I’ve been having stomach pains since mid-March, so when I went for my yearly check up with the cardiologist I told him about the pain and he sent me to the gastroenterologist in his practice. I haven’t been to a gastro since I was a teenager, on purpose, so the referral was not a happy thing for me, especially when the cardiologist casually told me it was also time for a colonoscopy.
The new doctor was nice, though. And he actually listened to me, and read through my records, and even recommended a geneticist to figure out what type of Ehlers Danlos I have (in case it means that my tissues are too fragile for a colonoscopy, which would be a pretty cool escape). But he also sent me for a few ultrasounds, and even though I knew I should be happy that he was looking for answers, I was dreading the scans, especially the more invasive one. I want to feel better, magically, not go for more humiliating tests.
When I told my therapist about the latest medical drama, and my concurrent struggles with Intuitive Eating and trying to learn how to respect my body, she said, it must be hard to respect a body you can’t trust.
I’d never quite thought about my lack of trust in my body as coming from my health issues; I’ve thought of it more in terms of the childhood sexual abuse I experienced, and feeling like my body was always in danger and not a safe place to live. But my therapist was right: the way my symptoms come up intermittently, and don’t show up on traditional tests, has made it hard for me to develop a feeling of trust in my body as an adult.
But maybe the more apt question is: How can I respect a body that my doctors don’t trust? How can I ignore their doubts about my symptoms when they are the only path available for seeking help? The way doctors tend to focus on blood tests and scans, and ignore basic details of how the person is or is not functioning, is frustrating. They are supposed to be empiricists, and yet they ignore so much of the information that’s right in front of them.
I went for the invasive scans, despite my reluctance, telling myself that even if I don’t trust my body I still need to do whatever I can to heal it. And hours later I was able to check my virtual medical chart and see the results: mostly normal, but with areas obscured. It was already late on a Friday when I got the test results, so I couldn’t call the doctor’s office for more information, or to find out what to do next.
By the following Monday afternoon I still hadn’t heard from my doctor, but I put off calling, not wanting to be a burden, and not really wanting to hear what he might say. When I finally called, after a few more days of dragging my feet, his secretary said that she hadn’t received the results of the tests, and that’s why I hadn’t heard from the doctor; he would definitely have called by now if he’d received the results, she said. That was something of a relief. And she told me that she was going to reach out to the testing location to get the results and then call me right back. Except, I didn’t hear from her that day, or the next day, or the next. I probably should have called again right away, but I didn’t want to. I resented all of the work that had to go into getting only mildly useful healthcare.
I was finally able to speak to the doctor about two weeks after the ultra sounds had been done, after calling the office again and speaking to the secretary again, and the doctor told me that he wanted me to go for a Catscan this time, with contrast, in order to see whatever had been obscured on the ultrasounds.
I reluctantly made the appointment for the Catscan, and I also heard back from the geneticist’s office (for the Ehlers Danlos diagnosis) with a three page history questionnaire to fill out before my visit.
In the meantime, my nutritionist suggested trying a low FODMAP elimination diet, to see if that could reduce my belly pain. FODMAP stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides And Polyols, which are short-chain carbohydrates (sugars) that the small intestine absorbs poorly. She gave me a crazy list of foods to avoid for the next two to six weeks – like cashews and pistachios (but not walnuts or pecans) and mushrooms (but not oyster mushrooms) and cauliflower (but not broccoli). I could have tomatoes, but not prepared tomato sauce (because of the onions and garlic that are usually added), and I could have chickpeas and lentils and potatoes, but not kidney beans or barley or wheat. It’s totally non-intuitive; I could eat handfuls of table sugar on this diet, but not an apple.
I emptied most of the High FODMAP foods from the pantry and put them in boxes (like we do on Passover when, for religious reasons, we are supposed to avoid eating leavened foods), and I adapted our regular recipes to the best of my ability. But my mind was spinning.
The low FODMAP diet was originally designed for people with Irritable Bowel Syndrome (IBS) and/or Small Intestine Bacterial Overgrowth (SIBO), with the goal of figuring out which foods on the list, if any, are problematic for each individual sufferer. I didn’t have the right list of symptoms for either of those diagnoses, but I was desperate to feel better, so I agreed to go on the diet anyway.
And there was a lot of relief in being on a diet again; any diet, for any reason. It gave me the feeling that I was at least doing something to help myself, and that someone was watching over my shoulder to make sure I was doing it right. But the diet was hard, and even harder for Mom who had to go along with it for no good reason of her own, expect to support me; though she made a lot of “secret” trips to the Italian restaurant around the corner to make it bearable.
After three and a half weeks on the diet, though, my belly pain was worse, if anything. And the limited number of foods I could eat was bringing up my old food panic issues, and leading me to eat more of the allowed foods (like low-lactose cheeses and gluten free cookies).
My nutritionist had told me that people often lose weight on this diet – even though that’s not the purpose – but I’d actually gained weight. And it wasn’t over, because I still had to slowly reintroduce the high FODMAP foods, in case I had a reaction to any of them. Knowing that there would most likely be no relief going forward, despite the length of time it would take to carefully reintroduce each food, made me angry; but I’m such a good girl that I did it anyway.
Oh, and I met with the geneticist. She will be sending me a saliva testing kit so we can see if I actually have a connective tissue disorder (I was diagnosed with Ehlers Danlos on clinical examination in the past), but she said that the tests only catch about forty percent of cases, so, even if the test comes back negative, the chances are 60% likely to be wrong.
And the Catscan came back normal. So I’m at a loss. I was hoping that this summer of medical tests and diets and time off from teaching would re-energize me and allow me to start the new school year with more energy – but I’m still sick and tired, and we’re going back to masks and social distancing and possibly hybrid classes again in September.
I’m angry.
I’m angry that nothing has worked, and that my pain doesn’t qualify as significant because it’s not caused by the right things. I’m angry that I can’t lose weight, and that I can’t stop blaming myself for it. I wanted to make progress with Intuitive Eating and respecting my body, and I wanted to have more energy to live my life the way I want to live it, and it’s just not happening.
Next up. The nutritionist and I are planning an anti-inflammatory diet, to see if, one, nutrition can actually reduce the inflammation in my body, and two, if reducing overall inflammation will reduce my pain and give me more energy. I’m not especially hopeful, but I have to keep trying.
The Jewish New Year (Rosh Hashanah) is coming up fast, and this is a time to make an accounting of the mistakes of the past year and start on a new path, so I’m not giving up yet. But I’m pissed off. Really, really pissed off.
If you haven’t had a chance yet, please check out my Young Adult novel, Yeshiva Girl, on Amazon. And if you feel called to write a review of the book, on Amazon, or anywhere else, I’d be honored.
Yeshiva Girl is about a Jewish teenager on Long Island, named Isabel, though her father calls her Jezebel. Her father has been accused of inappropriate sexual behavior with one of his students, which he denies, but Izzy implicitly believes it’s true. As a result of his problems, her father sends her to a co-ed Orthodox yeshiva for tenth grade, out of the blue, and Izzy and her mother can’t figure out how to prevent it. At Yeshiva, though, Izzy finds that religious people are much more complicated than she had expected. Some, like her father, may use religion as a place to hide, but others search for and find comfort, and community, and even enlightenment. The question is, what will Izzy find?
rachelmankowitz 
Well, I suppose one good thing is that you know what things it ISN’T.
That’s true!
I’m so sorry you’re having health issues and pain. And I’m sorry they haven’t found the source of it yet. But I congratulate you on your book, Rachel. I’ll continue to pray that the doctors find a way to help you. Blessings ❤
Thank you so much!
You’re so welcome. 🤗
Argh. (Grrr.)
Exactly!
Oh, Rachel, I’m so sorry you’re having so much pain and going through so much frustration. When you write like this I just want to hug you. I will pray that you get some conclusive results from your follow-up scan. Having a firm diagnosis often helps even when it’s not to the diagnosis you’d prefer. Knowing is half the battle.
Not knowing has been very frustrating.
I hear you. I hope you get some useful results soon!
Thank you!
Oh, my goodness, Rachel. You are eloquent when telling us even of the most difficult, challenging situations. ~ The year my husband was diagnosed with Crohn’s, we subsisted on chicken, broccoli and white basmati rice. Sometimes eggs. That’s what I ate too, in support. Sometimes what “works” is not intuitive at all: my mac & cheese almost killed him. I hope you get answers so that you are physically more comfortable, and emotionally at peace.
Me too! Thank you!
Hi
Try not to be angry and cause stress, easier said than done i know.
One this you must do is to stop blaming yourself please. Hug x
I keep trying! Thank you!!!!!
Sounds very frustrating.
Is it possible to throw out the diets and just try to eat something easy like Healthy Choice frozen dinners?
They have the calories on there so you could easily work on portions, mix in a few fruits, and Smucker’s Uncrustables.
Even your mom would like them, I think.
It’s so tough to do. I’m no expert for sure. I steadily gained weight every year for the past 20 years and found that much easier than losing weight in the last 6 months but if I can do it, I know you can. Take care of yourself.
Thank you! You too!
My heart is with you. It is so very frustrating to wait for a diagnosis that somehow one thinks will make things better, even if that is sometimes just magical thinking. I hope you feel better and I think it’s good that you feel angry rather than just worn down.
Fingers crossed!
I’m sorry Rachel the medical profession has let you and so many people down. Technology and data is meant to help, but what it means to many is being overwhelmed with data points and having to piece it altogether as we see a patient. Then, we are all too aware that missing something can have grave consequences for the patient, so that means being over reliant on diagnostics.
As much as it would be great to be that once wise mature experienced doctor who had a full grasp of all the necessary knowledge, the pressure to specialise to try to ensure competency in at least one facet of our chosen profession means there is a paucity of generalists who can piece everything together. We’ve created a monster.
Not that this helps you and your needs, and I hope you will find relief from the acuteness of your pain and suffering, and find peace in body, mind, and spirit.
Thank you! That’s a helpful insight.
This sounds so hard! I hope your clinicians can, among them, come up with a reasonable diagnosis that actually has a solution! I recently had to switch to a new primary care physician, and, to get a fresh start, I agreed to all the tests she wanted (blood tests, mammogram, bone density scan) even though I knew they probably would not reveal anything I wanted to know. I KNOW I have osteoporosis, but the list of side-effects for the drug she recommended has me saying, “Thanks but no thanks.” I hate to be difficult, but what’s the point of strengthening my pelvis if I’m increasing the chances of breaking a leg or having my jaw rot away? I hope you will continue to listen to your body and do what’s right for you.
Some of these medical solutions are just the beginning of a new disaster. Very frustrating.
Just to say I’m very sorry about all that you’ve been going through lately, and I hope the many good suggestions above have been helpful.
Thank you!!!
So sorry to hear that you are experiencing such pain and frustration. I hope you are able to find some answers soon.
Thank you so much!
It was so funny to read your post today for I am going through something painfully similar. If it doesn’t show up in bloodwork or an X ray, it doesn’t exist. Yeah, right. I am glad you have the strength and determination to keep fighting. I hope that some day you can tell us the happy news that you’ve found equilibrium and joy! 😊
I hope we both get good results soon!
Hope you feel better soon!
Thank you!
I hear you and empathize – my experiences with my issues have been similar. I hope you feel better soon.
Thank you! I hope that our experiences can change something in how the medical profession deals with women.
Ugg!
All the best. Here’s hoping you get some definitive answers soon.
xoxoxo
Thank you!
You have very good reasons to be pissed off. I hope all your efforts start to pay off.
Thank you!
“it must be hard to respect a body you can’t trust.” How many people need to hear this?! That honestly blew my mind!
I hope it’s helpful in some way!
How frustrating!
Yes!
Sorry about your issues. I’m sending good thoughts your way!
Thank you so much!
I am so sorry that you are going through this. Wishing you a truly happy and healthy new year, with my blessings for a refuah shleima!
Shana Tova u’metuka!!!!
A test that produces erroneous results 60% of the time strikes me as one not worth taking. Best wishes for determining what does give you relief from your discomfort, Rachel. It clearly is distressful to deal with, and stress is its own source of physical complications if it goes on too long. Take care!
Thank you so much!
I recently spoke to a friend who has ehlers danlos- I am sorry that you are going through all these tests and yet you still don’t have a good answer. Wishing you a sweet (handful of sugar? but not apple!) healthy and happy new year – may you feel better and get some answers – BTW, I love your doogy photos and captions – Shana Tovah
meant doggy not doogy – sigh….
Thank you! Shana Tova!
The more we know about the body, the more we don’t know. Sorry you are going through this Rachel, but hope you get an answer on what is happening. Stay well. Allan
Thank you!!!
Oh Rachel, how awful for you. Your body does seem to be working against you, but it’s not your fault! Hopefully they can get to thee bottom of it all and devise a proper diet to suit you.
Hubby suffers from IBS and the reflux problems he’s had have been a nightmare. After his surgery, which failed btw, it was liquids only for three months or so, so I bought a blender and we whizzed everything. He had emergency surgery in February because something got stuck and we were right back where we started. He avoids anything too spicy, most fruit, is limited on veg (fresh tomatoes and green beans are out) and can’t have half the things he used to enjoy. Meals are small and he finds if he eats anything after about 5pm, he’s in all sorts of discomfort, some of which is actually trapped gas! We have finally managed to stabilise his weight but he seems to be snacking all the time as this is the only way to stop his tummy churning. He’s waiting to see another specialist now as we transferred his notes from a useless hospital to one that seems to know what they’re doing.
I’m so sorry for what your husband is going through!!!
The IBS has been with him for about 15 years and the reflux about 5. He had to wait three years for his op and for it to fail was disheartening. We are getting there though. At least his menu is more varied, and provided I cook most of our meals and we know what’s going in them, we manage pretty well. We are finding more treats he can have with no side effects, like cream or custard slices, muffins, ice cream, flapjacks, nougat bars and some biscuits, so he’s doing OK. However, chocolate is usually a no-no.
Oh no!!!!
We know the triggers and work round them, so that’s half the battle.
I understand that anger. In a similar but totally different way, my psychiatrist recommended me to a psychologist in her practice. In the first session I told her about my previous experience with therapist ma not hearing what I’m trying to say and instead forcing me into a diagnosis. She asked a lot of leading questions that I didn’t care for but gave her a second chance. The second session was more of the same. I never went back. And I’m angry that despite my years of seeking help, i still can’t find a professional that gives a rat’s ass about truly helping me.
Mental health care is so hit or miss and it makes me seethe. Having gone through training to be a therapist myself, I’m not feeling good about the future of the profession. There are incredibly talented and compassionate individuals, but…
I know what you mean about not trusting your body, sometimes I get so sick of mine I don’t want to live in it anymore. The anti-inflammatory diet sounds hopeful though, I’ll be interested to see how that goes for you. Good luck!
Thank you!!!!
My sympathies. I’ve suffered with GI issues since I was 23. They’ve NEVER found a conclusive answer except, like you, to send me for more tests. I began to do my own work and watch to see what foods triggered an attack (or pain and bloating), and now I avoid the worst ones. The medical professionals have given me the following labels over that almost forty year course: IBS, Crohn’s disease, over acidity in my stomach, medication reaction, and the latest diabetic neuropathy of the stomach/bowel which slows down digestion and elimination. I know what works for me (through my own trial and error) so usually I just do what I know will work and I don’t ask any more. Like you, I’m tired of the endless tests that tell me nothing useful. Worse is the fact that all those medical professionals never have any solutions or ways to minimize the symptoms even though my illness remains undiagnosed. It’s frustrating and if one is dealing with food issues in the first place, that can be a true nightmare. My profound sympathies, I know what you’re going through! 😦
I’m so sorry for the difficulties you’ve been through. You’re an inspiration!
We’re on the Dr. Gundry diet where you stop eating lectins, which punch holes in your gut. (We got two of his books.) This way of eating is supposed to help a person live a longer, healthier life. (I miss the melons). Anyhow, it’s an anti-inflamatory diet, and once your gut is healed and not leaking, most of the other problems go away. One nice side-effect is we both lost the extra weight we had on. I think it’s always easier to have someone else to do these special ways of eating with.
Definitely!
Sorry to hear about your health issues. Do try the homeopathic treatment. One, they don’t ask you to undergo unnecessary tests. Two, they give you medicines as per your specific symptoms. Three, their medicines work holistically. But you need patience as they take some time to work. My 25-year-old psoriasis problem got cured finally with homeopathy. When nothing works in allopathic, homeopathy is the way to go. That’s what we do here in India.
That sounds great!
I feel your pain. I’ve been dealing with the same thing for the past 8 weeks. Nausea, vomiting, and diarrhea. The only thing I can hold down is potatoes and a few liquids. I’ve lost a lot of weight and have gone to so many doctors and one doctor told me….I don’t know what it is, but I do know it will either get better or worse. Come back if it gets worse while sitting there getting an IV because I was so dehydrated. I’m so frustrated myself!
What a jerk!!!! I’m so sorry that you are suffering!
I hope you eventually find an answer, thinking about ya. Sending ❤
Thank you so much!
Funny, yeah? Faced with a barrage of tests we first fear what they may discover and then we get ticked off when they are inconclusive or show everything is OK. “I paid good money for that test, dammit, and I want it to show something wrong!” I’m booked for a colonoscopy next month so I have to work up a new routine. Last time I waited until I was on the table before asking the Doc if this wasn’t a little excessive for the tooth whitening therapy I had signed up for. When asked if I was ready to go under I sat up, put my hand to my brow and declared “I shall lie here and think of England.” Turns out the Docs at my place don’t have much humor. I’ll work up a new schtick by October. Anyway, hope you feel better and that somewhere along the way you get answers to your questions and comfort for you concerns.
You clearly have the wrong doctors.
I know, right? What could be funnier than a colonoscopy?
I can’t think of anything.
I’ve had similar issues. I can’t eat or drink anything with yeast. I love things made with yeast, but feel better when I don’t indulge. I’m also sensitive to different types of oil. I’m fine as long as I make all my own food, but anything processed or store/restaurant bought means pain and stomach bloating. But it’s not realistic to avoid all those delicious treats forever. I hope you get some answers. Be kind to yourself! 🫂
Thank you! You too!
I completely understand the anger, frustration, and big bag of emotions. I hope you get answers and feel better soon.
Thank you so much!
Feeling your frustration, Rachel (praying for you). And wishing you a Shana Tovah!
Thank you!!!!
You have my sympathy. I have a history of intestinal blockages due to having had extensive surgery 20 years ago for colorectal cancer. I have to avoid fiber. No nuts and no food with more than 2 grams of fiber per serving. I do not suffer pain unless I get a blockage. I really hope they will find answers for you and a regime that can keep you pain free.
I’m so sorry! It’s amazing how many people are going through difficulties we don’t know about.
I stick to my low fiber diet and so far it seems to be working. I will do a lot to avoid ending up in hospital with a blockage! Best of luck to you with your issues.
Best of luck to you too!!!
That physicians all too often fail to respect the feelings of their patients is particularly painful for abuse victims. It evokes the nightmare scenario of not being believed about the abuse, itself.
Exactly. Over and over again.
Hi Rachel,
Sorry it’s been such a while since I’ve been round. I’ve been focusing on my WWI research and blogging less often.
My 15 year old daughter has stomach issues including slow digestion or gastroparesis and another condition called Rumination Syndrome, which is actually classed as psychological and it’s where the food comes back up undigested like with cows.
Her gastroenterologist suggested she chew gum after meals which helps to speed up digestion and it has helped.
A friend of mine has collagen issues with her bowel I’ll try to remember to ask her. Have you tried joining a support group? I find they’re very good with nutting out the everyday living side of a chronic illness.
How is life for you going in general? You’ve read that we’re n lock down and I’m madly chasing vaccinations for my kids who are 17 and 15 as they’ve just become eligible but can’t find an access point. Very frustrating.
Zac is up on my lap.I call him the Demotivation Manager. It takes a bit of work to shift him, by which point I’ve decided it’s too much trouble and stay put.
Anyway, I hope you start feeling better soon.
Best wishes,
Rowena
I’m so sorry for what your daughter is going through! Best wishes for a quick recovery.
Thanks very much, Rachel.
In the light of the serious concerns you write so compellingly about, this might seem like a trivial thing on which to focus, but I don’t think your inter-species alter ego photographs have ever more perfectly captured your interior emotional state than these. Those two doggies are truly “with you.” Wishing you a better week. Stay strong, and continue to take strength and support from you little ones.
Thank you so much!
Rachel, I am so sorry you are going through all this. I wish you healing and hope in the coming year.
Thank you! Shana Tova!!!!!
I have a friend doing the FODMAP diet and he said it is crazy and doesn’t make sense. I know it is just a temporary restriction diet but it sounds difficult to follow. Have you ever looked into Chinese medicine? Maybe some Yin Yoga? Not sure how you would feel about that, but you may be surprised by some of the information. I hope you find relief soon.
I used to do yin yoga and I loved it, but it only makes things worse for my joints, unfortunately. FODMAP was ridiculous and I am thrilled to be done with it.
Argh, now that you mention it I think I mentioned Yin Yoga before and you mentioned that. Seems like it should have helped your joints :-), too bad. Perhaps then just acupressure or acupuncture? I always feel as if Western medicine just tries to address symptoms and not causes. Again, I hope you find relief soon!
Thank you!!!!
Oh Gosh, what a story. You know your pain is real, but when tests come back “inconclusive” or showing everything is “fine” you just want to give up. On the plus side I am impressed that you got support for the Ehlers Danlos. I hear that is not always understood by regular medical doctors. Here’s hoping for a better year!
Thank you! Fingers crossed!
There is never a post you write that doesn’t leave me learning about how similar our lives have been in so many ways and feeling as though I have a deeper understanding because I truly know from where you come. But, having said that…. I was truly blind-sided by the idea of how difficult it is to live within a body you can’t trust. I have been mentally banging my head on the same wall for a long time thinking that my doctor must think I’m a hypochondriac because I have all of these aches and pains that I mention which get ignored unless I repeatedly make an issue about them – which often results in an “it’s called old age” attitude. Thank you for validating for me that I are correct to say that “I think my doctor thinks I’m a hypochondriac” and keep searching until I find one who is willing to listen! I hope you find the answers you need for your own health – physically and mentally – as I too, know the toll of what you feel about your body takes on you! Blessings are being sent your way, and don’t give up the fight that you are worth it!
Thank you so much!
I hope you will find the answers you are looking for soon, Rachel, and that they will help you to feel better.
Thank you!
Good luck as you pursue solutions to your issues. Gastrointestinal problems are a tough one. Immune system/inflammatory causes are always high on the list, especially for women.
So interesting! Thank you!
I empathize. I’m also on an odd food journey—with different questions but similar puzzlement and lack of clarity. And I thank you for your candor. Hope you find answers soon.
Thank you! You too!
I’m really sorry for your past experience tho it’s happened to many people and I’ve witnessed a thing like that
Thank you.
You’re welcome dearest
Hugs.
PS: have you gotten any paw paws?
We have one paw paw fruit on the tree, waiting to ripen. Fingers crossed!