Help me help my new doctor solve my stomach problems
July 22, 2010 9:04 AM   Subscribe

How do I get a new gastroenterologist to help me really, finally solve this longstanding, chronic problem? (TMI about my digestive system inside)

As far back as I can remember - at least since I was 10 - I have had chronic stomach problems, mostly involving multiple trips to the bathroom. I went to a spate of doctors when I was 10-13 and none could resolve this. Mostly I was told "eat more of this, eat less of that," none of which worked. I had a colonoscopy and got the all-clear there. I was bullied around that age (12) so I was sent to counseling and told it was psychosomatic. I've seen other doctors (general physicians) as an adult and no one will make any suggestions beyond dietary changes. I have an appointment with a real, live gastroenterologist next week and I want to make him understand that this needs to be solved by any means necessary. I spend, no joke, between one and two hours in the bathroom almost every day. Constipation would seem like a blessing from God.

KNOWN TRIGGERS:
- Dairy (lactose intolerance)
- Anxiety (but the problem still exists when I am not anxious)
- Caffeine
- Spicy foods (which I never eat on purpose)
- eating anything at all - I actively try to avoid eating & I am underweight
- being conscious
- seriously this happens every day

THINGS THAT CONTROL SYMPTOMS
- Imodium (but it makes me gassy)
- in combination with anti-anxiety meds
- this is still not foolproof

THINGS I HAVE TRIED:
- more fiber
- less fiber
- more fresh fruits & veggies
- less meat
- no soda
- no coffee
- no dairy products
- no alcohol

POSSIBLY RELEVANT NOTES
- I am 100% not pregnant, and never have been
- just had a physical, all bloodwork comes back clean
- I am in my mid 30s and this has been happening since I was TEN. It's not a virus, bacterial infection, or parasite, I promise you.
- My current tweets complaining of nausea are unrelated.

I am not looking for internet diagnoses so much as I want this doctor to understand this is not some fleeting bout of the flu or as the result of my poor diet.
posted by desjardins to Health & Fitness (28 answers total) 5 users marked this as a favorite
 
So wait, is this a stomach problem or an intestinal problem? Because if it's the latter, it sounds like Irritable Bowel Syndrome.
posted by elsietheeel at 9:14 AM on July 22, 2010


I think if you printed this out and read it to him he would probably understand.

Have you also tried no gluten? If the diarrhea has a peculiar, sewage-like odor to it it may be celiac disease or gluten intolerance.
posted by Electrius at 9:15 AM on July 22, 2010


I'm also confused about the "chronic stomach problems" and 1-2 hours in the bathroom. Are you having trouble pooping or are you really sick to your stomach? What exactly are your symptoms? I guess it really doesn't matter since what you're looking for is how to deal with your upcoming doctor visit. I think it's helpful to write everything down and then bring the written list to the appointment. Explain everything you've done and what the results have been. Being thorough and comprehensive with your symptoms and medical history will definitely help.
posted by otherwordlyglow at 9:23 AM on July 22, 2010


Seconding the fact that this sounds very IBS to me. Having had issues for years with my system, I can tell you that the key to answers for me was pushing, printing out lists like the one you made, and trying doctors until you can finally get one to believe you.
posted by Zophi at 9:24 AM on July 22, 2010


Sounds a bit like IBS to me too. But you can try another colonoscopy to see if it was done when you didn't have any inflammation. IBD goes in cyles of flare up and remission. As a person with IBD, I'd suggest looking at the Specific Carbohydrate Diet. It did wonders for my Crohn's. It seemed extremely restrictive at first, but now I can eat more than I could before. I too used to avoid food, and now I can eat veggies for the first time in years.
posted by gilsonal at 9:25 AM on July 22, 2010


Response by poster: "Intestinal" is a better descriptor then stomach, yes. There is generally no pain or cramping associated with this.
posted by desjardins at 9:29 AM on July 22, 2010


The only thing you can really do is try to communicate to the new gastro that this is affecting your quality of life on a daily basis, as well as your functioning, and you want to do more extensive investigation into the cause and/or symptom management than you previously have done.

If he seems unwilling or as though he's not understanding the full import of what you're telling him, then you need to maybe find a support group or discussion forum for people with IBS or other gut issues in your area, and find out which gastroenterologists people recommend.

If it turns out to be something for which diet is the main treatment, or for which diet is a really important factor (like celiac disease or IBS or IBD), the gastro should ALSO be sending you to a dietitian who specializes in this area. Sending you away with a list of what foods to avoid is not good enough. You need someone who is fully trained in helping people customize their diet to their condition. Your weight loss is a red flag and should be a big concern. A good specialist will work in a team with a dietitian to treat your symptoms.

If you can't find a good doctor to help guide you from the outset, then try a reverse strategy: seek out a RD on your own who deals with gut issues. You will get more individualized help that way, and the RD will know who the good specialists are in your area who can get you a solid diagnosis. Go here tick off the boxes for the specialties you're interested in (digestive disorders, gastro disorders, and maybe celiac disease and food allergies/intolerances.)
posted by Ouisch at 9:31 AM on July 22, 2010


Also, if you find an RD who specializes in both oncology and the digestive stuff, they're also going to have more skills in helping you gain healthy weight.
posted by Ouisch at 9:36 AM on July 22, 2010


I knew someone in college who had all of these symptoms - turned out to be IBS.

I know you've had bad luck with doctors - oh boy, I've been there - but I have faith that when you present a specialist with a detailed list like this and a clear history of how long the problem has been going on and what you've tried to do so far, he'll take you seriously and look into diagnoses beyond "it's something you did/didn't eat." The key is to be as specific as possible and to sound knowledgeable without going over the line into "diagnosed myself on WebMd" territory. I've definitely had bad experiences when doctors misread me as knowing "more" than they did. Did not help a bit. The middle ground of "I'm informed about what's going on in my body and need your expert guidance" is where you get the best results when talking to specialists.

Good luck!
posted by grapefruitmoon at 9:39 AM on July 22, 2010


If you had a colonoscopy that long ago, chances are the big picture in there has changed since and new imaging will help the GI doc get a better idea. There are also blood tests that can be done, and some genetic testing.

My friend's kid is going through similar woes and the amount of diagnostics leveled at him has been epic. Science does GI stuff a lot better these days.
posted by fairytale of los angeles at 9:42 AM on July 22, 2010


Have you ever tried taking a probiotic supplement? I didn't see that on your list. After my gastro diagnosed me with IBS, he recommended a supplement called Flora-Q 2. Really, really, really helped.
posted by rachaelfaith at 9:43 AM on July 22, 2010


As for an endoscopy to rule out Celiac Disease. My blood tests kept coming back normal, it was the upper GI and biopsy that finally caught it.
posted by TooFewShoes at 9:43 AM on July 22, 2010


If you've got a week before your appointment start keeping a very detailed diary of what's going in the front end and what's coming out the back, and how you feel in between. I.E., what you ate, what time you ate it, when you feel sick, what time you had a BM, how would you rate that BM, etc. Give your doc a copy to look over after the appointment so he/she can look for a pattern.

To reiterate what Ouisch said above, if they take thirty seconds and say "Oh yes, it seems you have Irritable Bowel Syndrome" and get up to leave put your foot in front of the door and say "Nuh uh, not good enough." Make sure they stay with you and help you figure out what is irritating your bowels. Referral to a dietitian and a plan for future visits with the gastro is necessary if you are to feel better.
posted by geekchic at 9:45 AM on July 22, 2010 [1 favorite]


Yes, the diagnosis for celiac disease involves a blood screening, but that doesn't always catch it. Biopsy is the gold standard, and you need to continue eating gluten until you're definitively diagnosed.
posted by Ouisch at 9:49 AM on July 22, 2010 [1 favorite]


Thirding IBS. It sounds very much like what you're describing.

I have GERD, which was made worse by gallstones a few years back. This is what happened. Be aggressive. Print out a list. Go over it point by point. Be emphatic. Tell him (or her) that your life is pure hell, and you absolutely must fix this. He must leave no stone unturned, and you are positive your symptoms are not psychosomatic.
posted by zarq at 9:51 AM on July 22, 2010 [1 favorite]


Nthing getting tested for celiac. My dad had IBS until they realized it was celiac disease. He almost died from malnutrition it was so advanced after over twenty years of tests etc. One doctor's casual thought about a then little known disease saved his life.

My niece has it much worse, if she eats gluten at all it's pain and diarrhea. Way too much and she gets leg cramps.
posted by Max Power at 9:52 AM on July 22, 2010


I had these symptoms, along with being persistently nauseated. I now take Losec (prescription-only where I live, but available over the counter as Prilosec in the US) and it's changed my digestive system completely. I feel like a regular person with a normal digestive system. It's actually intended as a heartburn drug and I know you're not complaining of heartburn (neither was I), but as it turned out, once the pumps in my stomach stopped flooding my entire digestive system with acid, I didn't feel sick all the time and I didn't have to spend hours in the bathroom. Mail me for more info/graphic details if you want.
posted by kate blank at 10:09 AM on July 22, 2010


Think about going to a specialist at a really top-notch place like Johns Hopkins or the Mayo Clinic rather than just some doctor.
posted by callmejay at 10:11 AM on July 22, 2010


I saw a gastro who mentioned that anxiety and bowel problems go hand in hand. I see you've already tried addressing that with meds and it helps somewhat. Does a steady regimen of vigorous exercise help either the anxiety, the bowel issues, or both? Because I know it can help with anxiety. If the two are linked, maybe they're linked in that way as well. If you haven't tried it, maybe try it.

Even without celiac, some people's guts just don't react well to refined grains or sugar or related things. Or even not so refined grains. Sounds like you've done various self experimentation with diet, but if you've never cut out sugar, grains, beer, MSG, related stuff, etc. all at once, you might try just veg/meat/other for several days and just see what you see. Might produce nothing useful but couldn't hurt.

Lastly, you may have seen this article recently about a woman with seemingly incurable bowel problems. The doctor used a rare procedure of mixing her husband's stool with some saline and squirting it up her exhaust port. The bacteria from her husband's innards quickly wiped out the ne'er-do-well bacteria in her innards and took over and that was that. You don't have a specific diagnosis of infection and you're not wasting away in a wheelchair, so I imagine this is not indicated, but it couldn't hurt to bring it up with the doctor and talk shop about the various residents of your guts.
posted by Askr at 10:16 AM on July 22, 2010 [2 favorites]


Like Askr mentions, c. diff (clostridium difficile) is a possibility. I believe my gastro tested for it during my colonoscopy. Maybe time for another colonoscopy? I would also look into an upper GI endoscopy. That helped diagnose my hiatal hernia and acid reflux, which certainly didn't help my digestive issues.
posted by rachaelfaith at 10:37 AM on July 22, 2010


I'm surprised no one has mentioned food allergies. That was how my life was until I got allergy tested. And I had to throw a temper tantrum to get the testing done. The doctor wanted to try every other test under the sun first. They kept asking me if I was pregnant. (For 11 months, they asked me if I was pregnant. :P)

And in case you're thinking "But how likely is it that I'm eating the thing I'm allergic to every single day?", here's a partial list of the things they finally determined I'm allergic to:

Dairy (And additionally, a particular protein or enzyme or something found in cheese.)
Soy
Wheat
(These are the big three. They are in everything. Salad dressing, coffee creamer, soup, any kind of dessert, ketchup, vitamins, etc. I could almost everything from scratch.)

Cantaloupe
Watermelon
Almonds
Catfish
Tuna
Blueberries
Mesquite (as in mesquite smoked barbecue)
Broccoli
Cauliflower
Hazelnuts
Most beans
Mold - this means no tea, because tea has mold.

There's more, but honestly, I can't even remember them all most of the time unless I'm offered something and then I think "Oh, yeah, I'm allergic to that." Even now, after having known what I'm allergic to for 10+ years, it's still really hard to make it through a day without eating slipping up somehow. So if no one's tested you yet, I would insist on it.
(And there is a difference between a dairy allergy and a lactose intolerance. You can have one or the other, or both.)
posted by MexicanYenta at 10:47 AM on July 22, 2010


My mom had these exact problems her entire life until she went dairy AND gluten free. Those things happen to be in almost everything so, bleh.

Look into that and get tested for food allergies as other have mentioned.
posted by zephyr_words at 11:13 AM on July 22, 2010


I had the same symptoms for years. I was resigned to it being IBS. Then I started checking ingredients.

Partially hydrogenated oils (trans fats) seemed to be the main culprit for me. They are in everything (well, less so now thanks to new regulations than when I was having problems). So check the labels of the food you're eating. If "partially hydrogentated oil" is an ingredient steer clear of the product and see if things change. It's not enough to just see 0 trans fats on the nutritional info panel when partially hydrogenated oil is listed as an ingredient, because if you eat more than "one serving" it's likely that you're consuming too much. Manufacturers are allowed to put zero trans fats on the nutritional info panel so long as there's only 0.5 g or less per serving in the product. But if you eat more than one serving (and serving size listings are often obsurd) you can see how that can add up over the course of a day. RDA of trans fats is zero! If you must consume it, the FDA says 6 grams/day or less will probably not be enough to do too much damage. It's best to not eat any of it though. Your arteries and heart will thank you.

An allergy to sulfites could also be the culprit. Again, check ingredients. Generally, dried fruit and wine will have sulfites.

Also check to see that you're not consuming too much high fructose corn syrup. That stuff messes up my stomach like nothing else. I haven't had a soda in 9 years.

Since I've cut these things out of my diet I no longer have problems. It also helps to cook more for yourself so you know exactly what you are eating.
posted by wherever, whatever at 12:03 PM on July 22, 2010


Man, it could be a lot of things! I think this is going to be a case where you have to find your perfect diet, and stick to it.

If I were you, I would start off with a really bland diet, and then add back foods and see if they're safe. I think you should start off by going dairy-free and gluten free - stick to meals of chicken, vegetables, and water. For breakfast have a salad with some tuna on it.

Do that for a 3-4 days. Do you feel better? Add back foods then - start with fruit, and so forth, until you find a trigger.

Everyone's body is different - even when you visit a gi doc, it's going to be a matter of trial and error.
posted by unexpected at 12:17 PM on July 22, 2010


You said Imodium helps but it gives you gas. Did you know there is an "Advanced" version of immodium that has gas control built right in?
posted by halfguard at 1:08 PM on July 22, 2010


Did you know there is an "Advanced" version of immodium that has gas control built right in?

Just a note about this. Immodium Multi-Symptom Advanced contains simethicone, which forces gas to exit the body more quickly, but does not treat the production of gas. So it helps with bloating or pain from gas that might be trapped in the digestive tract, but does not make you less gassy. If Immodium gives you gas, you'll still have to deal with that.

My personal experience with it hasn't been great. I've found it's less effective at stopping diarrhea than the regular version. I suspect this is because one of the side effects of simethicone is diarrhea.
posted by zarq at 1:20 PM on July 22, 2010


I've found that it helps doctors understand the relative severity of symptoms if I give them examples of how it affects my work life. (For GI problems, for example, rather than, "I have diarrhea often," use an example from life e.g. "My problem with diarrhea is so frequent that I had to talk to my boss about it often making me late for work.")

It can also be helpful to bring a significant other or relative who can attest to the problems and chime in when you've forgotten something. Doctors find it more difficult to dismiss your concerns when there are two of you in the room.

It might be helpful for you to bring a diet and symptom journal to the doctor. Then if the conversation turns to diet, which it sounds like it inevitably will, you can give the doctor some evidence to consider. Document what you consume each day, and at what time, and the symptoms you experience. If you had time (you said the appt is next week, but maybe for the next visit after that?) you could try some elimination diets and document any changes in symptoms you experience.

In terms of diagnosis, have you considered fructose intolerance? Fructose is in many foods (those containing high-fructose corn syrup, certain fruits more than others, even the vitamin powder Emergen-C).
posted by scrambles at 2:01 PM on July 22, 2010 [1 favorite]


I second the suggestion of going gluten-free... even taking it so far as going completely grain-free. Robb Wolf talks a lot about how his training clients have resolved many autoimmune and intestinal problems by following a Paleo diet. Keep in mind that it's possible to have a serious sensitivity to gluten without testing positive for celiac.
posted by lizifer at 2:49 AM on August 12, 2010


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