free to ask anything.

Tex
_________________
cowboy

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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virginianaughton

unknown IP

Joined: 19 Feb 2016

Posts: 8
User's local time:
2017 Nov 22 - 4:45 AM


Food Intolerances : working on it

PostPosted: Thu Feb 25, 2016 4:35 pm    Post subject: Reply with quote

Thank you for the quick replies.
I have a lot to learn. I am starting to get how to navigate on this forum.
I am so appreciative of the time and information shared.
I didn't realize budesonide capsules could be taken at different intervals on a low-dose maintenance.
Is this also true of mesalamine?
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30725
User's local time:
2017 Nov 22 - 4:45 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Thu Feb 25, 2016 5:29 pm    Post subject: Reply with quote

Virginia wrote:
Is this also true of mesalamine?


To some extent, but most maintenance doses are still fairly substantial I'm not sure that anyone has actually experimented with low doses, because most people just follow the label, and mesalamine is not as popular as it once was, since budesonide has become popular for treating MC. So I suppose the real answer to your question is, "We really don't know".

Tex
_________________
cowboy

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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