There's no easy way out.

Last week I got a message from my doctor's nurse saying that she had something very important to talk to me about, and that I needed to call her back immediately. When I got a hold of her she asked me if I was still taking Reglan- the (only) medication that empties my stomach. When I told her I have been taking it it every so often she told me that my doctor just got back from a medical conference, and that he learned some "troubling" new information on the drug (there's already a ton of old, troubling info on it.) She said to stop taking it immediately and to talk to my doctor at my pre-op appointment next week.

I've been trying not to take it, and damn has it been hard. I can still take my nausea medicine, but there's a lot more to Gastroparesis than just nausea, and not being able to take Reglan means I'm not digesting much at all. I broke down and took it the other night after I had eaten way too much for dinner. My stomach was so distended that it looked like I was 8 months pregnant, which is uncomfortable and incredibly painful. Without the medication that's just something I have to deal with for hours, and hours on end.

Now that the only medication that helped me is off the table, I need to get more serious about trying to help my condition through my diet. GP isn't a disease, and no dietary changes will cure or heal it. The point of a GP-friendly diet is to try and eat foods that will be easily digested in order to help with the symptoms.

Right now my eating patterns are severely messed up. I try and go as long as possible without eating (and actually feel little hunger during the day) because eating makes me so miserable, and I get so hungry that I get nauseous and weak. At night I often end up binging, and that makes even more nauseous and miserable. I eat whatever sounds appetizing, which is usually something junky, and then I pay for it. I also consume a lot of sugar because it's easy to digest and if I end up burping up the taste of something sugary, it usually isn't completely disgusting. My doctor has recommended eating a few small meals throughout the day and that just makes me feel worse. It means there is ALWAYS food in my stomach and that is an awful feeling.

Lately I've been doing a lot of research into GP "friendly" diets, and it's been a huge downer. I have always been someone who loves to eat, and loves to eat whatever the heck I want. Obviously this condition has drastically changed my ability to do that, and it's something I'm still coming to terms with. I should also note that a GP friendly diet is NOT a healthy diet. The number one tenant of a GP friendly diet is LOW fiber and you know what has lots of fiber? Just about everything healthy. A low FODMAP diet is also recommended, and that list also includes a lot of foods that are very healthy for people without gastrointestinal diseases/ conditions. (I also have to follow specific dietary restrictions- avoiding anything containing tyramine- because I'm on an MAOI medication.)

The other day I cross-referenced all the different diets and came up with foods to avoid and foods to eat. Here is the list of foods to avoid:

All Dairy
Wheat/ Gluten
Rye/ Oats/ Kasha/ Barley/ Quinoa
Brown/ Wild Rice
Seeds
Nuts
All Soy Products
Lentils
Legumes/ Hummus
High Fructose Corn Syrup

Meats:
Sausage, Pepperoni, Salami
Steak

Fruits:
All Dried
All Raw
All Skins

All Citrus
Avacado
Apple/ Applesauce
Apricots
Dates
Canned Fuit
Cherries
Figs
Guava
Lychee
Mango
Nectarines
Pears
Papaya
Peaches
Plums
Prunes
Persimmon
Watermelon
Coconut (Coconut Milk/ Cream)

Veggies:
Artichoke
Asparagus
Beets
Leeks
Broccoli
Brussle Sprouts
Cabbage
Cauliflour
Fennel
Green Beans
Mushrooms
Okra
All Peas
Summer Squash
Onion

Other:
Coconut
Agave
Chutneys
Jams/ Jellies
Molasses
Pickles/ Relish
Artifical Sweetnesrs
Xylitol
Sauerkraut/ Kimchee
Soy Sauce (Fish Sauce)
Yeast Spreads (Marmite)

So what does that leave? Here is what I came up with as "safe" foods:

Meats*:
Beef
Chicken
Canned Tuna
Pork
Turkey

Fruits (Cooked - No Skins):
Bananas
Berries
Grapes
Kumquat
Mandarin Orange

Veggies (Cooked - No Skins):
Bamboo Shoots
Bell Peppers
Bok Choy
Cucumbers
Carrots
Celery
Eggplant
Pumpkin
Potatoes
Butternut/ Winter Squash
Yams
Tomatoes
Zucchini

Other:
Eggs
Almond/ Rice Milk
Creamy Peanut Butter
Certain Gluten Free Products

Certain Spices (If Tolerated)

*Some people recommend avoiding all meat but I'm not sure I could ever do that.

Out of all the foods on the recommended list, I currently eat just about none on a regular basis. Of course I eat almost all those meats, but usually in conjunction with something else I shouldn't be eating. Like sauce, breadcrumbs, or my favorite no-no, cheese.

Now, let me say here that I am incredibly thankful I can eat food at all. A lot of people with GP completely lose their ability to digest and have to live the rest of their lives on feeding tubes and IV nutrition. Right now I can eat just about anything, I just pay for it later. But even that is something that many other GP patients would kill for. In regards to this disease, I am currently one of the luckier ones. My fingers are crossed, but there are no guarantees for the future.

After a lot of thinking, I've decided that I need to give the recommended diet a try. It's not exactly healthy (I'll need vitamins), but it's healthier than what I'm currently eating (mostly sugar) and right now I'm desperate to feel better. To enjoy life again.

After my surgery I am going to go cold turkey onto this diet. N will have to take care of me for a week so I'm hoping that if I can come up with a mean plan, he can help me stick to it. If it makes me feel better I'm hoping that I can use it as an elimination diet, and then slowly add back in foods (like sweet, sweet gluten) to see if I can tolerate them or not after they've been out my system.

Do I want to do this? HELL NO. Thinking about giving up sugar makes me want to curl up in a ball, and thinking about giving up wheat and gluten makes me want to die. But I have to try something. Especially since the surgery I'm getting isn't going to help with my motility.

 

I'm still battling to come to grips with this condition and what it means for my life now, and my life in the future. It hasn't been easy, but it's something that I have no choice but to do. I guess we'll see where it goes from here.

Another Surgery Update

I was hesitant to write about this before today, because I didn't want to jinx anything. When I get really anxious about something my Obsessive Compulsive Disorder flares up (it is an anxiety disorder after all) and my fear of "jinxing" manifests itself in, well, strange ways.

Anyway, for the past couple weeks I've been researching and thinking about the procedures I had scheduled. I was having multiple panic attacks a day, and the more I read and learned, the less I wanted to go through with the surgery. My "gut" wasn't exactly screaming "NO DON'T DO IT", but it was saying "Not yet. Don't do it yet."

There aren't any easy treatments for Gastroparesis. There are few medications, and they all carry serious potential side effects. There are few surgical options, and they all carry significant risk.

Right now my GP is moderate. My motility is significantly impaired, and I have severe nausea along with stomach pain, bloating, burping, etc., but I'm not vomiting and I haven't experienced any weight loss or malnutrition. People with severe GP often have to have their stomachs either partially or completely removed, and they have feeding tubes/ IV nutrition for the rest of their lives. There is no guarantee that that will or will not happen to me. Only time will tell.

But for now I'm just not comfortable with two irreversible procedures. The possible side effects of both surgeries could leave me worse off, and that's something that's incredibly difficult to think about. So I decided to ask my doctor to reconsider the pacemaker. It's a major surgery with serious risks, but it's also reversible (that is, unless I die on the operating table or of an infection, but what are you going to do?) My biggest concern is the cost, but we're at the point we're willing to pay almost anything for some relief.

So what is a gastric pacemaker?

A gastric pacemaker isn't technically a pacemaker- it's a neurostimulator.

Neurostimulators are battery powered device[s] designed to deliver electrical stimulation to the brain, central and peripheral nervous system

Neurostimulators are an integral component of surgically implanted systems such as deep brain stimulation, spinal cord stimulation and vagus nerve stimulation, designed to treat neurological disorders and neuropathic pain..

These devices are implanted within a person's body, usually beneath the clavicle. The neurostimulator can be calibrated by a neurologist, nurse or trained technician to the individual patient's needs.  

Neurostimulators must be replaced periodically upon battery failure, (usually within three to five years) though battery life is dependent on individual usage. Battery life can be reasonably predicted by the use of a telemetry programming device so that the unit can be replaced prior to battery failure. Rechargeable devices are now commonly implanted with a battery life in the range of 15 to 20 years dependent on use.  [Wikipedia.]

A gastric neurostimulator is implanted next to the stomach, with it's leads (insulated wires) attached to the smooth muscles of the lower stomach. This stimulator sends electrical currents to the stomach, and though doctors don't know exactly how it works, it often interrupts the nausea/ vomiting signal of the brain. [Medtronic]

It isn't a cure for GP, it's a band-aid for nausea. I've read stories where people say it's improved their motility, but that is very rare (if not a placebo effect only.) And right now nausea is my most debilitating symptom. Reflux and regurgitation are next, but the doctor doesn't feel safe doing this surgery with a reflux surgery (meaning at the same time.) The risk of the pacemaker getting infected are just too high. My doctor want's to see how I feel after this surgery, and though it's likely I will still need reflux surgery of some kind (because my LES is partially open), we're going to work on this first.

I've read wonderful things about this surgery, and I've read terrible things. I've read stories about it shocking people, perforating organs, and even working it's way out of the skin! Sometimes it's even visible through your skin- though I have so much padding on my stomach you probably won't be able to see mine.

The surgery itself is not unlike a c-section where they will be making a sizable incision in the abdomen (thus cutting through the abdominal muscles), and I believe they will make laproscopic incisions as well. It can take up to a year for the device to be fully effective as the doctor slowly turns up the device at their office. The device can fail, and the batteries can and will fail eventually (likely after just a few years.)

You have to avoid activities that can jostle the device out of place like rollercoasters, running, and vigorous abdominal workouts. You can't (well, shouldn't) go through metal detectors, and you can't (obviously) get MRIs. But absolutely everything will be worth it if it works. And I pray it does.

My surgery is still scheduled for the 21st of April, but we need to get insurance approval. The receptionist today told me it could be weeks, so I'll be hoping it comes sooner than that- soon enough for me to keep the date of April 21st. I also hope that they approve it period. I will fight it if they don't, but lord what a pain.

I'm still scared out of my mind and questioning if I'm making the right decision, but I feel much better than I did before. In the end, this is a much better first step. But ask me how I'm feeling the night before the surgery. ;) Something tells me I'm not done with these panic attacks yet.

 

And the best news? I'll be able to eat the delicious food at R's party!

Doubts and Questions

When I started writing in this blog regularly I never thought it'd become a chronicle of one of the toughest and most unexpected health issues I've ever dealt with. I had hoped it'd be a way for me to actually do something with my free time, to share our renovations, to help keep myself accountable for progress. I thought it'd help me grow in a more functional person. I never thought it'd see me through this.

Every since I left my doctor's office on Monday I have been having constant panic attacks. The more I read about the surgeries the more afraid I become. Last night was bad. I had started out the day feeling at peace with my decision to have surgery, and then at night I started doing a little more research into personal stories. So much of what I found was horrifying. I had just settled myself down to sleep when I got a phone notification and this popped up on a Facebook thread I had started:

Lauren tread very carefully and make sure it's [definitely] what you want to do. I had my [Nissen Fundoplication] last year. I didn't know at that point I had [Gastroparesis] but I became very ill in hospital and the surgery cause me lots off problems and now I am at end options for GP. I am now on iv nutrition and also have a feeding tube. I have found out my small bowel and colon are now involved as well as my esophagus is abnormal. Please please make sure it's the right thing to do.

After that I had one of the most severe panic attacks I've ever had. It rivaled the one I had right before going into labor with R, which is REALLY saying something. Is this the right thing to do?

Last night I calmed myself down by saying that I wasn't going to go through with the surgeries. I would ask the doctor again about the pacemaker because if nothing else it's reversible. Today I'm on the fence again. I feel completely and utterly lost.

Gastroparesis is a very variable disease. There are people who have very low motility and have no symptoms. There are people like me who have constant nausea and pain, but are still able to eat (certain things) and do not lose weight/ become malnourished. There are also people who can do nothing but vomit up everything they try and eat and lose a great deal of weight/ become malnourished. I'm not at that point and sure as hell never want to be at that point- especially if it happens after a surgery that was intended to help me in the first place!

I don't want my doctor to feel like I'm second guessing his medical opinion. But I'm very scared right now. I left a message to make another appointment to hopefully discuss my concerns with him. I guess we'll see where this goes.

Health Update - Surgery Is Scheduled

Yesterday was my surgery consultation, and after talking with my doctor about my symptoms he's decided against the gastric pacemaker, and is recommending both a pylorplasty and a Nissen fundoplication. Although this makes the most sense for my case, I was- and am- pretty shocked. I've been gearing myself up to accept the (very expensive) pacemaker surgery, and I hadn't even thought about a pylorplasty, let alone a fundoplication.

When I first started seeing this surgeon I thought that GERD was my only problem, and because PPIs and reflux meds have never worked for me, I thought a fundoplication was my only option for relief. I knew and know it's a controversial surgery, but I couldn't take the symptoms anymore- especially the regurgitation. I got mixed results during my reflux testing, and during this period of time (I've been seeing this doctor for about 7 months now) the nausea that I've been suffering from for as long as I can remember started getting worse and worse. As did my bloating and burping, in which I'm able to taste the food I've previously eaten for hours and hours. I had lived with those symptoms for so many years I thought they were normal.

After discussing these symptoms with my doctor he told me that he suspected that I had Gastroparesis (GP) as opposed to GERD. And GP can cause regurgitation and reflux. I've had a prescription for Reglan, a stomach emptying medication, since my pregnancy and it's always helped me. But there are very serious side effects associated with it's long term use including tardive dyskinesia (incurable facial ticks) and it has a blackbox warning. My doctor put me on a "safer" medication called Domperidone which I had to get from a special pharmacy because it's not FDA approved and it just didn't do much of anything except make me lactate profusely, and since I've weaned that was a major problem. For the record Reglan makes me lactated too but not as much. I've resigned myself to the fact that I'll never stop lactating.

To get a definitive answer about the GP I did the SmartPill test where I swallowed a (massive) computer pill that transmitted my gastric emptying time. Somehow it came back normal. I was devastated that the diagnosis I thought answered everything might not be correct. I had no idea what else could be causing my symptoms. After I weaned R I was able to do a Gastric Emptying Study where I ate radioactive eggs and had x-rays to see how well I was digesting that. When I went into the doctor's office to finally get the results (I had to put it off after getting a stomach bug- so fun) I was totally prepared for him to tell me that it was normal, that all my symptoms were in my head, and that I should probably go to a mental hospital. Thankfully I was wrong. Stomach emptying times can vary significantly in GP patients, being normal one day (or one time of day!) and being abnormal the next. But my GES made it very clear, I had GP.

With the Domperidone not working and my reluctance to keep popping Zofran (a prescription nausea medication) and Reglan 4 times a day we decided to look into surgery. That's when I thought the gastric pacemaker would be the best fit for my situation because the nausea was just out of control (still is.) But the pacemaker doesn't help your stomach empty, so the only symptom it could eliminate was nausea. The bloating and burping would still be around, and I'd likely still need a stomach emptying medication- the medication I was trying to avoid the most.

That's when my doctor recommended a combination of a pylorplasty and a fundoplication. He said that when he did my endoscopy he didn't see a hiatal hernia (which is interesting because my last GI doctor said he saw a prominent one) but he did see that the valve at the top of my stomach was loose and not functioning properly. Although the GP causes regurgitation and reflux because when the stomach contents can't go down they try to go up, the faulty valve wasn't helping. But these surgeries are a big deal. And I have found very, very little information about them being used together to treat GP. Here is a very simple explanation of them:

Source

In a pylorplasty the doctor cuts the pyloric sphincter muscle at the bottom of the stomach, and this helps food pass out of the stomach more easily.

Possible complications: "Dumping syndrome", diarrhea for the rest of your life, bile reflux

Source

In a Nissen fundoplication the doctor wraps the upper portion of the stomach either partially or completely (my doctor is recommending a complete wrap for me) around the esophagus to prevent regurgitation. 

Possible complications: Not being able to burp or vomit (possibly forever), bloating (from not being able to burp),  trouble swallowing, the wrap coming undone

As you can see the possible complications from these surgeries are very serious. The doctor said that most patients improve significantly, some patients improve completely, some patients don't improve at all, and a very small number of patients develop the complications I listed above. I could either wind up almost completely better, or I could wind up even worse than before. Although the numbers are skewed towards feeling better, I have to take the threat of the complications very seriously.

I know that the fundoplication especially is a very controversial procedure, and the majority of people lose the ability to burp or vomit. But that doesn't mean your body doesn't try to- you either get totally bloated with gas because of the former or dry heave because of the latter. But the fundoplication is important because one of the more common side effects of the pylorplasty is bile reflux, which is HORRIBLE. I've refluxed bile a few times in my life and it is AWFUL.

Today after a gallbladder ultrasound (they wanted to make sure it was ok, and it is) I scheduled the surgery for April 21st- a little more than a week before the party we're planning for R's birthday. I'm going to try and push the party back another week but it's likely I will still be in bad shape at that time. I'm pretty heartbroken. Recovery is going to be long and difficult and because it can vary so much from person to person I have little idea of what to expect.

I am incredibly nervous. This surgery will change my life and possibly not for the better. It's a decision I've been agonizing over ever since my appointment- as my body agonizes over eating any kind of food. Although the surgery has been scheduled I have a lot to think about, and I'm not taking this lightly. Positive thoughts are most appreciated- I'm trying to think them myself! :)

Diagnosis Confirmed: I have Gastroparesis.

 

A few weeks ago I had my follow up appointment to go over the results of my Gastric Emptying Scintigraphy (Scan). The doctor was in a hurry- he had just come from surgery and squeezed me in- so we didn't go over the nitty gritty of the scan, but my stomach emptying was markedly delayed. I have Gastroparesis.

To be honest, I'm relieved it was abnormal because it means that there's something actually wrong with my body, and that it's not somehow "all in my head." When the Smartpill test didn't show any delay in my stomach (I suspect it's because the pill was so heavy that gravity helped it to digest faster) I got really worried that we wouldn't be able to find out what was wrong. I have also gotten worse in the past few months, and that too may have impacted the Smartpill vs. GES results.

These so called "invisible illnesses" can be a real pain. When you don't "look sick" people treat you like you aren't sick, even if you're dealing with debilitating symptoms. I've dealt with this my whole life with mental illness, a third of my life with autoimmune hypothyroidism, and now I'm dealing with it regarding these GI issues. Another complicating factor is that most people with Gastroparesis vomit multiple times a day, and while severe nausea is my biggest issue I don't actually vomit all that often unless I am sick. Of course I take a LOT of prescription anti-emetics, and a lifetime of emetephobia has helped me keep it down if at all possible. I also haven't lost any weight- and god knows why because I am not eating a whole lot these days.

Anyway, the doctor said that I am to continue taking 3 pills of Domperidone 4 times a day and I have another appointment in a couple weeks to see what my symptoms are like (since they've changed over the time period I've been seeing this doctor) so he can decide what kind of surgery to preform. Right now he is considering two options:

Pyloroplasty: This is a laparoscopic surgery where the valve that empties the stomach is cut and then sewed together in a more open fashion. This can help the stomach empty better and improve symptoms. There are some risks to the surgery and it isn’t a good choice for everyone. Potential problems include reflux, (including bile reflux which is difficult to treat with medications) persistence of gastroparesis symptoms, leaking from the surgery site, infection.

Enterra device: The Enterra device was FDA approved for compassionate use in 1999. It is a neurostimulator that is placed surgically. Although this does not make the stomach empty normally, it interferes with the message of nausea to the brain. This improves the overall quality of life.

(Descriptions from my doctor's website.)

I have heard that other doctors inject botox somewhere in the stomach and that helps too, but I forgot to ask my doctor about that. I will the next time I see him.

Anyway, the doctor is leaning towards the gastric pacemaker because the nausea is my biggest issue, and I am all for that. The biggest thing I am worried about is the cost. I've read online that the surgery costs about $70,000 and applying my insurance deductible and coverage rate that would mean I would be responsible for roughly $20,000. And that's if they cover the surgery at all or cover it according to the guidelines I was looking at. N has been really supportive of my fears, and says that if it makes me feel better, no cost is too great. I feel horribly guilty, but not being able to function normally has become a very serious issue. Also, if I was feeling better than it'd be possible for me to get a part time job (I'd love to do this when R starts school) and that would help us pay off the surgery in no time.

And of course there is always the risk that I get surgery and it still doesn't help. These procedures aren't perfect, and there are a lot of risks. And there's also the possibility that it could get worse, and then god only knows what we'd have to do. But I'm trying not to think about that and just get through this next month so we can start talking serious treatment options.

Right now I'm just at my wits end. I'm spending hours in the bathroom, am not going out in public much, am not eating much, and just feel awful in general. If I can't live a normal life can I just live a *relatively* normal life? Some days I feel like it's too much to ask.