Find us on Google+ Gastroparesis

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?

Monday, May 5, 2014

Dumping Syndrome

If you have Gastroparesis, then you have probably dealt with dumping syndrome at some point during your illness. Frequently, my friends get it when their stomachs decide to empty all at once, myself included. I thought I would write an article about it because it's not something I've already addressed and I wanted to bring awareness to the fact that it exists. I know a lot of people are scared or nervous to ask questions about pooping, so I'm going to try and do my best to explain dumping syndrome and how to get past it, especially when it's already hard for you to maintain fluids due to GP (gastroparesis).


So, what is dumping syndrome?


Image, courtesy of: http://www.nursestip.com/files/Dumping%20Syndrome.jpg


One of my friends posted a video that you can watch below, to explain what Dumping Syndrome is.

Here is Part 1 of the video: https://www.youtube.com/watch?v=-0ru-uCebF8

Here is Part 2 of the video: https://www.youtube.com/watch?v=H_EyoLCKy




According to the Mayo Clinic,

"Dumping syndrome is a group of symptoms that are most likely to develop if you've had surgery to remove all or part of your stomach, or if your stomach has been surgically bypassed to help lose weight. Also called rapid gastric emptying, dumping syndrome occurs when the undigested contents of your stomach move too rapidly into your small bowel. Common symptoms include abdominal cramps, nausea and diarrhea.

Most people with dumping syndrome experience symptoms soon after eating. In others, symptoms may occur one to three hours after eating. Some people experience both early and late symptoms.

Dumping syndrome is managed by adjusting your diet. In more-serious cases of dumping syndrome, you may need medications or surgery.



Symptoms of Dumping Syndrome:

Symptoms of dumping syndrome are most common during a meal or within 15 to 30 minutes following a meal. They include:

Gastrointestinal

Nausea
Vomiting
Abdominal cramps
Diarrhea
Feeling of fullness

Cardiovascular

Flushing
Dizziness, lightheadedness
Heart palpitations, rapid heart rate

Signs and symptoms also can develop later, usually one to three hours after eating. This is due to the dumping of large amount of sugars into the small intestine (hyperglycemia). In response, the body releases large amounts of insulin to absorb the sugars, leading to low levels of sugar in the body (hypoglycemia). Symptoms of late dumping can include:

Sweating
Hunger
Fatigue
Dizziness, lightheadedness
Confusion
Heart palpitations, rapid heart rate
Fainting

A study of more than 1,100 people who had their stomachs surgically removed found that about two-thirds experienced early symptoms and about a third experienced late symptoms of dumping syndrome. Some people experience both early and late signs and symptoms.

No matter when problems develop, however, they may be worse following a high-sugar meal, especially one that's rich in table sugar (sucrose) or fruit sugar (fructose).


Causes of Dumping Syndrome:

In dumping syndrome, food and gastric juices from your stomach move to your small intestine in an uncontrolled, abnormally fast manner. This is most often related to changes in your stomach associated with surgery, such as when the opening (pylorus) between your stomach and the small intestine (duodenum) has been removed during an operation.

The pylorus acts as a brake so that stomach emptying is gradual. When it's removed, stomach material dumps rapidly into the small intestine. The ill effects of this are thought to be caused by the release of gastrointestinal hormones in the small intestine, as well as insulin secreted to process the sugar (glucose).

Dumping syndrome can occur after any operation on the stomach as well as after removal of the esophagus (esophagectomy). Gastric bypass surgery for weight loss is the most common cause today. It develops most commonly within weeks after surgery, or as soon as you return to your normal diet. The more stomach removed or bypassed, the more likely that the condition will be severe. It sometimes becomes a chronic disorder.


Tests and Diagnosis:

Your doctor may use some of the following methods to determine if you have dumping syndrome.

Medical history and evaluation. Your doctor can often diagnose dumping syndrome by taking a careful medical history and then evaluating your signs and symptoms. If you have undergone stomach surgery, that may help lead your doctor to a diagnosis of dumping syndrome.

Blood sugar test. Because low blood sugar is sometimes associated with dumping syndrome, your doctor may order a test (oral glucose tolerance test) to measure your blood sugar level at the peak time of your symptoms to help confirm the diagnosis.

Gastric emptying test. A radioactive material is added to food to measure how quickly food moves through your stomach.


Treatments and Medications:

Most cases of dumping syndrome improve as people learn to eat better for the condition and as the digestive system adjusts. There's a good chance that changing your diet will resolve your symptoms. (See recommendations under Lifestyle and home remedies.) If it doesn't, your doctor may advise medications or surgery to address the problem.
Medications

Your doctor may prescribe certain medications to slow the passage of food out of your stomach, and relieve the signs and symptoms associated with dumping syndrome. These drugs are most appropriate for people with severe signs and symptoms, and they don't work for everyone.

The medications that doctors most frequently prescribe are:

Acarbose (Precose). This medication delays the digestion of carbohydrates. Doctors prescribe it most often for the management of type 2 diabetes, and it has also been found to be effective in people with late-onset dumping syndrome. Side effects may include sweating, headaches, sudden hunger and weakness.

Octreotide (Sandostatin). This anti-diarrheal drug can slow down the emptying of food into the intestine. You take this drug by injecting it under your skin (subcutaneously). Be sure to talk with your doctor about the proper way to self-administer the drug, including optimal choices for injection sites. Long-acting formulations of this medication are available.

Because octreotide carries the risk of side effects (diarrhea, bulky stools, gallstones, flatulence, bloating) in some people, doctors recommend it only for people who haven't responded to other treatments and who are not candidates for surgery.
Surgery

Doctors use a number of surgical procedures to treat difficult cases of dumping syndrome that are resistant to more conservative approaches. Most of these operations are reconstructive techniques, such as reconstructing the pylorus, or they're intended to reverse gastric bypass surgery.


Feeding tube

A last resort for people who are not helped by any other treatment is to insert a tube into the small intestine through which nutrients can be delivered."


Image, courtesy of: http://img.medscape.com/slide/migrated/editorial/cmecircle/2002/1989/nehra/nehra_figure_02.gif



According to WebMD,

After gastric surgery, it can be more difficult to regulate movement of food, which dumps too quickly into the small intestine. Eating certain foods makes dumping syndrome more likely. For example, refined sugars rapidly absorb water from the body, causing symptoms. Symptoms may also happen after eating dairy products and certain fats or fried foods.



Dumping Syndrome: Symptoms of the Early Phase

An early dumping phase may happen about 30 to 60 minutes after you eat. Symptoms can last about an hour and may include:

A feeling of fullness, even after eating just a small amount
Abdominal cramping or pain
Nausea or vomiting
Severe diarrhea
Sweating, flushing, or light-headedness
Rapid heartbeat




Dumping Syndrome: Causes of the Early Phase

Symptoms of an early phase happen because food is rapidly "dumping" into the small intestine. This may be due to factors such as these:

The small intestine stretches.
Water pulled out of the bloodstream moves into the small intestine.
Hormones released from the small intestine into the bloodstream affect blood pressure.



Dumping Syndrome: Symptoms of the Late Phase

A late dumping phase may happen about 1 to 3 hours after eating. Symptoms may include:

Fatigue or weakness
Flushing or sweating
Shakiness, dizziness, fainting, or passing out
Loss of concentration or mental confusion
Feelings of hunger
Rapid heartbeat




Dumping Syndrome: Causes of the Late Phase

The symptoms of this late phase may happen due to a rapid rise and fall in blood sugar levels. The cause of this rapid swing in blood sugar may be worse when eating sweets or other simple carbohydrates.




Dumping Syndrome Treatment

Many people find that taking steps like these greatly reduces symptoms of dumping syndrome.

Foods to avoid. Avoid eating sugar and other sweets such as:

Candy
Sweet drinks
Cakes
Cookies
Pastries
Sweetened breads

Also avoid dairy products and alcohol. And avoid eating solids and drinking liquids during the same meal. In fact, don't drink 30 minutes before and 30 minutes after meals.

Foods to eat. To help with symptoms, also try these tips:

Use fiber supplements, such as psyllium (Metamucil or Konsyl), methylcellulose (Citrucel), or guar gum (Benefiber). **NOTE: If you have Gastroparesis as well, please consult your doctor as high fiber content can make our condition worse.

Use sugar replacements, such as Splenda, Equal, or Sweet'N Low, instead of sugar.

Go for complex carbohydrates, such as vegetables and whole-wheat bread, instead of simple carbohydrates, such as sweet rolls and ice cream.

To prevent dehydration, drink more than 4 cups of water or other sugar-free, decaffeinated, noncarbonated beverages throughout the day





If you have any questions or comments about the article, feel free to email me. I'm currently working on an article about pregnancy and GP. I'm gathering research and will hopefully, have it out in the next two weeks. Please email me if you have an idea for an article that you'd like to see and/or questions/comments: emilysstomach[at]gmail.com.

Wednesday, March 12, 2014

An NJ Tube Story by Alley Samms

So, I have decided to showcase a couple of guest bloggers so that they can write about things that I don't really have experience with. An NJ tube is one of them. Over the next few weeks, I will be incorporating guest bloggers to write about things like TPN, gastric sleeves, and GP and pregnancy. Thank you in advance for reading my blog and thanks to everyone who is helping me out in this endeavor. It means a lot to me.

This article was written by my good friend, Alley Samms. She has several Youtube links that also discuss her NJ tube and she has a store in which she sells gastroparesis jewelry. I met her on one of the many support groups I'm in for GP and she is an amazing woman! She's a very strong person and I'm glad to have her as a friend.

The LINK to her store is: http://hopesalley.bigcartel.com

Her most recent Youtube video about NJ tubes: https://www.youtube.com/watch?v=B9D-0eto-Uk&list=UU9dhy8cIzb97vgMOdeJf_8A

Her first Youtube video after her tube was placed: https://www.youtube.com/watch?v=2tMVbnGQ4Jc&list=UU9dhy8cIzb97vgMOdeJf_8A

Now, her story:


An NJ Tube Story by Alley Samms

My name is Alley Samms. I am 27 years old and have Gastroparesis, and severe GERD, which lead me to get a NJ feeding tube because of malnutrition. I was “wasting away” in my GI’s own words and most likely would not have survived a few more months without some sort of feeding intervention. I have now had a NJ tube for the last consecutive 16 months with no breaks and feeding 24/7.

A NJ tube or Nasojejunal Tube is a long tube that is inserted in your nose, follows down thru your stomach and ends in your jejunum so you can feed into your small intestines while by-passing your stomach. Not to be confused with the NG or Nasogastic tube that stops and feeds into your stomach. As we all know feeling into your stomach would be pointless with GP patients.

When I got my first NJ (Nasojejunal tube) I was approx. 83 lbs., and severely malnourished. Gastroparesis caused me too much pain and nausea after eating or drinking even water. I could not sustain my health or weight by myself.

My GI had suggested I go straight to a J tube for months and I even met with a surgeon who described the tube and how he would make a 9-inch vertical open incision on my belly for placement. I freaked out and told my GI I wanted to trial the NJ tube to see how I do first before I go through such an invasive surgery placement, and boy, I am glad I did.

The day of my first NJ placement I was terrified and was NPO (nothing by mouth) for a day already. I arrived at the hospital and sat in the freezing waiting room for about an hour until they finally called me back. I sat in the holding area in the IR department on a hospital bed; they didn’t even have me change into a gown. The first time getting an NJ tube is always the worst, I tell you it gets a lot easier to handle after your first.


What happens when they placed my first NJ Tube:

First I Always bring my own big bottle of water and my own bendy straw, this is very important, also I take 8mg of ODT Zofran about an hour before my replacements/placements just to ease my nervousness about gagging.

I sat up in the bed, the nurse tech then told me what’s going to happen (Ha like that will ever help coming from a nurse) and I was about to have a panic attack.

They cover the end up the tube which is weighted with lidocaine jelly and insert the end of the tube in my nostril, once they start pushing it in my nose I started swallowing the tube. Now on my first placement like normal for most I gagged so much they had to take that tube out and start over because I could not stop gagging.

Lets try this again… Second try, the tech-nurse starts pushing it past my throat, I sip on the water and he gets it all the way into my stomach with me only gagging once.

He gave me a big high-five and told me to hold my tube in place until I could get into the Fluoroscopy machine room to have it advanced.

I sat there for about 30 minutes holding my tube and joking with the EMT’s that came in and out bringing in people from other hospitals. Finally I got into the Fluoroscopy room. Basically, this is where the Dr. will advance your tube into your jejunum. You lay on a hard table with the “Fluoroscopy” machine, which is taking a constant x-ray to check the placement of the tube. I lie there as the doctor pushes and pulls the tube in and out, laying from side to side until the end of the NJ tube gets far enough past the duodenum. Once the tube is in place, they taped it to my nose (Yuck) and I was on my way home.

The first day, like I said is always the worst. I gagged the entire way home, any time I talked and I ended up throwing up a few times without displacing my new tube thankfully. Rest assured this sensation of gagging or chocking will go away in a day or over night.


The placement of an NJ Tube.



Now fast forward to the not so great experiences with my NJ Tube I have had later down the road.

My first bad incident was partially my own fault. I used to leave the “slack” of my tubing hang out of my backpack by my leg and up to my face. Bad idea.

My first tube was ripped out violently by my poor puppies paw. I ended up in the ER that day with my sinus cut open and needing a replacement. Always tuck your tubing slack into your backpack if you have kids or animals around. You can even get caught on a door handle, and you do not want that.

That brought on issue two that can happen with NJ tubes, or any tubes for that matter: Kinking, coiling and displacement.

I got a new NJ tube placed after my dog yanked my first one out of my face. The Dr. who placed my new tube had issues advancing it past my ligament of treitz (for me this is a certain place after the duodenum where my tube will safely stay in my intestines because I have sections of reverse motility). By the time I got home that night and tried to hook up to my feed I noticed I could not flush my tube. Back to the ER I went; yes it was coiled backwards in my duodenum and almost tied into a knot.

This leads to another great tip for NJ tubes. When my tube kinked, they did not replace it with a new tube, but just un-coiled it by pulling it slightly in and out and pushing it back in further. Do Not Do This! Get a New tube if yours kinks!

Tubes, especially small NJ tubes (mine is a 8Fr) have kink memory and once they get kinked, it will kink again soon if not immediately. So, low and behold 3 days later, yup, my tube was kinked and flipped backwards in my jejunum.

I don’t quite remember how many tube replacements I have had now, if I had to guess its only about 9 or 10 but that’s over a course of a year and three months.

To make your life easier you will learn what works for your body and making living with and replacing tubes a lot easier on you. I have had my share of horrible experiences of tube replacements. My last replacement the Dr. was so pompous and thought he was the best, that he did not listen to me and ended up fracturing my nose and getting the tube stuck in the top tier of my sinus cavity. Extremely painful. I have had it ALL done. I have never been asleep or sedated thru any of my NJ tube placements so I get to enjoy every little moment. However, I prefer not to be sedated because once it is placed there is nothing to really recover from so I can go on about my day as normal.

I have had my share of really bad doctors who act like they know what they are doing but don’t when it comes to NJ tube Replacements. I first will tell you my easiest way to get a replacement, then tell you some of the horrors I have been through.

First, lay down and have a nurse pull your tube out for you in one smooth motion. Breathe thru your mouth the entire time, I even found humming works too. It takes less than 15 seconds to pull out and its disgusting but not as bad as you would imagine. But do not make the mistake of cheating and drinking something like pedia-sure before you get your tube pulled or else it will be in your nose all day long. It will taste and smell sort of gross like bile but ask to blow your nose and you will be fine.

Then, if you trust your Dr. they can do the rest but I Don’t so I ask the nurses to do my placements. Basically as I stated before, sit up, sip water thru a straw then go lay on the Fluoroscopy machine and get it advanced. And breathe thru it all, long breaths out while they push the tube in and out helps. And if it hurts very badly, something is wrong and they need to stop right away.

Then tape your tube to your Cheek, not your nose. Taping it to your nose will make you gag more. The closer you tape your tube to your nostril on your cheek the less it will move and bother your throat.

Tape I recommend: Hypafix, Durapore, Tegaderm, Tendrgerips and I also get Band-Aids in cute designs and cut the sticky ends off and place them on for some pizazz. If you apply something called “ No sting Barrier Spray” your tape will stick much longer.



Now some things you should know about what Doctors Should NOT do during NJ tube replacements:

When switching the tube in nostrils: If there is sharp severe pain STOP the placement. Your nose is deviated and no matter what even if they get it placed you will be in horrible pain the entire time you have the tube. Like myself, I have to keep my tube on the Right side the entire time. I learned that after screaming bloody murder.

When a doctor tries to tell you he is going to replace the tube by using a guide wire or another tube as a guide for the new tube, tell them no, or run far away. I speak from too much experience on this and it NEVER works and is miserable to go through.

What I mean about guide wire- The Dr. will want to put a guide wire inside your existing tube, keep the guide wire in you while pulling out your tube. He will then slowly pull your tube out inch by inch (takes about 20 minutes or more) Then he will want to keep that guide wire in and put the new tube over it. This is agonizing and very slow. This does not work, you will gag your brains out, vomit and not be able to breathe while you are chocking on your own vomit. Don’t let them do this.

What I mean about a tube guide: Similar to the guide wire but worse. The Dr. will keep in your existing tube. Then he will place another tube in the same nostril in the hopes it will follow the line of the tube you already have. That’s right, two tubes in one nostril down the back of your throat. This also does NOT work and results in the same, crying gagging, vomiting chocking and begging for someone to stop. (I actually had to punch this Dr. and then throw up on him while I was begging in pain with tears in my eyes for him to stop this, which resulted in an investigation on that Dr.)

Do not let my horror stories scare you away from NJ tubes and their placements. I just have bad luck and have to go to the worst hospital in my town because they are the only ones who will place them here. Not all Dr.s will do this to you, but now you have things to look out for and know the outcomes to better judge your own situation.



A few tips about NJ tubes:

Clogs: With and NJ tube being so much smaller than all other tubes, it will clog. Depending on what feed you are on, it may clog a lot. Get some SMALL syringes. Under 20mls. I personally use 15ml-5ml-and the occasional 3ml for everyday use and clogs. I do not know why but the 60ml syringe will take 10+ hours or never unclog your tube. If you use a very small syringe it will come out in less than 20 minutes.

Upkeep: I have obviously have had an NJ tube much longer than the normal person would normally have one. I get checked by an ENT (Ear Nose Throat specialist) in-between all replacements now to O.K. my sinus for a new tube.
I have not had a sinus infection yet at all.

My secret: Neti Pot, use when needed, can be used daily but I use it only when I feel gunk building up. Use the Neti pot frequently if you start to get postnasal drip or else the tube in the back of your throat will start getting coated with hardened mucus and will start irritating your throat. The Neti Pot will prevent this buildup.

For days your nose hurts, because that will happen sometimes especially if you have severe allergies like I do. Use Affrin Spray, but do not use this more than 4-5 times a month or it can cause more permanent congestion. So only when very needed.


Why I have Chosen to keep my NJ tube instead of getting a GJ or J tube placed instead:

When I had my first NJ tube placed I was severely malnourished and 83 lbs. I did start to improve fast after starting NJ feeds. My GI and I agreed after a few months I was responding so well and gaining weight that I may only have to have the tube for a few more months. Well, by the time we discussed the G/J – J tube again I had gained about 15lbs. My Body is one that takes forever to gain but a minute to loose. I can easily loose 5 lbs. in a day with still eating. For example years ago before the tube I had my wisdom teeth removed, I was still eating daily just soft foods and I lost 16 lbs.

In a week, my body recovers horribly. So, with that in mind the surgical placement of the G/J – J tube alone would cause me to loose all the weight It has taken me over a year to gain (about 20 lbs. to be accurate) and I would start all over again and I just do not want to do that. I am the lucky one who has little issues living with an NJ tube day to day, no real pain, I forget its there most the time. Because of the NJ tube I am now able to eat orally without pain in my stomach (still have pain in my intestines) so my health has overall improved because of tube feeds and my NJ.

My GI’s and I’s goal is for me to reach 110 lbs. and then pull my tube and see how I do, if I start loosing weight I will re insert the NJ tube and basically play it by ear.