Back after 7 year remission

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karenswans
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Back after 7 year remission

Post by karenswans »

Hi all!

You helped me greatly 7 years ago when I was diagnosed with LC. I used diet to get my symptoms under control, and over time I was able to greatly expand my diet to almost pre-diagnosis levels.

Well, I'm in a flare now that has been ongoing for a week. I was so happy to see that diet changes are now recommended by mainstream medical outlets like the Mayo clinic! How helpful for people who are newly diagnosed (back when I was diagnosed this support group was the only place recommending dietary changes).


I've dropped to my "crisis" diet which is bone broth, chicken breast, well cooked veggies, and jasmine rice. Unfortunately it hasn't fixed me up as quickly as last time, so I'm looking to see what other things I might do. I'm considering trying magnesium and Vit. D3, and I'll look at replacing the chicken as I know many people react to it (I didn't before).

Thank you for still being here!

-Karen
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Gabes-Apg
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Post by Gabes-Apg »

Hi there, welcome back and sympathies for your current flare.


Has anything changed in the past 6 months, not just food wise, but lifestyle, meds, stress etc??

Has there been hormone changes? Or any other changes body wise?
Gabes Ryan

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Post by tasmtairy »

Unbelievable, after 7 years, I'm just in year 1 and not as much consistency as I'd like. I'm curious too. Looking for long range remission, once I reach it.

Glad you are back! Hopefully you'll get some answers from the "oldies" :grin:
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tex
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Post by tex »

Hi Karen,

Welcome back.

Like Gabes, I'm also curious as to whether there have been any changes in your lifestyle, meds, supplements, etc., during the previous 6 months.

I agree with you that it might pay to try something different in case you've developed a sensitivity to chicken. No one reacts to turkey or lamb, for example. It's fairly rare, but a few people react to rice. I don't believe developing additional sensitivities is common, but it's certainly possible — about 5 or 6 years ago I developed a sensitivity to soy and legumes, after testing negative at EnteroLab about 7 or 8 years earlier.

Relapses that occur after years of remission are often difficult to break — at least it seems that way. Maybe it just seems that way because it takes longer to accomplish than we think it should.

If you happen to be severely deficient of magnesium and vitamin D, you may need to correct the problem before your immune system will be able to promote healing. But if you're not significantly deficient, I would be reluctant to add any supplements at this point. To the contrary, it may be necessary to stop all supplements in order to reach remission.

One of the things that makes this disease so formidable is the fact that it can change the rules over the years, requiring us to learn new tricks.

I hope this helps.

Tex
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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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Post by karenswans »

I have had one change in the last 6 months (new job!), but I believe the thing that sent me over the edge was going on a trip last week that included some family stress. Travel+unfamiliar food+stress seemed to send me into a spiral.

Though I was able to maintain for 7 years and eat a wide variety of food, I had to be careful about the quality of that food. I really believe pesticides have a lot to do with my LC (though I have absolutely no proof). I can even eat gluten as long as the wheat is organic. The one sensitivity that always remained was eggs.

My emotions have always played a big part, too--when I had my bad flare in 2011 when I was diagnosed, it was the same year my Dad died. He was dying as I talked to you all here in 2011.

Last time, after going down to my crisis diet, I was fixed right up! Like Tex said, it isn't so easy this time. I'm going to switch to turkey and see if that helps. I'd like to keep the rice if I can so I'll try the turkey switch first, and then remove rice if I need to after that. One new thing that I've noticed this time is that food is passing through me pretty much undigested, even very well-cooked carrot.


I'm aware that I was extremely lucky in my remission last time and this time I may have a more limited diet when I get to the other side of this. I'll do whatever it takes--at least this time I feel like I have a leg up in terms of understanding what's happening! Thank you all.
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tex
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Post by tex »

Undigested food in stool is clear evidence of severe inflammation. Here's the thing about gluten that separates it from many diseases. It causes increased intestinal porosity for everyone, even for those who do not produce antibodies to it. (It's just worse for those who are sensitive to it.)

If you have an HLA-DQ2 or HLA-DQ8 gene, repeated exposures to gluten may cause a slow buildup of damage until the damage exceeds the threshold at which a reaction is triggered. Therefore, if you have eaten any gluten within the past few months, that damage may have to heal for a while before the inflammation will subside. IOW, if that's the case, the chicken and rice may still be safe — you may just need more time on an elimination diet (to allow the damage to heal).

That said, stress is a powerful trigger for MC. A job change is often a stressful situation (for a while at least), and yes, the additional stress from family issues could easily push almost any of us over the edge into a reaction. Research shows that the most harmful type of stress is due to issues that we perceive as long-term problems over which we have no control. If we feel that we may be able to figure out a way to resolve an issue, that can lower the perceived stress level tremendously.

Tex
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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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Post by karenswans »

I know I don't have the genetic variants thanks to 23andme.com. :smile: That said, I know I'm in the middle of a severe inflammatory response because of something.

I remembered one other thing--I have a hip problem which was causing me some pretty significant pain last week (flying always makes it worse. Thanks, airline seats!). I took more ibuprofen than I should have over the course of the week. I wouldn't be surprised if that was a factor. That was not smart of me.

I'm going to go ahead and switch to turkey because, why not? I like turkey just fine and I might as well remove the possibility that I'm reacting to chicken right now. I'm also making an appointment with my gastro to talk about entocort. I've never resorted to meds before but I have to admit the undigested food is scaring me a little.
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Erica P-G
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Post by Erica P-G »

Just throwing this out there......not knowing how we can tell when we have enough HCL in our stomachs to properly break down food before it dumps into our small intestine....but could this be a factor?

Betaine HCL has helped me quite a bit, and as of late I haven't been as religious in taking it and I'm seeing more undigested foods in my bathroom breaks. So I need to get more serious with it and see if I can remedy my issue.

I'm 50 yrs old and never had any issues digesting food until this MC thing grabbed ahold of me good, so digesting has become a problem and I have been diligent in healing my gut for 3 years now. I do know when heat and stress get to me my digestion doesn't do as well as I'd like to either....so go figure.

I have never taken any meds for my MC.
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tex
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Post by tex »

Karen,

I'm betting that the main culprit that triggered the relapse was the NSAIDs. According to research articles published by pathologists, NSAIDs are apparently responsible for causing more damage to the stomach and small intestine than any other commonly-used medication.

Tex
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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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Post by tommyboywalker »

tex wrote:Karen,

I'm betting that the main culprit that triggered the relapse was the NSAIDs. According to research articles published by pathologists, NSAIDs are apparently responsible for causing more damage to the stomach and small intestine than any other commonly-used medication.

Tex
Hi Karen,

Tex knows his stuff and I agree that the Ibuprofen could certainly be in play.

I was diagnosed with Microscopic Colitis after a tough bout with the parasite Cryptosporidium.

While most people that are infected with Crypto recover within a couple of weeks, my GI doctor (whom I really believe in) felt that my use of a large amount of NSAIDs (Naproxen Sodium) that I was taking for a chronic pain condition (CRPS) and the parasitic infection was the "perfect storm" for allowing the Colitis develop. Since diagnosis, I have stopped all NSAIDS (including baby aspirin as many doctor recommend for heart health) while I heal.

I sincerely hope that you can quickly get under this and are back on the path to more remission! The goal of all of us!

Best of luck to you Karen and please keep us posted. We're all in this together.
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Post by henrym »

tex wrote:Karen,

I'm betting that the main culprit that triggered the relapse was the NSAIDs. According to research articles published by pathologists, NSAIDs are apparently responsible for causing more damage to the stomach and small intestine than any other commonly-used medication.

Tex
My LC started after a long term antibiotic and NDAIDS treatment, combined with a intense stressfull period and change in diet (more spicy/raw food). Just the worst mix imaginable..
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Post by karenswans »

Yes, Henry, it is the worst mix possible!

Tex, yes, I think you're right. The ibuprofen is probably the main culprit here. I can't believe I didn't think of it right away since I know I can't take much of it at all.

Erica, you mentioned heat as a contributing factor to your MC. Interesting! I live in the Pacific Northwest and don't deal with a lot of heat, but my trip where this relapse started was to Florida and then to NYC. Talk about heat!

The good news is I think I'm starting to heal a little since the undigested food isn't as visible today. The bad news is I'm having trouble getting into a gastroenterologist. I need a new one (new job, remember? So, new health insurance). I can actually go back to one that I saw years ago and liked, but she has no availability until late September. I booked an appointment with her partner since one was available next week, but reading the reviews about that doc makes me think no doctor at all would be preferable. I'll do a little more research today to see if I can find a good doctor with some availability soon who takes my insurance in the Seattle area. (I'm sure that will be really easy to find! :???: )
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Post by karenswans »

Erica, I'll look into the Betaine HCL once I'm through this flare. Thanks for the recommendation! And I just noticed you're from Washington, too, but I think I saw in another thread you're from the eastern side of the state? I'm east of Seattle, but west of the Cascades (around Redmond in a small town in the Cascade foothills).
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Erica P-G
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Post by Erica P-G »

Hi Karen,
Does your small town start with an S or I....I lived in Kent as a young child :-) Near Maple Valley.

You ought to be able to find a likeminded naturopathic Dr in your area....good luck! Yes Walla Walla only has so many choices and I will need to re-look as my last dr retired :-(

We get to endure another 100+ degree day with bad air condition due to all the chafe from wheat harvest and fire smoke coming up from OR and Cali fires....not very comfortable over here at the moment.
To Succeed you have to Believe in something with such a passion that it becomes a Reality - Anita Roddick
Dx LC April 2012 had symptoms since Aug 2007
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tex
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Post by tex »

Erica wrote:We get to endure another 100+ degree day with bad air condition due to all the chafe from wheat harvest and fire smoke coming up from OR and Cali fires....not very comfortable over here at the moment.
I feel for you. Remember when that used to happen in developing countries? Now it's a constant problem here. Here in Texas our once-clear air has been polluted for weeks/months by sand blowing off the coast of Africa. The sky is constantly hazy.

IMO most of it is our own fault. Nature used to clear out the underbrush in forests with naturally-occurring fires. We think we know better than Mother Nature, so we stop all those fires. Now the underbrush is so thick in many forests that once a fire starts, it can't be controlled, and it consumes everything in it's path. But I doubt that we (politicians who make the laws and bureaucrats who write the regulations) will learn from the experience.

:rant:

Tex
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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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