GI issues and advocating for care
February 1, 2023 6:07 AM   Subscribe

I've been experiencing GI issues for six months now, with a new change in condition about 9 days ago. Please share your experiences and knowledge of what I should do and what might be going on. Descriptions of BM below the fold.

This past summer my BM changed. I'd always tended more toward constipation but one day, and every day since, my stools were soft and loose (often type 6 on the Bristol Stool Chart).

It was easy at first to attribute the change to my poor diet and stressful living situation. That is, my roommate situation became toxic, I became avoidant, and I stopped using the shared kitchen space in my home. Instead, I lived on takeout and whatever I could snack on in my own space with just a fridge, microwave, and toaster oven. Essentially, I was eating a bean and veggie burrito everyday for at least 2 months. Every day! And I was burrowing anger and resentment in my stomach while wearing a happy face. And I was drinking a LOT.

So, of course I feel responsible that my poor choices and harmful actions led to bodily distress.

However, I expected to heal when I moved into my own space and began enjoying a much healthier diet and a huge reduction in stress.

A dull achey/crampy/pinching feeling in my LLQ rendering me unable to comfortably, reasonably get off the couch one night was what finally prompted me to see my doctor. I had been practicing a healthier lifestyle for a month, my BM was still not at baseline, and while pain or discomfort had somehow not been part of the problem for almost 3 months, it was very real that evening, then largely gone by morning.

My GP ran blood work (good), took a stool culture (good), and referred me to a gastroenterologist, who scheduled a colonoscopy for me and provided a telemed consultation. I began taking a daily fiber supplement per their orders.

Now I am again in mild but persistent pain. Pain hovers at a 2 or 3, sometimes 4 on the pain chart. Maybe three times, including the night in September I was laid up on my couch, the pain reached 6-7 for a couple hours. WHY AM I IN PAIN and how can I fix it??? is the question.

My upcoming colonoscopy is still a month away. I spoke with a gastro nurse and a different call-in nurse in the past few days. Per their advice, I'm letting my bowel rest and basically am on a liquid diet (this will be day 3). I expected the doctor to call me yesterday, and they didn't, so I will be more assertive to get them on the phone but my questions for you are, what do I want to request or demand in terms of assessment and treatment? Also, can anyone please commiserate, I know GI issues (food sensitivities, inflammatory diseases, etc etc) can take forever to figure out, does my story sound typical? Should I panic?:)

I am scared for my health. If I could put my mind at ease that I'm not being ravaged by a devastating terminal illness, I would be so relieved; I don't even care about the discomfort or the bland, liquid diet if I could just have some relief from the mystery of the unknown. So, anxiety comes into play a bit.

I have an amazing therapist who urges me to seek medical care and at the same time finds it very easy to believe this illness is stress and diet-based.

Quick timeline since I have to wrap this up and will probably be unable to comment for a while:

-June, 2022: uptick in stress, poor eating habits, and alcohol consumption
-July: change in stool consistency that has not returned to baseline
-September: GP appointment after real stomach pain
-Now: recurrence of pain but more persistent
-Today: I plan to get my gastro doc on the phone to advocate for care

I am a woman in my 30's with no family history of [anything medical relating to these concerns]

Any advice for how to care for myself, advocate for my needs, and find solace from your similar experiences would be so greatly appreciated. TIA
posted by shocks connery to Health & Fitness (7 answers total) 1 user marked this as a favorite
IANAD, but lower left quadrant abdominal pain that comes and goes, and sometimes spikes in pain, is how my diverticulitis presents itself. I ended up in the ER the first time because the pain was SO BAD and my PCP didn't want me to wait the weekend - at the ER, a CT scan showed some inflamed pouches; a round of antibiotics killed off the infection quickly, which in turn got rid of the pain. I then had to make some diet changes - high-fiber all the time, eliminate foods (through trial and error, unfortunately) that cause me to flare up - in my case so far that's apple skins and seeded fruits. My instructions for subsequent flares are - very low-fiber diet for a few days until it clears up, Tylenol for the pain, and if I am running a fever or have other signs of infection, they'll prescribe another round of antibiotics. I care for myself mentally by reminding myself that abdominal pain is a big deal (they gave me morphine in the ER! I didn't think it was that bad!), and can be really exhausting.
posted by okayokayigive at 7:03 AM on February 1 [2 favorites]

Ask if they can put you on the call list in case of cancellations for the colonoscopy. I generally don't advocate for extra antibiotics, but a course of antibiotics for diverticulitis, just in case, while you wait, seems reasonable; I'd at least discuss it. Has the doctor ruled out an ulcer? Ulcer meds while you wait might be an option, as well. Taking Tums might give some relief, and they're good for your bones because they're calcium. But these are things to discuss with the doctor. And discuss pain relief.

poor choices and harmful actions, eating a bean and veggie burrito everyday for at least 2 months. anger and resentment, drinking a LOT.
Bean and veg burritos are not a poor choice. Drinking more than you should for a few months is not great, but in all cases, you identified the problem and corrected it as quickly as you could. You sound like a vegetarian, which is good for gut health. You didn't choose to be stressed, and stress is hard on your body. Be kind to yourself. You don't deserve to be in pain and you need and deserve pain relief. You can advocate for yourself by not blaming yourself. Standard recommendations for healthy gut are: Eat fiber-rich foods, Fresh leafy greens, Yogurt, Beans. Small meals, Exercise, Drink water. In case of diverticulitis, I might lay off corn, strawberries, popcorn, nuts, and seeds, unless they're ground, just for now.

I've had a few bouts of GI issues, currently treating an ulcer (the kind not amenable to antibiotics), and chronic gut pain is just miserable. You didn't have blood in your poop, which is really good. Most Big Bad Scary things cause changes in your blood, but tell your doctor that you're feeling concerned about the chronic pain, and ask for reassurance.

Please update the thread, so we know you're okay.
posted by theora55 at 8:02 AM on February 1 [1 favorite]

I know two people who have experienced and are still are experiencing similar digestive issues. I am not saying that you have the same thing but if it is recurring and the medical establishment has no answers, this may be of help.

One person reintroduced food to her system one by one and follows the FODMAP diet, self-medicates with CBD and is gluten-free. The other person eliminated alcohol and also follows the FODMAP diet, self-medicates with CBD and basically rarely leaves home. They both have experienced these issues for years and they do not know each other. They experimented with several different solutions, diets, and medications to help them with their pain. I have followed their journeys and they both have had tremendous pain and isolation due to their digestive issues. They both claim the FODMAP diet and CBD has somewhat helped the pain if that is any help in the short term.

I have been following clinical trials on fecal transplants and it sounds really promising.

I hope it is an issue that is easily solved by a doctor and able to be diagnosed. If you fall down the medical hole of doctors not knowing what is wrong with you, I offer this as a possible shortcut from the many years of experimenting.
posted by ichimunki at 8:09 AM on February 1 [1 favorite]

I want to address your worry. Occam's razor points to more common & less dire things than anything you might be fretting about during what is obviously a super stressful time. LLQ pain can be referred from other areas. It's not uncommon to experience pain there from appendicitis or gallstones. Or benign ovarian cysts.

I recommend that you 1) press the GI doc staff to get you an earlier colonoscopy date, 2) ask your GP to continue differential diagnosis while waiting, since the colonoscopy may turn up nothing anyway. Examples: HIDA scan for gallstones, or visit a GYN for a checkup to rule out ovaries.

Constant abdominal pain that renders you unable to get off the couch is bad enough that waiting a month and putting all your apples in that basket is really not something your GP should expect of you. If your pain gets worse than that, please do go to the ER.
posted by ImproviseOrDie at 9:01 AM on February 1

My first thought was wondering if the diet change + stress may have altered your gut's microbiome - the unique combination/ratio of bacteria in your gut directly affect how your stool forms. The fecal transplants mentioned by ichimunki may help, or finding the right blend of probiotics and a diet higher in pre-biotics. (Probiotics, found in things like yogurt and fermented foods, are relatively transient and work their way through your system within a couple of days. Prebiotics, otoh, feed the bacteria that live permanently in your gut. They tend to be very high in fiber - think greens, vegetables, beans, etc.) Re-balancing your gut to a more harmonious blend could help.

In the shorter term, though, you're dealing with pain. The FODMAPS diet mentioned by others might be a way to get relief more quickly while also determining if you're dealing with any food intolerances. FODMAPS is actually pretty low in prebiotics, but that can help settle your gut and provide some relief as your body adjusts. When I was dealing with the worst of my gut issues, I spent about 3 months on the full-fledged FODMAPS diet to get things under control, then very gradually worked my way back. I discovered that I had indeed developed a gluten intolerance. I worked with a dietitian (who worked closely with my functional medicine doctor), and she was very helpful in guiding me and making adjustments along the way.

The good news is your bloodwork and stool sample came back with nothing bad. The bad news is, that can make it tougher to pinpoint a cause. When I was dealing with come-and-go abdominal pain, a colonoscopy found nothing, and my GI basically shrugged. Turning to a functional medicine doctor who was well-versed in gut issues and nutrition finally cracked the case.
posted by writermcwriterson at 9:57 AM on February 1

I have Crohn's disease. You probably don't. You probably don't have anything more serious than an inflammatory situation that's been exacerbated by your recent scenario. THere's a small but real probability that it's something more than that, but worry about it when there's clear reason to. GI pain and discomfort in itself is not incredibly strange unless it's accompanied by bloody stools or other grave signals. Inflammation can take a long time to resolve, and it can cause bizarre, irregular-yet-cyclical pain.

Keep a food diary and annotate it with time to onset of signs/symptoms and/or time to sign/symptom change. You may have some food-related triggers that you need to pay attention to, regardless of the specific diagnosis—this is a common reality for all manner of GI situations. The more detailed, the better. YOu're on a liquid diet now, but what are the liquids? Are they rich, creamy soups, or clear broths with cooked veg, or clear broths with raw veg, or... get yourself some ingredient and composition detail. Can you make note of mass (g) or volume (mL)? If you want to get detailed, get a tracking app so you can get a better sense of macros and calorie density. These are all assessments that a doctor can't do in an office, but you can accumulate and hand to your medical team with pride (I collected all this diagnostic data, now help me!).

Hang in there. For what it's worth, when I'm at my worst I still get a lot of mileage out of hot and cold compresses, hot baths, mint tea, ginger tea, chamomile tea, and (I know this sounds weird but) when I have nausea and other gross feelings, sometimes a deep sniff of a bottle of rubbing alcohol can really help me cut through it (seriously).
posted by late afternoon dreaming hotel at 11:26 AM on February 1 [1 favorite]

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