What happens if your gut derails

As I mentioned, this blog will jump around some. Some makes more sense now.

A first line pain medicine that was dirt cheap was used in me.  Indomethacin.  This tore up my stomach, causing acid reflux, more pain, and the Doctor to prescribe Omeprazole.
I was in name brand Omeprazole for years, due to insurance. The pharmacists would go out to the shelf, and grab a couple packages, and put my prescription on it.

I was taken off  Indomethacin, but the damage was done. Never had heartburn, or Acid reflux my whole life until this Indomethacin was introduced.  Now I wonder how this drug effected my gut or small intestines. May never know, but thinking back of why I was out on Omeprazole.

Eight years later, I still use Omeprazole. This may be due to damage, never restored to a normal gut, age, or many of the other meds added over the eight year course that also may cause damage.

All is not MS, so I had to find out stomach issues I was having, that may or may not be MS.

I had a upper and lower colonoscopy/endoscopy two years ago, ranitidine was added. A new one that helped.  However, I was led to believe I also had Ulcerative colitis for the next two years by the Doctor.  I was out completely under for This procedure.


Ulcerative Colitis is one listed with Rare Diseases. A high dose of a probiotic, known as DSL#3ds is supposed to help. The cost was more than I could afford. Nord (National Organizations of Rare Diseases) has a patient assist program, so I applied, and was on Nords list to receive two boxes a month surfing the next few years, taking a massive amount of probiotics.

A Trial of this VSL#3, was also ongoing at UC Davis, San Francisco. So I was following that study, but knowing I received the real VSL#3 probiotic. That study ended, with mixed results, as perhaps not all the right probiotics were in VSL#3, for Multiple Sclerosis.


VSL#3 contains only eight strains, and has to be refrigerated. I have a lot of now empty cooler boxes and Ice packs, if anybody knows what to do with them.

Ubiome.com, a start up company out of San Francisco was contacted, as a Gut study of microbes was going on. I fell into being part of this ongoing study to this date.  Their reports changed over time, but would tell me microbes in Gut. Yes a small sample of feces in cotton swab into a glass vial was sent to them. Many probiotics were missing, or being crowded out by VSL#3.  At one point, I had No microbes of any probiotics in me. Weird, but knew a turn in my health took place at same time.

  Extra Gas from probiotics and pre biotic foods, such as flax meal, prunes, seeds, nuts, and other things were effecting my gut.  But that's for another blog with a new GI Doctor that undiagnosed, along with my GO Dr, ulcerative Colitis. Never had it. GI issues, yes, but not UC. I was relieved, but now what was needed.

Chronic constipation. Trulance was tried. Linzess was next with Miralax, known as polyethylene Glycol. Not on that later.

Guess this is more about the digestive system, being complicated. Finding out what runs in my family tree, and a lot more information learned in eight years looking back at why I am still in omeprazole.

A link.    Listen to your Gut
https://www.purityproducts.com/blog/listen-to-your-gut-is-your-digestive-system-the-gateway-to-better-health
I found interesting.


I found this written by Dr Orrange posted in goodrx.com

"Dr. Orrange is an Associate Professor of Clinical Medicine in the Division of Geriatric, Hospitalist and General Internal Medicine at the Keck School of Medicine of USC.

Posted on March 22, 2019

Omeprazole (Prilosec) is a cheap, generic medication available both over the counter or with a prescription. It belongs to a class of medications known as proton-pump inhibitors (PPIs), and is one of the most popular medications in the U.S. It’s used to treat heartburn, reflux disease (GERD), and ulcers. Many people also use omeprazole to protect the stomach when taking NSAIDS (non-steroidal anti-inflammatory drugs).

Even if you’ve been taking omeprazole for a while, here are five things you may want to be aware of.

1) Disruption of gut bacteria

Studies have shown that people treated with omeprazole have different types of bacteria in their gut compared to untreated patients. Specifically, people taking omeprazole have higher counts of “bad” bacteria like Enterococcus, Streptococcus, Staphylococcus, and some strains of E. coli. Why this matters is not fully known. But, the bacteria in our guts play an important role in our defense against pathogens, so disrupting the gut flora may be a downside of omeprazole. It might be why people taking omeprazole have a higher risk of getting C. diff diarrhea.

2) Omeprazole vs. other GERD drugs

Is omeprazole the best medication for stomach issues? Well, studies show omeprazole works better than rabeprazole (Aciphex) for a variety of stomach issues, but it does not work as well as esomeprazole (Nexium) for GERD.

3) Omeprazole and heart attacks

A study published in August 2016 found that taking PPIs like omeprazole could be a risk factor for heart-related complications. How severely omeprazole impacts heart health has not been fully explored, but in this study, long-term use of PPIs was associated with a 70% increased risk of cardiovascular issues—and risk increased with longer use.

4) Omeprazole vs. acupuncture

In a study from 2016, acupuncture was found to work better than omeprazole for GERD. The researchers compared GERD symptoms in patients taking omeprazole versus those undergoing acupuncture treatments over 8 weeks. After the study, both groups’ symptoms improved, but acupuncture was significantly superior to omeprazole. Worth a try!

5) Omeprazole “as needed”

Unfortunately, omeprazole doesn’t work on an “as needed” basis. PPIs like omeprazole take five days to reach maximal effect. So, taking it on an “as needed” basis will not provide enough acid suppression and symptom relief. However, some histamine-2 antagonists, like cimetidine (Tagamet) and ranitidine (Zantac) are better for that. "Dr

Look at my post Turmeric or Curcumin, as links says it will help


Thank you for reading
JoeY

Sacramento MS walk

This is my first MS Walk for the National MS Society in Sacramento, CA
I am On left, standing with a cane made by Dale, with Diamond Wood, from the interior of Alaska.  I have never met them,  but younger brother has. He made this masterpiece about 5 years ago


National Multiple Sclerosis Society - Official Site www.nationalmssociety.org

I put a team together, called EverchanginMS.
 Wil and I were the walkers, and had two virtual walkers, my mom from Juneau Alaska, and  Matt Allen  from southern CA raised money, being a virtual walker. Have to thank him and family and his friends
http://mattsmultiplesclerosis.com/

My brother, Keith, put a Team called centennial avengers  in New Mexico.  Knows a lot more people
https://secure.nationalmssociety.org/

They should have a fun time, to get to know co workers, and walk. It's in the principal of creating awareness

There was a big turnout for the walk.  I had to email city of Sacramento, as they showed all Parking full. Just a button they needed to press, to make garages available.

Parking was confusing, if you read the instructions, they were different, as the only way into the garage was pushing button for ticket, and arm raised. Two machines, outside, with only one working said to take ticket and prepaid code back to the machine, and you would have 20 minutes to leave.

That was not the case. Readers on machines with arms would not let us out unless we paid again. Attendant was called. Guess she runs between all the garages. But for her to get us a receipt to raise arm, she had to stand in same long line others also were having trouble with.

So  email back to city showing We paid again to get out, even though to reserve a spot, you had to do that online, and pre pay.  Felt sorry that the employee did not have tools to do her job, and had to wait in line. She should of had a bar code reader, showing you did pay, that would raise arm. We flagged people around us, trying to get out.  And seeing how bad it would be for the new arena built downtown, for people paying at one terminal working, to validate ticket, that still would ask for money when exiting. Think wording was wrong at entrance terminal, that said to press button for ticket. Did not see any reader from passenger seat, or instructions that said or enter your bar code.

The Walk was fun. They had a dozen plus booths from the Drug companies, making sure you got a water bottle, a pack, and goodies with information. Even one of the newest MS therapies was there with a single sheet of paper telling people about one of the newest drugs.

plus there was a table full of bagels, cookies, bananas, water, and another table serving coffee, having cups pre-filled, so no lines.

We were glad to of obtained  the material before the walk, as they quickly ran out of their trinkets.

A booth labels UC Davis, also was there. Wil said I see the Dr there, and then she turned around. I was able to meet her team that runs in the background, handling questions, and emails. Was great to see her there, as I had seen her The week before in a office setting, asking questions.

A second loop was a three mile loop to the bridge, A lot of people did with their groups..
But to far for us. The grand final was a cheerful crowd clapping and cheering us on.

A Trip to Costco, for their $1.50 hot dog, and seeing how people buy truckloads of "stuff" was our lunch, after we test drove a Echo sport car for the first time. It was roomier inside than it looks. A all wheel drive with four cylinders, drives different than the three cylinder one.

A real tire mounted to the back would be a must, and all wheel drive, as we live at 3000 ft level.

https://www.ford.com/suvs-crossovers/ecosport/?gnav=header-all-vehicles

A jeep is still being looked at, as it has a real spare tire, and able to lock the 4 wheel drive. A must for snow.

A Subaru was also test driven, as they keep their value, all wheel drive..I
All wishful hopes, for reliable transportation.

Our cars are 25+ years old, and the failure for the mandate of the state of California to provide rides for me is in court, as I have exhausted all means of rides to specialists I need to see that are far away.  The State took three months to find me  a driver, that gives rides, He is in our county, and has been  doing business for years.

State vs JoeY

 Just know State has put A lot of legal people On this, and wasted resources, that could be used in a better manner.  flying people up to Sacramento.  Can see why somebody would give up on transportation, especially when retaliated, after taking a year and half for someone to be  licensed. 

For me, the search for rides goes back to 2013 to find someone, after exhausting all resources in all the counties.  Then three months, after finding the State was Required, but they could not find the licenced guy just down the road.

I am awaiting a judge's decision, as already went to a hearing, given 30 days for judge to make a decision.  state asking for two extensions. The last was to retaliate it would appear.

Enough rambling, but perhaps This case will will help others.

Thanks for reading
JoeY

Bowel constipation and intestines

Bowels, constipation and MS Poop

I have mentioned some of these items of Constipation, Diarrhea, in prior blogs, but figured everyone needs the down and Dirty of living with Multiple Sclerosis and dealing with issues.

First a quick YouTube video, made for kids and adults to watch, as animated of What goes on after you eat.
https://m.youtube.com/watch?feature=youtu.be&v=_2HDeSNQbio



I have dealt with this Since before my official Diagnosis of Multiple Sclerosis.
Many People, even without Multiple Sclerosis deal with Constipation and Diarrhea, so this blog is for them also, and of any age this can occur.

My Mom told me a story of when I was a little baby.  I had not gone poop for quite a few days.  My mom's Mother, Grandma came to watch me for the evening, and said she knew how to make me have a bowel movement.  When my parents came back,  Grandma said I had a bowel movement, and did not explain how. She was a nurse in the military thru the wars. She passed away at last year. President Trump sent my mom a Thank you letter for Her mom's service.

Her two Daughters when growing up, we're made to have bowel movements daily, by her mom, regardless. This would be in the 1940's. I could only imagine what was available to make this happen. Enema s, cod liver oil, suppositories, and more.

A Story goes back to the 1800's, when poo paddles were made out of wood, and in the Midwest, that was common to have poo parties to clean out any blockage.

Nothing much has changed, except for research, and finding knowledge of what works or does not. Perhaps Gene related, or eating habits, or never having the knowledge of how often to poo, or what it should look like.

Poop scale from web MD

With my MS, at the beginning, I made a emergency contact With my Dr, as I had not gone poop in days, and days went by until I could see the Dr. He put me on Generlac, which I still need and use.

With Multiple Sclerosis, the Va gnus nerve can be damaged, which sends the signal of What should be happening thru the entire digestion, and when you should go.

Another issue is so many medicines can make you constipated, or have diarrhea, as a side effect. Many medicines for others without MS, also can cause this.

My mom, the issue of growing up, being made to go, caused he bowels to become lazy. There may be a Gene also passed down, that caused bowel problems.

With Multiple Sclerosis, the disease effects the nerve fibers, which your body is made up, that controls muscles. Think of the video. Swallowing takes certain muscles to move the food to the stomach. Swallowing issues are common with MS. I have this condition, and slow moving food.

Next comes the stomach, to digest the food.
Many people with MS, and without use protein pump inhibitors, like prilosec, antacids, to control gerd,  due to medicines, or foods. I have been on these for almost a decade. Added was ranitidine to my daily medicine regimes to help. This one helped! Still on generic prilosec, as that helps.

Then comes the intestines. Another Muscle affected by Multiple Sclerosis. Many MS patients use metoclopromide. This medicine comes with dangerous side effects though. It causes the muscles to move the processed food along thru the intestines, contracting the muscles. This helps tremendously for me.  Old folks home uses this drug, and a side effect is smacking of lips. More dangerous non reversible side effects can occur. I was taken off, and put back on this medicine, as the benefits outweigh the dangers.


Soft tissue damage can also occur when the poop becomes hard. This can happen anywhere along large or small intestine.

I have done a upper and lower colonoscopy. Where the Dr decides to snip pullups off, to biopsy for cancer, those areas can bleed. The ladies in quilting class today were talking about this subject. Quite interesting of their experiences. I was completely out under for mine, while others were awake during procedure. The gallon of liquid to clean you out is better than the pint of goop. Stay near a bathroom, and Don't fall asleep, or accidents will happen.

The upper, Dr uses a scope to take pictures of stomach, and opening as far down as he can in the large intestine, going thru the mouth and down throat. A problem area, if you already have swallowing issues, or slow movement. And could also create this problem.

The lower is done thru the butt, and up as far as they can go.  This can cause lots of trapped gas, or they can Nick any area in upper or lower, which also causes problems.

Simethicone is used by me for trapped air. This air caused  bloating and distentention, covered in a prior blog. But it breaks up bubbles. Not a complete solution. Now is metabolic syndrome going on.

I was led to believe I had ulcerative colitis going on for two years. I switched to a New GI Dr, at UC Davis. He undiagnosed me, along with my New GP who is a GO Dr. Symptoms did not match what was happening. I was On a mega dose of VSL#3 for those two years, which mimicked a study done for Multiple Sclerosis by UC San Francisco, as the gut plays a huge role.

About this time I had my first major hemorrhoid. A out tie, that I took a picture of, and sent to my Dr., As not sure if a ER visit to hospital was needed. Hemorrhoid cream was used for a month.

Because of chronic constipation,  I was finally ab!e to see a new GI Dr, at UC Davis. This took six months to get in for appointment. In meantime, trying different fibers, and over counter natural remedies. A potty squatter, or chunk of wood to put your feet on to obtain right posture, a massage of small intestine from right side up and across to left side and down.
The new GI tried me On Trulance.
This drug caused many accidents to happen. Was not addressing the distention and bloating, or straining still needed. He had taken me off metoclopromide, but put me back on the medicine, when he found out it was helping. He Added polyethylene Glycol to my daily mix, also known as miralax.
Three months later I was a candidate for linzess. May not be the answer completely, but is helping, keeping consistency of poop as Soft serve ice cream to liquid. Once or twice in the mornings.
I can assume internal hemorrhoids, as bypass of poop. But a lot less straining.

My first GI, said follow up in ten years, but I will not go thru a upper or lower colonoscopy again.
There are other options now. A box, you mail a sample to lab to check for cancer. Won't show pictures though.  There is a Camera Pill you can swallow, and it takes pictures thru whole digestive system.  I may be a candidate for this trial, for any researchers reading, contact me.

One of the ladies, said she read about this. Camera got lost. It was actually stuck in Tumor she had growing, so her story is still going on with unknown outcome, read it online.

I find in my family history, bowel blockages, ruptured bowels, and more in past generations, so only assume thin soft walls, that need care, without major straining to go is needed.  Any  surgery is not permitted, as I would not heal. Especially from inside to outside. This is to gene listed below, type of blood, and any blood needed, my body would attack, and make more iron, causing phlebotomy. So no surgery. Other means need tried.

 Google the term "poop in old days" For many remedies.

For those keeping up on blogs, jumping back and forth,
I stay slightly anemic currently after doing 17 phlebotomy to remove excess Iron from my blood since October 2018.  My bone marrow makes new blood cells. New cells made every three months. Going on month #5 now. But still anemi.

My other siblings with problems of  diverticulitis, after scope.  Dr prescribed Ciprofloxacin (such a lot of side affects for that med) and. Metronidazole to treat infections.
My mom, major internal, and became septic, when bleeding inside, and needed a lot of blood and Hospital care. 
 This is Nothing to let go on.

My Iron in from build up since birth.
This is due to a inherited gene, one from my mom's side, one from my dad's side. Known as the HFE Gene, H63d/H63d that changed  C to a G, causing a protien to never release iron. My Brother has exact copy, with Iron Overload, Thick blood, high hemoglobin, high hematocrit, high ferritin. Known as Hemochromatosis.  This is On top of my Multiple Sclerosis, with overlapping symptom's. Fatigue never went away, so MS symptom.

I now have doctors shaking their heads, as Hemochromatosis , but anemic.u

The opportunity to meet with a old Dr from years ago over coffee was amazing. Keep track of your good Doctors.   I just found out that my GO, is going on to learn more. He will be missed, but have me contact to stay in touch. That means alot, when a Doctor has interest enough in the patient to keep in touch as friends.

 To understand,  Hemochromatosis, as it does manifest with different genes, or may never know, this video is worth the watch to explain.
Watch this video,
https://www.youtube.com/watch?feature=youtu.be&v=_2HDeSNQbio&app=desktop
IRON MEN Living With Hemochromatosis HD

https://www.youtube.com/watch?feature=youtu.be&v=_2HDeSNQbio&app=desktop IRON MEN Living With Hemochromatosis HD

 on how the genes, normal or modified like mine, passed down thru generations, into next generations

Thanks for reading.
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JoeY