A year of many changes

My bf has been asking over and over when I would update this blog and I finally decided today is the day – a full year (exactly) after I last posted.   Many things have changed, all for the extreme better.  Here we go.

I would say, that for the most part, whatever is ailing me is healing and almost (possibly totally) ‘cured’.  In retrospect, I think the following are the reason I am feeling better.

Rifaximin:

As I had stated before (I think), my GI guy – hearing I still had symptoms on an elimination diet despite clean upper and lower GI scans – put me on this drug (also called Xifaxin) for 14 days.  It is a special type of antibiotic that doesn’t cross the blood barrier – IOW, it only works in your GI tract. It’s made to help cure H. Pylori, which I tested negative for but apparently many people with it do. The drug made me extremely sick until about day 11 when suddenly I felt better than I had in a long time.  I emailed him and he said to keep going so I took it for another few days and then went off. And then after a week I felt terrible and he put me back on it for another 10 days.  After that, I felt marginally better – not great – but marginally better and that stuck.

But I was so marginally better I didn’t even notice and called it a lose.  It’s only after a year that I can pinpoint that 25 day period of meds as the kick off to real improvement, albeit over about 8 months.  Somehow it was the right thing for my stomach.

Magnesium supplements:

I had taken myself off of them due to the mystery rash but it turns out that taking them keeps me regular and being regular REALLY helps my stomach.  I’m not as regular as perhaps I should be but it’s only about 1 day a month I have any sort of GI discomfort and usually an apple will cure me of that within an hour.  Awesome.  I now take a type that is powdered and pure magnesium citrate (no additives).  Better for my skin.

Prescript-Assist Soil Based Probiotics

THESE.  But these were also a slow uptake.  I’d tried them before the Rifaximin and didn’t see much result although they didn’t make me feel worse as opposed to Align which did nothing or made me feel bad.  In any event, I had about a month left in the bottle so when I ran out of Align after the Rifaximin I switched to these and after a month I felt a little better so I ordered more.  And kept taking them because why not.  It was in about June (6 months out from antibiotics and now with these probiotics) that I noticed I was able to eat stuff I hadn’t be able to, in small amounts, for 5 years.  My food list began expanding monthly after that.  These definitely work for me.  And if I can’t eat something, after a few more months on these often I can.  So it’s a work in progress but definitely moving forward.

Bio-Feedback Type Breathing

In desperation, I decided to try this on my GP’s recommendation.  Despite improvement with probiotics, I was having gastritis symptoms every time I ate and no matter what I ate (including drinking water).  Scans showed my entire GI tract as finally healthy so he posited that I was in some kind of physical stress cycle reaction to eating, leftover from when my body was in real distress several years earlier.  I went to see a BF specialist who gave me a bunch of exercises.  While I do meditate and feel like I’ve greatly reduced my stress, she agreed with him that my body was in some kind of response cycle and the breathing she taught me activates your parasympathetic something which is the key to calming the body down (as opposed to your mind).  After 2 weeks the cramping greatly reduced after meals and after a month and a half of breath practice I just totally forgot about the cramping.  When I cramp now I’m always surprised – it’s that rare – like wow.

Overall, plus enzymes.

Sometime over the summer I noticed that I could eat more fruits and vegetables without feeling terrible.  Small amounts of garlic and onion continued to bother me so I added Digest enzymes which I take whenever I eat anything that might be spicy or bother me (although I need them less and less as time passes).  In early September I hazarded eating an apple – knowing it could make me totally sick – and it didn’t bother me at all.  I now eat one almost every day.  I still eat most vegetables cooked but that’s really about taste and avoiding too much salad dressing. That said, when I want salad dressing I have it and take the enzymes.

Now what did not work:

Special diets that knock out full food groups.

I spent 8 months doing FODMAPs – no miracle impact.  That said some FODMAPs were a minor issue (broccoli, breads) that seem to be gone from eating enzymes and probiotics. This says more about the supplementation than the diet IMO.

I did SCD/AIP Paleo for 3 months and still had horrible reflux and gastritis symptoms.  In fact, to this day, eating that much fat in a day gives me heartburn (as distinct from reflux).  People who adhere to this diet are pretty preachy about it – you are warned if you go this route.  But if it doesn’t work for you, my advice (which will oppose theirs) is to stop doing it.  I just don’t see the point of this diet if it doesn’t work for you.  Did it help my inflammation?  Maybe.  Did it help my skin?  Not that I could tell. What helped my skin was what my doctor told me would – going off all my medication.  Every time I seem to have a skin problem, it seems to relate to me taking Zyrtec (which I still, to be fair, take but very rarely and only when I’m staying with people with pets).

The plus of these diets is that my asthma largely disappeared but I can relieve those symptoms by avoiding too much dairy to begin with.  I’m not allergic to anything so reading ingredient labels to get rid of any cow is not necessary for me and overly burdensome.  Why torture myself?

I think these and other diets have value but I don’t think they are the be all, end all and, especially if they are not helping you, to view them that way is actually really unhealthy. I also majorly resented the implication that if you weren’t successful with one, it was b/c you weren’t doing it right – add this supplement, etc.  Give me a break!  As someone with medication allergies that have yet to be sorted out, I’m super careful about my supplements.  I just think these diets and those that push them so vigorously are too Type A and too anxious for me to follow.  Like the diet is literally too anxious – too much conformity for me.  If part of your food problems is being stressed about eating, it is really easy to get sucked into some unhealthy eating patterns with the vigor required to adhere to these diets.   This just doesn’t work for me.

Lastly, per a trainer I worked with I tried a Chinese herbalist.  The herbs just didn’t help my stomach at all or my rashes.  That said, his diet advice (largely paleo, avoid shellfish, but rice is okay) is something I pretty much heed keeping it on the lower fat side (for the most part).

Where I am now

I still have circulation problems occasionally but a couple of days of rolling on the foam roller and doing Qi Gong wipes that out.  Sleep, plenty of water (which I mostly drink warm – per a Chinese doctor) really keeps all that in check.

Asthma – I definitely get asthma when I get a cold.  If I avoid dairy it is much better. I steam and take the lowest dose of Mucinex I can find.  That very much solves the problem and quickly.

Overall – I really try to keep any sort of supplementation to a minimum.  As a professional singer, I spent years on heavy duty Zyrtec D, Mucinex, Singulair (followed by Clear Lungs) doses, 2X neti-potting, and then when the stomach stuff started adding in Align and Dexilant (a very high dose PPI).  I think for me being on nothing is SO MUCH BETTER for my body.  I still do take a few targeted supplements but I really take nothing for my sinuses other than when necessary.  All the everyday stuff is out.  Hot water, steaming and neti-potting (although I’m not regular with any of those these days either) just seems to work better for my body and when I’m sick I take the lowest dose of stuff that helps me and get off it as quickly as possible. I was overmedicating since the mid-90s and it was messing me up.  I’m committed to not doing that anymore.

So what’s a day like for me?  Foodwise, I eat it all – all food groups.  I err toward more protein than carbs b/c my body and mind seem to prefer protein over carbs.  My eating overall is similar to before I got sick but with more cooked foods over raw foods.  You will never see me tuck into a giant raw smoothie but I will drink an apple cider if it’s presented to me (and then not having it again for a week).  Fruits and veg are getting easier and at this point I’m eating about 2-3 most days and occasionally a lot more, usually cooked (other than fruit).  I don’t have too much milk, cream cheese or yogurt b/c my stomach seems to not like them.  That said, I can have string cheese or hard cheese with no problems and ICE CREAM.  I do eat bread and cereal but I stay away from high fiber versions – I get my fiber from fruit and veg instead.  I view bread as a treat and eat really good white french bread.  I have found over the years that I do better with meat in my diet than without so I eat that but I also eat legumes fairly regularly.  I take enzymes about 1X per week; for the most part my IBS is gone and my heartburn is really gone.  Over Xmas I ate a lot of crap and took a Pepcid at one point but that seemed to end things. Done.

So, for me – probiotics, magnesium are a MUST.  I drink hot water all the time instead of cold water.  I aim for 8 hours of sleep but often get 7.  I eat about every 2-3 hours – I don’t allow myself to get too hungry.  I  eat too many cookies but I don’t stress over it.  About 2X a month, I eat burgers and fries and even put a little ketchup on.  I eat salad with dressing.  My favorite foods are all from my more recent eating though – my favorite meal would be roast chicken or some kind of meat, roasted potatoes with sea salt and roasted carrots also with sea salt.  Not because my stomach loves it but because I love it.  I eat what tastes good to me and feels healthy enough.  I eat Mexican and Indian foods occasionally because I love them and with enzymes I can eat them!  I fell in LOVE with rice on one of the diets and still eat that a lot (that and potatoes are my main carb).  I try not to overwhelm my system with too many heavy or spicy things at once but if I do I spot-care with enzymes and/or medication.  I avoid PPis and take Gaviscon instead but again this is all rare.  At least for the past year, the days of medicating myself perpetually with reflux meds are totally over and I credit the antibiotics/probiotics for that.  I really REALLY am pissed my original doctor for just throwing me on medication which is crazy habit forming for your body and ignoring a larger problem.  I suppose he didn’t know.  For now, though, I try to stay OFF meds as much as possible if only for my skin.  I am careful when I go on a supplement.  It’s a work in progress but I really love that I can eat what I want as much as anyone else my age can.  That said, I try not to ever overeat b/c then I feel crappy but who doesn’t?

That’s it for now.  The Gala apples from the market have been amazing this year.  I’m so grateful to be able to eat them and I’m off to eat one now.

Best of luck to you all on your journey.  I’ll report back again but until then, I hope you have found a path and are feeling better too.  Good luck.

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