When we are no longer able to change a situation–just think of an incurable disease…–we are challenged to change ourselves” — Viktor Frankl, Man’ s Search for Meaning.
Borderline. According to my doc, I’m borderline. This is great, provided things get better. I’m confident (by which I mean really, really hoping) they will.
So as I’ve mentioned before, I have heartburn issues. They started a few months ago after a bout with a rather nasty, unrelenting flu that just wouldn’t leave. Mind you, I’ve had heartburn issues since I was 18, but these would come for about a week, then go for a year. These started getting worse over the past few years, but nothing I’d consider out of the ordinary: if I overate, or ate a wrong food, I’d get heartburn. The solution was simple: avoid overeating.
Not so this time, however. Heartburn started and stayed, for months. For a while I treated this with calcium tablets, but after a few weeks I decided to (listen to The Wife and) go to my doc to see what was going on. Of course, deciding to do something and actually doing it are two totally different things. I decided, but didn’t go. I was ashamed to, after having been there almost weekly for the past month with non-specific symptoms of something, I didn’t quite know what. Frankly, I think most of it had to do with anxiety, but not so then.
Anyway, so I waited. And kept in my junky-eating ways, until one day I got some of the worst pain I’ve ever felt, gnawing away at my abdomen like an alien burrowing through my intestines. This was on a Saturday, and by Monday I was at the doctor’s office, getting blood work done. Within a few days I went in for an ultrasound. Both of these were to check my liver and pancreas to make sure they were working properly. The suspect then became my gallbladder.
Went to a gastroenterologist who told me to get a HIDA/CCK done. This is where they lay you down under a Geiger-counter and inject you with some radioactive stuff to make your gallbladder expand, then contract. Needless to say, it made me nauseous and bloated as hell. The result was an ejection fraction of 19%, meaning the gallbladder was pumping at about 1/5th normal strength.. Recommendation was to take it out, but I resisted. The doc gave me some meds and I was on my way.
A few months later I returned to the doc. Heartburn was still there, even after changing my diet and losing weight. The next test was a “gastric emptying exam”, where I was to be the recipient of a deliciously bad radioactive egg sandwich. Mind you, this wasn’t just any sandwich: this was a scrambled egg sandwich (made with egg substitute), on white bread and with strawberry jelly. As if the strawberry jelly on an egg sandwich wasn’t disgusting enough, the egg was laced with a radioactive isotope. Maybe they were hoping to feed the alien in my intestines, I don’t know.
So I ate the sandwich, laid down under some type of scanner and then watched as the food stay in my stomach for a while, then start moving down my intestines. A week later came back to the gastroenterologist for the result: 50% gastric emptying was achieved in 80 minutes. As you can see, this test was to find out how fast my stomach would empty its contents. The expected time was around 70 minutes, but the lowest range of “normal” was at 90 minutes. I told him before he received the paperwork from the lab that my emptying rate at the end of the test looked to be at about 50% and described to him the progression. After looking at the paperwork he suggested I become a radiologist. Officially the diagnosis was inconclusive. A bit lower and I would have been officially diagnosed with gastroparesis. A bit higher and… well, I would be in the same position, I suppose.
So you’re probably wondering what gastroparesis is, and why, if I don’t officially have it, I’m talking about it.
Gastroparesis is a condition where the stomach contents empty slower than they should. (Whether it’s common or uncommon depends on who you ask, but from the numbers I’ve seen it seems that while incidents are low on an annual basis, prevalence is fairly sizable in most populations.) Sometimes this is just a bit slower, like in my case. Other times it can get bad, to the point where tubes have to be inserted in order to deliver nutrition to the person. A number of things can cause gastroparesis, but a third of all cases are considered to be “idiopathic”, meaning they have no known cause. A large percentage (perhaps including some of those idiopathic cases) are caused by post-viral syndromes. In other words, if someone, for example, had a bad flu that wouldn’t go away, and the flu bug made its way into the nervous system and attacked the vagus nerve–the nerve responsible for a great deal of the autonomic functions of the digestive system–then the impairment of this nerve could conceivably cause the stomach to not pump properly, or the gallbladder to quit functioning as it should. That’s not to say this is what happened to me, but it is certainly a possibility given my particular case. Other causes include diabetes (which I don’t have), autoimmune conditions, multiple sclerosis, Parkinson’s, autonomic neuropathy… the list goes on.
Now why am I talking about it? Because I’m having a bunch of the symptoms–heartburn, weight loss, early feeling of fullness, nausea, stomach twitching, and stomach pain being the most common–and despite the official diagnosis, being borderline to me means that I have it, but not to the point where I’ll be given any medication for it. (Normally motility agents, such as Reglan and–outside the US–Domperidone get prescribed. These help improve the stomach’s emptying by stimulating the stomach muscles.) Given my history, the doctor suggested first taking care of the anxiety issues, which is what I’m working on now. (Part of this, of course, is moving back to Tampa, which I’ll be doing by the first week of October. I really do believe that my health has deteriorated while in south Florida.) Additionally, he said that losing weight, exercising, acupuncture and moving to six small meals a day should control the heartburn. He also still recommends the gallbladder removal, but I told him I’ll request another HIDA/CCK be done in about a year to see whether there’s any change in function. If it’s considerably better, then it stays. If it’s considerably worse, then it’ll probably go. If it’s the same, then… I’ll consider that a victory. Additionally, he wants to see how the gastric emptying is like in about a year. If it’s improving, then we’re on the right road. If it’s deteriorating then we have to look into what may be the underlying issue. Needless to say I want the former.
So that’s where I’ve been. That’s why I haven’t written. Between the stuff for the house and my health concerns (really, I do tend to be too much of a hypochondriac), I just haven’t felt like writing. The fact that I’m forcing myself to do this is because I figured I had to get SOMETHING out, and this was the most pressing item on my mind.
Now that this is out, I’ll leave it as is and leave the matter alone. I’m watching my diet, exercising, and losing weight. For now, this is all I can do. Hopefully my case is one of those which stands a good chance of recovery, because while I’m not overtly concerned over what might happen the next year, I can’t help but wonder how this will affect my life when I’m in my 40’s or later. Whatever the case may be, I know this: I have a wife who’s more supportive than I could have ever imagined, and a family who’s there for me at times when I don’t even seem to be there for myself. What else can a guy really ask for? Other than for good health, I mean.
P.S.
Within the week I’ll have some pictures of the new house, I promise.
I hope you are feeling better now.
Take Care.
Better is relative. Mind you, I could be doing a lot worse, and had I not jumped on this I probably would have. But will I be feeling 100% again, like I had when I was younger? That I don’t know, though I’m with you in hoping.
Yeah, trust me moving away from South Florida helped my health out – that place is like hell with palm trees and is full of angry and bitter people. Feel better and follow your doctor’s (and wife’s) advise.
I hope you are fine? you haven’t posted in awhile?
Hey Raji,
Doing well. Been busy with the house purchase and, frankly, haven’t much felt like writing lately. I know it’s unusual for me to take breaks like these, but I guess I hadn’t realized how long it was since I last posted. I’ll probably have something up this weekend though: house purchase is official tomorrow as of 4:00pm, God willing. Thank you for the concern. — G
Hi,
My name is Austin. I am having a similar issue with what you are describing! And needless to say I have many soul-searching moments, thinking that all my dreams and my life will be over and shattered with. But then I told myself that I just gotta plow through. I am going to the GI doc to let her know about my own research and hopefully she will administer the proper tests. Would you email me tell me about your progress? I would be really comforting to me to know what is like for someone else who had experiences withis. Please email me 🙂 that would mean so much to me. Thanks!
Austin
Just as an update: May 27th, 2010 I was pronounced “cured” of my gastroparesis. Had another gastric emptying test done 2 days ago and the results showed a 1/2 emptying time of 60 minutes.
Every day, in every way, I am better and better.
Many of the symptoms remain, although things are improving. Still overly acidic, still on Nexium, but working on getting off of it. Looks like that part is tied to my weight loss, however.
Still, great news.
Hi! I don’t know you, was just doing some searches for GP.
I also showed “borderline” with my gastric emptying study but since my symptoms are so bad my gastro doc said he just considers it to be GP and is treating it as such. I am on Erythrocin 4 times a day and also Prevacid for the acid. It’s working to alleviate the pain about 80%. This means I am not miserable and can usually just distract myself from the pain. It also means it can get worse sometimes to the point that I cannot lie on my stomach and have to wear sweatpants. I think until this happens to a person it is difficult to imagine…
Anyway, I also had a very horrible bout with influenza that just lingered and lingered. I was in bed for about 10 days, then was fragile for about a week. I had H1N1 the year before and it was not as bad as this virus. I am serious…H1N1 was easy compared to this random flu. It was just abnormal that I could not shake it. I am 32 years old, normal weight, very active, otherwise very healthy (or was!). The symptoms of the GP started about a week after emerging from my deathbed. I have heard so many stories about having a bad illness like this and then suddenly having GP.
I also had h. pylori with the GP. I don’t know if this was a coincidence, or maybe not so much of a coincidence? I think it might make sense that food sitting in the stomach for hours on end could cause overgrowth of bacteria. Most people contract h. pylori at some point in their life and the body just overcomes it, they never know it was even there. But it got horrible for me, I couldn’t get up in the morning (DEBILITATING fatigue), horrible headaches, body aches. Since taking the meds for the h. pylori I have boundless energy, no head or body aches, but tummy issues remain. Fun fun. Lots of Ensure drinks for me when this gets bad. At other times I can eat normally. It’s random and makes life scary every time I sit down to a meal. I don’t know if I’ll make it or not…no way to live…
It’s very encouraging to know you are getting better. But you haven’t updated in a year…I am wondering how you are doing these days?
Thanks for sharing your info. It’s at least reassuring to know others struggle with this. It can get lonely and depressing. I am just grateful I have been able to maintain a normal weight over the past 5 months with this.
All the best!!
Catherine
Thank you for your note. I’ll be emailing you a more thoughtful response.
All the best.
My test showed that I had retained 68% of food at 2 hours,and the norm is 60% at 2 hours. Would that be considered borderline?
That’s up to your doctor to interpret. In my case, my result was almost identical to yours. One doctor said “Not really. It’s borderline, we don’t have to worry about treating it”, and another said, “you have gastroparesis. Here, take a domperidone.”
This has given me more hope than I’ve had yet! I had an intense throat -type virus right before Christmas and by the 5th of January I was having the awful reflux. As I said, the test showed 68%. I’m taking clonazepam for the nausea and klonopin for my anxiety over the whole thing as well as remeron just to sleep. It’s really well controlled right now – really no pain or nausea. I did lose about 20 lbs over the first six weeks and was hospitalized last week for three days because I was simply falling apart, not sleeping, unable to put a bite of food in my mouth, and just retching — never vomiting. I did just start domperidone, and notice that I do feel really tired and rather weak at times, but at least no pain or nausea. I’m being a stickler about what I eat, keeping up some exercise after each meal, and stress-relieving activities as well. So – it took you a year or more to recover completely? During that time, how did you cope? I’m 54, but have been very healthy – biking and walking. I’m going to try to hard to keep this all up and not be so fearful. Reading your account and that you’ve had a similar test result has encouraged me SOOOOO much. Thank you.
1) Domperidone makes you sleepy? Interesting.
2) Your weight loss sounds VERY familiar. Oh, does it ever… Never did the retching, though. Vomited in the early stages, but never really since.
3) Keep up with being strict with your food. I found in my case that a LOT of my symptoms were alleviated when I eliminated certain foods from my diet:
– Sodas (of any kind)
– Dairy (anything with casein in it, as well as lactose)
– Excessive caffeine (a little was OK)
– Too many breads (though I think this has to do with the casein, as milk is used in a lot of breads, especially whole grain.)
– fatty foods: these are the enemy.
Those are some of my examples. I’m still figuring out what I can and can’t eat, honestly, though I now have a pretty darn good idea. For me, a safe bet is keeping it as natural as possible: fruits, veggies (sometimes cooked) and whole grains such as quinoa.
(Funny side story: So, a few months ago we met a couple of friends at the Ragland Road restaurant in Downtown Disney. They were there for the annual marathon, and we went to meet the for lunch. We went there at my suggestion. Problem is, I hadn’t been there since I discovered my food issues with milk. Looking at the menu, I realized nearly EVERYTHING had milk in it. It was almost impossible for me to order! My friends, of course, laughed. Later, we were planning getting together and I mentioned, “OK, if we do lunch, you pick the place next time.” “Oh no,” he said. “I don’t know all your food issues. YOU know your food issues and you still picked a place you couldn’t eat anything in. With you, the closest thing I’m picking is a city. Miami. There. We’ll eat in Miami. The rest is all you.” This is the kind of stuff I deal with now.)
4) How long did it take me… Hmm… that’s a good question. I had 2 tests done. The first I already mentioned. The second was done… 3 years later, I think? 4? That one showed no gastroparesis (GP), my time for that test was above the cutoff (Food remaining was 50% after 2 hours, cutoff was 60%)
So, very directly, you can say my GP was “cured” after about 3 years, when I noticed that, sometimes, Domperidone would actually give me heartburn issues, as if it was trying to push food TOO fast.
One thing I learned, though, is that, at least in my case, whenever I get very sick (or hell, not even very sick; whenever my cold sores flare up) or my stomach gets angry (if I drink too much, a RARE thing, or overeat, like at a party or at an all you can eat place), or if I’m under a lot of stress (when traveling, for example, or for whatever reason) then my gastroparesis will flare up and require maintenance care (domperidone, DGL, omeprazole, soft, bland foods) for at least a week, usually 2. So while I’m not still fighting the GP full-time, I do have to keep an eye out for it. In this sense, I’m not at all cured, and don’t know if I ever will be.
I will say this, though: I don’t go through life in pain anymore, it’s rare I get nauseous, and it’s rare I even get heartburn, so yes, things got better.
GP is still a very misunderstood, multifactorial condition, so I can’t with any certainty say that you’ll get better or whatnot. But keeping your stomach happy by being very strict with your diet and your emotions, and taking medications when necessary, is what has helped me improve.
Best of luck.
I was diagnosed with gastroparesis when I was 15 and I am now 16. But I have suffered from ulcers, and acid reflux since I was 9! I now have an ulcer and gastroparesis at the same time and have developed hypoglycemia due to it. I can actually feel my food digest ( if it does) its extremely painful and wierd. The doctor didn’t believe me till I had the gasfteic emptying test. I couldn’t see the screen buut was able to tell them when the food had traveled and when my stomach actually moved and it scared the hell out of the nurse because I was able to tell her. Having a nutrition drink for breakfast before maybe having another small breakfast in a dew hours, helps the stomach slowly wake up and work better through out the day.. I basically live off of those and smoothies, and soft foods other wise I will get extremely sick even in the hospital. Over time I have learned what I can eat and digest easily and what I can’t. Although I am usually under weight I.have learned how to keep a better diet. They tried me on medications but I’m either allergic or don’t respond so I’m all on my own using diet and exercise. Becoming vegetarian helps, the stomach for most of all people with this have a hard time digesting meat unless it is very lean. I hope you get better.
HI ALL
HAVE BEEN READING YOUR POSTS.
SORRY YOU ARE ALL SUFFERING, BUT NICE TO KNOW I AM NOT ALONE IN MY SYMPTOMS.
I HAD A BORDERLINE HIGH NORMAL RESULT FOUR YEARS AGO WITH GES.
I WAS INFORMED THAT I PROBABLY HAVE DELAYED GASTRIC EMPTYING AND WAS STARTED ON A PROKINETIC AND ANTIEMETICS WHICH DID NOT HELP WITH THE DAILY NAUSEA (MY MAIN SYMPTOM). THIS FOLLOWED A MISCARRIAGE AND INGESTION OF THREE WEEKS WORTH OF NUROFEN PLUS ON A DAILY BASIS IN EXCESS AFTER A VERY TRAUMATIC DENTAL EXTRACTION AND DEVELOPMENT OF A DRY SOCKET.
A NATUROPATH STARTED ME ON GUT, LIVER, HORMONAL TREATMENTS, AND AFTER THREE MONTHS, MY DIGESTIVE DISTRESS STARTED TO LIFT.
A REPEAT GES THREE MONTHS AFTER I ABANDONED THE MEDICAL SHIP WAS NORMAL
I HAD BEEN WELL FOR FOUR YEARS. SO I DISMISSED THE IDEA OF GP.
I INJURED MY SHOULDER IN FEB, AND STARTED TAKING NUROFEN PLUS AGAIN. IT BECAME A DAILY HABIT, AND WAS TAKING IN EXCESS OF THE RECOMMENDED DOSE.
JUNE 23 2012, THE NAUSEA RETURNED. STARTED MYSELF ON THE NATUROPATHIC REGIME THAT GAVE ME BACK MY LIFE. DIDNT WORK.
IN SHORT, I HAVE DONE THE FOLLOWING..
NORMAL GASTROSCOPE
NORMAL GES
NORMAL HIDA SCAN
NORMAL ABDO AND PELVIC CT SCAN
NORMAL ABDO ULTRASOUND, EXCEPT FOR SCARRING ON RIGHT KIDNEY INDICATIVE OF PREVIOUS URINARY TRACT INFECTIONS
LOW IDODINE
RAISED URINARY AND FECAL PORPHYRINS (PORPHYRIA RULED OUT)
RAISED DS DNA (SUGGESTIVE OF LUPUS, BUT ACTIVE DISEASE RULED OUT)
COPPER TOXICITY ON HAIR ANALYSIS (CURRENTLY BEING TREATED FOR THIS)
NORMALISED THYROID ANTIBODIES (PREVIOUSLY SUGGESTIVE OF HASHIMOTOS)
LOWERED GABA,SEROTONIN,DOPAMINE, NORADRENALIN,NORADRENALIN/ADRENALIN RATIO
VIT D DEFICIENCY
VIRTUALLY NO TISSUE POTASSIUM, HENCE ADRENA FATIGUE
A GI PROFILE GREW HIGH MORGANELLA MORGANII AND CLOSTRIDIA SP, WAS INDICATIVE OF BILIARY/PANCREATIC INSUFFICIENCY
CURRENTLY THOUGHT TO BE ESTROGEN DOMINANT
I WOULD APPRECIATE SOME POSITIVE INFORMED COMMENTS..
IM REALLY DOWN ABOUT THE WAY IM FEELING..
I CANT BELIEVE IVE BEEN THROUGH ALL OF THIS, FOUGHT IT OFF, AND ITS BACK..
I DONT HAVE A FIRM DIAGNOSIS, OTHER THAN IDIOPATHIC CHRONIC NAUSEA.
THAT REALLY SUCKS..I DONT WANT GP, BUT I DO WANT TO KNOW WHATS GOING ON WITH MY BODY TO CAUSE ME TO FEEL SO HORRIBLE FOR SO LONG.
DOES ANYONE KNOW HOW SPECIFICIALLY NUROFEN PLUS CAUSES ISSUES WITH THE GUTS NEUROTRANSMITTERS ETC? ANY IDEAS? SOMETHING I DID FOUR YEARS AGO WORKED,AND I HAD MY HEALTH BACK COMPLETELY. SINCE NUROFEN PLUS WAS THE ONE THING I DID BACK THEN THAT I DID AGAIN THIS TIME AROUND, I SUSPECT THIS IS THE CULPRIT..BUT HAVING PROBLEMS FINDING INFO ON HOW IT CAUSES HAVOC WITH THE GUT/AUTONOMIC NERVOUS SYSTEM. PLEASE HELP THANKS 🙁
I know you wrote this many years ago, and I hope you have either recovered from this or have found a way to control it! I found this post because I too have it “borderline.” and it’s a bit scary but I don’t feel I can join any support groups because most of them have it on a much larger scale and I’ll feel like I don’t have any right to be worried when their issues are much larger than my own. But I still need support and answers. So, anyway, I found this and hopefully you are on the road to recovery, long since have, or are living with it well!
WOW your story is eerily similar to my 16yr daughter … she had her gallbladder out after Hiida also .Chronic nausea, indigestion, pain that radiates..etc… She was diagnosed as borderline . She also has a Hystocytosis response .. and possible reynauds ..
Yikes! I don’t think anyone mentioned Reynaud’s or Histiocytosis in my case. Best of luck to your daughter. I wish her all the best.