PROGRAM

Our May meeting will feature two incredible “member” guest speakers: Kay Cobb and Karen Costa.

In a previous newsletter, we were introduced to Karen and her son Andrew. Learning to care for a child with an ostomy can be a challenge to say the least, but learning to adapt to the needs of a child who is entering puberty, can take on another aspect altogether. We are looking for ideas – practical, creative, solutions to help make Andrew's (and Karen’s) life a little easier!

Many of us struggle with intestinal issues long before our ostomies (Crohn’s, diverticulitis, cancer…) and therefore we have some idea of what an ostomy is and what to expect. But, for some of us, ostomies can be a new reality we “wake up” to, as a result of an accident or traumatic event. Kay will share with us how the split second of a gunshot changed her life.

PRESIDENT'S MESSAGE

Greetings Everyone,

One of my responsibilities as president is to check our incoming voice mail messages. It is an honor to act as a liaison between new ostomates and our OAGO group. 

The people I have gotten to speak with are truly amazing and their stories are heroic, awe inspiring, and sadly, sometimes devastating. I so wish I were personally able to make everything better, to fix every problem, solve every dilemma – but I cannot. I do not have the medical expertise, I do not have the financial resources, I lack the ability to change fate or time.

What I can do is point people in the direction of this incredible group. Collectively we offer some of the greatest of gifts: compassion, understanding, and empathy. We can direct people to wound care and ostomy nurses, print, video, and media information. And, we can offer free supplies to those who need them. Can we do more? I believe the answer is yes.

The most common thread, among all of the calls I have received, is the lack of communication between the medical community in the hospital and what actually happens once a patient returns home. There can be many reasons for this. This is not any one person or group’s fault, but, it is our shared responsibility. There must be something more we can do, to make this transition easier.

This is my challenge to you. Should/can we create better print materials, offer seminars, create videos, increase our presence, find partners in government offices (Medicaid)? What can we do? Please E-mail your ideas to [email protected]. I will compile them and share them with you as potential projects we can undertake in the future.

Please remember that every time one of these “phone calls” becomes a new member, we are adding more energy, talent, and enthusiasm, to our organization. As our numbers grow so does our power to do good things. I look forward to hearing everyone’s ideas.

Sincerely,

Erica Michaels

Have you paid your dues? We need your help to continue and grow our programming. If you haven't yet paid your dues, you can bring them to the next meeting, pay right from our website www.oagohome.org, or mail them to: Patrick Rodgers, Treasurer, 309 E Citrus Street Altamonte Springs, FL 32701

MEMBER PORTRAIT

Welcome New Member Rene Pirone

I was paralyzed in an automobile accident at the age of eighteen. I began utilizing functional electrical stimulation (FES) in 1987. In 1989 I gave birth to a son who is now a rocket engineer. 

I have modeled for talent agencies, been a member of ACRM (American Congress for Rehabilitative Medicine and majored in Digital Arts Media. I am fond of working with production crews. I love going live on camera.

 

In 2013 I attended the American Congress of Rehabilitation Event held at the Contemporary Resort in Orlando, Fl. This particular event included the demonstration of the first generation Indego Exoskeleton manufactured by Parker Hannifin, Motion and Control Global leaders. The company signed a contract with the Sheperd Center in Atlanta Georgia to market this Class Ii Machine to facilitate people with spinal cord injury to walk with arm canes. The study took two years to complete. The Indego Exoskeleton was also demonstrated in Europe. These exoskeleton s allow users to walk in public up and down stairs, across grass, and outside on the street. The FDA approved the device for purchases for users T7 level and below. Others are able to participate in outpatient therapy at the Sheperd Center.

Forty one years of paralysis has been a cake walk compared to the news I was given in February 2016. I was diagnosed with stage three carcinoma cancer of the bladder. The recommendation was to perform a radical cystectomy and remove my bladder. The operation was performed in May 2016. Since that time, I have been adapting to a new normal in my life that I never thought could be possible.

 

After my radical cystectomy surgery in 2016, the journey back to full health continues to be a challenge. I am looking forward to meeting other ostomates and participating in networking functions. I am particularly interested in the cruises. I will be seeking sponsors for the cruise coming up in February 2020. I will also be in touch with the Miami Project to cure Paralysis benefits coordinator to get upcoming scheduled events. It is of the utmost importance to stay in touch with others going through such life changing surgeries. Knowing there are others surviving and thriving in life is such an inspiration for everyone!

If you missed our April meeting...

Our last meeting "To Tell or Not to Tell" was both informative and emotionally moving. In addition to basic guidelines found in the ostomy community at large (videos, print information, etc.), members shared personal their experiences. First and foremost was the idea that "sharing" is a personal decision and should be respected as such.

There are several advantages of telling.

Keeping a “secret” can cause stress both emotionally and physically. You may find out that you are not alone; there are many other ostomate connections (“Oh, my dad had one!”). A recent report stated that there were well over a million ostomates in the US today. There will be some there to help you (know exactly what to do) in an emergency. Finally, you can help educate the general public by letting them see what an ostomate truly looks like: a healthy, positive, productive human being!

                       

There is a possible downside to telling.

Some people are simply not very nice. They can be small minded; they can be bullies. But, should what they say or think matter? Please remember that the behavior of these types of people can be affected by your personal attitude and confidence. As a trick, imagine that person going through what you’ve gone through…do you really think they could have handled it?”

Who to Tell

 

This is your decision! Some people tell only close family and friends, while others tell anyone at all, if the situation arises in a natural manner. It is highly recommended that you tell your employer or human resources. Accommodations can (and should) be made if necessary (more urgent bathroom visits) and emergency plans can be put in place ahead of time. One of our members is a teacher and shared how important it was to make arrangements ahead of time. Should it became necessary to leave the room immediately, the teachers next door would make sure her young students were not left unattended. 

When should you tell a potential romantic partner? Once again, the decision is different for every person and in every situation. However, suggestions included bringing up the topic of personal challenges in general. This could be a good topic over dinner. When it is your turn to share, discuss how difficult your situation was before your surgery, but how good things are, and natural your ostomy is to you, now. If your prospective interest has a negative attitude, it would not be a good match regardless. On a more physical level, some people suggest bringing up the topic before “wandering hands would reach below the belt!” *There are several videos that add humor to this discussion!

           

How Much to Tell



The amount of information should differ based on the age of and relationship to the person you’re telling. Prepare and practice a "scenario” first so you know exactly what you want to say and are not caught off guard. In fact, you can have two or three depending upon your audience (close friends, boss, etc.).

For children, use simple terms they can relate to in a positive and matter of fact voice. Be a little more serious when explaining why it is important not to jump on your lap!

If you prefer not to answer a question, thank the person for asking, but tell them that their question is not a topic you wish to share at this time. Redirect the conversation by asking them a question about a different topic.

Remember that sometimes too little information can cause misconceptions. Make sure you have the correct information. Learn the correct terminology (and pronunciation) for your personal procedure!

           

When to Tell

Tell when it feels right in your gut (sorry for the pun). Share at meetings! We get it! We’re here for you! This past meeting was a very emotional one. It was both heartfelt and cathartic. Please remember that you are amazing strong survivors.

Would You Like a Name Tag?

Can we make you a name tag? Please E-mail your first and last name and the correct designation (type of ostomy, family member, care provider, or medical professional) and we’ll try to have it ready for you at the next meeting.   E-mail: [email protected].

Panera Bread has graciously donated two wonderful prizes for our May OAGO raffle.

First Prize

  A free soup, salad, sandwich or “you Pick Two” each month for a year! ($125 value)

Second Prize

           A free loaf of freshly baked bread every month for a year! ($85 value)

        

Click here to purchase 1 ticket for $5.00 or 5 tickets for $20.00

Raffle tickets can also be purchased directly through our website or at the May meeting.

(Drawing will be held on May 18th!)

Encourage your friends to enter as well, but please be sure to read the note below!

*The gift certificates will be valid from May 31, 2019 through May 31, 2020. They are valid at participating Panera bread bakery-cafes located in central from Florida owned and operated by Covelli Family Limited Partnership.

Not redeemable for cash or gift certificates. Sorry, no replacements if lost or stolen.

It's an Ostomy Cruise! This 7 day, Eastern Caribbean cruise will leave from Fort Lauderdale on May 18th, 2019 and return on the 25th. Not only will you enjoy a relaxing, yet exciting, journey with Princess Cruise lines, you'll have the opportunity to attend your choice of lectures, social activities, and product demonstrations, specifically designed for ostomates. A single room inside cabin will be $1600 (taxes not included). For further information, please go to: www.travelwithcindy.com. You can also contact Cindy directly at Cruise Planners; 904-806-2067 or E-mail [email protected]

Adapting to life with an ostomy can a challenge. But what’s with these new words! Appliance? Pancaking? Barbie Butt? Some terms come from medical terminology, but others are “insider” words (slang expressions) used by ostomates who “live” them first hand.

Flush Stoma

A flush stoma is one that sits almost flat against the abdomen/belly. This can make it too easy for stool or urine to drain under the wafer thereby causing problems with the skin around the stoma. Although there are several alternate solutions (barrier wipes, stoma powders, etc.), it is often helpful to use a convex wafer/flange to help the stoma extend a little farther out.

Retracted Stoma

A retracted stoma is a stoma that does not protrude from the abdomen, but is recessed (indents). This can cause problems because it is easier for stool or urine to pool around the stoma, thereby causing skin problems. There are several alternate solutions, but one solution is to use a convex wafer that helps push the stoma a bit more forward. 

Prolapsed Stoma

A prolapsed stoma occurs when the stoma pushes forward (expands like a telescope) and protrudes much farther out of the abdomen than usual - it can extend out several inches! Although it is not usually harmful, it can be rather shocking to see when it first occurs. The condition can be temporary or recurring. *A curious technique, to return the stoma to its normal size, is the use of “table sugar.” The sugar is used to coat the stoma and absorb water from any edema (swelling). We are not recommending this as a substitute for medical advice.

Click to view helpful articles or videos!

Prolapsed Stomas

A Practical Guide for Stoma Problems

YouTube Video of an Ileostomy Prolapse

(Very Graphic ) but Very Helpful!

UOAA (United Ostomy Association of America)

The Hype about “Sublingual” Vitamin B12:

In calling this a myth, I should make it clear that sublingual vitamin B12 does work in delivering useful amounts of the vitamin. But it doesn’t really deliver the vitamin sublingually (at least, not to any significant extent), so you needn’t follow the instructions to hold it under your tongue. And other oral forms of vitamin B12 can be equally effective (although the “time release” versions should be avoided, especially by ileostomates).

Vitamin B12 is necessary for many metabolic processes including development of red blood cells, and also maintains normal functioning of the nervous system. Under normal conditions, it’s absorbed in only a small section of the terminal small intestine (ileum), raising the possibility of B12 deficiency if that section of ileum has been removed surgically or damaged by disease. People who may have lost that portion of ileum include some ileostomates, people who’ve had a failed J-pouch or Kock pouch, and some people with urinary diversions (especially continent urinary diversions) made using the terminal ileum. A condition such as Crohn’s disease may have damaged the terminal ileum, even if it hasn’t been removed surgically.

Until fairly recently, it was believed that vitamin B12 taken orally provides no benefit for people who lack the normal absorption mechanism involving the terminal ileum, so these people require B12 injections. Then it was discovered that, in addition to the normal absorption mechanism involving the terminal ileum, a small fraction of B12 taken orally (typically about 1%) gets absorbed by passive diffusion, and this happens along the entire intestine.

This observation provides the basis for safe and effective oral treatment of B12 deficiency, although it requires pretty large doses. The current US recommended daily value for vitamin B12 is only 6 micrograms (and if you check the amounts in multivitamin tablets or B12-fortified foods, you’ll see that they’re at most a few times this value). However, if you absorb only 1% of an oral dose (because you lack the normal absorption mechanism involving the terminal ileum), you’ll need to take 600 micrograms in order to absorb 6 micrograms. A typical recommended oral dose for treating B12 deficiency is 1000 micrograms per day (f you have short bowel syndrome, you may need even more). Although these doses are much greater than the usual recommended daily value, they’re quite safe, as there is no known toxicity to vitamin B12, even in very high doses.

The medical establishment has, by now, agreed that B12 deficiency can be treated effectively with oral supplementation. Meanwhile, the companies that make vitamin supplements have been producing “sublingual” B12 products that supposedly provide the vitamin more effectively by delivering it through membranes under the tongue. However, there has never been any scientific evidence that vitamin B12 can be delivered that way. These products are presumably based on analogy with medications like nitroglycerin, which are known to be effectively administered sublingually. But it’s a poor analogy. Nitroglycerin is a relatively small molecule (molecular weight 227) that passes easily through the pores in sublingual membranes. Vitamin B12 is a much larger molecule (molecular weight about 1357) which doesn’t pass through those membranes so easily.

The instructions for “sublingual” B12 say to hold the tablets under your tongue and let them dissolve for a length of time (usually 30 seconds) before swallowing. In reality, at most a negligible amount of the vitamin gets absorbed through sublingual membranes. Then, after you swallow the dissolved tablets, they’re absorbed lower in your digestive tract, as with any other oral formulation. Thus, the sublingual formulation “works,” but not any better than other oral formulations of the vitamin.

Several studies have compared the effectiveness of “sublingual” and regular oral forms of vitamin B12. One  study published in 2003  compared the effectiveness of a 500-microgram dose, administered in either a sublingual or regular oral form, in treating B12 deficiency. The result: both were equally effective. Another  study published in 2006 did a randomized, double-blind comparison for a vitamin B-complex preparation (including 1000 micrograms of B12), administered in either sublingual or regular oral form. Again, both forms were equally effective.

The conclusion so far is that “sublingual” B12 is a marketing gimmick. The effectiveness of oral B12 depends only on its dosage, so you should just buy the lowest cost version available at the desired dosage. Unfortunately, there’s another complication. An awful lot of the B12 tablets sold in sizes of 1000 micrograms or more are “time release” versions. These should definitely be avoided, especially by ileostomates and anybody else with a shortened digestive tract, as they may pass through your whole digestive tract before releasing an adequate amount of the vitamin. Even for people with a normal-length digestive tract, “time release” B12 is a bad idea. Considering the small fraction of vitamin B12 that gets absorbed (in people who lack the normal mechanism for B12 absorption), delaying that absorption further makes no sense.

Thus, “time release” B12 should be avoided. You’ll want a version that releases the vitamin fairly rapidly, although not necessarily as rapidly as the “sublingual” versions that dissolve in the mouth. “Softgels” are a good alternative that dissolve soon after you swallow them. Sometimes, assuming that a brand of B12 tablets isn’t marked as time release or extended release, it may still be unclear how rapidly it dissolves. In that case you can try it but, if you have an ileostomy, watch to make sure the tablets don’t come through whole into your pouch. If your only choices are between “sublingual” and “time release” formulations, choose the “sublingual” version, but you can ignore the instructions to hold the tablets under your tongue; instead, swallow them directly as with any other tablets.

Finally, if you think you may be vitamin B12 deficient, or have any doubt whether you are doing an adequate job supplementing your B12 level, you can ask your doctor to check your serum (blood) B12 level. This test can be added easily to routine blood testing.

Member News!

It is with great sadness that we recognize the passing of one of our members, Mark Watson. For those of you who knew him and/or those who would simply like to honor him, his funeral will be held Thursday, May 16 ^th at 5:00 p.m. at St. Richard’s Episcopal Church, 5151 Lake Howell Road, Winter Park, Florida 32792. Mark’s impact on our community continues through his donated urostomy supplies that are already helping others.

We have added a "Member News" section to our newsletter! Please E-mail any important life events: "stomaversaries," new jobs, birth announcements, impending surgeries, etc. to [email protected]. and we'll try to get the information into our next newsletter.

Thank you sponsors, donors, and advertisers. Your support of OAGO allows us to reach out to fellow ostomates and provide quality information and programs.

Are you trying to contact us? Looking for an ostomy nurse? Supplier? Or, do you need a copy of our membership form? You can now access this information quickly and simply, by clicking the links below. From there, you can either save the documents to your computer or print them out to hang by your phone.