If it's not IBS-D what is it?
December 4, 2017 1:24 AM   Subscribe

After getting a really bad case of food poisoning about four years ago I found that I had continuing GI issues that still aren't resolved. I've been to 5 different doctors (2 GI specialists) and they keep telling me it's IBS-D but one of the core symptoms of IBS is pain and bloating -- a symptom I lack entirely. (TMI details below the fold!)

New insurance, new doctor, and hopefully a new diagnosis that fits my symptoms better.

Basically, after the food poisoning (diagnosed as garden variety gastritis at the time) got better I found that sporadically I would get sick go my stomach and have to find a bathroom RIGHT NOW, often (but not always) followed by a bout of diarrhea. This happened at least once a week, sometimes nearly every day lasting several hours.

I feel like my symptoms very closely match those of this question from 2016 only I still have my gallbladder.

Often, (but not always) the nausea leading up to the diarrhea is accompanied by a feeling of dizziness and disassociation (feeling very light-headed and fuzzy) that tends to go away after the bowel movement. These symptoms most often start when I'm eating or after eating, but they also happen pretty much any old time and particularly when I'm feeling nervous like before a presentation, when I'm on the bus with no easy access to a bathroom, or before I head out to work. Taking Immodium ahead of time helps, sort of, but doesn't totally fix the intense feeling of urgency or dizzyness.

I was diagnosed with IBS-D, but I've never had any pain symptoms (or gas or bloating or heartburn) and my understanding is that pain is one of the key symptoms of IBS diagnosis.

I underwent a ton of tests, a sonogram, and allergy testing before the IBS diagnosis. I tried a FODMAP elimination diet for about 4 weeks, but found no improvement in symptoms and so far haven't found that any particular foods (except very greasy fatty foods like brisket) influence my symptoms. Eventually one of the GI specialists wrote me a prescription for an SSRI which helped a lot. I've been taking the SSRI for about 2 years now at a very low dose, and haven't had anything near the symptom severity I had before. After recent some big life changes I'm starting to have symptoms almost every day and it's making it really difficult for me to enjoy life and do my job.

If it's not IBS what else could it be? I would like to have some potential alternatives at hand when I talk to my new doctor so that I can self-advocate for better treatment.
posted by anonymous to Health & Fitness (17 answers total) 2 users marked this as a favorite
I'm sorry to say that there might not be a diagnosis that fits any better. IBS tends to be a catch-all when gut issues don't fit other categories. "So, to conclude - what we don’t know about the gut microbiome and its contribution to health and disease is a lot more than what we do know." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4191858/

But even without a diagnosis, symptoms can be treated. When you talk to your new doctor, maybe focus just on describing the symptoms you have (as you've done here), and asking just for treatment, not a diagnosis.

A few OTC ideas that may help, and that do have some small-scale research behind them: a fiber supplement that is 100% psyllium husks (start dosage at 1/4 of what is recommended, then gradually increase to recommended dose, to minimize potential for gas), enteric-coated peppermint oil capsules, and activated charcoal tablets (be very careful about when you take charcoal because it works by adsorbing things, including medications and nutrients that may be in your gut).
posted by Former Congressional Representative Lenny Lemming at 3:49 AM on December 4, 2017 [2 favorites]

Having symptoms that improved dramatically with SSRI treatment says to me that the most likely diagnosis is IBS, or else something in the "functional GI disorders" family (of which IBS is the most common). Importantly, nailing down the exact diagnosis with stuff like this does not really change the treatment algorithm. It's all at the margins of what modern medicine understands; we know a bunch of things that seem to work, but we don't really know why, and it's really hard to predict who will respond to which treatments.

I think if a low dose of an SSRI was very beneficial to you in the past and your current symptoms are increased in the setting of recent life stressors, a trial of increasing the dose of your SSRI would be a really good idea (I am not your doctor). That is the treatment choice I would advocate for at your appointment.
posted by telegraph at 4:00 AM on December 4, 2017 [4 favorites]

Consider being tested for food allergies as well. I didn't think I had any allergies either, and went to the allergist basically as a last ditch effort, but it was a real turning point for me. It turns out that I am quite allergic to seeds and coconut, including the oil, which shows up in everything (sunflower seed oil, safflower oil, flaxseed oil, etc.). It would have been very difficult to figure that out on my own, even with careful monitoring in a food journal. I didn't have any of these allergies as a kid, they emerged in my mid-30's.
posted by backwards compatible at 4:29 AM on December 4, 2017 [1 favorite]

Another addition - peppermint is great for the tummy, but remember that mint is a trigger for heartburn, if you ever have that. Licorice or ginger would be better if you have any tendency in that direction.
posted by backwards compatible at 4:33 AM on December 4, 2017

Did you have to take antibiotics for the food poisoning? If so could be caused by gut bacteria imbalance. There are probiotics available, and more extreme cases have been successfully treated with fecal transplants.

Of course it’s also possible the food poisoning was entirely coincidental, or maybe even a consequence of what ever gut issues were beginning to manifest already.
posted by nat at 5:59 AM on December 4, 2017 [2 favorites]

Did you get checked for parasites? I had a one, and it caused similar problems. After successful treatment, I still have gut issues that have been diagnosed as IBS. I also take a low dose SSRI which is a miracle as far as I'm concerned, and probiotics. I think they help.
posted by Valancy Rachel at 7:09 AM on December 4, 2017 [1 favorite]

Have you had a colonoscopy? Your symptoms sound very much like my day to day experience of ulcerative colitis when I'm not quite flaring but not entirely in remission.
posted by janey47 at 7:30 AM on December 4, 2017 [2 favorites]

IBS seems as much a descriptor as a specific diagnosis. When I had severe food poisoning, it took a couple years for my intestinal tract to return to what felt normal to me. I surmise that my gut bacteria got wiped out/ dramatically changed by several days of diarrhea and vomiting. A low-key response is to eat foods that benefit your microbiome - fresh sauerkraut, kimchi, kefir and yogurt, fresh pickles. Fermented foods are popular right now; you're likely to find fresh fermented foods locally. You could also try probiotics. These foods are safe, and this approach has no harmful side effects, and can be tried alongside other efforts.
posted by theora55 at 8:12 AM on December 4, 2017

I had ongoing gut issues and was diagnosed with IBS-D for almost a decade. In my experience, I found that I needed to repopulate my gut with healthy bacteria. This means incorporating probiotics and prebiotics into my diet. I don't buy anything specialized because it's ridiculously overpriced and ineffective compared to naturally occurring probiotics in fermented food, which I make at home. Much better results for far less money. This is how I learned.

I healed my gut in a matter of weeks by incorporating macrobiotic foods into my diet weekly, plus daily intake of kefir. The kefir always resolves any GI issues for me. I also underwent testing for allergies and found that sulfur can be an issue, so YMMV in terms of whether you have allergies or not.

I'd also recommend "The Good Gut" by Justin and Erica Sonnenburg.
posted by onecircleaday at 8:39 AM on December 4, 2017 [2 favorites]

I had similar symptoms after a very stressful period in my life combined with using a lot of ibuprofen for tension headaches that seemed to affect my gut lining - I couldn't eat sushi, nuts, a lot of vegetables were trouble, my stomach was just not happy and not working the same. I also went on an SSRI which helped a bit. The big change for me was resolving to the best that I could the major stressor affecting me, finding out the triggers and avoiding them long enough along for my gut to heal with probiotics and good fibre and healing foods. Stress management is key because right now you have a link between stomach feeling upset and I'm guessing anxious feelings and vice versa. Once your tummy is settled down that will get better with time.

Years later things are much better but I have found caffeine, nuts, chocolate, alcohol, and greasy foods are things I continue to have to be careful with but it's nothing like before. Yoga and learning how to breath better (3-part breathing, diaphragmatic breathing) helped me a lot. Kefir is also helpful for me.
posted by lafemma at 9:50 AM on December 4, 2017 [1 favorite]

I will add to the kefir/fermented foods chorus.

Also, even if you are skinny you may have thyroid issues, so it may be worth a test if you still have unexplained symptoms.
posted by typecloud at 10:31 AM on December 4, 2017

Serotonin signaling is hugely important for intestinal motility, for what it's worth. There are also antispasmodic drugs that help people.

Pro/prebiotics can be hit or miss. Not all fermented foods, fiber supplements, and probiotics are the same and people have really idiosyncratic reactions to them (including making symptoms worse)... just so you're forewarned. Commercial probiotics are also all over the place in terms of what they actually contain since they are virtually unregulated (sigh) and different strains of the "same" bacteria can do radically different things (compare normal E. coli with EHEC!).

That said, many people do get help from supplements like FiberCon or psyllium husk, and some people also find that calcium supplementation helps a lot. There is maybe some risk associated with long term calcium supplementation but I don't think it's anything crazy (IANAD).

The low FODMAP diet is potentially very restrictive and may not be great for your long term health since it is so low fiber, even if it does reduce your symptoms. If you've already tried it once I don't think there's a lot of point in going down that road again.
posted by en forme de poire at 10:34 AM on December 4, 2017

Given that the SSRI helped you: the #1 thing that has helped me is getting a prescription for a benzodiazepene. I know people are like OH MY GOD YOU'LL BECOME AN ADDICT but I've been on it for 10 years and I'm fine. I just take it (plus Imodium) when I anticipate a stressful situation. Before said stressful situation, I also don't consume ANY dairy, carbonated beverages, or anything vaguely spicy. For example, in the 24 hours before a job interview I'll literally only eat stuff like bananas, rice and bread.

I'm not suggesting drinking, but do you feel better when you do? If so, that tells me it's probably not what you're eating, it's stress. Meds can help.
posted by AFABulous at 10:53 AM on December 4, 2017

In the question you linked, the OP says "I know my anxiety really stands out here, and I am a more anxious person than most (and in therapy for it). But it's the symptoms that really drive the anxiety in these cases."

I'm surprised none of the answers mentioned the catch 22; the embarrassment/anxiety of past incidents drives the anxiety of future incidents, which increases their likelihood, reinforcing the cycle ad infinitum. Maybe something happened on a bus or other place where you couldn't get to the bathroom in time, thus you're afraid every time you're in a similar place that it will happen again. If this is what's going on, the cycle needs to be broken. I mentioned medication above, but that was after I'd tried meditation, deep breathing and other relaxation techniques. Maybe those will work for you even though they weren't enough for me on their own. Another thing that helps a lot to break the cycle is splashing my face in very cold water, or putting a cold rag on my face.
posted by AFABulous at 11:18 AM on December 4, 2017

Yes this also sounds similar to my lymphocytic colitis when it's not raging . Consider getting a colonoscopy, if you haven't had one, they can do a biopsy.
posted by smoke at 11:58 AM on December 4, 2017 [2 favorites]

If you haven't had a colonoscopy you should to check for colitis. My husband went through a lot of wrong diagnoses before finally being hospitalized by it. Also, I don't know if FODMAP includes it offhand, but have you tried eliminating dairy? I had bowel problems for over a year before finally realizing I'd become lactose intolerant. The sudden need to go while eating sounds like what happens sometimes when I have dairy.
posted by threeturtles at 8:58 PM on December 4, 2017

Can you e-mail a mod with an update about what tests exactly you've taken? I agree that if you haven't had a colonoscopy you should probably ask about one.
posted by en forme de poire at 8:56 AM on December 5, 2017

« Older What's going on with my boobs?   |   Is ICE checking phones of non-citizens at the... Newer »
This thread is closed to new comments.