7 Things No One Tells You About Living with a Stomach Condition

About two and a half years ago, I was diagnosed by a GI Doctor with Irritable Bowel Syndrome.  Irritable Bowel, or IBS (as I will lovely refer to it for the rest of this article) is basically the medical term for what you’ve got once they’ve ruled out all the other really scary and serious stuff that could be wrong with you, but it’s still quite apparent that your digestive tract is mildly pissed at you most of the time.  This is determined by many tests, trials (and errors) with food, and boughts of forcibly ejecting the contents of your stomach (I call this ‘fro-ups if I have to talk about it in polite company), internal discomfort, and what I like to refer to as the “super poops.”  It’s a bit of a road to get there, but it’s what you end up with once the doc is sure you don’t have any of the other stuff.

In the interest of full disclosure, let me just say that I consider myself lucky.  If you have to have a stomach condition, IBS is the one you want.  You don’t get the crippling pain of Crohn’s Disease or Diverticulitis, and you don’t get the diet restrictions of either of those and some of the others.  This was particularly important to me as I love food.  I was literally, and I do mean literally, praying to God to spare me while they were running the blood test to determine if I had Celiac disease or not, because a life without bread is one to me that barely seems worth living.  So IBS is the best case scenario.  I can generally eat what I want (within reason) and usually don’t have serious pain.  I’ve never ended up in the hospital due to my condition.  So in the realm of stomach issues, it can certainly be concluded that I am one of the fortunate ones.

That being said, there are simply things nobody explains to you beforehand about what it’s like to live with said stomach condition.  Things like…

#7.  You Will Monitor Your Own Bowel Movements as Closely as a Mother Does with Her Firstborn Child

My younger sister had her first baby a little over a year ago, so I know what I’m talking about with this one.  On more than one occasion, I have listened to my sister and her husband, people who are both educated and have successful careers, talk about poop and all its many possible forms, at length.  And it is with great sadness that I inform you I must now pay as much attention to my own feces as those two do with my adorable yet poopy little niece.

Have you ever not pooped for five days or more?  Because that is often my Tuesday.  And that’s the better end of the deal.  With IBS, you can ratchet back and forth between being blocked up tighter than Atlanta’s highways in an ice storm, and having the aforementioned “super poops” with no end in sight.  I regularly carry Imodium around with me.  That’s just normal.  And when I’m not doing that, I’m often calculating how much longer I can wait for the fiber and other bowel-friendly products I consume to catch up, before biting the bullet and taking milk of magnesia.  Because if I don’t make that call, my body will do it for me, and if it gets to my bowels before I can, then I not only get a healthy bought of “super poops” as a result, but I get a lot of pain and nausea that come with it (free of charge!) 

My GI doctor reassured me that I could take milk of magnesia as often as I need to, and I didn’t need to “worry” about it hurting me.  What he doesn’t understand is, I don’t “worry” about taking too much; I worry about every time I have to force myself to swallow stuff that tastes like stale mint or cherry flavored chalk powder, (my throat is clenching up just thinking of it.)  It doesn’t matter how it’s flavored. It all tastes like death.  But I do it, to avoid my body’s even worse version of “Full Inventory Liquidation – Everything Must Go!”

I have developed euphemisms just to talk about what’s going on with my pooping for the day without completely grossing myself out, or my husband, when he’s kind and brave enough to ask.  We affectionately borrowed the phrase “making bears” from one of his old co-workers, and I leave you to imagine on your own what koala bears, bear cubs, and a grizzly bear attack all mean.  (Hint: koalas are surprisingly mean for their size, bear cubs are little but not entirely harmless, and a grizzly bear attack is something you’re not always sure you’re glad you survived.)

Yes, nothing makes a woman feel sexy like having to constantly monitor and talk about her own poo.

#6.  The Doctors Involved Often Have No Sense of Urgency Regarding Your Condition

I have a good friend whose husband has one of the much worse stomach conditions.  One of the kind that involves inflammation, severe pain, weight loss, and jaunts to the hospital. When he first started having issues it took his family doctor 4 months to get him seen by a GI doctor.  Then, when he needed to go back in for a flare up, the GI doctor said they couldn’t schedule him for another 2 months.  And the first ER trip his stomach condition forced him to make, he was kept waiting 7 hours before he was finally seen.

I don’t know if there is any data available on average wait times for people suffering from stomach ailments, but I would guess that this is neither unusual, nor a good idea for those doing the actual suffering.  Why, you ask?  Well, while this poor young man was waiting just to be looked at, he lost about 20 pounds and could eat only white foods.  And this is 20 pounds from a guy who was a healthy weight when the whole thing started.  He did not have 20 pounds to lose.

And this is in America!  Our motto is basically “thank goodness we don’t have to wait forever and a day for medical treatment like those poor schmucks in Canada.”  Land of the “don’t take our guns because we’d rather shoot ourselves in the foot than wait for medical services, which means we’re” free.  We’re proud of our privatized medical system.  Socialized medicine is for people who don’t mind waiting!

So you can imagine my shock in discovering that if you have a stomach condition, you are pretty low on the “the doctor will see you now” totem pole.

Look, I get it.  It’s not a heart problem.  We’re not in danger of immediate death.  But I don’t think that the loss of enough weight that puts you in the “no longer a healthy human being” category is acceptable either.  My insurance company is certainly letting me foot enough of this bill that WAITING for that long just doesn’t seem like what I’m paying for.

My own recent experiences were similar.  The first time after I’d seen my GI doctor, I was taking a two week trip to Europe with my husband.  So I wanted to have a follow-up with my doctor before I left to discuss what was working, and what kind of regimen I should stick to while overseas, along with getting a note that said I needed to carry the amount of meds I was taking with me.  I called several times and couldn’t even get the courtesy of a call back.  When I finally got someone to pick up the phone, they refused to commit to a date before my trip (this was a couple months in advance, mind you.)  I had to get my husband to call and basically force them to give me an appointment, so I could ensure that I would be able to go off to Europe and do crazy things like “eat food” without any trouble.  And after explaining this several times to the receptionist and the nurse, when I was finally in front of the doctor and had to explain yet again why I was there, he gave me a blank look and literally asked me, “so what is it you want me to do?”

The second time I learned about the joy of waiting was even better.  In a story I’ll get into more later, I basically learned that my gall bladder was trying to kill me.  From the time of my first gall bladder attack, it took an entire month just to get the cursory scans run and get scheduled to see a surgeon, (which was only accomplished by again employing my husband to use his charm and persistence to get me an appointment) and then it took almost another month to get the gall bladder removal surgery scheduled.  That meant I was on a no-to-low fat diet for almost 2 months, and this is not something I can recommend unless, again, you are personally trying to lose weight.  (And even then, seriously, don’t do it.  It’s not good for you.)  I lost about 8 pounds while waiting for the ability to eat food that actually had any significant amount of fat in it again.  I also tend to run a bit on the thin side, (my family used to lovingly refer to me as a “stick”, and my Middle School basketball pictures can attest to the fact that there wasn’t much to me other than arms and legs.)  I gained a few pounds once I got married, but for the first few years, during my yearly appointment with the lady doctor, she would question me closely about my eating habits and my mental well-being, trying to make sure I didn’t have some undiagnosed eating disorder.  I didn’t, but I could understand why she suspected me, all the same.  So when I lost 8 pounds I couldn’t exactly afford to lose, I was worried people were going to start calling me “stick” again.

Which leads me to…

#5 Your Doctor Won’t Give You Details About What You’re Putting into Your Body (Unless You Specifically Ask)

Let me tell you a bit about my regimen, because I can’t imagine anything more exciting than to discuss what I have to ingest on a daily basis.  In order to currently keep my IBS under control, assuming all other factors are normal and it’s a “good day” I take the following –

~ a prescription antacid to keep the pain and discomfort from an imbalance at bay (I have to take this in the morning, at least 20 minutes before I eat any food)

~ a probiotic with “live cultures” to keep the balance of good bacteria in my favor (more on that later)

~ another probiotic that allows me to digest milk (more on that later, too)

~ a heaping teaspoon of psyllium husk fiber mixed in with at least 8 ounces of water, and chugged all at once before it clogs up and becomes undrinkable, (sometimes I pretend I’m drinking an Irish car bomb instead, but my imagination must be broke, because it doesn’t really help.)  I take this charming concoction twice on days where I eat a lot of cheese.

If I do all that and don’t miss anything, there is a very good chance I won’t have any serious issues (most days.)  It’s fun to coordinate, because you can’t take fiber within more than an hour and a half of taking your medicine, and you can’t take medicine within 2 hours of taking your fiber, because fiber is the parasite of the supplement world, and gloms on to anything else that gets near it, masking its effectiveness.

I am a joy to travel with, as many little bottles, packets, and pills that I have to have handy.

Since I’ve mentioned the fiber, now, I want to tell you a little story about the discovery I made, a year after I had been diligently taking the fiber the doctor give me.

As most of you probably know, doctors get all sorts of free samples of medicines and the like to hand out and get their patients cheerfully addicted to.  My doctor gave me some handy packets of a big, name-brand fiber, and I took it, without question.

I sometimes make the mistake of trusting doctors implicitly, and this time it came back to bite me in the ass.  One day, a year later, I happened to glance at the back of one of my fiber packets (which I had been buying in bulk) when I suddenly noticed an ingredient in my fiber I had failed to realize was there.

It was the dreaded aspartame.

That’s right, I had been putting aspartame into my body, voluntarily, for almost a year.

Now I know the stuff probably isn’t going to kill me.  I understand that the claims to links of cancer and other diseases have been pretty much disproved at this point, but that doesn’t change the fact that I would never choose to put that stuff in my body, if I could help it.  Because the box said “sugar free” on it, I assumed (quite wrongly) that meant it had no sweeteners or sugar of any kind.

Now I am not going to deny that I should have asked what was in it, or could have even looked before a year had gone by, but I, like so many Americans, trusted my doctor, and didn’t even think to wonder about what it was I was ingesting on a regular basis.  Which brings me to my point – if you don’t ask, they won’t tell you.  My GI doctor doesn’t care that I’ve been drinking aspartame for a year.  He just cares about passing on that product that he got for free.

Anyways, I switched to an organic fiber that has ingredients I recognize and is sweetened with beet root (you do have to sweeten fiber with something or it tastes almost as disgusting as the chalky death liquid that is milk of magnesia, and my throat muscles haven’t mastered swallowing bilge everyday without protest) and gave the box of name brand fiber to a diabetic lady I worked with who had a similar regimen and no objections to aspartame.

Unfortunately, I still suffer from another problem, that being…

#4 You Become Obsessed with the Culture of Your Gut

No, I’m not talking about making sure my stomach listens to enough Mozart, or that my colon understands the beauty of chiaroscuro shading.  I’m talking about the colony of bacteria that lives in my gut and whom it has become my full-time job to constantly appease.

As I understand it, everybody has a mixture of bacteria in your gut.  There is good bacteria (or “the home team” as I like to think of them) and bad bacteria (the kind that causes certain diseases and infections if its population swells enough to overpower the “home team.”  Let’s call them “the insurgents” for the sake of this article.)

My new lifetime goal has become making sure “the home team” wins enough of the wars that “the insurgents” don’t turn the battle field (aka my GI tract) into scarred and desolate ground with no hope of regaining its former glory.  This is my mission in life, because if I don’t succeed, I’m in discomfort and I’m probably suffering from the ‘fro ups and the super poops for an indefinite period of time.

I achieve this with the magic that is probiotics.  Basically, little capsules full of beneficial, live micro-organisms that bolster the colonies of what’s already down there and create new, also beneficial hives of happy flora and not-quite-fauna-but-more-likely-bacteria.  In other words, there’s a big tailgate going on every time I eat or get exposed to other kinds of bacteria, and I’m recruiting the tail-gaters to help out “the home team” while sending in subs and the like before everyone grows tired and gets overwhelmed by “the insurgents.”

This is my life now.  Envy me.

Normally, it’s a pretty easy job as long as I keep religiously to my regimen (and I do mean religiously.)  Because if I miss so much as a pill or powder, nevermind get off my schedule for an entire day, that’s when “the insurgents” pull out the guns and bombs and possibly chemical weapons, and start causing real havoc.

When you start with probiotics, it usually takes about a month for the new recruits to team up with “the home team” and get down to business.  In the meantime, “the insurgents” keep up their shelling, and shooting, and general causing of death and pain (see note on “super poops”) until the home team finally has enough ammunition to take over the battle ground and attempt to make it a beautiful place where healthy bacteria all want to live.

The good side of this is you don’t have to take Imodium or milk of magnesia every week, and you can live what is almost a normal life.  Probiotics even have the added benefit of sometimes bolstering your immune system.  I don’t get half the colds and such my husband does during the year, even though I’m exposed to most of the same stuff that he is.

The other fun part is that after 6 or so months, “the insurgents” have figured out all your current probiotic’s tricks and battle strategies, and start breaking through the defenses, and so you have to switch your probiotic to a different one in order to throw them off and retake the battle ground.

But that is at least somewhat manageable.  The real problem comes when you miss your medicine, or worse, when ”the insurgents” come up with a weapon so good, it leaves “the home team” staggering and wondering how they can find the will to go on.

Like the time I got the stomach virus.

My family had been passing it around for awhile and I thought I had missed it.  But then, a few days before Christmas, it hit me, and it hit me hard.

I won’t gross you out too much with the details, but I will tell you that it was the sickest I have ever remembered being, and I lost something to the effect of 9 pounds in water weight.  (I was quite a “stick” when it was all said and done.)  I probably should have gone to the hospital, but I didn’t, and managed not to get so dehydrated I died, as I slowly started gaining back my water weight.

The problem with getting something like a stomach virus is that, aside from making you completely miserable while it’s going on, it completely decimates the culture in your stomach.

That’s right. All those careful months I had spent lovingly cultivating those happy little organisms in my tum were wiped out in one 24 hour period, and I was starting from scratch.  I had the bare minimum of guys required for “the home team” to even continue playing without having to forfeit.

Which means I not only had an angry gut, but I got a cold as soon as I recovered from the stomach virus and was a coughing, snotty mess during Christmas, (my poor husband had to cook all the food and do all the cleaning since we had brilliantly decided to host my family that year) but that wasn’t even the worst part (at least not according to me.  You might want to ask my husband his opinion about Christmas when he has a glass of good Scotch in his hand.)  No, the worst part was that it took me 2 months after that to get “the home team” back up to snuff enough that they could even begin to compete against “the insurgents” again, which means for two months I didn’t feel very good most days.

And that is my life, but it still doesn’t address the fact that…

#3.  There Are Other Surprising Things That Effect Your Condition, Even When All Other Factors Are Optimal

I am one of the many women on birth control.  I’m not ashamed of that, and I’m not thrilled at the political bru-ha-ha that surrounds it, because it’s one of the best things that has ever happened to my body.  The weeks I take my birth control, my body functions fairly well, I feel fairly good, and I’m not surprised with a baby I’m not ready to grow inside my cranky body.  It’s great.  It’s especially great for my stomach condition, because while I am on my birth control and all other factors remain normal, my stomach condition gives me nary a peep.

But the week I am off my birth control, weird things happen.

My stomach condition decides that this is a good time to act up.  I get acid-indigestiony pain along with my cramps and bloating (joy of joys) and it generally doesn’t settle back down until I’m on the birth control once again.

My doctors find this “interesting” and “strange,” but they don’t have a clue why this happens.

I also happen to have a sinus condition (vasomotor rhinitis) along with grass allergies, which gives me sinus headaches ranging from annoying to “someone please stop my entire face and neck from hurting before I scream,” and which also decides to act up during my week off, as it were, (and is possibly the subject for another article and another time.)

Nothing is more fun than when my stomach condition and my sinus condition team up.  It’s like “the insurgents” find “religious extremists” who hate each other, but basically have the same goal, and they run amuck together.  Thankfully, I know this at least will end when the week is over, and I’m back on the no-babies meds.

The jury is still out on why this happens.  But anytime it wants to stop would be fine with me, because there is literally nothing I can do but medicate myself and wait for it to be over.

I also have to make sure I eat at regular intervals (every 4 hours or so) because if I don’t send a steady stream of food down there, my stomach decides to start chewing on whatever is already down there.  Since the answer to this is “itself” and that answer hurts quite a bit, I work hard to avoid this.  Times when not even snack sized foods are readily available are tough for me.

I had two rounds of gall bladder attacks two years apart, and part of the reason they didn’t take it out the first time, or right away the second time was because some of my symptoms were gall bladder, but some of them weren’t.  And you know why I think that is?  Because I’m pretty certain that things like gall bladder attacks can trigger my IBS.  So I’m showing conflicting symptoms, because my gall bladder decided to team up with my IBS and go for the gold.  They can work together to make me miserable and make doctors uncertain what’s really going on.

My GI doctor once told me that even though all the stuff I was going through was stressful, I had to try not to get upset about it.  Why is that you say?  Because stress can also trigger bad IBS episodes.  So I have to remember to not get upset about the very upsetting pain and spastic colon issues I’m experiencing, because that actually might make it even worse.

But now I bet you’re wondering what it’s like to hold down a 9-5 type job (which I do) while simultaneously managing this condition.  Or go on vacation.  Well, the one thing I can tell you is that…

#2.  You Plan Your Entire Day Around the Bathroom

Even on a good day, I probably go to the bathroom on average of 15 or so times.  Most of this is usually #1, and so it’s not too worrying.  See, in order to keep my tummy fairly happy, I have to drink a lot of liquids.  My morning coffee is almost essential if #2 is even going to be a hope, and after that I have to drink lots of fluids just to keep everything generally appeased.  But the best part is when I chug my daily fiber with the minimum of 8 ounces of water mixed in.  I’m not sure how this works for everyone, but for me, there is always a point where that 8 ounces or more of liquid suddenly drops into my bladder with the force of Shamoo competing in a cannonball contest, and suddenly not running immediately to the bathroom is not an option, unless I want to continue my day with noticeably damp pants.  After the initial “release” as it were, I go 2-5 times more over the next hour until all that chugged liquid is out.

And I won’t even talk about “bad days” where I forced myself to take milk of magnesia the night before to flush everything out, (pun intended) or when I’m being subjected to a different round of my dear old friend “the super poops.”

When my boss (who is an amazingly understanding man) hired me for my current position, he asked me if there was anything else he needed to know about my ability to do the job.  Since he had been involved during my first bought of gall bladder and GI issues, and he knew about my stomach condition, I felt it important to remind him that the IBS meant I had to be “up and down” from my desk a lot.  Thankfully, he said this wasn’t an issue, but think of all the other jobs and employers out there in the wide world who wouldn’t share this attitude.

Despite his understanding, I still feel responsible to compensate for my bathroom time.  Because of this, I don’t take the two 15 minute breaks I’m entitled to, but count all the time I’m forced to spend on the potty towards them.  And I don’t leave until all my work is done, even if that means my IBS forces me to stay another 15-30 minutes to make sure that’s done.  It’s rare, but it happens, and I have a reputation to keep up despite my stomach condition’s best efforts to sabotage that.

Vacations and other outings can be a nightmare, therefore, because I always have to ascertain where the bathroom is located, make sure I can get to it, and never, EVER take my fiber, if I don’t know that there will be a bathroom in easy reach when that first liquid payload gets delivered.  This can make my life very exciting.

Thankfully, my husband is practically a Saint, and doesn’t get fussed about this or tease me nearly as much as he might.

Which brings me to the best part about having a stomach condition…

# 1.  Your Perspective on Things (Like Surgery and What You Can Eat) Makes a Surprising Shift

Let me tell you a story.

I’ve had stomach troubles since my early twenties, (mostly acid and mild discomfort, with the occasional up-all-night episodes) but the real fun started two and a half years ago, right before I turned 29.  I started getting some serious pain, and regular bouts of the ‘fro ups and “super poops.”  My family doctor tried for awhile to diagnose me, then sent me to the GI doctor when he had no success.  The GI doctor ran some standard tests, but the only thing that came up was that I was told I had sludge in my gall bladder (or “Smooze” as I liked to think of it, since I grew up on the My Little Pony movie.)  They did a gall bladder function test, but that one came back good, so they told me I didn’t need to worry about my gall bladder anymore.

I was not convinced.  They said there was sludge in there, but I’m not supposed to worry about sludge?  I mean the word sludge just sounds creepy and disgusting and very worrisome.  Say it out loud.  SLUUUUUUUUUUUUUDGE.  Is that a comforting word to you?

Well, the doctor decided I had IBS, and I started my regimen of probiotics and antacids and fiber.  But even at the two month mark I was still getting the occasional bad bought of the old “super poops” and my doctor had no idea why.  Eventually, I started writing down everything I ate and noticed every single night I had another bad attack, I had consumed a meal very high in dairy that same evening.  So as an experiment I tried taking an additional probiotic that contacted lactase in it (the enzyme that allows you to digest milk.)  From then on, I had no boughts of “super poops.”  Problem solved!  I didn’t even bother to tell my doctor about it, I was just that relieved to have a routine where everything worked again, and didn’t want him to try and tell me otherwise.

Then about two months ago after dinner, I got so nauseous I couldn’t even sleep or lay down.  My old friend S. Poops came back for a visit and on top of that, I had this crippling pain behind my right shoulder blade that would have kept me from sleeping if the nausea hadn’t already been doing such a good job on that one.

The next day I went to work feeling hung over, and thinking I had just had a bad night.  I was super careful with everything I ate that day, and then attempted to have some mild Indian food that night (don’t laugh, I eat Indian food all the time, and it never gives me issues like this, so to me that was comfort food.)

And I got super sick again.  Same nausea, couldn’t lay down, same horrible pain behind my right shoulder blade.

And I KNEW it was my gall bladder.  I just KNEW IT.

It was past Urgent Care hours, so I called my insurance line’s nurse that night and asked her if I should go to the hospital.  I described my symptoms to her, hoping she would agree with me about the time bomb ticking within me, and tell me to go in and have that sucker taken out.

But the nurse wasn’t sure.  She told me to go on a very restrictive low-fat diet, and see my family physician the next day.

My physician said the same thing as the nurse.  Some of my symptoms were gall bladder and some were not.  But I KNEW.  Ever since the sludge, I was convinced that it was only a matter of time before that sucker got me again, and so despite the doctor’s hesitation (I started with the one on the weekend shift at the practice, and he had me follow-up with my family doctor, who has been seeing me since I was 8 years old) I basically told him to please check my gall bladder to make sure it wasn’t the issue.  My doctor, thankfully, agreed.

And sure enough, the ultrasound showed that this time I had sludge AND small stones.  So my doctor referred me to a surgeon.

In the meantime, I was on one of the worst diets ever made for a person who loves food.  No red meat.  No pizza.  Very little dairy.  No fried bread, or donuts, or other pastries.  No joy.  Just salad, lean meats, simple carbs, and fruits.  I ate A LOT of sushi, and it was the only food I never really got sick of.

A month in I got an appointment with the surgeon.  Still stuck on the diet.  A month later I had my gall bladder out and could finally transition back into eating fatty foods again.

And here’s the thing.  I was the happiest, best-natured surgery patient those nurses and doctors at the hospital had ever dealt with, (I probably can’t say authoritatively, but I think it’s a pretty good, educated guess)  Because having to live with that crippling referred pain from my gall bladder behind my right shoulder blade, having nausea so bad I couldn’t sleep, even though I was incredibly exhausted, and having to eat what was essentially rabbit food for TWO months, shifted my perspective so much, that surgery was a walk in the park by comparison.  I was looking FORWARD to it, because it was an end to the pain and to the diet restrictions that caused me to lose 8 pounds.

Understand this.  I WANTED to have surgery.  I DIDN’T CARE that they were going to have to knock me out with anesthesia, put 4 holes in me, and forcibly remove one of my internal organs, (laparoscopy is amazing.)  Because in my mind, holes and short-term pain were still a happy option compared to the alternative of going on the way I was.  I couldn’t get that surgery scheduled fast enough.  On the day of surgery I was smiling and thanking everyone who was involved profusely.  The only part I flinched at was the IV.  Everything else was cake.

Not only that, but the first time I was able to eat pizza again, I almost cried.  The first time I had a bite of porterhouse steak again, I wanted to weep openly.  The first time I ate ice cream again, I danced in my seat.  And the first time I had my husband’s homemade mac & cheese, smothered with cheddar béchamel sauce, and the first morning I had a whole milk cappuccino again, I made noises I’m pretty sure should only come from sex.  It was that good.

It was like I was rediscovering food, was rediscovering joy, and was rediscovering life.  Having something that makes your stomach condition even worse than what you’re used to, changes your perspective enough that you have a very different outlook on life.  An outlook where surgery is the best thing that can happen, and the sight of pepperoni on top of melted cheese brings you to tears.

And that, in a nutshell, is my life.  Gall bladder free, and proud to be.