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Life Update: Ups/Downs, Sphincter of Oddi & Visual Therapy on Pause

3/14/2017

5 Comments

 
Picture
What's that saying? "Man plans, God laughs." Ahh yes, this could not be more true, and how often I forget it. In my last blog post I had wrote about staring a vigorous visual therapy program. I began this program & completed about 3+ weeks before having to stop due to other health issues which arose and became a priority. I was burning the candle at both ends & something had to give, so the visual therapy was put on pause. It was a tough decision, one not made in jest, but ultimately the right thing to do.

What happened? Oh boy, where do I start! Around the middle of December I started to have some pretty tough stomach aches. They were in my mid-line stomach area & would wax & wane in severity. Because so many of my symptoms cycle through I tried to tough it out thinking it was going to leave soon.. it didn't. Things got worse & by early/mid January we discovered I was fighting C. Diff. The area of my colon most affected was the transverse & descending, but honestly the pain wasn't the same as when I had C. Diff in the past, which is why I missed it for so long. In some ways it was, but in other ways it was another kind of ache I couldn't quite put my finger on. Therefore it really eluded me for a long time to check for it. But alas I had an answer & could get started on treatment for it asap. I believed this would be the answer to all my stomach woes. In fact I soldiered through visual therapy this entire time, which if you've ever had C.Diff you will understand what an accomplishment that actually was. However the C. Diff, I would find out, was just the tip of the iceberg. 

As January lumbered on the pain did not get better, and in fact it just got worse. The mid-line pain radiated to my back and my shoulders & would come on in strong uncontrollable attacks. I no longer have a gallbladder, but the pain was reminiscent of when I struggled with that except much more severe. So we started investigating in that direction and realized the pain was coming from my pancreas. And the reason it hurt much like my old gallbladder pain (often affecting my liver too), was due to the Sphincter of Oddi. I hope to write up a comprehensive post all about SOD soon, because it's a fascinating little valve which is small but mighty. When the SOD spasms it wreaks absolute havoc on the pancreas and liver. More so, it wreaks enormous pain.
Both your bile and your pancreatic juices flow to your small intestine through a common duct that is opened and closed by a round valve. The valve is a muscle called the sphincter of Oddi. Sometimes the sphincter of Oddi goes into spasm; It clamps shut and cannot relax. This is called sphincter of Oddi dysfunction (SOD). The condition causes intense belly pain. Your digestive juices back up into your pancreas and into the bile ducts of your liver. This can causes inflammation of the liver and pancreas, and in some cases pancreatitis. It is most common in individuals without a gallbladder.
I can only describe a Sphincter of Oddi attack as a gallbladder attack on steroids. In January/February I was having them almost daily because I kept eating and not realizing I was triggering it over and over. That might sound silly but the effects aren't instant. So, the eating brings on the attack much later .. often many many hours later. It's not uncommon for me to have an attack 8 hours post meal, and then deal with mini attacks and painful pancreas inflammation for days following. Before I understood what was happening I was at a complete loss. I also struggle with a LOT of stomach issues, and having this pancreas/liver pain on TOP of C. Difficile was kind of my personal nightmare. The two together felt like someone chewed me up and spit me out. Everything hurt, and pinpointing what exactly hurt was hard to say. Once we realized what was happening I immediately went on a liquid diet. I lived on shakes & occasional crackers for 3 weeks while trying to allow my digestive system & organs to get a break. I was so weak, so exhausted, and battling a lot of pain. Every inch of my body hurt and was depleted. I laid in a ball and drank shakes and just tried to survive this period of time, because it was a lot.. mentally, physically, you name it. 

How do I feel now? On the mend, but not quite there. Managing SOD isn't easy. I've struggled with it in years past, and it always came on just as mysteriously as it went away. As far as this occasion, I really can't say for sure what the trigger was. Why it flared up now out of the blue is eluding me, but I have a theory which I'm working to confirm now. All I do know is that in this process I discovered castor oil packs, and I LOVE them. They are the only thing which offer some soothing relief since any kind of pain medicine is a big no-no with SOD. Pain medicine actually makes SOD worse, so that makes the condition trickier to manage.

For now I'm still fighting the C Diff & juggling the anti-microbials which make me herx, but are necessary. It's a fine balance to find a mix which will kill the pathogen but spare my body/liver (especially with mine being in a more fragile state). I'm also playing an up and down game with my SOD pain & digestive difficulties. So it's a little like two steps forward, one step back. I'm making progress, slowly but surely. Some periods thing's get worse (like high stress situations), and then I feel like I get thrown down into the trenches again, living on a liquid diet and getting IV fluids until my pancreas calms down. I have good stretches and tougher stretches, but I am determined to find a lasting solution. When I'm back on my feet and more stable I will have to start from the beginning with visual therapy, which is a little disheartening. However, I've come to peace with it. Sometimes life throws a wrench in your plans, and although I don't know why it occurred I'm just trusting in the process. I can only take one day at a time & adjust as needed. So for now, I'm adjusting to this & will keep taking steps. Thank you to everyone who takes a genuine interest in how I am progressing, and how things are going. The prayers and the support are deeply felt.

xoxo,
Christina


5 Comments
Issie
3/14/2017 10:15:57 am

I found the hard way that too much curcurmin irritated my stomach and I also had the type pain you described. Im not using it daily now. But still try to use turmeric, ginger and cinnamon at least once in coffee a day. Also found stevia to be helpful along with using a lot of coconut milk with full fat. It kills pathogens, bacteria etc.

Hope you feel better.

Issie

Reply
Corinne Newberry
3/17/2017 11:59:09 am

Thank you for continuing to share the many facets of your journey. I am praying for relief, strength, and joy in the midst of crisis.

Reply
peter
6/21/2017 04:34:59 pm

Christina,
No need to fight C-diff and not win. I had the same problem and it came back three times. The third time I took matters into my own hands and came up with a winning formula for the therapy:
- First of all, the antibiotic Vancocyn (Vancomycin) is usually taken every six hours. It should be very five, it work a LOT better because C.diff multiplies rapidly.
- Vancocin will work great in the beginning (provided the therapy was aggressive enough, and not done so many times that bacteria developed resistence), but it is not enough, as anyone who tried this has learned.
- Staying away from ANY and ALL foods which have sugar and starch in them is absolutely paramount to success. Salads with oil, and light meats are the only foods allowed. No bread, no fruits, no cookies, no juices of any kind except maybe home made ones from veggies.
- Adding Saccharomyce boullardii is essential. It is about as potent against C-diff as Vancomycin. However, no need to take it at the start of therapy - give it a few days so that the population of C-diff is somewhat reduced, to almost "gone" levels.
- Start taking S. boullardii some five or so days after start of therapy. Maybe sooner if you feel it would help. Now, the most important thing is - never take it at the same time as antibiotic. You want the bacteria to start trying to get used to antibiotic, and then hit it with S. boullardii. This will "confuse" the C-diff enough that it gets killed off.
- Some spores or whatever will stay behind. This is how it comes back. They wait for the danger to go away. It usually takes them about a day or two to open up and slowly start causing the infection. This usually happens after the therapy was finished. So, finish the above therapy, which should take about 10-15 days (I did mine for 15 days!!! Much better to overdo it!) and then start reducing the dosage of Vancomycin. Perheaps take it only two time on that last day, and then stop. Take about a full day's worth of a break. Then surprise the bacteria and take Vancomycin again for a day. Then, take S boulardii. Then take a break. by now you should feel completely fine. Then take a two day break, and again surprise it and take Vancomycin again for about two to three days, combined with S. boullardii. (BTW, S boulardiii should be taken in large doses - about three pills each time, at least 4-5 times per day, ideally on empty stomach, or sometimes I took it both before and after a meal).
Finally, when you are absolutely positive that you have won this battle, continue taking s. boullardii at least a few times per day. You can also skip a day or two if you feel so well that you don't need it, but then, surprise them with a large dosage again here and there.
And ultimately you should be free of it just like I am.
Here is the proof: I just took some Amoxicillin which is what triggered this hell of the infection for me. I took it for couple of weeks, and not a trace of C-diff! So, it is definitely cleared.
Good luck and God bless!

Reply
Christina
6/26/2017 09:16:23 pm

C diff is a tricky beast, thank you for all your helpful tips & sharing what worked for you!

Reply
Tiffany
2/16/2020 12:46:06 am

I just want to thank you, I stumbled across your blog researching castor oil packs, and wondering if they’d help with SOD pain... Mine started in 2009... I also was diagnosed with RMSF (though no Lyme that I know of) I’ve never seen anyone describe it exactly as it is... I always find it hard to put into words... So thank you 💚 You explain it perfectly 💞

Reply



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