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Wednesday, November 26, 2014

Handling Holidays with A Chronic Illness

I know this time of year is really rough for all of us. As someone with GP, I cannot eat like normal people do on thanksgiving. I plan to cook for my family and friends, but I was wondering how to deal with the fact that I can't eat like normal people and what to do about it. I did some research and found some articles that might help the chronically ill deal with this issue. Additionally, I found some information for family members who always tell us to eat something or try to force us to eat when we are unable to. I hope this will help everyone a bit.



Image taken from: http://images.wisegeek.com/sad-dark-hair-woman.jpg


WebMD (http://www.webmd.com/balance/features/chronic-illness-holidays) gives us a wonderful source for how to deal with the holidays and loved ones as well. The key seems to be planning ahead and communicating your illness and requirements in advance to family and loved ones:

"Rosalind Joffe, MEd, once hosted a Thanksgiving dinner for 22 people at her house. She planned it months in advance. She hired someone to clean. She created a menu and delegated various dishes to guests. A friend came over the day before the holiday to set the table. Relatives were assigned jobs to serve dinner and clean up afterwards. Joffe has the planning sense of Martha Stewart. She also has multiple sclerosis (MS) and ulcerative colitis.

While it was challenging to host Thanksgiving, she says she'd have felt worse if she hadn't. "The key was advance planning," she tells WebMD. "What I've learned is if I ask for help in advance, even with my own family, people don't feel put upon. They feel they're a part of the event."

Joffe is among the many people living with chronic illness -- defined as lasting more than three months, being persistent or recurrent, having a significant health impact, and typically being incurable. So, with Christmas and Hanukkah at hand, times when everyone is supposed to participate and feel cheerful, what are some strategies for coping?



Do Holidays Make Chronic Illnesses Worse?

There's always the temptation to abandon healthful living routines around the holidays. Eating too much, not getting enough exercise, staying up late, worrying about family members getting along -- all these things can make you feel worse. But do they negatively affect your health?

Joffe, who coaches people with chronic illness in the Boston area to thrive in the workplace, says it depends on the disease. "With diabetes, heart conditions, or epilepsy, for example, you must take care of yourself or the disease gets worse. With autoimmune diseases, such as MS, fibromyalgia, or lupus, your symptoms will get worse but not the disease itself."

What about the holiday blues? Do the holidays really bring on episodes of depression? Michael Thase, MD, during a WebMD Live Event, said geography could play a role. "As people living in the northern hemisphere, we seem to be somewhat more prone to development of depression in the fall and winter months. The fact that this period of risk coincides with our holidays is kind of like a bad coincidence. For example, I'm not sure that I've encountered any writing about the holiday blues in New Zealand, Australia, or South Africa."



Speak Up

"Holidays act like a lightning rod where all the physical and social concerns around chronic illness get really highlighted," says Patricia Fennell, MSW, LCSW-R. She explains that the demands and expectations around holidays can "out" people whose conditions were hardly noticeable. During the year, they spend so much of their energy working and handling the daily chores of living that they have little time left for socializing. Come the holidays, they're expected to show up and contribute.

"Many chronic illnesses, such as diabetes, depression, arthritis, fibromyalgia, etc., are 'invisible,'" Fennell says. "People go to work or volunteer or shuttle kids to school. Most of the time, they don't look sick. When illness flares up, their pain is invisible. Or they have bone-numbing fatigue, so bad that they can't take a shower and go to the store in the same day. There's a cultural misperception that says you're not sick unless you look sick. They need to make their illness visible by talking about it."

Fennell, who is president and CEO of Albany Health Management, Inc., in Albany, N.Y., coaches patients on how to negotiate needs. "People don't know how to ask for what they need. They'll stay home from a holiday party because they can't stand that long. We need a new social etiquette for people with chronic illness."



Party Strategies: Ask for What You Need in Advance

Fennell describes a typical holiday scenario. "You're invited to Aunt Jane's. Let her know that you'll do your best to attend her party, but that if your illness flares up, you may have to bow out. Ask her how much lead time she needs. She'll say, 'Anything's fine.' Tell her you'll call her 48 hours in advance to let her know. Uncle Bob will still be annoyed if you don't come, but if you predict that you're unpredictable, people will generally handle it better."

She advises stating your needs in behavioral rather than general terms. "Don't just tell Aunt Jane you'll have to leave early. Tell her you've been feeling fatigued and can stay only two or three hours. Also tell her that standing tires you out, and ask her to have a seat for you. Putting it in behavioral terms makes it easier for Aunt Jane to conceptualize and to accommodate."

Many hosts and restaurants have become accustomed to considering various dietary needs for guests who have heart disease or diabetes or another condition that requires a restricted diet. "They should be offering options for people," Fennell tells WebMD. "If you don't know what's being served, carry a large handbag with snacks and water, or offer to bring a dish that can be shared with others."

When you're the host, whatever you do don't wait till the last minute to ask for help, says Joffe. "You may not get the help you need. And if people do help, they might resent it. Become an expert at planning. Asking in advance allows people to help gracefully."



Managing the Handicap Parking Space

Shopping and gift giving present special challenges, not the least of which is managing the mall. If your illness is invisible, the challenge can start when you get out of your car. Some less-than-jolly shopper who parked way out in left field will let you know that you have no business parking in a handicap space. Try to think of a humorous retort, like that of a cancer patient who plucks off her wig and smiles.

Joffe advises not letting presents and errands get out of control. "Many people with chronic illness aren't in the best financial situation but don't have the energy to shop for bargains. Plan in advance. Take a day off work so you can shop yet avoid the weekend crowds. The key is what matters most to you. Is it going into your bank account? Would a simple note do? Don't go into lock-step motion."



Ways to Relieve Holiday Stress

An article in Arthritis Today offers three tips for managing holiday stress:

Daily rest and relaxation. Don't get stuck in a never-ending to-do list. Do a crossword puzzle or take a walk or a nap. The mental and physical break will rejuvenate you.

Prioritize. Decide how much shopping, cooking, or partying you can do and stick to it. Ask for help.

Volunteer. Take toys to the Marine Toys-for-Tots Foundation, take food to homebound seniors through Meals on Wheels, or provide goods and services for Hurricane Katrina victims. It will boost your spirit and remind you what the holidays are about.

Patch Adams, MD, the real doctor whose life was the basis of the Robin Williams' movie, would agree that volunteering is good for you. He heads the Gesundheit! Institute in Arlington, Va. It's the umbrella organization for his work to raise funds for a variety of projects, including the building of a free hospital in rural West Virginia.

He tells WebMD, "My best advice for someone with chronic illness coping with the holidays is to work out with their families not to give presents, but instead to give money to local families who are poor, and consume half of what they normally consume. Make it about the spirit of giving."

The numbers of people with chronic illness are growing, and that's not necessarily a bad thing, says Fennell. "People are living today with heart disease and cancers that were once considered terminal illnesses, not chronic illnesses."

The growing numbers also mean you're not alone. Next time you go to a holiday party, look around. Some of those healthy looking people may have chronic illnesses, too."





This part is for your loved ones, family and friends and dealing with your loved ones, family, and friends. It's to help them understand what we go through and what they can do for the chronically ill. This source does talk about making food for your chronically ill loved one, but with GP, that can be a challenge. We have a very strict diet but you can modify this article to match up with your loved one's dietary restrictions.




According to Kevin M.D. (http://www.kevinmd.com/blog/2011/11/living-chronic-illness-holiday-season.html):

"In the U.S., we’re getting ready to celebrate Thanksgiving. Soon, people around the world will turn their attention to the holiday season. Chronic health problems can take a toll on relationships any time of the year. Most people have to experience unrelenting pain or illness themselves before they understand how debilitating it is, physically and mentally. Loved-ones (by whom I mean family and close friends) may be in some form of denial about what’s happened to you, or they may be scared and worried about the future. Bottom line, suffering from a chronic condition can be an ongoing crisis—for you and for those you’re close to.

That crisis can come to a head during the holidays when people’s expectations of one another are high and when stress levels for everyone are likely to be off the charts for any number of reasons—health, financial, relationship issues. If you’re like me, during the rest of the year, you carefully limit interactions with others in order to manage your symptoms; on a typical day, your most complex decision may be to choose between showering and shopping! But when the holidays arrive, you’re suddenly thrust into the middle of a lively and chaotic social scene where you’re expected to participate in a range of activities, often for days in a row. A bit of advance warning to loved-ones can go a long way toward minimizing stress levels over unrealistic expectations.

I know that this piece won’t apply to everyone. One of the heartbreaking consequences of living with chronic pain and illness is that some people are unable to be with loved-ones at all during the holidays, either because people are too disabled by their pain or illness to be able to gather with others, or because family and close friends having drifted out of their lives. I know the pain of that isolation; I’ll be writing about it in my next piece.

For those of you who are able to gather with others, the holidays can be a recipe for double disaster—the increase in activity exacerbates your physical symptoms, while coping with sadness, frustration, and maybe even guilt about your physical limitations gives rise to emotional pain. No wonder many people with health problems dread the approaching holidays.

If you’re one of the many people with chronic health problems who don’t look sick, the initiative is with you to make your condition visible. Here are some suggestions for helping loved-ones understand what your life is like and for giving them a heads-up on what to expect from you during the holidays.



Share information with them from the Internet or from books

Often the best way to educate loved-ones about chronic pain and illness is to use a neutral source because it takes the emotional impact out of the communication. A quick web search will yield a host of organizations devoted to every conceivable medical problem. Print out select pages or forward a few links to family and close friends. Alternatively, if you have a book about your condition, photocopy the pages that cover what you’d like them to know about you. In your accompanying note, keep it “light”—you could joke that “there won’t be a test.” But also make it clear that this favor you’re asking is important to you.



Write a letter

Many years ago, two friends of mine were in couples therapy. They weren’t able to speak to each other about their marital problems without one of them shutting down emotionally and the other reacting by shouting recriminations. Their therapist told them to write letters to each other expressing their feelings and their concerns about the marriage. It turned out to be a major first step in healing their relationship.

If you decide to write a letter, be sure it’s not accusatory. In composing it, use the word “I” more than the word “you.” Without complaining, express how difficult it’s been for you to adjust to this unexpected change in your life and how you wish you could be as active as you once were during the holidays.

You could briefly describe what your day-to-day life is like, including how unpredictable your condition is which means that you can’t know for sure how you’ll feel on the day of the actual gathering no matter how much you rest in advance. (This is the hardest concept for most loved-ones to comprehend—that we can spend weeks before a big event in full “rest mode,” but still feel very sick when the day arrives.)

I would end by telling them what to expect from you during the holidays—that you may have to skip some events, that you may have to excuse yourself right after eating to go lie down, that you may have to come late and leave early. In my experience, spelling out my limitations ahead of time is helpful not just to others, but to me, because I find it much easier to exercise the self-discipline it takes to excuse myself from a room full of people if I know that at least some of them are already expecting it.

P.S. It will be tempting to send an email, and if you have a lot of people you want to communicate with, it may be the most feasible way to reach everyone. But one thing’s for sure: people will read a handwritten letter, antiquated document that it’s become!




Find that ONE ally and enlist his or her help

If you have just one close friend or family member who understands what you’re going through, enlist his or her help in explaining your condition and your limitations. Before the holidays start, you could ask your ally to talk to loved-ones on your behalf or to be present when you talk to them. Ask your ally to be supportive if you have to excuse yourself in the middle of a gathering, or even to let you know if you’re wilting (as we call it in my household). It’s so helpful for me to be “prompted” by my ally because, when I start to overdo things, adrenaline kicks in which fools me into thinking I’m doing fine. But using adrenaline to get by just sets me up for a bad crash later on.

Your ally may be a close friend or family member who’s just waiting for you to enlist his or her help. Think long and hard before you decide there’s no such person in your life.




In the end, you may have to recognize that some loved-ones may never accept your limitations

Some family and close friends may refuse to accept that you’re disabled by pain or illness. I know this from personal experience and it hurts. Try to recognize that this inability is about them, not you. Don’t let their doubt make you doubt yourself. Your medical condition may trigger their own fears about illness and mortality, or they may be so caught up in problems in their own lives that they’re not able to see their way clear to empathize with you.

Just as you can’t force people to love you, you can’t force people to accept you. But getting angry at them just exacerbates your own symptoms. That’s why it’s important to protect yourself from allowing their lack of understanding to continually upset you. Think of it as protecting yourself from another chronic condition: chronic anger.

The physical suffering that accompanies chronic pain and illness is hard enough to endure without adding emotional suffering to it. When I feel let down family or close friends, the first thing I do is acknowledge how much it hurts. Then I reflect on the many possible reasons for their behavior. Finally, I work on genuinely wishing them well. These three steps immediately lessen my emotional suffering.

As you experiment with these suggestions, treat yourself kindly. Don’t blame yourself if one of them doesn’t work out. Instead, give yourself credit for having had the courage to try! My heartfelt wish is that your loved-ones come to understand and accept your limitations, but that if they don’t, you’ll be able to accept them as they are without bitterness."





According to EmpoHER (http://www.empowher.com/wellness/content/helping-chronically-ill-over-holidays):

"One of the unique problems that comes with chronic illness is that ... it lasts so long.

Some chronically ill people are fortunate to have a solid support network of family and friends. For others, things are very different.

If there were people interested in helping, while they may have been dedicated and compassionate at first, the long haul proved to be too long. The sprint they could run was too short for the marathon of chronic illness.

Many of us have outlasted our helping companions and carry on down the bleak road alone.

Do you know someone who is alone this holiday season? Maybe you can't commit great blocks of time or resources to their care and comfort.

But if you can spend a little time, and maybe even a little money, and you just need some suggestions, you're headed in the right direction.

You don't have to look for big things to make a difference for many who are chronically ill.

Things that you may take for granted, that seem like no big deal in your own life can be things that have stumped the chronically ill with a wall of impossibility for a long time.

Ever made lunch? Fixing something for your friend will not only brighten their day with your caring actions, it will also take care of a practical problem.

Some people who are chronically ill must spend most of their energy putting a meal together, needing to recuperate for the rest of the day afterward. Others just end up not eating.

Washing laundry, sticking it in the dryer and doing some folding are simple chores. Having a friend come over to go through these paces can bring a sense of order to a home that may be short on that quality.

Clean clothes, especially when they've been hung up and placed in drawers, bespeak affection and closeness for someone who may not feel that very often. Not to mention, you will save them their little energy quota for the day for other things.

When you have to run to the store, perhaps you could call or stop by to see if your friend needs anything as well. One trip, two sets of errands accomplished. Less stress and pressure on your friend, and you go home feeling like you've made a difference.

This time of year, snow can be a going concern in many areas of the country. Chances are your friend can't lift a shovel let alone clean a walk or driveway.

Whether we're talking about a shovel, a snowblower, or a snow plow -- whether you do the job yourself or pay someone else to do it -- removing their snow can also remove the burden of being faced with an insurmountable task.

And if you'd like some hot chocolate afterwards, you could come in and spend time with your friend ... and make hot chocolate for both of you.

The possibilities, really, are endless if you want to help someone who is chronically ill. The holes in their abilities and resources are often vast and widespread.

Do it for the holiday season, or just do it for a friend whose daily existence may be tougher than you can begin to fathom."






Dealing with isolation can be a huge problem for gastroparesis patient and also the chronically ill. Many of us are too sick to go out anywhere or even be around food. In that case, the source below will give you some tips on what to do when you're isolated during the holidays.






According to You Don't Look Sick (http://www.butyoudontlooksick.com/articles/guest-writers/tip-handling-isolation-that-comes-from-chronic-illness/):

"The title is ominous, I know. But for so many of us that suffer from chronic illnesses, it’s an all too true reality. I must preface this by saying that not all people who suffer with a chronic illness experience this. However, the subtleties of it grow as time passes and one is confronted with the reality of it, be it large or small, at some point in their lives.

It may be as small as the awareness of the decrease of invitations by friends due to our physical limitations. For some, that awareness grows to a more glaring, in your face, epiphany that friends that were always there before suddenly wish no part in your life…excuses a plenty. It’s not even relegated to just friends. Family roles play a big part of isolation experiences for the chronically ill. Those closest to us are often the ones to fall into one of two categories. Faithfully standing by no matter what or those that turn a blind-eye and deaf-ear to our honest answer to their question, “How are you?”

It’s important for the chronically ill to have a plan to handle times of feeling isolated. This is true whether you’re feeling isolated now or think it’s a possibility for your future. The realities of life are handled better if we understand the possibilities and have a plan on ways in which to deal with such times. Let’s talk about some ways to handle isolation times in your life.

We’re blessed to live in a time of the information super highway. Social network sites make it much easier to remain in our homes, if needed, yet still be interactive on a day to day basis. Whether it be local friends and family or online acquaintances, it’s there for our using and can keep us connected to the real world. Some suggestions might be the bydls.com on facebook or the butyoudontlooksick.com message boards

Not only do we have a multitude of e-social activities to participate in, we have a vast array of research at our fingertips. We can be pro-active in our medical care simply by spending time doing a bit of our own educating.

Can we say real life support groups? If ever there was a source of interaction for the chronically ill and isolated, it’s support groups. Some of the most wonderful people you’d ever want to meet are in a support group and can truly say, “Been there, done that!” Or, they say nothing at all but have golden ears to listen with.

Blogging is one of my favorites. It’s like your online diary. I like to be able to express myself, and even my feelings of isolation, in words. Many blog sites can be set to private so that no one, other than those you want, can read them. Many of the aforementioned support group sites offer their own blog space just for you. You never know when someone will read your blog and be totally blown away by the knowledge that someone else is going through exactly what you are.

So, you see, isolation doesn’t have to take over. Yes, there are times where quiet reflection is needed but no longer do we have to draw back into a dark place in our minds where loneliness rules. Like the old yellow pages ad said, “Let your fingers do the walking!” Get out there via the internet and keep in touch with friends and family. Find new friends that can relate to what you’re going through and can offer hope, encouragement and support that you may not have otherwise. It’s a good choice to make and certainly a good way to handle isolation for the chronically ill."


I really hope this article will help you deal with the holiday stresses. I know all holidays are centered around food, and it's hard to ignore. But, remember, even though the holidays are tough, YOU ARE TOUGHER!

Tuesday, November 25, 2014

How to Feel Sexy/Have Sex with Gastroparesis or a Chronic Illness

I know that if you have a chronic illness, like gastroparesis, it can be difficult on you and your partner's sex life. I actually had to stop in the middle of sex to vomit into a bucket. That kills the mood. If you have a feeding tube, it might be worse. Where do you put your tube? How do you feel sexy when you feel ill all of the time? What can you do about it? I've researched some great sources that may help you with your sex life, even if you have a chronic illness. If you have any tips, please send them my way and I'll edit this blog entry and credit you with the information. You can email me at: emilysstomach[at]gmail.com.



Taken from: http://www.healthline.com/hlcmsresource/images/slideshow/Ways-Sex-Helps-You-Live-Longer/278x328_Ways_Sex_Helps_You_Live_Longer_1.jpg




According to But You Don't Look Sick:

1. Communicate- Be open and honest with your sexual partner. Share with him or her your concerns and fears. Listen openly to their concerns as well, and see if the both of you can come up with a resolution that can satisfy equally.

2. Plan ahead- Chronic illness makes spontaneity very difficult and can create a looming fear of not being able to perform on the spot. My husband and I have “date nights.” This is just another way we circumvent “bad timing.” You can prepare by taking warm baths with Epsom Salt or take a few over-the-counter pain pills to reduce stiffness and aches. Perhaps throw a light massage in the mix! See if your partner can pitch in more that day with the housework or with the kids. Planning ahead may not make up for spontaneity, but it does add to anticipation!

3. Learn to accept your body- Accepting how your body looks and feels is not only essential to maintaining a healthy identity, it will also reduce the anxiety of having an intimate encounter. You may have a few more lumps and bumps, and extra weight which may not be acceptable for you, but you must realize that not accepting yourself is communicated in your intimate relationships. If you are uncomfortable with you, it makes it equally hard for your partner to be comfortable. Realize that you are doing the best you can with what you have, so give yourself a break!

4. Know the side effects of your medications- The side effects to many medications, can reek havoc on the body, and it would be wise on your part to read your prescription bottles carefully. Some of the side effects listed on your prescriptions may not relate directly to sexual performance, but pay attention to side effects that read: dizziness, drowsiness, nausea, mood swings and dryness, since these symptoms will effect you even during your intimate times, so it’s best to prepare. You may need to use lubricants, change sexual positions, or consult your physician (in the case of impotency or soreness). It’s always best to be educated! For people like us, who live with a chronic illness, we may need to activate a bit more patience and a whole lot of creativity when it comes to our “bedroom business”, but if there is a will, there is a way! You deserve intimacy and a healthy sex life like everyone else, and so does your partner. - See more at: http://www.butyoudontlooksick.com/articles/guest-writers/breaking-the-ice-on-sex-intimacy-chronic-illness/#sthash.U7ZTiwtn.dpuf


Family Doctor almost says the same things:


How can a chronic illness affect my sex life?


A chronic illness is a health problem that you have over a long period of time, such as heart disease, diabetes, arthritis or cancer.

People who have a chronic illness can feel tired and depressed a lot of the time. They may have pain, stiffness or trouble sleeping. They may need medicines or other treatments that can affect their sex life. They may have a surgery that changes how their body looks. As a result, they may feel less interested in sex, or they may not enjoy sex like they used to.

Suggestions for keeping your sex life healthy if you have a chronic illness

Read about your illness. There are many self-help books that discuss sex and specific chronic illnesses. You can also join a support group to talk about your illness.


If you have a chronic health problem, the following might help you get ready for sexual activity:

Plan sexual activity for the time of day when you have the most energy and your health problem bothers you the least.
Be sure that you are rested and relaxed.
Wait at least 2 hours after you eat to have sex.
If you need pain medicine to feel better, take the medicine 30 minutes before sexual activity.
Limit the amount of alcohol you drink, and avoid using tobacco in any form. Alcohol and tobacco can affect sexual function.


The following might help you maintain your sex life:

Hold hands, hug and touch your partner, even when you do not plan to have sex.
Use your senses to make sexual activity more enjoyable. For example, have satin sheets on the bed, light some scented candles or play music.
Tell your partner what you like and do not like. Listen to your partner's likes and dislikes.
Try different sexual positions to find positions that are comfortable for you and your partner, or use pillows for comfort.
Try personal lubricants (one brand name: K-Y Jelly) to help reduce discomfort with sexual intercourse.


Talking to your partner:

Even with the best of intentions and preparation, there may be times during your illness when you decide that you do not want to be sexually active. Talk to your partner about how you feel and why you feel that way. Talk about how you can help your partner deal with his or her feelings and interest in sexual activity.


Talking to your doctor:

Talk to your doctor about any concerns you have about your sex life. Your doctor may have some suggestions that can help.

Be sure to let your doctor know if you are feeling depressed or if you think that side effects from a medicine are affecting your sex life.

See more at: http://familydoctor.org/familydoctor/en/prevention-wellness/sex-birth-control/sex-sexuality/chronic-illness-how-it-can-affect-your-sex-life.html


Taken from http://www.aafp.org/afp/2003/0115/p347.html


According to SERC:


Suggestions for People with Chronic Illness


Illness, whether short term or chronic, will most likely affect sexuality in some way. There may be changes in how you feel about body image, sexual self‐esteem, and intimate relationships. How these are impacted is, in part, about your unique story. Your health care providers may not address these issues and it can be embarrassing to bring them up yourself. It can be difficult to bring this up with a partner, as well.

The following suggestions can help you deal openly with the problems that may come up as a result of chronic illness. They can also help you explore a variety of ways to continue enjoying yourself as a sexual person.


Remember that you are still a sexual person but might need to explore new ways to enjoy your sexuality.


Do not be discouraged! It will take time to unlearn old ways of thinking and acting.


Think about these questions: are you focused on performance rather than pleasure? Are you goal‐oriented rather than pleasure‐oriented? If so, it’s time for a change!


Remember that many people have sexual problems because of incorrect information and assumptions about the effect of their illness. Get the facts. Then figure out what actions you can take.


Talk with your physician about common sexual issues for people with your condition. If your primary clinician is unable to help, look further. A session or two with a sexuality counselor may be exactly what you need.


Realize that medications for chronic illness may affect sexual desire and response. Ask your physician about substituting or reducing a medication.


Talk with your partner about your feelings, your fears, and your desires. What used to seem like a natural, sexual progression may now need careful planning.


Plan for sexual activity when you and your partner are rested and not distracted.


Remember there are many pleasurable and satisfying sexual activities that do not involve intercourse.


If possible, join a support group and talk with others who have the same physical problems. Ask them what adjustments have helped them.


If you have vaginal dryness, try a lubricant. This problem – causing pain and distress for many women – is often relieved by lubricants from the local pharmacy.


Be adventurous: read books, browse the web, experiment with new sexual positions and sexual aids such as vibrators.


For more information, please visit:
http://www.serc.mb.ca/sexuality-relationships/sexuality-and-disabilities/suggestions-people-chronic-illness


As for sex with feeding tubes, I need to do a bit more research on that. I'll have to get back to you. But, these are just general points to help you with your sex life if you are chronically ill. If you have a feeding tube and could help me out with writing about it, I would greatly appreciate it.

If you want to read on how to feel sexy with chronic illness, please visit: http://www.butyoudontlooksick.com/articles/daily-living-tips/how-to-feel-sexy-when-you-are-in-pain/

Going on a Cruise with GP

Well, for the past week, my husband surprised me with a cruise to the Carribean and Bahamas for our ten year wedding anniversary. I have to admit, I was a bit apprehensive. I had been really ill with a gastroparesis attack or flare for a while now. However, I wanted to get away. I needed to rest and the ocean sounded wonderful. Swimming and a hot tub sounded wonderful. I really wanted to make the best of it and crossed my fingers that I would have some good days. I didn't want to disappoint my husband or make him feel bad. It was really sweet of him to take me on a cruise that I've never done before, plus go to islands I wouldn't have thought to visit. So, I packed and was feeling excited. I had hope and that's important.






I was scared that I would be sick on the cruise in an RV sized bathroom:


The corner of the room in the far right was the restroom.


I have to admit, though, the cruise was relaxing. I think the ocean helped a lot, believe it or not. One of the few things that doesn't make me sick is the ocean. I don't get sea sick. However, the cafe we ate (or me, barely ate at) was buffet style with a lot of people. It made me sad to look at all of the things I couldn't have. Also, people seemed to bathe in perfume or cologne. It made me gag a few times in the elevator going up to the cafe. When I got there, all I could think was:




I did make the mistake of trying to eat and be normal. I went horseback riding in the ocean, which was amazing. Then, I noticed my belly swelling up like I was nine months pregnant. I felt so self conscious and unbelievably fat. I'm heavy already but not usually that heavy, which is weird to me because I almost never eat. The people at the horse farm weighed me in front of everyone because they said the horses couldn't take someone over two hundred and thirty pounds! I've never weighed anything like that, ever. I just felt sad and depressed but riding in the ocean with the horse made it better.


I was a poster child for this picture.



When I do eat, I get cramps (really bad ones), and then I start vomiting. The last two days of the trip, I spent in and out of the bathroom and was so amazingly ill. I started crying at one point because I felt like I couldn't go on. My throat and belly hurt so much, even my knees hurt from bending over to get sick.




I got to celebrate my tenth anniversary without a flare. Thankfully, it waited until the next day. I had so much fun on my cruise. I got to sit on the balcony of my room, listen to the ocean and read. If you're thinking of going on a cruise, I'd recommend it. I have a blog article about traveling with GP that may help you if you think you wouldn't be able to travel:


Previous blog article: http://www.emilysstomach.com/2013/07/information-about-gastroparesis-and.html

I was scared but everything turned out all right. I say if you want to travel, you should go for it. Don't let your GP stop you. I didn't.

Tuesday, November 4, 2014

Don't Fart During an MRI


By: Elaine Ambrose
Author, syndicated blogger, featured humor speaker, publisher, and retreat organizer knows that laughter - with wine - is the best medicine.



Posted: 10/27/2014 4:33 pm EDT Updated: 10/27/2014 4:59 pm EDT


I share this true but pathetic story to commiserate with other tortured souls who relentlessly endure and survive extreme humiliation. We're a group of accident-prone fools who regularly trigger embarrassing situations that would permanently traumatize a normal person. My experience this week will be difficult to surpass: I farted inside an MRI machine.

In medical terms, I had torn the meniscus cartilage that acts as a shock absorber between my shinbone and thighbone. In middle-age woman terms, two demons from hell invaded my body and lit fires in my knee and then danced around poking the raw nerves with electric forks. The pain was beyond intense, and the accident severely damaged my body so I couldn't stand, walk, or even crawl to the wine bar.

Five drug-induced days later, I finally saw an orthopedic surgeon. He manipulated my knee until tears streamed down my cheeks and I threatened to tear off his arms. It should have been obvious that I was injured by the way I was ripping off chunks from the sides of the examination table. I silently vowed to add him as a nasty character in my next short story. Finally, some lovely angel gave me legal narcotics. Soon my ravaged leg was a big, bandaged joke, and I laughed and laughed.

A few days later I experienced the MRI - a magnetic resonance imaging procedure that uses a magnetic field and pulses of radio waves to make images of damaged ligaments and joints. A handsome young technician helped me into the tube of terror and strapped down my leg. I nervously remarked that a first name usually was required before I allowed anyone to tie me in a bed. He didn't laugh but ordered me to hold still for 45 minutes. So there I was, in pain, suffering from claustrophobia, moving on a conveyor belt into the white torture chamber, and I didn't have a clue how to remain motionless. And, to complete the distress, my only audience wasn't amused by my jokes.

After about 20 minutes, I started to get anxious. I was tied down in a tunnel and could only hear strange beeping noises and grinding sounds. For all I knew, they were deciding which body parts to extract and sell on the black market. Then a queasy feeling predicted a pending passing of gas. I bit my tongue, pinched my side, and tried to focus on a pastoral scene in a green meadow beside a babbling brook. I could hear my mother's advice: "Squeeze the dime." I fidgeted.

"Please hold still," came a voice from outside the shaft of shame.

I watched as the lights and numbers revealed how much time remained. Three minutes. I could do it! No! My body betrayed me at the one-minute mark. I was trapped and helpless so my nervous body did what it does best: it farted. I released gas with the intensity and conviction of a team of sumo wrestlers after a chili-eating contest. And the confined space caused the sound to be amplified as if a dozen foghorns had simultaneously activated. I didn't know whether to cry, giggle, or call my son and brag.

"Well now, I think we have enough images," the handsome technician said, suppressing a laugh.

The magic bed moved backwards into freedom, bringing along the putrid stench of decay. I was mortified as my imaginary meadow became a ravaged pasture full of rotting manure. What in the hell had I eaten? I avoided eye contact with the timid technician and hobbled back to the dressing room. Once again, I accepted my fate of being the perpetual, reluctant clown, the oddball, the one who farts during a complicated medical procedure.

If I ever need another MRI, I'll request a facility in Texas. Everyone farts there.

Follow Elaine Ambrose on Twitter: www.twitter.com/ambroseelaine

More:
Mri Surgery Farting Midlife Humiliation Humor

Wednesday, October 29, 2014

Pregnancy and Gastroparesis

I am featuring a series of guest bloggers to blog about things that I don't have personal experience with, who can better answer your questions. A lot of questions that I've received recently have to do with GP and Pregnancy. I don't have any experience with this but thankfully, I had two women offer to share their different stories with you and try to alleviate any questions that you have about pregnancy regarding GP.


These two, brave ladies are willing to share their experiences with you. If you have any further questions, please leave it in the comments so that they can answer them for you. I am grateful for all of my guest bloggers, for tackling the issues that I feel are important. I'm very grateful for their stories and I hope that you have a good read!




Image taken from http://pregnancycmwa.files.wordpress.com/2013/05/pregnancy-happy-face.jpg



My Pregnacy with GP
by: Julienne Floetke


I have had Gastroparesis for 6 years now. I was able to get pregnant very easily (which is such a blessing, I know it's not easy for everyone). I had a miscarriage with my first pregnancy last year and am 25 weeks pregnant right now. I was incredibly scared to get pregnant because of the GP. With my first pregnancy, I stopped taking the medicine I was on (Nortriptyline) due to the risks. It was extremely difficult coming off the medicine, but I didn't really have a choice. I chose not to go back on the medicine so that when I got pregnant again, I wouldn't have to worry about it. (I had surgery and had to wait 8 months to try again).

The first 17 weeks of this pregnancy were extremely challenging. I have never felt so sick in my life. I did not understand how there were so many people in this world and why people would continue to have babies if it was like that for everyone. It has definitely improved and my thoughts have also changed.

Seeing my little baby and feeling her move around is so worth the pain and struggles that go along with being pregnant and having GP. I've heard of many people getting better while they are pregnant though, so my story isn't the only way it could go!

Every pregnancy is different. I am still taking Zofran every night to prevent vomiting from morning sickness. I was scared about getting pregnant, but my want of being a mom overruled those feelings. Every day is different with pregnancy, just as it sometimes is with GP.

I've never thought about giving GP to her because no one else in my family has it. I never really thought of it as genetic, which it could be, I don't know. If she does get it though, I've learned so much through my journey I would hope to be able to help her. I pray that she is perfect and healthy though, of course.
I have mentioned on the forum before that I struggle really bad with vitamins. I've always gotten sick with vitamins so trying the prenatal, the prenatals without iron, the gummy prenatals, and Flintstones have taken a toll on my stomach.

I feel EXTREMELY guilty that I haven't taken vitamins (even a little consistently) since I was 8 weeks pregnant. I was trying to eat better to get more nutrients, but that went down the drain when I had a flare and then got kidney stones.

I have researched online about people not taking vitamins and everything pretty much seems negative. I hate not being strong enough to take them every day or even once a week. I feel like I'm failing and that is not a good feeling. I feel like I would do a better job of taking care of her outside of my body at this point. I'm praying she comes out healthy and well nourished. That's all I can do sometimes.

Kidney stones with bowel issues aren't very fun either, but because I deal with pain every day with my stomach, I just use my tactics to get through it. I try not to take Tylenol because I feel like that is something I do have control of and I just work through it. I get very down about having Gastroparesis and feel like it's extremely unfair to have to work so hard at things people can do without a problem. But I cry and get it out and focus on the things I can control.

Being chronically ill makes everything a challenge, and pregnancy is no different. However, those of us with GP are a rare breed. We are strong. Our bodies were made to have babies and I have trust in my body that it will do what it needs to in order to get her earth side healthy and whole. Thanks for listening!





My Pregnancy Story
By: Melinda Horne


I had two kids with GP (gastroparesis) but I did not know that I had GP at the time. During my first pregnancy, the most difficult part was getting pregnant. We tried for nine years before finally succeeding, and we had two early miscarriages before that and both were before eight weeks along.

We spent years having test and seeing fertility doctors with no real explanation as to why we could not get pregnant. I did know that I had PCOS (Poly-cystic Ovarian Syndrome) but found that I was ovulating every month with no luck.

The month we found out we were pregnant, the doctor was just as confused as us, as the test showed we did not ovulate that month. Clearly, it was wrong.

My pregnancy was pretty normal aside from the fact that I vomited twenty-four seven, and at two months pregnant, I left work because I couldn't work newspaper hours on no sleep/no energy. I couldn't even answer the phone at work as I was always in the bathroom.

One day I fell asleep at work at my desk and after that day I did not go back. I knew when the baby came that I would have to stop working at the newspaper, as both parents can't work 12 hour days anyway. I did better at home with the vomiting because I could lay down when nausea hit hard.

The last month was bad so the doctor put me on Phenergan and it worked but it also made me sleep for long periods of time, like twelve to eighteen hours. I only woke up to drink protein/meal shakes. I was obese and gained only eight pounds with her during the pregnancy.

I delivered vaginally in only eight hours (lucky for me since the epidural didn't work even after being stuck 5 times we never found the right spot), record time for a first pregnancy. She was an ounce shy of being 7 lbs and completely healthy.

About two years later we decided to try again and it only took us six months to get pregnant. I was still sick this time but learned from the first pregnancy not to eat certain heavy foods that did not stay down, and to supplement this with a lot of meal replacement shakes and soft foods.

I didn't have any complications until 29 weeks when we discovered that I had a slow amnio leak and was forced to drink 72 ounces of water a day. I lived in the bathroom. At about 32 weeks, my water level was low. So from that point on, we went to hospital twice a week to check fluid levels, and to have a bpp (bio-pyschical profile) and non stress test. My doctor kept a close eye on us. We got a lot of looks at the baby and everyone said that the baby would be a girl.

At 34 weeks, while having a bpp (bio-pyschical profile), while we looked at baby's breathing and took measurements, the tech and I discovered that it's actually a boy!

A week later at my bpp and stress test didn't score well. They did a more in depth ultrasound and the baby was not growing much. My fluid level was low, 10 is a good fluid level and 5 is danger zone, mine was 1.2. The doctor said they would have to treat me like my water broke and deliver me.

My body wasn't really ready and induction is long and painful. I delivered him the next day vaginally, without any major problems. He was born and weighed 5 lbs 7 ounces, and was small but healthy. We found out his lungs and everything was developed. He stayed with me and then went home with me after a few days.

I would highly recommend a good doctor that deals with high risk patients and babies. I am convinced that the doctor is why my son did so well. Being diagnosed with GP, I would want a doctor that at least was willing to listen to concerns and make sure you get the medical care you need while pregnant with GP, even if that means dealing with your GI doctor to manage you.

Tuesday, October 28, 2014

Suicide and Chronic Illness

I am involved with a lot of gastroparesis groups on Facebook. A few weeks ago, we lost one of our members to suicide. I wanted to address this, so that her death had some meaning, and to reach out to anyone else who is feeling lost and lonely. Please know that you aren't alone. Many people with chronic illnesses have a higher chance of suicide, according to medical studies.






According to The Guardian (http://www.theguardian.com/society/2011/aug/23/suicide-chronic-illness-study,



"At least one person takes their life every day while suffering from a chronic or terminal illness, and the government is neglecting this hidden trend, the think tank Demos has said.

In a study, The Truth About Suicide, researchers found at least 10% of suicides in Britain are linked to terminal or chronic illness, accounting for more than 400 deaths a year. The think tank, which said the study marked the first attempt to estimate the scale of suicides related to illness, wanted to challenge the notion that taking one's own life is largely about a patient's mental health rather than physical state. Researchers also found some people were killing themselves at a "younger age in order to avoid severe symptoms and greater pain later in life".

The figures come from a mixture of sources, including data from freedom of information requests to 147 primary care trusts, which are supposed to conduct annual suicide audits.

Researchers also conducted a series of interviews with serving and recently retired coroners. Demos also had access to suicide inquest files in Norwich from May 2006 to December 2010 to identify the proportion of suicides that involved people with terminal or chronic health conditions. It said that of the 4,390 individual suicide cases last year, 10% concerned people "experiencing some form of serious physical illness as an influencing factor".

The researchers said patients with such conditions "should be considered a high- risk group for suicide within national policy, and much greater attention should be given to providing better medical, practical and psychological support". The issue has become a fixture in public debate as growing numbers of UK citizens with chronic or terminal conditions have traveled to the assisted-death organization Dignitas in Switzerland to be helped to end their lives. Last year, a coroner recorded a verdict of suicide over the death of Michelle Broad, wife of the former England cricketer and international referee Chris Broad, who had motor neurone disease.

Louise Bazalgette, author of the report, said the "lack of attention paid to people with terminal or chronic illness committing suicide is a gross dereliction of duty on the part of the government and health services. The difficulty we experienced in tracking down evidence of the relationship between physical illness and suicide suggests a willful avoidance of what is an extremely important public health issue.

"The results are devastating: at least 400 people with terminal or chronic illness commit suicide every year and this cannot continue to be ignored."

She said a government consultation on suicide prevention, issued last month, focused on the same "at risk" groups identified by Labor in 2002: those using mental health services, prisoners and people with a history of self-harm.

"Eighty prisoners committed suicide last year. That is only a fifth of suicides of patients with chronic or terminal conditions. There's an urgent need for support," she said.

Experts agreed hospital doctors and GPs could do more to identify patients at risk from suicide but warned that the issue was "more complicated".

Linda Gask, professor of primary care psychiatry at the University of Manchester, said it was wrong to think "being depressed enough to commit suicide is either because of your mental health or your physical health: one is linked to another. We know that 30% of diabetes patients are depressed. Not all of them commit suicide.

"On the other hand, those traveling to Dignitas would say they are not depressed. They argue they are making a rational decision because they do not want to live like this."

Charities were also wary of clearly ascribing the cause of a suicide to either physical or mental health problems.

Jo Ferns, director of research for the Samaritans, said the issue was one of "risk" and what factors increased the chance of suicide.

"People with chronic conditions could be not suicidal but perhaps apathetic about living or dying. They are not saying they will kill themselves but taking decisions that do increase the risks. I think that's what we have to watch for."

A Department of Health spokesman said its mental health strategy recognized "that physical illness increases the risk of mental health problems and vice versa. We are consulting with bereaved families and experts in general practice, local government, and other organizations on a new strategy to prevent suicides.

"The consultation calls upon healthcare professionals to be alert to mental health issues, especially depression, in the patients that they see for known physical health problems, and to take the right steps to help people with long-term conditions have a better quality of life.""





According to WebMD (http://www.webmd.com/depression/guide/chronic-illnesses-depression
,

"Dealing With Chronic Illnesses and Depression:

For millions of people, chronic illnesses and depression are facts of life. A chronic illness is a condition that lasts for a very long time and usually cannot be cured completely, although some illnesses can be controlled or managed through lifestyle (diet and exercise) and certain medications. Examples of chronic illnesses include diabetes, heart disease, arthritis, kidney disease, HIV/AIDS, lupus, and multiple sclerosis (I'm going to go ahead and say GP since I believe it's a chronic illness and just as debilitating, even though it's not in the article).

Many people with these illnesses become depressed. In fact, depression is one of the most common complications of chronic illness. It's estimated that up to one-third of people with a serious medical condition have symptoms of depression.

It's not hard to see the cause and effect relationship between chronic illness and depression. Serious illness can cause tremendous life changes and limit your mobility and independence. A chronic illness can make it impossible to do the things you enjoy, and it can eat away at your self-confidence and a sense of hope in the future. No surprise, then, that people with chronic illness often feel despair and sadness. In some cases, the physical effects of the condition itself or the side effects of medication lead to depression, too.

What Chronic Conditions Trigger Depression?

Although any illness can trigger depressed feelings, the risk of chronic illness and depression gets higher with the severity of the illness and the level of life disruption it causes. The risk of depression is generally 10-25% for women and 5-12% for men. However, people with a chronic illness face a much higher risk -- between 25-33%. Risk is especially high in someone who has a history of depression.
Continue reading below...

Depression caused by chronic disease often makes the condition worse, especially if the illness causes pain and fatigue or it limits a person's ability to interact with others. Depression can intensify pain, as well as fatigue and sluggishness. The combination of chronic illness and depression might lead you to isolate yourself, which is likely to make the depression even worse.

Research on chronic illnesses and depression indicates that depression rates are high among patients with chronic conditions:

Heart attack: 40%-65% experience depression
Coronary artery disease (without heart attack): 18%-20% experience depression
Parkinson's disease: 40% experience depression
Multiple sclerosis: 40% experience depression
Stroke: 10%-27% experience depression
Cancer: 25% experience depression
Diabetes: 25% experience depression
Chronic pain syndrome: 30%-54% experience depression

Symptoms of Depression

People with a chronic illness as well as their family members often overlook the symptoms of depression. They assume that feeling sad is normal for someone struggling with disease. Symptoms of depression are also often masked by other medical problems. The symptoms get treated, but not the underlying depression. When you have both a chronic illness and depression, you need to treat both at the same time.

Treatment Options

Depression is treated much the same way for someone who is chronically ill as someone who isn't. Early diagnosis and treatment can ease distress along with the risk of complications and suicide. Many times, depression treatment can improve your overall medical condition, a better quality of life, and a greater likelihood of sticking to a long-term treatment plan.

When depressive symptoms are related to the physical illness or the side effects of medication, your doctor may need to adjust or change your treatment. When the depression is a separate problem, it can be treated on its own. More than 80% of people with depression can be treated successfully with medicine, psychotherapy, or a combination of both. Antidepressant drugs usually take effect within a matter of weeks. You should work closely with your doctor or psychiatrist to find the most effective medication.

Tips for Living With a Chronic Illness

Depression, disability, and chronic illness form a vicious cycle. Chronic medical conditions can bring on bouts of depression, which, in turn get in the way of successful treatment of the disease.

Living with a chronic illness is a challenge, and it's normal to feel grief and sadness as you come to grips with your condition and its implications. But if these feelings don't go away, or you are having trouble sleeping or eating, or you've lost interest in the activities you normally enjoy, seek help.

To avoid depression:

Try not to isolate yourself. Reach out to family and friends. If you don't have a solid support system, take steps to build one. Ask your doctor or therapist about support groups and other community resources.

Learn as much as you can about your condition. Knowledge is power when it comes to getting the best treatment available and keeping your sense of independence and control.

Make sure that you have medical support from experts you trust and can talk to openly about your ongoing questions and concerns.

If you suspect that your medication is bringing you down, talk to your doctor about other possible treatments.

Talk with your doctor about pain management.

As much as is possible, keep doing the things you like to do. You'll stay connected as well as boost your self-confidence and sense of community.

If you think you're depressed, don't wait to get help. Find a therapist or counselor you trust."






If you ARE feeling suicidal, please reach out to someone for help - a friend, a family member, priest, counselor, or click on the links below for help. We don't want to lose you, you're too valuable and your life is not meaningless.







Suicide Prevention:

If you are feeling suicidal and you want help then I have some websites for you to look into:

The Suicide Prevention Hotline: 1-800-273-TALK (8255)

http://www.suicidepreventionlifeline.org/gethelp/online.aspx

http://www.helpguide.org/articles/suicide-prevention/suicide-prevention-helping-someone-who-
is-suicidal.htm


http://www.afsp.org/

http://suicide.org/

http://dbhdd.georgia.gov/suicide-prevention

Here is a link to determine whether someone is really suicidal or not:

http://www.onhealth.com/suicide/article.htm














Monday, October 27, 2014

Why Gastroparesis Colors are Green and Yellow

People have asked me a lot over the years about why gastroparesis' colors are green and yellow. My friend, Melissa explains why in her blog. I'm going to share the link with you so that you can check out her blog and read about why the colors were chosen.

http://melissagpfight.wordpress.com/2014/02/17/why-is-green-the-color-to-represent-gastroparesis-dtp/

An exert says:

"BELOW IS A COPY FROM A FACEBOOK POST FROM G-PACT. WE WOULD HAVE SIMPLY PUT UP A LINK, BUT SOME OF YOU DO NOT HAVE FACEBOOK ACCOUNTS. THIS QUESTION IS ASKED A LOT AND WE FELT IT WAS BEST TO COPY THE ENTIRE POST.

Green indicates growth. We are growing towards a cure and awareness and research is growing. It’s a color of hope. When things start turning green outside it indicates the end of the cold, long, dark days of winter. The first sign of green plants and grass indicates we are coming out of a time if darkness and coldness and entering a phase of growth and brightness. It is a color that shows brighter and beautiful days are ahead. There is something really encouraging when you see that first blade of green grass or green leaf peaking through after months of brown fields, trees, and no growth.

Yellow was also an important color for us. Our logo is a sun to indicate hope and a brighter future ahead. The sun is a crucial factor that helps the plants grow. It brightens the days and brings with it the nutrients, strength, and oxygen needed to supply the plants with what they need to be able to grow and thrive."

To read more about it, please visit the link above to my friend Melissa's Blog. She also has a lot of other useful information as well. She also has a store that you should visit at:

www.gpfight.com



Tuesday, May 13, 2014

My Personal Health Update - Anxiety & Edema

Last week, I went to my primary care physician (PCP). I had blood work done and a physical because I have been feeling really exhausted from everything during this Gastroparesis Attack. Some people call them flares, but it honestly feels like an attack on my body, so I stick with GP Attack. I also wanted to address my anxiety issues because they've gotten worse. That's to be expected with gastroparesis, especially since you don't know what could happen with your stomach, whether or not you'll be in the hospital next week, or whether you'll need emergency surgery and/or a feeding tube. There are just too many unknowns because there isn't a lot of research or awareness about gastroparesis. That's part of the reason that I started this blog.

Anyway, the doctor said that my vitamin levels were all low - vitamins A, B, C, and D. This is normal with me because I vomit daily. If I try not to eat anything for a day or two at a time, I'll still vomit up stomach acid. I've tried during multiple things to see if I'd vomit less. However, I think my anxiety is making my vomiting and GP worse, so I needed to get that taken care of.

The doctor put me on Buspar, and here is a description from Drugs dot Com, "BuSpar (buspirone) is an anti-anxiety medicine that affects chemicals in your brain that may become unbalanced and cause anxiety. BuSpar is used to treat symptoms of anxiety, such as fear, tension, irritability, dizziness, pounding heartbeat, and other physical symptoms." She also put me on Xanax to help with break through panic attacks. It's been a few years since I've gotten panic attacks, but I've had a lot of them lately. I'm not sure what's trigging them but I'm keeping them written down in my gastroparesis journal - when I have them, what time, how long they last, and what else happened that day. I hope I can discover a pattern. If you have anxiety, I recommend doing the same thing. I went in for medication because yoga, writing, and deep breathing were not helping anymore and I needed medicinal help at this point.

My blood pressure was also up again to 156/106, and the normal blood pressure for a person is 120/80. My blood pressure has been running high for a few months now. I'm not sure if it's due to stress, my pain in my back from surgery still, and/or my pain with gastroparesis. I guess it could be all of the above. Additionally, I had a bit of swelling in my arms and the bottom of my legs. This was new to me because I had never had swelling in my arms. I've had swelling in my legs due to injuries, but that was about it. So, the doctor put me on Hydrochlorothiazide, which, according to Drugs dot Com, "Hydrochlorothiazide is a thiazide diuretic (water pill) that helps prevent your body from absorbing too much salt, which can cause fluid retention. Hydrochlorothiazide treats fluid retention (edema) in people with congestive heart failure, cirrhosis of the liver, or kidney disorders, or edema caused by taking steroids or estrogen. This medication is also used to treat high blood pressure (hypertension)."

After my visit with the doctor, I left for Florida with my husband to go on a five day vacation to Universal Studios and to Disney's Magic Kingdom. I had never been to either theme park but I spent four days walking around. I really needed the vacation and was looking forward to spending time with my husband, and I wasn't going to let Gastroparesis stop me (and I did get sick but I pushed through it).


The hubs and I standing in front of Cinderella's Castle in Magic Kingdom, Disney.


I have taken my water pill daily, but on my last day at Disney, I noticed that my left foot had swollen so badly that the only shoes that would fit me were my flip flops. My tennis shoes and my flats I brought didn't fit at all. My knee was becoming the size of a softball and it was getting harder to bear weight on it. I, thankfully, had an ace bandage and some lidocaine patches that I brought with me, so I put some of the patches on my knee and wrapped it up to prevent swelling even more. I also iced it and kept it elevated the last day we were there. As soon as I got home, I did the same. I changed the patches, wrapped it back up, iced, and elevated it. I called my PCP who advised me to keep doing what I was doing. She said for me to use crutches if I had to walk long distances but to stay off of my left leg.

Do you know how hard it is to stay off of your leg? It's driving me crazy. My leg feels like it's on fire. And of course, I'm still vomiting and I'm almost out of emesis bags. I can't run to the bathroom right now, because I'd injure myself more and I wouldn't make it to vomit there anyway. So, I have a bucket beside the bed, just in case.



Shown, are a picture of my legs, side by side, so that you can see the difference in swelling.



Shown, are both of my feet so you can see the swelling in my left foot.


Shown, is my left foot swelling.


The good news is that the water pill has helped with my arms. They are still a little less swollen but I look less like I have "cabbage patch doll arms" as my husband so aptly described them.



So, what could be causing this?

Edema is the retention of fluid. I decided to look it up to see what could be causing this to happen to my left leg. According to WebMD, this is what I found out,

"Edema is the medical term for swelling. It is a general response of the body to injury or inflammation. Edema can be isolated to a small area or affect the entire body. Medications, infections, pregnancy, and many medical problems can cause edema.

Edema results whenever small blood vessels become "leaky" and release fluid into nearby tissues. The extra fluid accumulates, causing the tissue to swell.


Causes of Edema

Edema is a normal response of the body to inflammation or injury. For example, a twisted ankle, a bee sting, or a skin infection will all result in edema in the involved area. In some cases, such as in an infection, this may be beneficial. Increased fluid from the blood vessels allows more infection-fighting white blood cells to enter the affected area.

Edema can also result from medical conditions or problems in the balance of substances normally present in blood. Some of the causes of edema include:

Low albumin (hypoalbuminemia): Albumin and other proteins in the blood act like sponges to keep fluid in the blood vessels. Low albumin may contribute to edema, but isn't usually the sole cause.

Allergic reactions: Edema is a usual component of most allergic reactions. In response to the allergic exposure, the body allows nearby blood vessels to leak fluid into the affected area.

Obstruction of flow: If the drainage of fluid from a body part is blocked, fluid can back up. A blood clot in the deep veins of the leg can result in leg edema. A tumor blocking lymph or blood flow will cause edema in the affected area.

Critical illness: Burns, life-threatening infections, or other critical illnesses can cause a whole-body reaction that allows fluid to leak into tissues almost everywhere. Widespread edema throughout the body can result.

Edema and heart disease (congestive heart failure): When the heart weakens and pumps blood less effectively, fluid can slowly build up, creating leg edema. If fluid buildup occurs rapidly, fluid in the lungs (pulmonary edema) can develop.

Edema and liver disease: Severe liver disease (cirrhosis) results in an increase in fluid retention. Cirrhosis also leads to low levels of albumin and other proteins in the blood. Fluid leaks into the abdomen (called ascites), and can also produce leg edema.

Edema and kidney disease: A kidney condition called nephrotic syndrome can result in severe leg edema, and sometimes whole-body edema (anasarca).

Edema and pregnancy: Due to an increase in blood volume during pregnancy and pressure from the growing womb, mild leg edema is common during pregnancy. However, serious complications of pregnancy such as deep vein thrombosis and preeclampsia can also cause edema.

Cerebral edema (brain edema): Swelling in the brain can be caused by head trauma, low blood sodium (hyponatremia), high altitude, brain tumors, or an obstruction to fluid drainage (hydrocephalus). Headaches, confusion, and unconsciousness or coma can be symptoms of cerebral edema.

Medications and edema: Numerous medications can cause edema, including:

NSAIDs (ibuprofen, naproxen)
Calcium channel blockers
Corticosteroids (prednisone, methylprednisolone)
Pioglitazone and rosiglitazone
Pramiprexole

Most commonly, these medications produce no edema, or mild leg edema.



Symptoms of Edema

Edema symptoms depend on the amount of edema and the body part affected.

Edema in a small area from an infection or inflammation (such as a mosquito bite) may cause no symptoms at all. On the other hand, a large local allergic reaction (such as from a bee sting) may cause edema affecting the entire arm. Here, tense skin, pain, and limited movement can be symptoms of edema.

Food allergies may cause tongue or throat edema, which can be life-threatening if it interferes with breathing.

Leg edema of any cause can cause the legs to feel heavy and interfere with walking. In edema and heart disease, for example, the legs may easily weigh an extra 5 or 10 pounds each. Severe leg edema can interfere with blood flow, leading to ulcers on the skin.

Pulmonary edema causes shortness of breath, which can be accompanied by low oxygen levels in the blood. Some people with pulmonary edema may experience a cough with frothy sputum.
Treatment of Edema


Treatment of edema often means treating the underlying cause of edema. For example, allergic reactions causing edema may be treated with antihistamines and corticosteroids.

Edema resulting from a blockage in fluid drainage can sometimes be treated by eliminating the obstruction:

A blood clot in the leg is treated with blood thinners, and the clot slowly breaks down; leg edema then resolves as fluid drainage improves.

A tumor obstructing a blood vessel or lymph flow can sometimes be reduced in size or removed with surgery, chemotherapy, or radiation.

Leg edema related to congestive heart failure or liver disease can be treated with a diuretic (''water pill'') like furosemide (Lasix). When urine output increases, more fluid drains from the legs back into the blood. Maintaining a sodium-restricted diet will also help limit fluid retention associated with heart failure or liver disease.


I have an appointment with my orthopedist in the morning. He's the one who treated me for my left knee last time and was the doctor who referred me to get a spinal cord stimulator. My knee cap is not tracking properly and it pulled to far towards the left of my knee. I am scared I have a meniscus tear. I am hoping that whatever is causing the swelling has to do with an injury to my knee that will take a few weeks to fix with a brace, physical therapy, and no surgery. I'll update more tomorrow. Please, let's hope it's not something really serious. I'm really scared because I've never had my body swell up this much and in so many places at once.


EDIT: So, I went to the orthopedist this morning and had my swelling in my knee and foot looked at. The doctor thinks that I overdid it walking around the theme parks this past week. He took some x-rays and determined that my knee cap was floating around because of all of the fluid in my knee, and that was causing irritation, leg instability, and pain/pressure. He decided to drain the fluid from my knee and to give me a cortisone injection. I was scared about the cortisone injection, because the last time I had one, a different doctor did it and I ended up with sepsis in my knee and had to have emergency surgery. This is the fluid he removed from my knee joint this morning:

This is the fluid that the doctor removed from my knee before the cortisone injection.

I have to stay off of my leg for at least two days to help the swelling go down but the cortisone injection should help. My foot is still swollen but he says that should also go down in a few days if I baby my leg and try not to overdo it. He said that if he would have another barrel for the syringe (in the picture above) to remove fluid from my knee, he would have kept going because there's still more. However, my knee cap should stop floating around now and stop irritating everything. Let's hope so!

Tuesday, May 6, 2014

Information about Bezoars and a Personal Update

So the PCP and GI diagnosed me with a bezoar last week. According to the Mayo Clinic,

A bezoar (BE-zor) is a solid mass of indigestible material that accumulates in your digestive tract, sometimes causing a blockage. Bezoars usually form in the stomach, sometimes in the small intestine or, rarely, the large intestine. They can occur in children and adults.

Bezoars occur most often in people with certain risk factors, including if you:

Had gastric surgery that results in delayed stomach emptying
Have decreased stomach size or reduced stomach acid production
Have diabetes or end-stage kidney disease
Receive breathing help with mechanical ventilation

One type of bezoar (trichobezoar) may occur in people with psychiatric illness or developmental disabilities.



Bezoars are classified according to the material that forms them:

Phytobezoars are composed of indigestible food fibers, such as cellulose. These fibers occur in fruits and vegetables, including celery, pumpkin, prunes, raisins, leeks, beets, persimmons and sunflower-seed shells.

Phytobezoars are the most common type of bezoar.

Trichobezoars are composed of hair or hair-like fibers, such as carpet or clothing fibers. In severe cases, known as "Rapunzel's syndrome," the compacted fibers can fill the stomach with a tail extending into the small intestine. Rapunzel's syndrome is most common in adolescent girls.

Pharmacobezoars are composed of medications that don't properly dissolve in your digestive tract.

Bezoars can cause lack of appetite, nausea, vomiting, weight loss and a feeling of fullness after eating only a little food. Bezoars can also cause gastric ulcers, intestinal bleeding and obstruction, leading to tissue death (gangrene) in a portion of the digestive tract.

Small bezoars may pass through the digestive tract on their own or after you take medication to help dissolve the mass. Severe cases, especially large trichobezoars, often require surgery.

If you don't have one of the risk factors for bezoars, you're not likely to develop them. If you are at risk, reducing your intake of foods with high amounts of indigestible cellulose may reduce your risk.

A bezoar in someone's hand. Image courtesy of: http://www.bezoarmustikapearls.com/images/dewa1thumb.JPG


History of the Bezoar, according to Wikipedia:

Bezoars were sought because they were believed to have the power of a universal antidote against any poison. It was believed that a drinking glass which contained a bezoar would neutralize any poison poured into it. The word "bezoar" comes from the Persian pād-zahr (پادزهر), which literally means "antidote".

The Andalusian physician Ibn Zuhr (d. 1161), known in the West as Avenzoar, is thought to have made the earliest description of bezoar stones as medicinal items. Extensive reference to it is also to be found in the Picatrix, which may be earlier.

In 1575, the surgeon Ambroise Paré described an experiment to test the properties of the bezoar stone. At the time, the bezoar stone was deemed to be able to cure the effects of any poison, but Paré believed this was impossible. It happened that a cook at King's court was caught stealing fine silver cutlery and was sentenced to death by hanging. The cook agreed to be poisoned instead. Ambroise Paré then used the bezoar stone to no great avail, as the cook died in agony seven hours later. Paré had proved that the bezoar stone could not cure all poisons as was commonly believed at the time.

Modern examinations of the properties of bezoars by Gustaf Arrhenius and Andrew A. Benson of the Scripps Institution of Oceanography have shown that they could, when immersed in an arsenic-laced solution, remove the poison. The toxic compounds in arsenic are arsenate and arsenite. Each is acted upon differently, but effectively, by bezoar stones. Arsenate is removed by being exchanged for phosphate in the mineral brushite, a crystalline structure found in the stones. Arsenite is found to bond to sulfur compounds in the protein of degraded hair, which is a key component in bezoars.

A famous case in the common law of England (Chandelor v Lopus, 79 Eng Rep. 3, Cro. Jac. 4, Eng. Ct. Exch. 1603) announced the rule of caveat emptor, "let the buyer beware", if the goods they purchased are not in fact genuine and effective. The case concerned a purchaser who sued for the return of the purchase price of an allegedly fraudulent bezoar. (How the plaintiff discovered the bezoar did not work is not discussed in the report.)

The Merck Manual of Diagnosis and Therapy notes that consumption of unripened persimmons has been identified as causing epidemics of intestinal bezoars, and that up to 90% of bezoars that occur from eating too much of the fruit require surgery for removal.

A 2013 review of 3 databases identified 24 publications presenting 46 patients treated with Coca-Cola for phytobezoars. The cola was administered in doses of 500 mL to up to 3000 mL over 24 hours, orally or by gastric lavage. A total of 91.3% of patients had complete resolution after treatment with Coca-Cola: 50% after a single treatment, others requiring the cola plus endoscopic removal. Surgical removal was resorted to in four patients.

People used to make potions with bezoars as they were thought to ward off evil and used as antidotes. Image courtesy of: http://upload.wikimedia.org/wikipedia/commons/thumb/b/b6/Bezoare.jpg/250px-Bezoare.jpg


Gastric Surgery and Bezoars:

To read more on this amazing published paper, please visit: http://link.springer.com/article/10.1007%2FBF01299861#page-1.




My Struggle:


My doctor told me that medications will dissolve it but has yet to call them in. I've been drinking soda because I've read that it will help dissolve the bezoar. My PCP noticed something sketchy on my x-ray, and then the GI confirmed it once he looked at it. My vitamin D is really low, according to my blood work, so they're going to call in injections for me since I'm not handling anything by mouth hardly at all right now. I've been laying outside, trying to soak up some sun. I have really intense stomach pain and I keep vomiting. No food is staying down and now I'm having issues with liquids, too. I think I'm going to make an appointment with my GI. I can't go on living like this, something has to be done. He mentioned a version of the gastric bypass that he wants to do on me. He thinks it will help but I'm still weighing the pros and cons of having the surgery.

To pass the time tonight, and to keep my mind off of the pain, I started making a website. I wanted to have all of my GP things in once place - my resources/links, events, pictures, my Facebook Page (Emily's Stomach, which I want to get more likes for), a donation button to help me and my friends with medical bills), and the latest GP news. I've been thinking of making a website for a long time, but I haven't had time to do it. So, I sat down tonight, and in between bouts of vomiting, I've created it! I also made a logo that I might put on t-shirts with a gastroparesis design to fund raise money.


My Website is: https://emily-scherer.squarespace.com/

My blog entries will now be posted on my website. I also linked, at the bottom of the pages, to my tumblr account, my pinterest board, my personal Facebook, etc if you would like to follow me and/or read things on there as well.

Here is my logo that I designed:


I think I might do what my friend Melissa has done and make business cards with my logo, website, and blog on it. That way, I can help spread awareness. My goal is to have my own GP store so that I can help others with the proceeds in the future. It's been an idea that I've been thinking about for a long time. I'm just not artistic though, which means, I would have to depend on the designs of my friends.

Speaking of friends, I have so many friends who are struggling with medical bills that I really want to help. I also wouldn't mind having some extra money to put towards my own medical bills. GP is expensive. I need to find a charity to link the donate button on my website to, I guess. I'll have to remember to do that in the morning, pending I actually get some sleep. I've been vomiting so much tonight that I pulled a muscle in my back and in my abdomen. I have been violently projectile vomiting but I haven't eaten anything! So, it's just bile... and that is making my throat swell like I have strep.

I'm on a new anxiety medication, so I hope that helps. I'm really anxious and nervous about my website. I want people to use it as a resource. I want to put great information on there so that people will find it useful. All I have ever wanted was to help others. I hope I can do that by putting the latest news and resources on the site. I have also put pictures up that I've gathered over the past two years with various projects. I want people to see us and to understand GP. Sometimes, it's not real to someone unless they see a picture. I want all of my gp family to know that I think they're beautiful and brave for sharing their pictures.

That reminds me, I need to do another picture request on Emily's Stomach on Facebook (www.facebook.com/emilysstomach). I want family members, co-workers, and others to post pictures of themselves supporting those with GP. I don't have a photo album like that that I'm allowed to use, even though I've worked on that project in the past. I want to post those on my website to show others that people do care, even if they may not know you. It means a lot to us who suffer daily. Sometimes, we desperately need that smile, you know?