Archive for May, 2013

List of G-PACT.ORG groups

Following is a copy of a posting G-PACT had on here Facebook wall 4-26-2013.  I tried to do a Link to this specific post, but it would not work right.  So here you go:

G-PACT has been asked a lot recently about our support groups. Here is a list of groups we provide and the specialized focus of some of them.

Support Groups: We provide multiple support groups for various issues and age groups. These groups are great places to exchange ideas with others and get some support from others who understand. Just about any question you have can be answered by someone in the groups usually. Groups are a great place to meet others online and have led to many in-person gatherings as well. Great relationships and lifelong friendships are formed.

Yahoo: www.yahoogroups.com/group/gastroparesis

– largest online support group for GP and CIP on the web with over 3,000 members.

G-PACT on Inspire: www.inspire.com/groups/g-pact-gastroparesis-and-cip/

– a community of support groups for a variety of conditions all in one location.

Facebook: We have a number of group options in Facebook:

G-PACT: Coping with Gastroparesis and Intestinal Pseudo-Obstruction- general group for all issues related to life with GP and CIP (aka: DTP- Digestive Tract Paralysis) – www.facebook.com/groups/GPACT. Great group to connect and meet others from all age groups and backgrounds. All DTP related topics are discussed here. It is a safe place to share feelings, ask questions, exchange ideas, and share experiences with others. Do not take any information provided as medical advice. Discuss all suggestions with your physicians first!

The Gutsy Teen Lounge: Very active, engaging group for teens/young adults with DTP located at www.facebook.com/groups/gutsyteenlounge

Kid Bits: Group for parents or caregivers of kids with DTP located at www.facebook.com/groups/kidbits

The Gutsy Guys Garage: Group for men who deal with gastroparesis to hang out and talk. No women allowed! www.facebook.com/GPACTGutsyGuysGarage

Family “Rays”ing: Group for people who have DTP and are trying to raise a family at the same time- www.facebook.com/groups/familyraysing

Spouse House: Group for spouses who are dealing with someone with DTP located at www.facebook.com/groups/spousehouse

Gutsy Sibs cafe: Group for siblings to hang out and share experiences of life with a brother or sister with DTP located at www.facebook.com/groups/gutsysibscafe

Share the Grief, Have Belief: CLOSED, private group for people who have lost loved ones to DTP, not just online (although those losses are hard) but in more of a personal, family, caregiving type atmosphere. Must e-mail publicrelations@g-pact.org and ask to be added or request to join and wait for approval by an administrator. Located at www.facebook.com/groups/sharethegrief

The Bellycommunicator: Positive thoughts with GP and CIP: Group dedicated to only positive thinking, comical stories, inspirational quotes, and all things positive to help group members laugh and see the positive side of life. No medical posting (unless a comical or inspirational story) or medical questions allowed. This group was created for people who can’t handle medical stuff all the time, but still want to connect with others who have DTP. Located at www.facebook.com/groups/TheBellycommunicator

G-PACT Supply Depot: Group where members post medical supplies they have and supplies they need so patients can swap when in need. Shipping arrangements made directly between donor and recipient. www.facebook.com/groups/gpactsupplydepot. This is an excellent group and patients in need have received tube formula, supplies, pumps, feeding backpacks, and other medical devices as a result of this group. Non-DTP specific related items such as wheelchairs, canes, breathing devices, and other medical devices also allowed. Guidelines on what is allowed to be transferred from patient to patient are listed (no medications, heparin flushes, insulin, etc can be swapped). Other guidelines listed (i.e. note expiration dates on formula, keep sterile things sterile, etc)

G-PACT Middlers: Group for those in their 20’s-40’s trying to hold down a career, get married, start a family, or deal with dating issues. Group for those between college and nearing retirement to discuss issues related to the young adult years. www.facebook.com/groups/GPACTmiddlers.

Wrinkled Guts- Maybe the name is humorous, but all of our guts are wrinkled. This group is for the late 40’s, 50’s and beyond members who need to discuss issues related to retirement, career, grandkids, adult children, and life with DTP as other age related health issues set in. Located at www.facebook.com/groups/wrinkledguts.

Prayer chain- This group is dedicated to people who like to pray and believe in the power of prayer. It is open to praying for suffering DTPers or ANY issue weighing heavily in the minds and souls of DTPers that they would like to share with others. Prayer requests may be posted. www.facebook.com/groups/DTPrayers

International Groups:
G-PACT Canada: Group for our Canadian friends to connect with each other. www.facebook.com/groups/GPACTCanada

G-PACT Down Under- Group for people who live in Australia or New Zealand to connect. www.facebook.com/groups/GPACTDownUnder

G-PACT UK- Group for G-PACT members from the UK to connect and share information about resources available there. www.facebook.com/GPACTUK

 

New Group Added …. UPDATE …. 7-20-2013….

G-PACT Successfully Living with DTP  — This group is for individuals dealing with milder forms of DTP who want a place to discuss their diseases in positive way.

Pain, Pot & Politics

There has been a lot of chatter regarding using marijuana/pot for pain management, that it inspired me to look into it further.  I can see pros/cons to both sides and wanted to dig deeper with on-line research to try to figure it out.  For the record, I am not ‘picking a side’.

Did I mention that I live in WA State where they are fighting for it to become legal (the degree is not known, considering how the Feds feel about it).   But the tax money it will generate for wonderful programs, the amount of big brother regulations, was the aspect that I liked.   However, some business’s in WA are now putting pot into food and drinks.  This concerns me, as a parent.  They make the products look kid friendly.

I do not encourage nor discourage the use of Marijuana for your pain management.  In watching my mother-in-law suffer in pain due to cancer, I can NOT tell anybody how to live their life.  She was on a morphine pump at home and no amount of it would help her.  And she had a very high tolerance to pain.  It is a heartbreaking experience to witness and I can not imagine going through it!

potCannabis Sativa, aka: Pot, Herb, Mary Jane, Grass, Weed, Marijuana, Dubby, Reefer, Roach, Dope (and the list goes on).  I believe has the most nicknames of any ‘drug’ we have ever had in our society.   That is just a guess.  The statistics I have found very greatly in the number of people that used and whom are addicted.  For this blog I will say it seems to be about 4% of American Adults have consumed at least once a year and 1 out of 300 Adults are addicts.  Again, each place I read something different.

In all honesty I have never used it, but was around it in my college days.  I never saw the point in doing it, after watching my ‘friends’ get high and act stupid.  That is a degree that I am NOT talking about here when discussing for ‘medical use’.  Medical use pot seems to be about 3 ‘puffs’ a day, from most pages I have read for this research.  But, I will leave it up to the consumers in how much you need.  That is an area I am not going to get involved in.  What you do is up to you and I have no business being in your business 🙂   I am just stating what I read for those that are interested in the topic. Here is a list of my findings for the estimated 76 Million Chronic Pain Americans (again, my stat is not gospel).

What pot can alleviate:

  • Relief of chronic pain
  • Suppression of nausea
  • Increase/restore metabolism
  • Relief of muscle spasms

Research has been done in the following areas with great success:

  • Glaucoma – pot relieves eye pressure
  • Cancer
  • Multiple Sclerosis
  • Epilepsy
  • Chronic Pain
  • Anxiety – in the proper dose, pot can elevate your mood and expand the mind
  • Depression
  • Obsession
  • psychologically/spiritually enhancement

Side Effects of Pot (just in case you didn’t know):

  • Rapid heart rate
  • Increased blood pressure and breathing
  • Red/Dry eyes
  • Slow reaction time
  • Increased appetite – aka, munchies
  • Short-term memory loss
  • Paranoia,  anxiety and depression

From the articles I have read with medical research I can see great benefit from the substance, in moderation.   However,  I was not able to find out too much on how your body adapts to it over time.  If your body would build a tolerance to it and if so, would the higher dose still benefit you?  At this time that would be my only concern, should I decided to go down that road at a later date.

There are so many different types – what is best for me?

Here are the very basics:

  • How much it helps depends on the hybrid.
  • Stativa is very good for night time sleep and pain
  • Indica is good for daytime energy and mood.
  • Both (above) help nausea, however Indica is better.

Here is a very helpful website to help you: www.leafly.com

The decision is yours, just make sure you are responsible as a user and respectful of others who do not share your opinion.

Cheers to Germany and Belgium for their legal use of it and a healthy working society. Links to some of the page I went to for this blog:

BLOG UPDATE:

18 Legal Medical Marijuana States — List as of 7-1-2013 — Per ProCon.Org

http://medicalmarijuana.procon.org/view.resource.php?resourceID=000881

Taco = BM Explosion (TMI)

I ate something for lunch that I know I should not have had.  But, I wanted a taco and have been feeling okay the last few days (only allergy issues).  So, I put a little taco meat on some chips with graded cheddar cheese, heated it and ate it very slow.   I never know how my gastroparesis is going to react to the real food.   One day it will be fine and the next is a big ‘no-no’.  And it can be the same food!  It is just a motility issue (damn stomach). 

The gas pressure came quickly, as I assumed it would.  But was willing to pay that price (this time) to have real food!  I make it for my husband and often don’t eat it.  He doesn’t take a lunch too often, so it just sits there looking at me, calling my name.  So, I caved!

As the gas inside me compounded I felt as if I was going to pass gas.  I bared down to do so.  Gas expulsion does not come easy for me, often needs a little help. 

ImageAnyway, all I can say is it wasn’t gas that came out of my behind!  Gross I know.  Imagine sitting in it, to feel the real definition of ‘gross’.  I jumped up and ran to the bathroom, strip down, putting the now ruined clothes in the sink and decided to just take a shower.  Not exactly how I planned my afternoon.  The clothes are now getting clean in the washer. 

On days like this I miss my second bathroom.  I think I have camped out in it for the remainder of the afternoon.  It’s going to be a liquid diet for a few meals (if I decided to consume anything more today) until I get back on my feet … almost literally!   

The pain that was once just minor is back in full blown glory, as if to say ‘I just waited for you to screw up’!   Along with the not so much missed: diarrhea, nausea, headache and feeling as if I just got ran over.  Guess I did… buy the GP Truck!

Thanks for reading to the end.  I am sure you have been there too, at some point, if you have gastroparesis or IBS. 

The Importance of Protein – Powder ideas for smoothies

ImageOnce we are diagnosed with gastroparesis, we have to create a diet of low fat and low fiber.  Eliminating high fat and high fiber allow the stomach to function a little faster than bogging it down to process those foods.   Plus, making smaller meals help move the food faster.  I have found that I need to stick to 1c to 1.5 cups of food.  Nothing more, for my ‘meal’.   Yes, I in a way, measure it out and put it on a small plate.  This way I don’t grab for more food and make myself sick(er).  It is hard to stop ‘eating’ when you are still hungry, but the literal pain if you don’t is worse -for me.

When I started the GP Meal Plan, I cut out a lot.  I was living off a muffin or oatmeal in the morning (both of which are not recommended), then soup for lunch with crackers and a little portion of what I made my family for dinner (still not a wise idea .. if it is not GP Friendly.  Even in a small portion) and during the day I would have a smoothie of some sort.

Can you tell what I was missing?  I hope you guessed EVERYTHING!  I wasn’t getting enough vitamins, minerals and protein was a big miss on my part.

Every day I felt more and more crappy (pain, nausea, fatigue, light headed, dizzy, headaches, etc).   I didn’t understand what was going on.  I was eating low fat and low fiber with small meals.  Maybe my GP was getting worse.  I didn’t know.   But, one day I ran across and article talking about protein and thought for a minuted of how much I may consume in a day.  Hmmm, not much.  Does it matter that much, really?   I began to do more research and found out that lack of protein causes a lot of problems, such as:

  • Loss of muscle
  • Fluid retention
  • Hair loss
  • Body temperature falls
  • Fatigue
  • Nails break easily
  • Depression
  • Headaches
  • Dizziness
  • Abdominal Pain

Once I figured out that I needed more protein in my days, I began to hunt for items that I could put in my smoothies.  I tried things like tofu and Greek yogurt.  That was never going to be enough, so I searched for protein powders and tried: hemp, peanut butter powder, soy, whey and now my favorite egg protein powder.  Following is a list of Protein Powders along with the amount of protein per serving:

  • Tofu – 9 grams (2″ x 2″ x 1″ chunk)
  • PB2 – 5 grams protein, 2 tablespoons (this is a brand of powdered peanut butter)
  • Soy – 20 grams protein, serving size 24 grams
  • Whey – 25 grams protein, serving size 28 grams
  • Hemp – 25 grams protein, serving size 1 tablespoon
  • Pea – 25 grams protein, serving size 1/4 cup
  • Egg White – 24 grams protein, serving size 28 grams
  • This list is an example from the actual brands I had on hand.  Each brand will/can be different.

For me, the tofu and peanut butter did not contain enough protein for the amount I needed to consume in a day.  The Hemp and Whey could have sent me to the ER if I wasn’t smart and only tired a little amount (sever cramping, bloating, etc).  I ruled out the soy powder, just because I am not that big of a believer in soy.  To me, it is in too much of our food as it is.  I am lucky that the Egg White Protein powder not only tastes great in a shake/smoothie, but it gives me the boost I need every day and has not make me sick!  I swear by it!!

In a given day we should be consuming 50 – 100 grams.  Here is a link to a calculator to help you estimate.   http://lowcarbdiets.about.com/library/blproteincalculators.htm

Lastly, if you can eat some real food, try Protein Bars.  The Balance Bar is easy to digest and can provide any where between 15 – 19 grams of protein (depending on the flavor).  I keep one with me when I go out of the house.  Once I start to feel light headed I eat the bar and am good to go for another hour or two!

It is amazing how just this little changed has helped me.  I feel so much better than before.  Yes, I still have gastroparesis and am in pain every day, but I feel better than I did.

Link regarding protein deficient symptoms:  http://www.buzzle.com/articles/low-protein-levels.html

 

The Spoon Theory — A Must Read

The Spoon Theory — A Must Read

Once you read it, you will understand why some of us in groups talk about ‘spoons’.  And how precious they are.

Please be considerate of the copyright laws. 

=============================================================================================================================

===============================================================================================================================

Thank you so much Christine Miserandino for your story!!

PPI Long Term Warnings — Proton pump inhibitors

I am very thankful that my GERD is not too bad and that I seldom need to take a PPI.  It is controlled well with what I eat and how much I eat.

There are a few things that you need to know, if you are on PPI’s for a long time (1 year or longer):

  1. Broken Bones are more common.  Have your physician monitor your Vitamin D and Calcium levels.
  2. Low magnesium.  Don’t think it’s important?  Low magnesium can cause: muscle spasms, tremors, irregular heartbeats, and seizures.
  3. Low Vitamin B12.   This can cause: Weakness, Anemia, numbness/tingling of hands/feet, memory problems, soreness of the tongue and mouth.
  4. Bacteria Pneumonia.  Since the stomach has less acid to destroy the bacteria’s in it, there is a greater chance of bacteria infections.
  5. Effects drug digestion.  The amount of time a drug is broken down in the stomach can be reduced, making it less effective.  If you have gastroparesis too, it is unknown how long a drug can take to process in your stomach -if at all.
  6. Zinc deficiency.  This has so many complications with our body, it is too great to list.  Serious are:  inflammatory bowel disease, increased allergic sensitivity, behavioral and sleep disturbances, mild anemia and hair loss.
  7. Clostridium difficile (C. difficile).  Is a bacterium that can cause diarrhea that does not improve.  Symptoms include watery stool, abdominal pain, and fever, and patients may go on to develop more serious intestinal conditions.

pill 2

Want more information on GERD? 

Want to know what foods to eat and avoid for GERD?

Want tips on how to get rid of the bad taste in your mouth from GERD?

Then visit my “Bad Mouth Taste From GERD” blog, click HERE

Here are a few resource links if you want to read more:

Time Is Precious — Make The Most Of It

We all hear that ‘time is precious’ and ‘to make the most of the time you have’.  Well, it takes a whole new meaning to us with gastroparesis!  Or any chronic illness for that matter!!

I like to make a list of what I need to go out for.  If it is multiple stores, I write down each store and what is needed there.  Once the list(s) are done, I go a step further and decide my route to each store.  This saves me gas money as well as time.  Time to us is also Energy.

ClockOf course I look at all the ads before I go out to get the best deal.  This is mostly to save money rather than time.  But if the difference in cost is just a few cents and I don’t need anything else at that store, forget it, I will go to the other store and pay the little extra to d not have to stop again.  Before GP I would stop for just the one item.   But with GP I never seem to have the energy to make it to just the one store.

You will all understand my disappointment when I had several items on my list, went to the store and 2 key items were not in stock.   This is the trouble with ads.   Since this was the last store on my route, I didn’t have the luxury of going back to the other store to get what I needed.   I was pushing my good GP Day to the limit as it was.   So I found something that would get me by until I could make it out again (or send my husband – which I hate to do, as he works very long days).

I did make the best of the time that I had today.   Even if I didn’t get all that was on my list and had to do a little quick thinking, it turned out okay.   Quick thinking isn’t so quick anymore.  I set the basket I was caring down and just stood in an isle to ‘think’ of what I wanted to do now that my item wasn’t there.  I must have been there for a good amount of time as I was asked by a couple workers if I needed help.  I wanted to say, ‘Yes I do, but you can’t help me’.  But I didn’t.  They didn’t appear to be on the breaking edge of GP Research!

%d bloggers like this: