Keeping Yourself Up When You Can't Keep it Down

If you're learning that you do, in fact, have Hyperemesis Gravidarum for the first time, you may be wondering what symptoms you are experiencing are as a result of HG, or just being pregnant. There may be such a huge onslaught of "new," that you don't even know what to expect anymore.You may have also had some scary things happen, and you're wondering if you're not alone, if it is normal. Here, we'll tell you what the "HG normal" is. ;)

Vomiting Bile and Blood- This happens pretty often among patients. If you're not sure what bile, also known as "stomach acid" looks like, it can vary in color but is typically green-yellow and will taste...well, like bile. Blood can vary in shade as well, being darker to crimson. These are important things to bring up to your doctor in your next appointment; even if there isn't immediate action taken, they will at least be aware and may see a need to add medications/treatments or increase dosages. Vomiting bile means you literally have nothing left to vomit besides your stomach contents. I had this happen often, and just a note: for me trying to get rid of the taste with a sip of water made it worse, I chewed gum and that helped. Blood can happen because you have a tear in your esophagus or because your throat tissues are irritated. The irritation could be because of how often you're vomiting or something you ate. Rice (when I was trying to morning sickness remedies of eating bland foods) never failed to tear me up.

Ketones- This is your body's indication of starvation. When you are starving, your body starts to break down itself in order to survive, thus spilling proteins called "ketones" into your urine. Most doctor offices test for this when you submit a urine sample at doctor appointments. Ask about it. You can also use test strips at home. You dip the test strip in your urine and the strip will react and manifest a color showing how much ketones are in your urine. By the time I knew about these, my doctor monitored mine closely enough I didn't need to do this, but here is an example to look for. You may need to call ahead in stores near you to find one, but I found them at Walgreens. Here is a color chart example so you can see how it works. If you do this and find they are present, take a picture for your doctor. If you consistently have ketones and your doctor is acting unconcerned and not doing anything more to help you, get a new doctor! Ketones present can hurt your baby over time, not to mention you. In the most severe of cases, you may require hospitalization. I was hospitalized because of the need to get my feeding tube placed, but also because after a blood draw, my liver function tests were alarming. This happens when you have been starving for a prolonged period of time. Make sure that you and your doctor are monitoring your ketones to protect you and baby.
Constipation- Almost undoubtedly, you're dehydrated and that's going to affect your digestive system. And you're pregnant. And, you're probably taking Zofran or Phenegran. All are going to compound the problem. Obviously you can't fix the problem with diet or exercise so what do you do? I would suggest trying fiber gummies. I took double the recommended dosage (the max per day) and right before bed. They get absorbed quicker and stayed down better. Also to try, enemas. It is a saline bottle that has a flexible tip that is inserted into the anus. Squeezing the saline inside of you in this manner will trigger an involuntary response and urge to pass stool. Sounds unpleasant, but they are fantastic. They are available in grocery stores, just follow the instructions on the box. If you can keep it down, stool softener is also available over the counter. My (and my husband's favorite in treating his patients as a nurse) is Senna-S, shown below, and I also took the max dosage. I also crushed these and administered via my feeding tube, that is an option as well for those with a PICC or central line. Another treasure trove is Witch hazel wipes if you have hemorrhoids already. For extra comfort, keep the container in the fridge so that they are cool when you are ready to use them!

Lack of bladder control- As if HG didn't make you lose dignity enough, you didn't escape the good ol' relaxing of the muscles in the land down under. While engaged in violent vomiting episodes, things can get tricky. My favorite method is sitting on the toilet and vomiting into a bowl/bucket, and then emptying contents into toilet. If it's plastic, make sure you're not attached because the smell is hard to get out. The disposable gallon ice cream buckets are perfect, lid included to keep smells at bay. Garbage bins (including at public restrooms, don't eeeeeven feel bad, just grab it and run to the nearest stall. They'll get it back!) If there isn't a container of some sort, and you don't have something with you, just grab wads of toilet paper and hold it in place so no urine gets on you or the floor. I recently discovered some panties that are designed for leaky mommas, go here for the video! (And you can always use pantyliners as well.) If you're on the go, keep ziploc or emesis bags in your purse. You may have a stash from hospital visits or when you're at the doctor's office and the staff recognizes you and starts stuffing them in your face. :) There are different kinds.

Which brings us to....

Emesis bags- There are two basic designs. You'll find which you prefer. I looooooooooooove these ones! (shown immediately below) the rim fits around your face so there is no splatter, and when you're done with the bag, you can twist it and secure it in place by pushing it into one of the notches on the rim.

Here is another kind. Not as much of a fan because it doesn't fit around your face. Folds up great to go in pockets or small purses though!

And if someone tries to give you this....if you value your clothes or or other possible casualties, just don't. Try not to laugh at the pathetic kidney bean, just ask for a garbage can if they have nothing else.
Broken teeth/teeth problems- The effect on teeth of Hyperemesis Gravidarum matches the horror stories that you hear about Bulima: because both involve frequent vomiting. If you are able to brush your teeth, you may be tempted to do that afterwards to get the taste out. Don't do it! With the acid still on your teeth it actually worsens the problem by brushing your teeth with it still on the surface. If brushing your teeth is a vomiting trigger for you, try switching up toothpastes, (choosing the ones labeled "for sensitive teeth" could really help!) brushing your back teeth first as it will make the toothpaste stay away from the taste buds longer, this helps some women. If you can't brush your teeth, try swishing mouth wash or water.

Lack of hygiene- It may be that you are so ill that you cannot physically handle things like bathing/showering, brushing your hair, putting on makeup, etc. The first one in particular can be a doozy. You're very malnourished, and standing up in the steam and the heat can worsen dizzy or fainting spells. At my worst, I only bathed once every 4-7 days and had to take a short bath. If you have someone that can help you bathe such as a spouse, sister, or trusted friend, even if it's only washing your hair, you will feel so much better. Make sure that if you don't brush your hair everyday, that you keep it in a braid if it's long enough. Many women with HG get dreads, rat nests, and impossible knots in their hair, sometimes so badly they just have to cut it off. A possible alternative is a lot of patience and brushing starting from the bottom up. Using conditioner will help too.Some women also have the problem of hair loss, it coming out in large clumps on their pillow, in the shower, and so on.

Conflicting opinions- Whether it's your family, friends, or medical staff, because Hyperemesis Gravidarum is rare, not very much is known about the condition itself. It's going to be hard because it is such a strong emotional time for you, and a lot of people are going to have opinions, and when they don't work, they may chalk it up to you being over dramatic or that you did something wrong.

Avoid becoming bitter- With so many people offering suggestions to try, saying things like "Oh, I was so sick too!", people not taking you seriously, people avoiding you and being ashamed of being around you, etc. It's hard for that not to take an emotional toll, because well, you're human! Find people who will support you, and even if it's one of the Facebook groups. And something that I've started to say is, "I have a rare condition called Hyperemesis Gravidarum. I can't stop vomiting, and to a point that my body is literally in starvation mode." Putting it in terms like that, and completely disassociating it with morning sickness can help them to see HG for what it really is.

- Find things to be grateful for, even the tiny things. If you're religious, pray for help to see the positive things that will come out of this, pray for endurance and spiritual peace. If you're not religious, try to see the "silver lining" of things. I know it may seem ridiculous, and I'm not going to say it'll make all your problems go away, in fact, your situation may not change at all! But I do promise it will help, it will give you a sense of hope, and it will give you the strength to carry on.
Here is an extremely touching video that helps us learn how we can find happiness, even in our darkest hours of life.

How can I help?
Often, it is not a question of whether or not patients with Hyperemesis Gravidarum have people around them that care about them and their well-being; including their lives in the spectrum of HG. However, because it is such a rare condition, it is hard for people to relate and support someone going through something they've never even heard of, and when something commonly relateable: morning sickness, doesn't have much crossover in how to support an HG patient. I can attest that good people can say insensitive things, both things I've said and things that have been said to me in my severe HG pregnancies. Sometimes it becomes hard to remember that people are trying to comfort you in a way that you can relate, even if it comes across as insulting like "Oh come on, you can't be that sick.", or trivializing, "When I was pregnant, I was always nauseated, I know just how you feel!" To start off, one of the biggest ways you can support your loved one is:
1. Realizing that Hyperemesis Gravidarum is not morning sickness.
If this is a surprise to you, you're not the first nor the last. It's important to realize that remedies such as small meals, crackers, sips of fluid, etc. rarely helps HG patients. And what tends to work in most cases is for women to eat things that "sound good," so don't give them the side eye if they're eating something strange or unhealthy. Cravings become almost instinctual, and often the only thing that is going to stay down is whatever their body is telling them they need.

Realizing that HG is not morning sickness has an emotional and psycological component as well. When they are buffed by society in demeaning what they're going through, having a

10. Being sick is a sign of a healthy pregnancy
9. Don't be such a drama queen, perhaps you should see a psychiatrist
8. Take a shower and then take a walk outside
7. You should feel better by now, it's been 3 months
6. Eat lots of small meals daily
5. Think positive, it's mind over matter
4. Try seabands
3. You should try ginger
2. Eat some crackers

and the #1 thing not to say to an HG woman is...

Oh, I was sick when I was pregnant too!

You may not be very pleased with the treatment your doctor is offering for your Hyperemesis Gravidarum. It occurs too often, there is not enough awareness and education on HG. However, there has been a network set up in two places (that I know of thus far).

Hyperemesis Gravidarum (HG) Facebook group

First, you need to be added to the group. It may take a little while, there are only 4 administrators for the +7,800 members.
Next, when you open the page, at the top you will see "Pinned Post" by Angela Hawkins. (Remember to read the rules!) Click on that.
The last link offered in the pinned posts is titled " Need a doctor? Check our list."
Click on that link, look up your location information, (worldwide) and call the doctor!

Help Her Referral Network

Go the the website here.
Enter your location information. (worldwide)
Find the one(s) closest to you and give them a call!

What if there isn't a doctor near me?

Sorry, but you may need to "blaze the trail." If you are in this situation, go to this website here to see a list of interview questions to ask you doctor. Remember you are putting your life and your baby's life in his/her willingness to help you with your HG. Trust your gut and pray!

How to get ready for your first doctor appointment

They say that first impressions are very important. If you are getting ready to meet your doctor for the first time, here are some of my suggestions. (In addition to interviewing the doctor beforehand with the questions mentioned above.)

Write down your medications and dosages. This may not apply to you if this is your first Hyperemesis Gravidarum pregnancy unless you are taking unrelated pregnancy medications. If this is not your first time, write down what medications you have tried, regardless of their efficiency in treating you.
Write down or be prepared with a firm number of the average amount of times you vomit a day, and include what your minimum and maximum ranges are. When you say "I throw up all the time" there is much room for interpretation. When you say "I throw up on average 20 times, the fewest being 10, the max being 30," they take you more seriously and it's very clear that you're not dealing with morning sickness.
Don't be afraid to speak up. Your doctor may start rattling off morning sickness treatments. For my first baby, when I didn't know what HG was, there was a nurse in the office that was very rude and didn't listen. She obviously didn't have any patience for my supposed over-dramatic, first-time-pregnant woes. When I went in to get fluids, the first time she sent me away, telling me to go and try a list of remedies that I'd already tried. The second time I went in, she did the same thing, but this time I interrupted her with "tried that." She seemed to think it was a contest and started naming off a total of at least two dozen different remedies. When she started repeating herself and couldn't think of anything more, she said, "Wow, you really have tried everything!" Guess what? I got the fluids. If your doctor or medical professional is taking the conversation in a direction you don't agree with, be courteous, but get them back on track.
Keep it together. You're about to see the person that you're literally putting so many hopes and trust in, hoping that they'll help bring an end or balm to your suffering. That plus pregnancy.....you're prone to get emotional. Try to keep the tears at bay, especially if your doctor is a man; a gender who tend to feel an urge to flee when women are crying.

Keep your answers concise. Doctors are often behind schedule, and are trying to get around to see the appointments as fast as possible. They may be harried, and may not want to take a long time to discuss your treatment. If you try and abbreviate as much as you can without leaving important details out, they will be less prone to interrupt you or stop listening to what you're saying. This relationship will help you to get to all of your concerns and make for an open environment.
Write down your questions. When I'm pregnant, I have an ongoing memo or note on my phone listed "Questions for Doctor." In between appointments, I always think, "Oh, I should ask about that," and then completely forget what I wanted to ask in the appointment itself, even if it's been a hot topic in my thoughts for weeks. This shows that you are coming to your appointment prepared, and that you value your doctor's time. Not to mention helping to get your questions answered despite a pregnant/mommy brain!
Be courteous, but remember you're paying for this appointment. More times than I could count in my first pregnancy, I waited a loooong time to be seen, and then my doctor tried to do the 30 second appointment and get the heck out of there. It took me a while to get the courage to say, "I'm sorry, before we're finished, I have a concern." Or something to that effect. I felt like I was imposing on his time and wanted to help him catch up at my own expense. When I realized what I was doing, I stopped myself by realizing I was paying for this time, and I needed to take advantage of it to get the care I needed. Now, if you have a found a doctor that says, "Do you have any more questions?" until you run out of questions, in my book, you have found a winner. I did for my second pregnancy, if you'd ask me, I'd tell you the sun rose and set on my doctor!!
Send resources. If you are "blazing the trail", send the helpher.org resources to your doctor ahead of time. Do it with plenty of time before the appointment, and then follow up at least three days (beginning of business day) before to see if your doctor has read it. If they haven't, ask them to, call back the next day and see if they're gotten to it yet. Be kind and respectful, because you don't want to come off as over bearing, but you do need him/her to be prepared to help you.
Send your patient records. This is common sense, but I thought I'd put it here to help ease your mommy brains!