I appreciate this post so much, Molly! I was diagnosed with ulcerative colitis out of nowhere three years ago. It just so happened that in the days leading up to that, I had bought a trio of new cookbooks I could hardly wait to dig into. And when the news hit, I remember looking at them on the shelf wondering if I could stand to open them; if my diagnosis was about to upend my whole relationship to cooking, eating, and thinking about food. The history of disordered eating I had worked so hard to overcome came peeking around the corner—are you sure you want to eat that? Is it "good for you"? Is it going to cause ~*inflammation*~? It took time, but I eventually came around to the reality, as one other commenter here noted: this is an autoimmune condition and no amount of regimented eating is going to fix it. I opened the cookbooks, and while I would say I'm more careful about my health than I was before (I did completely cut out alcohol, for instance), I'm happy to say that food and I are still on very good terms. If you haven't already, I would highly recommend reading "The Book of Difficult Fruit"—excellent in its own right, and written by another food-lover with UC. Wishing you all the very best as you navigate this.
I was diagnosed with Crohn's at 34. I actually had NO symptoms at all and was encouraged to follow up with a GI doctor after an incredibly traumatic emergency splenectomy and c-section that ended in a stillbirth. I followed up with a GI doctor and had a colonoscopy afterwards because the surgeon had seen something typical of Crohn's while doing the surgeries. Lo and behold I was later diagnosed and still never have experienced any outward Crohn's symptoms. I wouldn't know I had it if not for having had surgery for other reasons. It's been such a confusing experience and so challenging to have this new knowledge of my body because of such a traumatic event. Almost three years later, I am still getting used to a new internal reality that I don't (thankfully!) experience any outward signs of. I am so grateful for the doctors I have found in the aftermath that have held first the traumatic experience of my diagnosis and for the biologic that is keeping me safe. Solidarity in the the processing of the surprises our bodies have in store for us. Thank you for writing this, it helped me to feel less alone!
I’ve gotten to a point where dietary prescriptions for disease make me FURIOUS (outside of celiac/severe allergies that sort of thing). It’s victim blaming, like saying if I’d just buy silicone bags instead of ziplocs, I wouldn’t have caused climate change. Good for you for listening to your body. I wish us all compassionate care and comprehensive health insurance 💗
I really needed this piece this week. Not UC or Crohn’s but I have insane inflammation in my stomach and esophagus from 20 years of uncontrollable acid reflux. I felt really really bad when the really kind doctors said “you need to clean up your diet” and I thought “what is wrong with it? What did I do wrong?” Lots of crying.
I was diagnosed with ulcerative colitis when I was 11 or so. By 13 my entire large intestine was gone and in its place I had a colostomy bag—and nothing has really been the same since ... except that for many of those young and even young-ish years, it was pretty easy and kind of exhilarating to fake it. It's gotten a lot harder. I always want to talk about what I've been through with this condition and all my altered anatomy (to date, a handful of other things have been removed), but I find it so hard. I find it very hard to write about my body at all. Somehow my "mouth" (pen, hands on keys) won't move that way. And it's always so surprising, animating, refreshing, healing, whole-ing, to see someone else so gracefully + stably able to do it. Maybe some day I'll get there. Maybe this is a tiny step. Thank you.
Molly, I really appreciated your commentary on why you went the medication route. I don’t have any personal experience with Crohn’s and UC, but I have a lifelong (I’m roughly the same age as you, I just turned 46) history of severe eczema (and asthma and allergies) that I have tried all my life to manage with diet and supplements. Long story short: it did not work, I suffer from lifelong disordered eating as a result, and it’s actually an autoimmune issue so no amount of elimination diets or supplements is gonna fix it for me. (Not saying that it wouldn’t for other people with eczema/asthma/allergies.) I’ve been on a biweekly biologic injection for a year and it’s amazing. Still working on healing my relationship with food though. That shit takes time.
As always, you write with beauty, honesty and humour - whatever the subject.
As well as the personal, this piece was an interesting glimpse into the differences between US and UK health care. In the UK you get the poop test in the mail post 50 but would only get referred for a colonoscopy if you have any symptoms or your test results show further investigations are needed. I wonder whether the more proactive approach in the US results in lower rates of bowel cancer? Also, in the UK, you don’t usually get a general anaesthetic for a colonoscopy - something I know from personal experience!
And yes, you are so right about how you can be treated by medical professionals based on your weight and ethnicity. I have experience of the former, if not the latter, and it can make everything so much more challenging to navigate.
I want to reiterate the comment below! So helpful. I have had a summer of urgency having been managing what I thought was fairly infrequent diarrhoea which started as the result of a cause of immunotherapy. It is most likely a form of colitis induced by the drug treatment. But I am only getting to that diagnosis after a year of not really noticing so much, to feeling unable to plan anything away from the house or workplace because I am a little unsure where the bathroom may be! I had a light bulb moment when I got refused entry to a small Scottish island medical facility because I urgently needed the toilet! I have to do something. Not there yet but I am hopeful now of confirmation of the diagnosis and some medical help to return life to some sort of normality. The stories themselves are funny in isolation but once your life is all about managing urgency daily it becomes less funny.
I think as menstruating women, diarrhoea can seem like a normal part of a monthly cycle and masks a lot when things get more frequent. Very helpful piece, 🙏
I have Crohn's Disease that went undiagnosed for ten years until I was well into my career teaching high school and very, very sick. It was made worse by the stress of my job, but I held on until multiple doctors essentially pushed me to leave teaching at large to save my life. I have been in and out of all the medications and healing "advice" from others, and ultimately realized that what was best for me was to manage stress, which meant not restricting any sort of food (which always triggered my ED tendencies anyway) and not trying to manage my disease "naturally". I am now mostly in remission and get infusions ever six weeks and colonoscopies once a year.
I say all this because I'm moved by an honest body conversation, especially regarding the isolating and sometimes debilitating world that invisible illnesses can put you in. I also appreciate a frank sharing of poop diseases because, my god, they can be a trip. Wishing you the best of luck as you navigate this diagnoses; it sounds like you've already got a pretty grounded handle on how to frame it and care for it amongst all the noise.
I appreciate this post so much, Molly! I was diagnosed with ulcerative colitis out of nowhere three years ago. It just so happened that in the days leading up to that, I had bought a trio of new cookbooks I could hardly wait to dig into. And when the news hit, I remember looking at them on the shelf wondering if I could stand to open them; if my diagnosis was about to upend my whole relationship to cooking, eating, and thinking about food. The history of disordered eating I had worked so hard to overcome came peeking around the corner—are you sure you want to eat that? Is it "good for you"? Is it going to cause ~*inflammation*~? It took time, but I eventually came around to the reality, as one other commenter here noted: this is an autoimmune condition and no amount of regimented eating is going to fix it. I opened the cookbooks, and while I would say I'm more careful about my health than I was before (I did completely cut out alcohol, for instance), I'm happy to say that food and I are still on very good terms. If you haven't already, I would highly recommend reading "The Book of Difficult Fruit"—excellent in its own right, and written by another food-lover with UC. Wishing you all the very best as you navigate this.
I was diagnosed with Crohn's at 34. I actually had NO symptoms at all and was encouraged to follow up with a GI doctor after an incredibly traumatic emergency splenectomy and c-section that ended in a stillbirth. I followed up with a GI doctor and had a colonoscopy afterwards because the surgeon had seen something typical of Crohn's while doing the surgeries. Lo and behold I was later diagnosed and still never have experienced any outward Crohn's symptoms. I wouldn't know I had it if not for having had surgery for other reasons. It's been such a confusing experience and so challenging to have this new knowledge of my body because of such a traumatic event. Almost three years later, I am still getting used to a new internal reality that I don't (thankfully!) experience any outward signs of. I am so grateful for the doctors I have found in the aftermath that have held first the traumatic experience of my diagnosis and for the biologic that is keeping me safe. Solidarity in the the processing of the surprises our bodies have in store for us. Thank you for writing this, it helped me to feel less alone!
I’ve gotten to a point where dietary prescriptions for disease make me FURIOUS (outside of celiac/severe allergies that sort of thing). It’s victim blaming, like saying if I’d just buy silicone bags instead of ziplocs, I wouldn’t have caused climate change. Good for you for listening to your body. I wish us all compassionate care and comprehensive health insurance 💗
I really needed this piece this week. Not UC or Crohn’s but I have insane inflammation in my stomach and esophagus from 20 years of uncontrollable acid reflux. I felt really really bad when the really kind doctors said “you need to clean up your diet” and I thought “what is wrong with it? What did I do wrong?” Lots of crying.
Thank you for this post. I scheduled my first colonoscopy for October. I was just pleased to discover at Seattle/Virginia Mason they have instructions for the Miralax prep: https://www.vmfh.org/content/dam/vmfhorg/pdf/legacy-vm/workfiles/procedure_prep/Miralax.pdf
I was diagnosed with ulcerative colitis when I was 11 or so. By 13 my entire large intestine was gone and in its place I had a colostomy bag—and nothing has really been the same since ... except that for many of those young and even young-ish years, it was pretty easy and kind of exhilarating to fake it. It's gotten a lot harder. I always want to talk about what I've been through with this condition and all my altered anatomy (to date, a handful of other things have been removed), but I find it so hard. I find it very hard to write about my body at all. Somehow my "mouth" (pen, hands on keys) won't move that way. And it's always so surprising, animating, refreshing, healing, whole-ing, to see someone else so gracefully + stably able to do it. Maybe some day I'll get there. Maybe this is a tiny step. Thank you.
Molly, I really appreciated your commentary on why you went the medication route. I don’t have any personal experience with Crohn’s and UC, but I have a lifelong (I’m roughly the same age as you, I just turned 46) history of severe eczema (and asthma and allergies) that I have tried all my life to manage with diet and supplements. Long story short: it did not work, I suffer from lifelong disordered eating as a result, and it’s actually an autoimmune issue so no amount of elimination diets or supplements is gonna fix it for me. (Not saying that it wouldn’t for other people with eczema/asthma/allergies.) I’ve been on a biweekly biologic injection for a year and it’s amazing. Still working on healing my relationship with food though. That shit takes time.
As always, you write with beauty, honesty and humour - whatever the subject.
As well as the personal, this piece was an interesting glimpse into the differences between US and UK health care. In the UK you get the poop test in the mail post 50 but would only get referred for a colonoscopy if you have any symptoms or your test results show further investigations are needed. I wonder whether the more proactive approach in the US results in lower rates of bowel cancer? Also, in the UK, you don’t usually get a general anaesthetic for a colonoscopy - something I know from personal experience!
And yes, you are so right about how you can be treated by medical professionals based on your weight and ethnicity. I have experience of the former, if not the latter, and it can make everything so much more challenging to navigate.
I want to reiterate the comment below! So helpful. I have had a summer of urgency having been managing what I thought was fairly infrequent diarrhoea which started as the result of a cause of immunotherapy. It is most likely a form of colitis induced by the drug treatment. But I am only getting to that diagnosis after a year of not really noticing so much, to feeling unable to plan anything away from the house or workplace because I am a little unsure where the bathroom may be! I had a light bulb moment when I got refused entry to a small Scottish island medical facility because I urgently needed the toilet! I have to do something. Not there yet but I am hopeful now of confirmation of the diagnosis and some medical help to return life to some sort of normality. The stories themselves are funny in isolation but once your life is all about managing urgency daily it becomes less funny.
I think as menstruating women, diarrhoea can seem like a normal part of a monthly cycle and masks a lot when things get more frequent. Very helpful piece, 🙏
Oh, I so appreciate this piece, Molly.
I have Crohn's Disease that went undiagnosed for ten years until I was well into my career teaching high school and very, very sick. It was made worse by the stress of my job, but I held on until multiple doctors essentially pushed me to leave teaching at large to save my life. I have been in and out of all the medications and healing "advice" from others, and ultimately realized that what was best for me was to manage stress, which meant not restricting any sort of food (which always triggered my ED tendencies anyway) and not trying to manage my disease "naturally". I am now mostly in remission and get infusions ever six weeks and colonoscopies once a year.
I say all this because I'm moved by an honest body conversation, especially regarding the isolating and sometimes debilitating world that invisible illnesses can put you in. I also appreciate a frank sharing of poop diseases because, my god, they can be a trip. Wishing you the best of luck as you navigate this diagnoses; it sounds like you've already got a pretty grounded handle on how to frame it and care for it amongst all the noise.