Partner has GI problems and we're getting scared
April 14, 2021 3:02 PM   Subscribe

Partner has gastrointestinal problems and we're getting scared.

My partner has been suffering from gastrointestinal problems for about three months. It started with trouble swallowing and then feeling food getting stuck in her esophagus. She tested positive for H. pylori and was put on two antibiotics and omeprazole (a.k.a. Prilosec) for two weeks. That helped with the swallowing but she then developed severe abdominal pains. She went to a gastroenterologist and he did an endoscopy which showed "irritation due to acid reflux" and they took biopsies for which we're still awaiting results.

The abdominal pain is less severe but it still hurts when she eats. She has no appetite and eating sometimes makes her feel nauseous and she has to force herself. She's down from 125 lbs. to 109 and is losing weight every day. Her diet is mostly coconut yogurt, bananas, eggs fried in oil, rice, and water crackers (the gastroenterologist advised a bland diet). She's tried avocado and almond butter a couple times but she said it was painful after, though it seems anything causes at least some pain. She's counting calories and figures she's getting 900–1200 a day. She was taking a women's multivitamin but just switched to a kids' multi which is easier on her stomach. She's tried Tums, Pepto Bismol and Pecid but those only help a little.

All this is causing lots of anxiety and daily panic attacks. She feels trapped in her body and is so tired of living like this. She did find a therapist (mine, actually) who is talking with her and prescribed mirtazapine for the anxiety/depression and lorazepam for the panic attacks. The lorazepam is the only thing that makes her feel a little better mentally and physically.

Right now the scariest thing is her weight loss. She doesn't know if she has weeks to wait for the doctor to get biopsy results, or to get a second opinion from another. My therapist, who used to work at Stanford, recommended going there for the GI problems. But we don't even know who to call or where to start; it seems there are dozens of doctors and multiple clinics.

Sorry this is so long. I'm trying to stay strong for her but we're both getting scared. She left a message with the gastro doc yesterday explaining her concerns about the weight loss but we have yet to hear back. How do we start with Stanford? Who else can we talk to about getting her weight back up? What other foods can we try? Any other suggestions on how to get through this?
posted by Arthur Vandelay to Health & Fitness (34 answers total) 4 users marked this as a favorite
The swallowing plus stomach symptoms make me wonder about eosinophilic esophagitis. The diagnosis is done through biopsy on an esophageal scope so maybe that’s one of the things they’re testing! Treatment is a restriction of major allergenic foods.
posted by obfuscation at 3:10 PM on April 14 [3 favorites]

I have eosinophilic esophagitis and it definitely causes difficulty swallowing and loss of appetite. Not sure about abdominal pain. There are a few meds that help with it such as swallowed Flovent.
posted by mattholomew at 3:37 PM on April 14 [1 favorite]

While you’re waiting to hear back from the GI doc (call early and often if they’re not getting back to you!), can she tolerate Boost or Ensure to help get more calories into her?
posted by MadamM at 4:01 PM on April 14 [17 favorites]

I had a similar super-queasy weight freefall, but without the abdominal pains, last year. It's incredibly scary and upsetting. I'm glad you're looking out for her. Mine was related to a parathyroid tumor due to longtime kidney failure, so this is certainly likely not the case with your partner as it'd be super obvious from even basic bloodwork -- her calcium would be off the charts, for example. But for a long time, endless nausea, barfing, loss of appetite.

More things to try avoiding: Nightshades. Nightshades include tomatoes, tomatillos, white potatoes, peppers of every kind, eggplant, tobacco, a long list. If she's doing any sort of broth made with any tomatoes whatsoever, for example, she might try interrupting this. To this day, I can't have tomatoes or peppers or anything with paprika in it, and paprika is in EVERYTHING. Potatoes remain iffy.

My endocrinologist recommended Gatorade for the calories and electrolytes. I would have a 32-ounce bottle a day and often part of a second one. If your partner can have this, it was VERY helpful for me. I'd also have cinnamon rolls and muffins topped with butter. Your partner may or may not be into that. It's by no means healthy, but it was easy calories.

The omeprazole, I found it worked best if I took it on an empty stomach and then I waited an hour or two before attempting to eat anything. Omeprazole has a limited lifespan, though, so it mostly only helped early in the day. I was also prescribed zofran for nausea -- her mirtazapine may be also be helping with this. I didn't find much comfort in the zofran -- a nurse explained it doesn't seem to help some folks who are already well into nausea -- but I did find some relief with phenergan.

If she is able to sleep on her left side, it seems to help with nausea overnight.
posted by mochapickle at 4:15 PM on April 14 [6 favorites]

I'm sorry to hear about what your partner is going through. I had similar issues some years ago after my gall bladder was removed. I had a few attacks of severe nausea and abdominal pain and lost about 25-30 lbs. It took about 2-3 years after the surgery for the attacks to subside, but I ended up with acid reflux and esophagitis, and I needed fundoplication surgery to get those issues under control, as I was taking large quantities of omeprazole that was not working as well, after a year or so.

What bothers me is that the GI specialist hasn't gotten back to you. They should return your call the same day, given the severity of the symptoms you report here, particularly weight loss. I would suggest contacting their office again, until you get some timeframe on results and adequate feedback on how to manage symptoms, stressing to them that the current treatment approach is not working. In the meantime, you might also contact your primary care physician, if you have one, to get advice on other GI specialists.

Related to acid reflux, some other tests that might be useful to ask about are manometry and esophageal pH monitoring, where discomfort events and acid levels are measured over a 24 hr period. In my case, this helped measure the extent of a hiatal hernia that allowed acid to enter from my stomach into my esophagus — particularly while I slept on my side, to determine if fundoplication or other surgeries were appropriate. For me, subsequent surgery raised my quality of life immensely: much less nausea and abdominal pain, among other improvements.

I hope she gets better soon.
posted by They sucked his brains out! at 4:45 PM on April 14 [3 favorites]

A few years ago, for six months, I was mysteriously ill. Nausea, no appetite, burping quite a bit / similar feeling of pressure or food stuck in the throat. I, however, did not have pain. Two endoscopies came back with nothing significant.

Fast forward to pleading with my doctor to find out why I felt like shit, they did an ultrasound, followed by a CT for confirmation. Results: Gallstones.

I did not have the typical abdominal pain that comes with them, for whatever reason. But many of my other symptoms were similar to your partner's. Based on the ultrasound my PCP doubted it was gallstones but thankfully encouraged me to get a second opinion, which led to the CT / confirmation of stones.

One quick outpatient laparoscopic surgery later and I was right as rain - came home and actually looked forward to, and enjoyed, dinner for the first time in months.

I'd encourage them to at least suggest their doc look for stones. Good luck... being mysteriously sick is scary and it sucks. But at this point they should have ruled out most of the obvious larger scale, more serious issues. Hope you feel better soon.
posted by SquidLips at 4:51 PM on April 14 [1 favorite]

IANYD. I am a retired RN who prefers to focus on holistic therapies, diet, exercise, and spiritual practice. IANYRN.
This makes me think of possible paralytic ileus, which is a medical emergency that often unfortunately requires surgery... has anyone investigated that as a differential diagnosis?

Is she passing any gas? If so, that's a good thing, as it means there is some activity in there. Is she having any bowel movements at all? If not, it may be due to the lack of eating, but also could be a blockage. If her abdomen is hard or distended, this could be an indicator. There's also something that nurses call a "ropey" bowel, which might be felt along the upper part of the abdomen, along the transverse colon - which is a sign of serious constipation (ultimately, blockage).

Aside from that, H.Pylori is found in many people who do not have GERD. It has been found to be in most people's stomachs, but it may be an overgrowth in those who have other GI issues. What is most concerning is whether your GF can keep anything down, especially water and electrolytes, if not a lot of nutrients.

If she is taking any fiber supplement, please remember to take (Metamucil) in a full cup of water, and then chase it down with another full cup of plain water - as the fiber itself can cause blockages if not taken with enough water.

Sometimes antacids can do more harm than good, as people who have digestive issues (particularly slow, and feeling full) and H.Pylori, have a problem with LOW stomach acid, and by taking the antacids, that person can slow the digestion even further, to the point of making it difficult to eat anything. Apple Cider Vinegar (ACV) supplements on an empty stomach before meals (take with water or juice) can help decrease pH (increase acid) which will assist with digestion if that is a person's personal issue. Taking ACV by the spoonful is much cheaper (get the organic kind, with the "mother" for most benefits), but it is not always tolerated by some people (myself included). Hot water with lemon on an empty stomach also helps.

Also, your GF has had trouble eating high fat or high protein foods. Fats and proteins generally take longer to digest than vegetables and carbohydrates. It is typical for someone with low acid and in particular also, low bile production (bile is what helps to break down fats) to have even greater difficulty in breaking down fats and proteins. She may find it easier to eat oatmeal, very soft beans & legumes (particularly made into something like hummus?), or a hardy cooked winter squash. Lots of steamed vegetables, particularly root veggies, might also help with keeping her calorie intake up and increase the speed of digestion. It may be helpful to try some digestive enzymes as well.

Apple juice or a tart (sour) cherry juice each have malic acid, and if this is something that she is able to tolerate, then if her issue is due to low bile (which is often due to slow emptying of the bile ducts) this will soften the bile and make it flow better (hopefully).

Another supplement that might be good to add, would be Magnesium - as this helps to relax the muscles in the body, and in particular, relax the bile ducts and the tiny muscles that promote peristalsis. Getting Magnesium can be as easy as taking an Epsom salts bath (Magnesium sulfate) - and would be less stressful than trying to ingest one more thing.

Since your GF has been taking antibiotics, she will need to start taking probiotics (preferably with a prebiotic - something to feed the beneficial bacteria once in her intestines, so they can multiply - like 1 Tbsp of fresh ground flax seed meal with 3 Tbsp plain yoghurt or kefir) at the same time that she takes the probiotic. This is because antibiotics will remove all the beneficial bacteria as well as any bad bacteria that she may be trying to fight off. Unfortunately, she would have to wait until she's not taking the antibiotics anymore before taking the probiotics - as they wouldn't be able to repopulate the colon until that is finished.

I hope all of this is helpful. I am currently on my own GI journey which involves what I believe to be biliary colic (liver/gall bladder), and I can attest to having similar symptoms of constant fullness, lack of appetite, and occasional bouts of terrible abdominal pain that can last for hours ranging from a 4-8 out of 10 - starting in the upper right abdomen, then upper in general, and then it moves around a bit more, until it reaches the groin, and leaves me tender for a while afterwards. (It doesn't sound exactly like what you've described above, though, and I worry about the first thing I mentioned above.) For myself, I had my first ever colonic hydrotherapy treatment - a true cleaning of the pipes - and I'm repopulating my GI tract with probiotics as I suggested above, this very moment. I'm hoping to keep everything flowing smoothly by incorporating more of what I suggested above with diet (but I know that I can't handle many grains, beans or legumes myself, and I have to be mindful of my carb intake as well... but that is not necessarily your GF). I was also given feedback from the practitioner - and discovered that I most likely have IBS as well, so will need to avoid trigger foods... anyway, enough about me.

I hope your GF can find what works for her. If anything, I hope that she may find something that resonates with what I've shared, and perhaps start to understand her own body's needs better. I understand the fear - when you're starving because you can't eat, you start to think that you'd better eat something that's most calorie dense - and then the pain starts all over again when the trigger foods are ingested.
posted by itsflyable at 4:55 PM on April 14 [12 favorites]

Not to scare you, but I think she should also be evaluated for pancreatic/other gastrointestinal cancer (a CT scan should be sufficient to rule it out). It doesn't go with the swallowing problem, but it sure does with the abdominal pain and weight loss. I don't think that's what it is, but at this point I would want to eliminate it as a possibility.
posted by praemunire at 4:59 PM on April 14 [8 favorites]

Ugh, I know what it's like to have constant stomach pain with eating (reflux and probable ulcer for me, was happily surprised to feel totally better after 3ish months of prilosec). I really feel for her and can relate to how much constant stomach pain messes with one's head, especially when it is unexplained.

I could mostly eat similar foods as your partner, minus the eggs. I also found that bread, oatmeal, frozen peas, cucumbers, and pears were okay on my stomach so I would cautiously recommend giving those a try. I could also tolerate tofu, but not soy sauce. Coconut aminos was a lifesaver, to add some flavor to things. Anything dairy (with the exception of a SMALL bit of yogurt) or that included tomatoes, garlic, or onions basically made me feel like I was dying.

I agree with the advice upthread to keep phoning until she can speak with the GI specialist. If they are dismissive of her concerns, then I would 100% seek another practitioner. I don't know anything about Stanford, but if she has a GP they might be a resource to link you?
posted by DTMFA at 5:01 PM on April 14

Looks like you would start with Stanford's general GI clinic.
posted by praemunire at 5:11 PM on April 14 [1 favorite]

My partner had almost the exact same thing last year, the pain, difficulty swallowing (though this was more of a "food makes me gag" sort of sensation), no appetite, losing 20 lbs in 2 months, endoscopy showing "irritation," antacids didn't help much. It was so scary! All the tests came up negative and the eventual conclusion was stomach spasms, for which the standard treatment is SSRIs (not in a "it's all in your head" sort of way--a huge portion of serotonin production happens in your gut). My partner had been on SSRIs since a teenager and stopped taking them about 6 months before this happened. The theory is that it was accidentally well-controlled with the SSRI, and after going off it, it got worse. Going back on an SSRI helped them a lot.

It could be something big and scary, but I want to present that as a possible answer that's not, like... super satisfying, but it's treatable, and shows that you can have something like this happen and be okay afterward. It's easy to get into the "oh god this is so scary" mindset and I want to give you an example of someone who went through this and was fine.

Definitely check with your doctor about the weight loss, but I will say that while my partner's doctors were concerned about the weight loss, 20 lbs in 2 months was in the "concerning but not life threatening" range. Like, it definitely needs to be checked out, especially if it keeps getting worse! But FWIW my partner stopped losing weight at about 20 lbs; your partner may plateau soon.

I would definitely follow the above suggestions on things to check out and how to make that happen faster, but just wanted to provide some reassurance in the form of "it's definitely possible they'll be fine even though this is big and scary now." Best wishes to both of you, I know how hard this is.
posted by brook horse at 5:14 PM on April 14 [6 favorites]

Oh, and as for suggestions on how to get through it: definitely Boost or Ensure. They don't taste great but they're easy to get down. My partner found that almonds, oatmeal, eggs, and mashed potatoes typically didn't hurt their stomach. My partner often found that the pain was worse on an empty stomach, but because of their lack of appetite weren't eating frequently enough, so I had to be really strict about reminding them and basically just making food and putting it in front of them so they'd eat something. If she's having difficulty sleeping (I almost guarantee she is), she can ask her GP about temporary sleep meds. My partner's GP said it was fine to take Benadryl as a sleep aid as long as it wasn't going to be forever. Lack of sleep definitely made everything worse, so trying to keep on top of that was important.

Other than that, just lots of patience and encouragement that we'll get through this. Distraction as much as possible--movies, games, audiobooks, the more engaging the better. Taking on as much of the doctor scheduling and advocacy as possible--my partner got to the point that they were just so so sick of talking to doctors and needed a lot of encouragement and assistance to continue to pursue answers. It helped when I was the one to schedule appointments, write down agendas for what to discuss, take notes about what was said in appointments, follow up on prescriptions, etc.
posted by brook horse at 5:25 PM on April 14 [1 favorite]

Agree with Praemunire; get a CT scan ASAP to rule out some cancers. Your GP can order one.

I have a neuroendocrine tumor in my pancreas (cancer but not pancreatic cancer), and had/have similar symptoms, but not nearly as fast. The pain for me is often b/c the pancreatic tumor pushes on my duodenum, limiting how much food can exit my stomach at one time.

If her CT scan comes up clean, also ask for a blood test for chromogranin A: this is how you test for neuroendocrine tumors (NETs) because they can often be too tiny to show up on a scan.

For nutrition, can she drink nutrition drinks? When I have trouble processing food I rely on Ensure Plus, and Soylent. (Avoid Ensure High Protein b/c it's lower in calories and often has fake sweeteners).
posted by quartz at 5:31 PM on April 14 [3 favorites]

Also, if she's stable enough to travel and you feel like you're not getting the answers you need locally, the Mayo Clinic takes insurance like any other place. You can call to make an appointment.
posted by quartz at 5:35 PM on April 14 [1 favorite]

I struggle with very similar symptoms and I agree with everything else. And I have one very simple easy addition.

Use a drinking straw to take fluids in. It is just much much easier. Buy a box of straws for the house and the gatorade etc will go down much much better.
posted by ambrosen at 6:03 PM on April 14

Response by poster: I came home from work to find a ton of replies — thank you all so much! We're going to start going through them but I did want to answer a couple questions. She was drinking Pediasure or Ensure for a while, but she felt it was basically oils and protien concentrates with vitamins. She she started taking the kids' multi and adding coconut cream to her coconut yogurt. She was drinking a pedialyte-type drink for a bit but one day it seemed to cause problems so she quit. (It's so hard to know what's causing the issues from day to day.) Then she went to coconut water for electrolytes but that wasn't any better.

Again, thank you all for the replies. <3
posted by Arthur Vandelay at 6:21 PM on April 14 [2 favorites]

Is she still taking prilosec or not?
If she's not she should start taking it again and see if that helps, while you wait to hear from a doctor. It's tempting to jump to a lot of other issues including "it must be lack of acid" as a cause but I found that to only worsen my symptoms when I went through the same thing. The only thing I'll say is that the standard 20mg serving of prilosec is almost always too much for me, usually I get a prescription for less but barring that I will find the kind that dissolve in your mouth and just try to bite off half to get a half dose to avoid the rebound side effects that a full 20mg causes. But seriously, if on the off chance she isn't taking prilosec right now, I would start with that while you wait to hear from the doctor. If it doesn't help quickly, no need to continue, but I went down a lot of wrong paths starting with weird treatments before discovering that a slightly reduced standard treatment for this worked much better.
posted by ch1x0r at 6:34 PM on April 14

I use an electrolyte water additive that does not have any (real or fake) sweeteners or dyes, which could have been the issue with the Pedialyte. It tastes at best like someone sprinkled the tiniest bit of citric acid in your water, with a few grains of salt, and disappears completely in something flavored.
posted by Lyn Never at 7:34 PM on April 14

ER for a CT scan. This is scary and your specialist is not helping.
posted by cotton dress sock at 7:50 PM on April 14 [5 favorites]

I have found digestive enzymes helpful for this sort of issue. Same idea as taking lactase for lactose intolerance but for a wider range of foods. Enzymedica is a good brand, though spendy. Once things calm down a bit, an elimination diet might help identify the/a problem. I have learned that the problem foods aren’t always the ones you initially expect. Giving up gluten, if not grains in general, is probably worth a shot.

Continue ruling out more serious issues, of course. Good luck! Let her know we’re cheering for her.
posted by Comet Bug at 8:01 PM on April 14 [1 favorite]

I have had acid reflux for many, many years. I have gone through periods where I have had difficulty swallowing. In fact, food has actually gotten stuck in my esophagus a couple of times and I've had to go to the emergency room to have it pushed down into my stomach. The swallowing problem happens when, over time, I haven't been careful about what I eat.

I have experimented with what types of food I can't tolerate. Here is a partial list:
1. No peanut butter or any other type of similar butters.
2. Nothing that has citric acid as an ingredient!
3. No olive oil, but can tolerate canola oil.
4. No fried eggs no matter what they're fried in.
5. No bananas - definitely.
6. Can tolerate white bread but not whole wheat bread.
7. No citrus fruits.
8. No processed food.
9. No chocolate.

I swear by Mylanta (or its generic) which is 200 mg aluminum hydroxide; 200 mg magnesium; 20 mg simethicone. Other types of antacids don't help me at all. Another antacid that I find to be quite effective as a back-up is some baking soda mixed with water ... tastes terrible but works remarkably well.

I also put 4" blocks under the top two legs of my bed. (I think they recommend 6", but I kept sliding toward the bottom of the bed at night.) The gravity of sleeping at an angle helps to prevent acid from leaking from the stomach into the esophagus. Also, sleeping on the left side helps keep acid in the stomach, due to the shape of the stomach.

I like to make things like homemade pancakes (made with white flour and canola oil) and top them with something like homemade applesauce (the store-bought kind has citric acid, which is a no-no). The only meat I eat is turkey, as I have found it to be the most digestible. I do well on cooked vegetables (except for broccoli).

I hope this helps!
posted by SageTrail at 8:51 PM on April 14 [1 favorite]

I don't have medical advice specifically, but I've had GERD for most of my life. You say the symptoms are causing anxiety and panic attacks, but I wonder if it's the other way around? I find my symptoms are much worse in stressful times of my life. I first went to the doctor with my gastro symptoms the second semester of my senior year of high school, when major life changes were definitely afoot. My symptoms never got as bad as your partner's, so I only just went to a gastroenterologist for a baseline exam this year. He told me to keep taking Pepcid as needed to control my symptoms. (FTR, I took Zantac for many years, and thought that worked better than Pepcid. Unfortunately now I have to worry about getting stomach cancer from taking Zantac for my stomach issues)

It sounds like your partner eats a healthier diet than me, so take this recommendation with a grain of salt. When my GERD is acting up, I like to eat chicken tenders and fries. It's food I know is delicious (to me), easy to digest, and without any onions, peppers, tomatoes, etc. that might cause distress. And I like to drink Sprite if my reflux is bad. Of course ginger ale is an old wives' tale cure for stomach issues. If your partner isn't into sugary drinks, flavored seltzer has the same effect for me. Something about the bubbles settles my stomach. I find juice too acidic, and for whatever reason, even water gives me reflux sometimes. How does partner feel about dairy? Milkshakes are a great way to add calories to a diet. I guess basically what I'm trying to say is as long as there are no other underlying medical conditions that would preclude eating junk food, don't shy away from it. When you're that low a weight and concerned about being underweight and under-nourished, eat calorie dense food.

Good luck with everything, gastrointestinal symptoms suck.
posted by DEiBnL13 at 9:46 PM on April 14

One thing that settles my GERD stomach is Ginger and Turmeric tea with Manuka Honey. Turmeric Ginger Herbal Tisane
posted by Dressed to Kill at 10:51 PM on April 14

For people who are smaller to begin with, the type of wieghtloss being described is a significant percentage of body weight (13 percent!) And depending on how tall she is to begin with she may or may not be underweight . Unintentional weight loss can absolutely increase anxiety symptoms in and of it self. Intentional wiegtloss can too. The brain does wierd stuff when it is dropping weight.
It is absolutely okay to go to an ER for something like this. It's not ideal in current medical conditions, but she can't eat regularly, she is losing weight and experiencing pain. If you don't get a response back from your GI doctor soon, it is something to concicider.

I lost weight like this and felt awful awful and the culprit was NSAIDS specifically advil. I had untreated endometriosis and was taking it in large doses because I was would have bouts of extreme pain. Then, I started having stomach problems on top of it, nausea, vomiting, then an increase in pain that subsequently ended up in a hospitalization.
posted by AlexiaSky at 12:28 AM on April 15 [7 favorites]

She was drinking Pediasure or Ensure for a while, but she felt it was basically oils and protien concentrates with vitamins.

It's calories. She needs calories to stop weightloss.

Also why is she not on an anti-emetic to help with nausea?
posted by DarlingBri at 4:28 AM on April 15 [8 favorites]

A friend recently went through a somewhat similar thing and it improved when she stopped taking the high-dose prescription iron supplement she was on. (Her case isn't exactly the same but thought it was worth mentioning in case it could be part of the puzzle for you.)
posted by LobsterMitten at 6:53 AM on April 15

posted by bluebird at 7:13 AM on April 15 [2 favorites]

If I were in this situation I would be sending at least a daily e-mail and making a daily phone call to the doctor for the biopsy results. You need those biopsy results. I would also be calling that doctor's office and asking them about getting a second opinion already, saying things like, "She's getting weak from being unable to eat," "Want to avoid hospitalization," "Still able to get around the house to the bathroom," "Daily weight loss increasing," "Pain too severe for daily activities," and anything else that may make them think it already urgent.

Document every phone call or message and occasionally mention the number of calls you are making. "I've called every day since Monday and we have not yet received a call back." You don't want them to miss the fact that you called and are truly anxious.

I would also be calling multiple numbers at Stanford and asking them who you should be talking to. I would also be doing internet research trying to find that information on line.

If this continues she may need to go on parenteral nutrition, which often requires hospitalization. Don't mention that to the doctor but figure out how your household and your med plan will deal with that, just in case.
posted by Jane the Brown at 8:05 AM on April 15 [3 favorites]

If you have a family doctor call them a couple of times a week for help. If they just refer you back to the specialist, ask for assistance the way you got assistance from your therapist, not for the GI problem but for related issues, such as dizziness. You want them concerned about her too, and potentially ready to make another referral or nudge the original specialist.
posted by Jane the Brown at 8:10 AM on April 15 [1 favorite]

You've gotten a lot of great advice here! I went through a similarly scary lost-15%-of-my-body-weight-in-three-months bout of GI issues last year, which was finally diagnosed as small intestinal bacterial overgrowth (SIBO), stemming from multiple rounds of antibiotics + short gut syndrome. A few things that helped:

1) Finding the right practitioner. My primary care doctor was concerned and referred me to a dietitian to explore food intolerances - but I could only make an appt for 3 months out. My regular GI (who had handled the short gut syndrome) was frustratingly unconcerned. So I turned to a functional medicine doctor who worked closely with a dietitian to stabilize my weight, get the diagnosis, and get me back to health. If your GF's doc isn't listening/responding, keep going until you find one who will.

2) A gentle diet. I started with a bland diet like what she's eating, but it didn't seem to help until I went on a very-low FODMAP diet for about four months. I cut out all grains (like the rice and water crackers - I was doing the same thing as your GF!) and dairy, and minimized high-fat foods (like avocados and nut butters), since those are harder to digest. Look for ways to minimize the work the digestive system has to do - finely chop, puree, cook, etc. This helps the body not have to do that processing, making it easier to absorb the nutrients and let the gut rest. I had the same thoughts about supplementation ("oils and proteins mixed with vitamins"), but even my very whole-foods-oriented dietitian told me to use an Ensure-like powder since "this is a battle, and you need the right fuel." I also really pushed electrolytes and room-temperature water. (Cold seemed to irritate things.)

3) Sleeping upright. My pain was worst at night, so I found sleeping mostly upright in a recliner helped a lot.

4) Meditation and yoga. The anxiety was strong, and it made things worse - I was definitely panicking about the weight loss and uncertainty. I'm glad she found a therapist to help with this! I added in a short daily yoga practice, at first just 5-10 minutes when I finished my work day, where I really focused on breathing. Then I did some slow breath counting at bedtime. I was reluctant, but it really did help.

I wish your GF the best of luck - I hope you get answers and support!
posted by writermcwriterson at 8:57 AM on April 15 [1 favorite]

Just want to add a p.s. regarding ascorbic acid (as I stated above, it exacerbates my acid reflux) -
You'd be surprised where ascorbic acid will show up. For example, it is even added to coconut milk!
posted by SageTrail at 9:55 AM on April 15

I just wanted to mention if Ensure etc gross her out, I was sick in a similar way recently & I saw Ensure Plant Protein at Target. I tried it specifically bc it felt like real food, being mostly pea & fava bean who are already my friends. Even my mom approved who has very high standards about "things that are mostly oil" etc. I couldn't stomach anything else and I was HONGRY & this stuff made me feel comfortable for the first time in weeks.
posted by bleep at 2:50 PM on April 15

I have no insight into possible root causes, but I recently started on a medication that has destroyed my appetite, and have tried at least a dozen different meal replacement shakes so far. Most of them were completely unpalatable, either because of the taste or the smell or because it bummed me out mentally to be consuming a slimy slurry of palm oil and aspartame, regardless of how much I might need the calories.

The two brands I am still drinking are:

Orgain Organic Nutrition Shake: These are by far the winners. They taste good, the consistency is smooth, and they don’t really have an odor (this doesn’t sound like it should be a special feature but it is!). They’re sweetened with cane sugar, they have a pretty good nutrient profile (the ingredients list includes some proprietary blend of actual fruits and vegetables), and they have more calories per ounce than any shakes aside from brands like Soylent/Huel. The vanilla and chocolate are both great, and they also have a vegan variety, though I can’t vouch for it.

Ripple Protein Shakes: These are vegan, and nice for when I want something thicker or just some variety. They are more like a milkshake in consistency, and are also sweetened with cane sugar. I think the vanilla is better than the chocolate, which can taste a little chalky to me, although I sometimes drink the chocolate mixed with extra whole milk and then find it good.

Oh, and I will also occasionally grab some Premier Protein shakes because they have a wider variety of flavors, but the flavoring & aspartame combo can be a little much and I usually mix them with extra whole milk, too.

Some other tips: whoever recommended drinking from a straw is totally right. That has helped me a lot, both with the shakes and plain water. I also have better luck eating things that are okay at room temperature, so I can eat them over the course of several hours, whether that’s something meal-like or just a pile of cheese and crackers, or a bowl of popcorn. Graham crackers were also a super big winner when I was having reflux—I would nibble at the rate of maybe one bite probably every fifteen minutes. Other bland, carb-y snacks like tortilla chips, animal crackers, and shortbread cookies have also been good for adding a hundred extra calories here and there.

And one last thing: I want to validate your feelings that this kind of weight loss is incredibly scary and disorienting, especially when there’s not an end in sight. (1000 calories a day is literally starvation! That’s upsetting!) When doctors are dismissive of this symptom and don’t have many ideas to help her, please know that this is not because it’s not a big deal, but because doctors are so wildly and flagrantly fatphobic that it’s almost impossible for them to view any weight loss as a problem, even if it is unintentional, distressing, or causing other negative side effects like weakness, dizziness, etc. You both are right to be concerned, and right to want to get your partner the calories and nutrients she needs.
posted by CtrlAltDelete at 8:37 PM on April 15 [2 favorites]

Just checking in since it's been a week. I hope she's getting the care she needs. <3
posted by quartz at 9:15 AM on April 22

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