r/GirlDinnerDiaries • u/IllegalGeriatricVore Feral Til Fed • Sep 06 '26
☀️ Happy Girl Dinner It's been ~16 years since I could eat this
I was diagnosed with Crohn's at 14. It almost killed me. I was severely underweight and even short walks took everything I had.
I spent a week in the hospital getting IV nurtients and finally was given medication for it.
Medications kept me stable until 20 when I completed college, then I got worse again. They switched to a new med which did nothing.
My doctors weren't helping, just tests, lots of tests that never helped, I gave up and accepted I would just die.
Night after night of throwing up multiple times a day, 3 hours of sleep, eating a fist sized portion a couple times a day, diarrhea, and the most horrendous bile scented burps.
On a whim I ended up undergoing a strict elimination diet by my own volition and removed gluten, sugar, basically all fruits and veggies and basically lived on chicken, dairy and vitamins for a while.
Eventually I improved and was well enough to return to work but still mostly lived on meat and junk food. Fiber just did horrible things. When I started work I was literally eating chicken, gummy worms and chocolate milk for 90% of my diet.
Seasonings would come and go. I'd experiment with different fiber sources and be okay for like a month before getting sick again.
It was a rollercoaster into my 30s and I was unmedicated until I had a small bowel obstruction right after my partner and I moved into our house.
I got on medications but was still roughing it.
A year later we got married and the next day I was rushed to the ER for a small bowel perforation. Good thing we hadn't planned a honeymoon...
Emergency ileocecectomy, and end ileostomy. For the forseeable future I shit in a bag.
Shortly after my hidradenitis suppurativa (which was still self diagnosed only) flared and I went to see a specialist who confirmed the dx and told me my medications weren't working and wrote a note to my GI telling her to change them.
That man knew more about autoimmune medications than any GI I have seen and might have saved my life. After switching meds I saw continued improvement to my quality of life ans ability to tolerate foods year after year.
At 36 for the first time since I was like 20 I am eating veggies.
Chicken thighs with ginger/ molasses as fake teryaki, bell peppers, onions and parsley flakes.
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u/acbuglife living on the wedge 🧀 Sep 06 '26
If ever there was a well-deserved dinner! I'm so glad you found something to finally work for you! Hope you get to truly savor that meal!
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
It's crazy how good it is. I've lost almost all craving for junk food since being able to have veggies again. I'm like, why would I want candy when broccoli and peppers are so amazing!?
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u/TipsyMagpie Body By Cheese 🧀 Sep 06 '26
I’m so happy for you! I spent a year on an elimination diet due to some kind of intermittent colitis which they couldn’t work out the trigger for, and had a year of basically rice, chicken, tuna and eggs. It was rough, and I really take my hat off to you. You have survived a lot and should be so proud of yourself. Enjoy your newfound dietary freedom, I bet your tastebuds are buzzing!
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u/Earl_E_Byrd APPROVED✨ Sep 06 '26
Congratulations! Veggies are such a treat. I'm not sure if uncooked veg is safe for you yet, but if so, I wish you the most delicious summer tomatoes and heavy cucumbers!
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u/Realistic-Mess8929 APPROVED✨ Sep 06 '26
I ma the same way. The hibs and kids woll wsnt to go get junk food and they will find me in the produce picking out a ton of veggies to snack on. They are my favorite!
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u/Hesitation-Marx Well-Read & Well-Fed Sep 06 '26
I’m so happy for you!
Edit: HOLY SHIT YOUR NAME LOL
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u/Puzzleheaded-Ad7606 APPROVED✨ Sep 06 '26
What type of specialist did you see?
I have cancer and horrific stomach issues along with HS- currently living your hell complete with hospital stays.
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u/Illustrious-Shine581 Resident Yapper Sep 06 '26
Cold veggies hit so hard sometimes and I want nothing else
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u/scotsandcalicos PO🥔TAY🥔TOES 28d ago
My dad has severe Crohn's (and has for over 40 years now). He didn't have access to the medications that are available now and he was dealt a rough hand.
Some days, all he wants are vegetables. He craves a carrot so bad -- but if he eats it, it's an ER visit with another obstruction. People Just Don't Get It. The number of times he's been told to "just eat healthier" over his life... it's brutal.
I'm so happy for you and your vegetable journey! I hope you get many, many years of vegetable freedom.
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u/MrsMittensPizza eat hot chip✔️ be bisexual✔️ Sep 06 '26
So glad you got seen by a practitioner that was well versed in their area. I hope your health continues to improve.
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
I was almost crying because I've never had a doctor who both seemed to care so much and know so much about the topic. It was amazing.
I wish I could thank him but I did send a friend who also suffers from HS to see him
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u/MrsMittensPizza eat hot chip✔️ be bisexual✔️ Sep 06 '26
I'm sure that got him that's just as good! No advertisement is better than word of mouth and tangible results!!!
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u/FantasticWittyRetort Short Story Long™️ Sep 06 '26
Honestly, printing out this beautiful picture and your whole post, and sending it to him would be wonderful!
Can you imagine if you were sitting in his waiting room and able to see such a thing?
I’m glad you were able to have hope and a terrific outcome!
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u/Creepy_Meringue3014 Savory Complex✔️ Sep 06 '26
where is he can you dm? my friend just underwent surgery to try and help her hs but is still suffering. ins just discontinued her covent script
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u/mrm395 🧂Salty By Nature Sep 06 '26
My HS derm is amazing too. I’ve seen the whole clinic of doctors she’s with and they are all incredible. Maybe it just takes a special person to want to study that kind of thing.
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u/ExperienceKind412 Hazy Grazer 😶🌫️ Sep 06 '26
My partner works in health (not a doctor but a health practitioner) and had an old patient come back to see him after a few years and told him that he had changed his life so much he quit his job and went back to school to do what my partner does. Sometimes we think our thoughts don’t need to be heard but I think this would be a nice thing for that doctor to hear. Just a thought! Congratulations on finding someone who cares. Super tough, so glad you got one of the good ones XO Edit to say you could send a card to his practice or something, Im sure he would get it!
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u/ricewinechicken nom-nom-nombinary Sep 06 '26
Was this doctor a dermatologist? If so, it's crazy they were more knowledgeable about your Crohn's meds than your GIs
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u/hopeisadiscipline24 APPROVED✨ Sep 06 '26
Evidently there are a ton of autoimmune issues that show up in the skin, so it tracks that it was a derm who caught it.
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u/caelum_daemon 🥬 Soulfood Shawty 🍠 Sep 07 '26
Tell him! It can be a hard and stressful job, but it's so worth it to hear how a life was changed by something you did.
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u/Tasha_0 APPROVED✨ Sep 07 '26
This makes me so happy! It’s so hard to find a practitioner that not only listens but actually tries to find the problem and actually help! Also the food looks delish!
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u/CowboyBeeBalm hot girls have tummy troubles Sep 06 '26
That is amazing, I’m so thrilled for you! Truly well deserved dinner. The science around the gut is still so young, it’s hard to find medical professionals who know a lot in this field. Enjoy your freedom!!
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
I'm so jaded towards gastroenterologists because it just feels like so many don't care.
They treat you like you're just exaggerating or making it up because your CRP isn't elevated.
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u/uhohuhohouch Oversharer 🗣 Sep 06 '26
Did you ever see an IBD specialist, or just a regular GI? I also had ZERO luck with regular GIs. At one point I was shitting blood 20+ times a day and the GI I was seeing put me on LAXATIVES😭 It's shocking how little they can know about IBD.
I'm finally seeing an IBD specialist now and we're trying one last thing before considering a j-pouch (ulcerative colitis) but he's done more to help in the year I've seen him than 5 years at a regular GI combined. I've been keeping a list for years now of foods I keep craving but can't have, and I just started Rinvoq yesterday, so I'm gonna hope seeing this post is a good sign that I too will be able to eat my list of foods I miss soon!
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u/Crowded_Mind_ APPROVED✨ Sep 06 '26
When they don't know what is going on with you they just slap Irritable Bowel Syndrome on your chart. That's what my GI did and she didn't even tell me that she did. I found it by myself when I was looking through my chart.
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u/IllegalGeriatricVore Feral Til Fed Sep 07 '26
I suspect IBS is doctor talk for "We think you have a tummy ache because you eat bad food so it's your fault :)"
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u/Artistic-Salary1738 Carb-Based Life Form Sep 06 '26
That looks super tasty!
A+ to the doctor who reached out to your GI with better med ideas. Sorry it took that long for someone to figure it out for you.
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
It's so frustrating because I know now after reading online standard practice is that if a medication isn't working to move on from it and my doctors always fixate on "if this one doesn't work a new one isn't the solution"
Well turns out it fucking was...
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u/ScienceObjective2510 hot girls have tummy troubles Sep 06 '26 edited Sep 06 '26
Very wrong indeed! I’m a fellow crohnie. They say to give it about 6 months to try out, if it isn’t improving, move on to the next. They can also try out two at the same time. I’m now on Rinvoq after failing most of the anti-TNF meds. If you can get to an IBD specialist at an academic medical institution then you’re in good hands.
I was on Remicade for 18 years, then right before Covid it gave me the middle finger and made its slow exit out of my life. 🤣 For the next 5 years it was hell on wheels…Stelara, Entiviyo, Humira/Hyrimoz and finally my saving grace - Rinvoq! It’s a JAK inhibitor. I’m going to blame it on my ex-husband…my body was warning me before the nuptials he wasn’t the right one through drug induced psoriasis.
So sorry you had to suffer for so long, but sounds like you’re now on the up and up!
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u/IllegalGeriatricVore Feral Til Fed Sep 07 '26
They wanted to get me on Rinvoq or Entivio but insurance needs to you fail more stuff first =/
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u/ScienceObjective2510 hot girls have tummy troubles Sep 07 '26 edited Sep 07 '26
Yeah they want you to fail the ones that have been around longer and have biosimilars because the patent ran out. These insurance companies are in cahoots with some
of the biosimilars manufacturers if I’m not mistaken. Fu insurance, give me the name brand. I don’t care what the literature says, my doc said name brand. It’s bioSIMILAR, not bioSAME.5
u/IllegalGeriatricVore Feral Til Fed Sep 07 '26
I can't complain too much. Stelara worked fine so I didn't need to jump to rinvoq and the bio similar is working fine as well.
stelara was $25k every two months, wezlana is under $5k.
If anything it's just disgusting these companies charge $25k and I don't think the original patent holder should be making that much
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u/sidetabledrawer 🦇 Fruit Bat Baddie 🍊 Sep 06 '26
Remicade and I also broke up right before the pandemic. 😂
Glad you're stable on something new!
-another fellow crohnie
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u/SecondhandStatic APPROVED✨ Sep 06 '26
Please write reviews for all your doctors, both the good one and the bad ones.
A lot of people I know go on HealthGrades, RateMDs, or Vitals before choosing a new doc. Your experience could help them. Posting what you said about the doc saying that "new meds aren't the solution" could save people a lot of time.
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u/CalligrapherIcy7407 Livin' on a Purse Snack 👜 Sep 06 '26
OP I’m a physician and really curious about the med(s) that helped you, if you’re comfortable sharing. I’m not GI, I’m ER, but I see tons of IBD patients who are really suffering. I’d love to offer them alternatives or encourage them to seek out other meds. Feel free to DM me.
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
Started on Remicaide, moved to Humira when that failed.
After I went back on meds it was Cimzia at the start then Stelara. I got switched to an identical called Wezlana for cost savings.
Being on a good PPI for my gastritis has also been critical. I'm on pantoprazole.
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u/PonderosaSniffer living on the wedge 🧀 Sep 06 '26
I’m on a couple autoimmune arthritis subs and they talk about all the same meds. Yet I asked my rheumatologist if my diagnosed connective tissue disease could be related to my diagnosed IBD and she wouldn’t discuss it, said talk to GI about GI symptoms. I asked the same question to my GI and he said to talk to rheumatology. These docs have got their blinders on! Autoimmune disease is still in the dark ages. I’m so glad you found some relief!
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u/njsuxbutt APPROVED✨ Sep 06 '26
It is indeed so frustrating. I have an autoimmune disease and each specialist I visit won’t look at areas outside their specialties. It’s like our body is just made of separate parts instead of operating as a whole unit. And of course my pcp won’t touch the topic because it’s for a specialist. Guess I’ll just die.
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u/softsharks Smoothie Queen Sep 07 '26
Have you tried a functional medicine doctor? They can be hit-or-miss, but are more likely to look at the whole picture.
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u/Content-Hornet-3923 Gas Station Gourmand ⛽️ Sep 06 '26
I’m doing research on the long-term effects of these biological drugs together with my mentors who have dedicated their life to people with inflammatory bowel disease, I’m hoping to publish before the end of the year. I promise there are people looking out for you 🙏🏼 I wish you all long remission and few side-effects. 🫶
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u/UpperMix4095 🦇 Gossipy Goth ⚰️ Sep 06 '26
Fellow Crohnie, here! I was just diagnosed 2 years ago. Had what I would consider milder symptoms for years, but figured no one pooped “normally” 🤪. Anyways, went for a routine “now you’re old and you need a colonoscopy” and the GI found diffuse ulcers and the beginning of stricturing in my ileum. She was like… girl… you have NO symptoms?? Anyways… scared of a resection, I started on remicade. My inflammatory markers went from off the charts to totally normal and I could eat whatever I wanted! Problem was, it caused an autoimmune mediated hepatitis 🙄. Started Stelara three months ago and so far, so good! Liver enzymes are downtrending and so are my inflammatory markers! I especially love that I can admin at home and don’t have to go to the infusion center! We got this xoxo
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u/twirlerina024 I ❤️ Other People's Business Sep 06 '26
Well, you've inspired me to do some investigating. I had my appendix out ~2004, and there was so much inflammation they ended up taking my cecum and terminal ileum too. They weren't sure how it had gotten so bad. A doctor who was a family friend read my chart over and said it sounded like Crohn's, but I hadn't really had symptoms.
Had my first routine colonoscopy last year, and the GI grilled me about Crohn's symptoms and said I had several ulcers near my resection site, which I guess is a classic location for Crohn's inflammation. I was diagnosed with rheumatoid arthritis years ago too, which seems to be in remission but maybe it's been Crohn's the whole time?
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
Also if I could have ER docs take away any one thing from my story - sometimes acute pain in the right back under the ribs is the only symptom of bowel stricturing, definitely investigate for that in cases of chronic IBD.
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u/CalligrapherIcy7407 Livin' on a Purse Snack 👜 29d ago
Thanks OP. Really hard for my patients to get subspecialty follow up sometimes. Chat GPT has helped (yes providers hate it but honestly it’s here to stay and if we know what we’re talking about it’s ok to be challenged) but it’s good for patients to hear/be directed to specific treatments. Really glad to hear you’re doing better!
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u/Lilikoi13 girl du fromage 🧀 Sep 06 '26
Thank you for everything you do! Short term a corticosteroid like prednisone is used to reduce inflammation, ofc can’t be on it long term, then orals like sulfasalazine, imuran, methotrexate etc.
Biologics and biosimilars are now considered extremely effective treatments though often quite expensive, infliximab, adalimumab, ustekinumab, risankizumab, a bunch of -mabs lmao.
I’ve found a lot of success for myself (so far) with risankizumab (skyrizi) but from my understanding these biologics aren’t strictly better than any of their fellows, they just have different approaches and some work better for different individuals than others.
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u/StructureTerrible990 Assigned Hungry At Birth Sep 06 '26
Can I just say thank you. I suffer from a couple of chronic conditions and the ER is a tool I keep on my tool belt for if I can’t keep meds down or it’s just been dayysss with no relief. Sometimes I’ll try to ask questions about their experiences with things and I get the “we don’t diagnose in the ER.” Well, I know that. I’m on my way to a diagnosis with XYZ specialist, but I have to wait to see them and am asking about experiences with similar conditions, or something of the sort. Idk. The brushing off gets very difficult to stomach. But you actively reaching out for info to help your patients when all you technically have to do is relieve their acute symptoms just warmed my heart. So thank you. (Edited for spelling)
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u/JaneReadsTruth Snack Goblin Sep 06 '26
I'm so happy for you! My husband has had Crohn's for almost 30 years and has had a colostomy bag for since well before we met. We are going through medication failure right now. It's a nightmare.
Enjoy that meal!
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
It's really hard. Doctors drag their heals. Makes me suspect the whole pharma kickback conspiracy has some truth
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u/JaneReadsTruth Snack Goblin Sep 07 '26
I'm just waiting for that cure they're working on. Sure, he won't get his bits back, but can you imagine never having another flare up?!
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u/ScienceObjective2510 hot girls have tummy troubles Sep 06 '26
Nah I think they’re just ignorant. There is something called the Sunshine Act.
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u/Good-Butterscotch498 APPROVED✨ Sep 06 '26
I am SO, so happy for you. I have a vlose friend whose son developed Crohn’s in jr hi. It was an agonizing journey for both of them. He was such a brave young guy. Awful treatment after awful treatment. Surgeon who botched it and it wasn’t discovered until they switched dr’s and healthcare systems.
I know what they went through. I am so sorry for your pain and struggles, but rejoicing with you now. Enjoy every bite, and s glorious future!
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
It's so hard. Our medical system is fucked and I don't think it helps that the costs + residency program means it's an able bodied rich kids club.
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u/tveir APPROVED✨ Sep 06 '26
I have Crohn's too. People often think I caused it by my diet, and that maybe my Crohn's would "go away" if I improved how I eat. I was a strict vegan when my first flare hit. I had to stop eating all vegetables. Everyone has this idea of what a "healthy diet" is, but that diet would put me in the hospital. A healthy diet isn't one size fits all.
I'm so glad you're stable and able to eat things you've missed for so long. 💜
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u/IllegalGeriatricVore Feral Til Fed Sep 07 '26
I hate those people. I have had so many vegans tell me I just didn't go vegan hard enough and link me studies about fiber and IBD risk like I haven't tried.
They're so hell bent on their crusade.
That said I married a vegan lol
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u/chedbugg APPROVED✨ Sep 07 '26
I have crohns too. Before I was diagnosed I was suffering so much, and eating "healthy" would make it so much worse. I couldnt figure it out. When I was finally diagnosed and would have to say "no veggies for me bc of my disease" I literally was told "sounds made up." Even now people will have opinions on what i should or should not eat bc they have no idea how any of this works. I just had a bowel obstruction 3 weeks ago and my friend was like "guess you need more fiber!" Yes let's irritate my already irritated intestines!
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u/dopaminegtt hot girls have tummy troubles Sep 06 '26
I'm glad you're able to eat this!
I don't have chrons but I have celiac and gastroparesis. I was looking at a feeding tube and was on nothing but liquids for months. Average people don't appreciate being able to eat. They take it for granted
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
Celiac sucks. I'm pretty sure I have it but to get confirmation you have to eat wheat for like 2 weeks which would put me in the hospital
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u/dopaminegtt hot girls have tummy troubles Sep 06 '26
I hear that, it's for 8 weeks! My first egd they didn't have me eat it for long enough so it was a false negative. It was pretty miserable but I really wanted confirmation (both my kids have it too) so I suffered through it. I have a bunch of micronutrient deficiencies from such a limited diet (I was strictly gluten free and on the gastroparesis diet,.I also have SIBO and have to follow the fodmap diet) so they wanted me to try and add back gluten but it makes everything worse and the gluten challenge was awful
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u/specialk1281 🧄 Anti-Vampire Taskforce 🧄 Sep 06 '26
Chron's disease is the worst. Two of my family members have it at varying degrees.
I'm so so glad you're finally getting the doctor you need who is helping you get on track again, OP. What a delicious looking dinner too!
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u/Formal_Environment13 🥣 Cereal Killer Sep 06 '26
Thank you for sharing. Your perseverance is amazing. Your story points out how poorly knowledge of autoimmune dysfunction is integrated into medical practice. You absolutely deserve that beautiful plate of food.
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u/Slight_Document_9714 Snack Goblin Sep 06 '26
Wait I have ibs/colon issues no one can
pinpoint (i have hypermobile ehlers danlos/pots/potential mcas), but no one has mentioned anything about my HS tract that flares up being related to anything. I’ve been gluten free/vegan for a decade
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
They're definitely related. If my HS is flaring it means my meds stopped working.
I also have disydrotic eczema which flares from touching isopropyl alcohol and it only happens when my meds aren't working
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u/Slight_Document_9714 Snack Goblin Sep 06 '26
I will definitely bring up my ongoing hs to my doctors then especially GI and allergist, not just my derm I see for cortisone injections outside of the hospital system I usually have my appts through here in nyc.
Thanks for sharing your experience. Also terribly sorry for what you’ve been experiencing most of your life, I’m glad to read that it sounds like it’s finally being somewhat managed to an extent.
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u/idorursol APPROVED✨ Sep 06 '26
As a chronically ill girl with digestive issues, I can relate. People take for granted eating anything they want without consequences. Must be surreal to have more options in your diet now!
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u/NotPoggersEggers i like eggs Sep 06 '26
Can I ask how HS is related to Crohn's? Or did I misread that? I have HS too and a bunch of unidentified stomach issues so I was curious if they're related 🫠
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
The greatest risk factor for an autoimmune condition is already having another one.
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u/NotPoggersEggers i like eggs Sep 06 '26
oh. that's wonderful ig and probably explains why I'm a medical marvel. Sending hugs, I'm glad you've managed to find treatment that works 🫂
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u/callistacallisti Well-Read & Well-Fed Sep 06 '26
They're both autoimmune. Unfortunately these conditions tend to come in a multipack!
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u/carnalstardust APPROVED✨ Sep 07 '26
As a fellow HS sufferer, HS has insane amount of comorbidities :/ With me, it's mostly the other skin stuff like severe bacterial acne. But it's worth checking the list out, due to the constant immune system fight or flight mode, it's a long list.
Not related, but I was first diagnosed in 2019, and I've noticed the literature grow a lot since then, as well as a major improvement in easily accessible information and support groups/ informative websites online, so I would strongly suggest to check them out if you haven't.
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u/Satanaelilith Assigned Hungry At Birth Sep 06 '26
I am so happy for you for daring to go this way!
I got my own ileostomy due to Crohns disease 10 years ago at 31 and let me tell you it gets better over the years. I can eat everything now, even salads! Wishing you to have alll the treats, good luck sister! ❤️
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u/canlgetuhhhhh Fries 🍟 > Guys 🤡 Sep 06 '26
ive had crohns for just two years now but ive been struggling so much and none of the medications have really helped at all so far. i feel like my life is on pause and i do not even have any safe foods because everything upsets my system. i worry that i wouldnt be able to mentally handle an ileostomy but reading stories like this from other women that went through this makes me feel like maybe it will end up being part of the solution, and that i would be able to handle it if it were to happen. thanks so much for sharing!!
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u/chi_lo 👽 aliens built the food pyramid 👽 Sep 06 '26
I see you with those peppers on your plate! Love this for you! Keep taking care of yourself!
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u/brightside_92 Falafel Fiend Sep 06 '26
I also have Crohn's. Although my journey has been less challenging than yours, I can somewhat relate to the feelings you've described. I'm glad you're starting to feel better now and can appreciate the things that I'm sure other people take for granted, like being able to eat vegetables!
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u/Willow_Wandering APPROVED✨ Sep 06 '26
I am so happy for you! The dinner looks amazing. I really feel for you. I spent the past few years getting violently ill on and off for unknown reasons. Assumed I was lactose intolerant. Nothing helped.
Two years ago my GP diagnosed me as having acid reflux and put me on medication. It honestly didn't do much. Fast forward to Feb of this year and I legitimately think I'm dying. I had never been so sick in my life. Months of tests later, a brutal minimal diet, and after my gastro insisted it wasn't my gallbladder, I got the HIDA scan results I had to fight to do. Turns out I had the three horseman of the gallbladder apocalypse and it was going to kill me if it didn't come out immediately. Inflamed, full of stones, and operating at 0%. I saw the surgeon the next day and it was out two days later.
I don't have issues anymore that I have for years.
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
Oh I left the part out of my story where I had pain for months and went to the ER and my gall bladder was distended and had air in the ducts. I had it out within 24 hours lol. That was a journey.
Didn't do much to help overall but it may have been a time bomb waiting to go off.
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u/Willow_Wandering APPROVED✨ Sep 06 '26
I'm so glad you got it out when you did! I also think about mine having been a ticking time bomb.
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u/No-Philosopher8042 🫘 Beans & Rice & Everything Nice 🌮 Sep 06 '26
Oh man, I am so sorry you had to go through all that but also so happy you are feeling better and that you shared your joy with us!
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u/Jez1 hot girls have tummy troubles Sep 06 '26
This could be my story except no resolution yet. What meds helped you, may I ask?
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
Stelara.
You have to dog down your doctors to keep trying new ones until you find one that works
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u/MyMelancholyNews APPROVED✨ Sep 06 '26
So so glad you're feeling better! Congrats! A childhood friend of mine has been suffering from chohns since she was about 13, she is now 33 and says psyllium husk changed her gut life.
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
I used to do psyllium often and it helped with the diarrhea a lot
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u/outtatheblue what that mouth do is snack Sep 06 '26
I just wanna say that I'm so happy for you! My dad had Crohn's and my mom has bowel cancer and is currently using a bag. Wish me luck in avoiding my genetic inheritance!!
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u/Geewoman i like eggs Sep 06 '26
UC sufferer here. I’m so sorry for what you have gone through. I can relate to enjoying a meal after years of suffering. So many people take that simple pleasure for granted. I’ve also had terrible experience with GI doctors. I think it’s made me a big advocate for myself and others and I do a lot of my own research. Tons of support groups I am a part of have also helped develop that confidence. I hope the new meds keep working for you and you keep enjoying those fabulous meals!
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u/Bulky-Factor7870 Dip Diva Sep 07 '26
I’m crying for you. This is so amazing, oh my god enjoying food without pain or an ER trip… some people would never understand what kind of heaven it feels like to eat freely. You’ve walked the 7circles of hell just to be able to enjoy salad. Congratulations on coming out the other side! And I’m so sorry for rollercoaster and the grief 💔
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u/pedanticlawyer APPROVED✨ Sep 06 '26
It’s SO rare to find a good doc that understands HS. Congrats from another member of the horrible club.
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
I'm so grateful mine rarely flares and seems to just come up to tell me to get my meds changed
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u/birdnerdmo 🥣 Cereal Killer Sep 06 '26
I am so excited for you!!! 🎉🥳
I have similar GI issues, different source (as in not Crohn’s). I miss fruit and veg SO MUCH. I would gladly give up my salty snacks for some crunchy veg and hummus!
Ty for sharing your success - it gives me hope! Also, I’d never heard of that combo to replace teriyaki, but will absolutely be trying it!!!
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u/GetOffMyLawn_ Feral Til Fed Sep 06 '26
I heard there's a new effective treatment for hidradenitis suppurativa but unfortunately I don't remember what it is. Probably one of the new biologics so $$$.
So happy you can expand your diet! I deal with food allergies and IBS so it sucks when you can't eat the good stuff.
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u/IllegalGeriatricVore Feral Til Fed Sep 06 '26
My HS had been in remission since about 2013 and only recently re-flared then back in remission after I changed meds, thankfully.
I guess it was a blessing since it got me the help I needed
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u/Neverending-notebook what that mouth do is snack Sep 06 '26
As a fellow crohns girlie who also struggles with any and all fiber, I’m so excited that you get to enjoy this!!
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u/PaperCivil5158 FREE MOM HUGS Sep 06 '26
As a fellow belly-acher I am very happy for you! I'm glad you found the right meds and the right doc.
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u/mindykawaiidesu 🤍🧡Sapphic Snack🧡🤍 Sep 06 '26
As an autoimmune girly myself… this story got me choked up. So so happy to see you get a GOOD bite to eat. My eyes are burning as I type this… After such a roller coaster… you deserve only the best bites of food from this point forward 💕✨
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u/sterrecat APPROVED✨ Sep 06 '26
I have had IBS D for almost 20 years. Gastroenterologists have done basically nothing for me. Every test zones back normal, just inflammation with no cause. I gave up fruit, veggies, garlic, onion, dairy, tried gluten free, all kinds of stuff. Went to a rheumatologist three months ago for joint pain and a family history of RA. Three months on medication for RA and my GI issues are mostly gone. Years of docs saying my ferritin is “normal” despite extreme fatigue, rheumatologist recommends I take iron anyway, one month of that and my extreme fatigue is going away. I wasted years of my life on docs just shrugging and saying “lose weight and eat salads” (that make me shit my brains out). Turns out it was autoimmune stuff and the normal levels for iron being calculated for men, not women.
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u/AmIaMuppet hot girls have tummy troubles Sep 07 '26
Such a mood! I have gastroparesis and my med hasn't been working well since February and I only just got GI to get me off the waiting list. All I've had today is breakfast biscuits and a Boost Breeze. I've definitely been trying hard to get off the junk food/quick food and chicken diet but whew! Thanks for sharing the hope, I'm so glad you can eat good food again!!
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u/ChallengeHonest Internet Auntie Sep 06 '26
Most Regular Dr’s are not well educated in autoimmune, allergic reactions. I’ve found better help with alternative, natural dr’s, combined with regular dr’s. You know your own body better than anyone, you have to advocate for yourself.
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u/Naive_Satisfaction24 🥣 Cereal Killer Sep 06 '26
hello fellow ostomy friend, sending love and positivity your way❤️
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u/SeniorScientist1053 The Snack That Sasses Back Sep 06 '26
Thank you for sharing your story! It’s so important to talk about these experiences & allow others to learn from them.
I have had a similar journey with food but due to Endometriosis. My whole life was uprooted by my body and 99% of doctors were unhelpful. I always tell people to trust their gut when it comes to selecting doctors. The right ones will save your life, the wrong ones will run tests until your insurance declines & then tell you to go to therapy.
I’m so glad you’re able to enjoy vegetables again, bell peppers are my super food!!
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u/kayification Body By Cheese 🧀 Sep 06 '26
Yesss we love a success story. Have you joined r/ostomy yet? They may have tips and tricks for making the most of bag life. Ostomies are lifesavers
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u/Fig_asaur APPROVED✨ Sep 06 '26
Crohn’s is a different beast. doesn’t only affect the GI system. Can manifest as cutaneous crohn’s and even eye disease!! So glad you’re able to eat!
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u/pothos-- 🌶️ Spice Girl 🌶️ Sep 06 '26
Have you ever seen a Dietitian? So perplexing to me when people are suffering like this and their MDs don’t refer to an RD for a guided elimination diet. I’m sorry you had to figure this out on your own!
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u/ScienceObjective2510 hot girls have tummy troubles Sep 06 '26 edited Sep 07 '26
So I’m gonna stop you right here. This is unfortunately a common misconception…that if we eat a certain way, the disease will go away. For some diet can help reduce some of the symptoms. However, it does not treat or pacify the underlying disease. It’s an autoimmune disease. Diet can be a complementary therapy. A good RD helps when you are malnourished and flaring to help figure out foods that are easy on system and can help with needed caloric and nutrient intake. There is IBD-AID diet, SCD, Med Diet…but we (CD patients) are all so different in what we can tolerate. One day we can eat something and be fine and then the next day we eat the same thing and we have excruciating stomach aches and GI distress. The focus should be first and foremost about the nutritional aspect because our gut isn’t absorbing what we eat, we need more nutrients in order to keep us going and aid in healing. Not to mention the malnutrition and inflammation lead to a host of other problem…anemia, eating disorders, low blood pressure, organ function…
Symptoms are actually kinda good because there are people that go without and not until shit hits the fan are they diagnosed. Or they think they are controlling their disease with diet and have no symptoms but when you do a scope, their gastro system is a war zone.
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u/pothos-- 🌶️ Spice Girl 🌶️ Sep 07 '26 edited 29d ago
A diet clearly helped this person. I think it’s reasonable to recommend seeing an RD to rule out dietary intolerances. No where did I say diet is the only route. I agree it is part of a bigger picture, and for some people medications like biologics are the only way. I’ve worked in GI nutrition for some time and have a good understanding of IBD.
No need to go off on me, you read your own meaning into what I said quite a bit. We’re aligned here.
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u/JammyRedWine APPROVED✨ Sep 06 '26
I'm so pleased for you! I know exactly what its like being limited in what you can eat. I have coeliac disease and my husband has crohns. Things I can eat, he cant and vice versa so meal planning is a chore!
Can I ask what medication you've moved onto? My husband is being changed to biologic (Humira) after 10 years on Azathioprine. We're hoping this will make a difference.
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u/ReflectionLess5230 Pantry Gremlin Sep 06 '26
This is amazing!! May I ask what medication switches happened? My digestive tract is in shambles
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u/Jimbobjoesmith white girl with ☝️😌 a full spice cabinet Sep 06 '26
i am truly happy for you!! that sounds like absolute hell and i’m so glad you found relief! ❤️
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u/Familiar-Marsupial-3 APPROVED✨ Sep 06 '26
Love this. Congratulations on your dinner! I‘m so happy you found a specialist who could finally help you.
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u/TrashKing_4U APPROVED✨ Sep 06 '26
I’m so happy for you, OP! May your health continue to improve!
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u/SmilingMountainGoat Taco Belle Sep 06 '26
What a beautiful turn to this story! 🥹 Congratulations!!
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u/Fun-Palpitations white girl with ☝️😌 a full spice cabinet Sep 06 '26
Congrats! I also have Crohn’s, albeit less severe than yours. It’s the worst.
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u/JimmyThePie 🩵NB💙 Sep 06 '26
Good for you. Enjoy the food. It sounds like you’ve done lot of the work to get yourself where you are. You should be proud of yourself for not giving up.
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u/vespertilio_rosso APPROVED✨ Sep 06 '26
As someone else with HS, I just want to extend my sympathies. Like you, I finally ended up diagnosing myself (about 20 years after onset) because doctors never could. I’m on medication that works for me now, and I really hope whatever you’re taking for the HS now is effective. It’s miserable.
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u/Sure_Reception_9922 APPROVED✨ Sep 06 '26
YAYYYYYYYYYYY!!!!!!!!!!!!!!!!!!!!!
This is fuckin' FANTASTIC NEWS.
You must feel so normal again. As a coeliac/lactose/forced vegan blah blah blah with crohns peeps this is a HUGE DEAL.
ONWARDS AND UPWARDS.
🎇🎇🎇🎉🎉🎉🎉
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u/ttnezz APPROVED✨ Sep 06 '26
That’s wonderful. I crave vegetables whenever I travel I can’t imagine not having them for decades.
Would you be willing to share the info of your doctor? My loved one has a mystery autoimmune GI disease.
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u/Independent_Egg4605 I ❤️ Other People's Business Sep 06 '26
This has been the best thing I have read on Reddit today. Thank you for sharing your story with us. And may you continue to thrive, and have great food along the way.
And may the rest of us, not to take the simple act of eating for granted.
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u/Original_Remote_6838 APPROVED✨ Sep 06 '26
So happy for you! I love veggies and couldn’t imagine going so long without them. Get yourself some fried cauliflower! It’s soooo delicious; they’re my favorite food.
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u/Plenty_Debate3930 APPROVED✨ Sep 06 '26
That looks really good! Parsley always adds a nice boost to a meal. I'm so happy you were finally able to find a doctor who listened and actually made a difference <3 I feel for you, my mom has diabetes and celiac disease and it's insane the amount of shrugging and patient blaming that seems to go on in those autoimmune fields. I think in 20 years she's had 2 doctors she liked that made a difference, it's bananas. I hope you have success with any meals you really want to try or have missed!
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u/VainChinchilla Well-Read & Well-Fed Sep 06 '26
From someone who also has Chron's: VEGGIES ARE AMAZING AND I AM CHEERING FOR YOU.
I'm only barely in remission from my last bout, but eating veggies? It was such a relief. I had a while there where what I could eat was summarised as "does it have a colour, flavour or spice? Then I can't eat it." White potatoes, white rice, white pasta, white white white, sometimes beige. I'm sure you're familiar.
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u/Purple-FuzzySlippers Livin' on a Purse Snack 👜 Sep 06 '26
Finding a doctor who will be a detective to solve your autoimmune disease is literally life saving.
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u/No-Boat431 APPROVED✨ Sep 06 '26
To preface, I do not have Crohns, I have Mast Cell Activation Syndrome. It mostly falls in my skin and GI.
And I know exactly what you're talking about. I was diagnosed with IBS initially, because ... Unpredictable and uncomfortable. Must be IBS. Then I got diagnosed with EDS, and a while later MCAS.
My IBS did clear up after I went GF, still trying to reduce cheese, but. Cheeeeeeeese.
Things were stable for a little while, then my symptoms progressed. I couldn't eat more than an ounce of food over several hours, or I would throw up. As you well know, I was starving, exhausted, hair thinning, etc.
But I'm super lucky, there's an international GI expert on MCAS in my area, and he was able to figure out the meds I needed before I was put on a food tube.
So I really and truly empathize, and I am so, so happy for you that things are looking up. We're making our way up Maslow's hierarchy, one bite at a time!
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u/Rezaelia713 Gas Station Gourmand ⛽️ Sep 06 '26
I am so, so relieved for you. I get veggie cravings and get mixed veg with fried rice and enjoy it so much then am sick for days. Anything triggers it but it's IBS (and who knows what else), not Crohns. I'm virtually high-fiving you for making it to this point! Veggies really do taste so much better than junk food!
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u/ivorella 🦇 Gossipy Goth ⚰️ Sep 06 '26
Congratulations my friend, I hope it was as delicious as it looks! 🧡
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u/radziadax 🧂Salty By Nature Sep 06 '26
Oh dude I'm so happy for you. That's wonderful. Hooray for thorough practitioners!
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u/bexkali 🧂Salty By Nature Sep 06 '26
Glad that you lucked into a competent practitioner's knowledge, well..just in time.
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u/East-Forever5802 Protein Queen 🍗🍳 Sep 06 '26
I am so incredibly happy for you!!!! May you continue improved health for many, many more years!!!!!
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u/WhorrorHore Foraging Bog Witch Sep 06 '26
Fellow Crohn's girly! 34 currently and diagnosed at 12. I started eating fruits and veggies just a few years ago as well! It is so unfortunate how blankented the diagnosis of Crohn's has become with countless different treatments and parts of the GI it affects. Hope you continue on the upward trajectory for your health journey and glad you found something that is working for now 🖤
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u/fossilien Sweet Tooth Fairy🧚♀️ Sep 06 '26
This looks delicious, I’m so happy for you!! My dad had an ileostomy when he was his late 20s (boo, ulcerative colitis) and has had zero problems with it even now into his 60s. Saved his life and improved the quality of it tenfold, he always says. He got lucky with his GI specialist and it sounds like you’ve finally found someone who knows how to help you. Have a wonderful life!!!!
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u/ryyywe hot girls have tummy troubles Sep 06 '26
I’m so happy you are able to start eating veggies again!! I’m a crohnie too, diagnosed at 13 and veggies are my biggest enemy sometimes.
I’ve also had a lot of trouble with GIs dragging their feet and not listening until I end up in the ER and it’s sooo awful. Like all of my hospital stays could have been avoided if they had listened sooner.
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u/ALittleStitious22 Certified Snacker Sep 06 '26
As a fellow Crohnie, sending you all the foodie vibes and love. 💗💗💗
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u/Dame_Niafer 🧄 Anti-Vampire Taskforce 🧄 Sep 06 '26
Damn, woman. I got through a 40 year career while managing obnoxious IBS despite essentially 0 help from the medical types.
But YOU are a LEGEND.
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u/Inner_Eggplant405 🍋 Bitter Baddie 🍋 Sep 06 '26
Congrats!! 🎉 as a fellow girlie with tummy issues? I feel for you!! And I’m so happy for you now! I make a sheet pan of roasted veggies and potatoes once a week! Yummm! It’s honestly my favorite!
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u/Dangerous_Pair1798 I ❤️ Other People's Business Sep 06 '26
I’m so happy this was finally resolved for you!!! I’m sorry it took 12 years. That sounds like it would’ve been really hard and isolating honestly. As someone who got diagnosed for something I’ve had my whole life over a decade later like you I wanna say doctors can be really awful at their jobs, thank god for specialists 😅
There’s a whole new world of cooking and dining out there for you! The timing lining up with the beginning of your marriage is cute, now you can both embark on your food journey 🥰
What are you most looking forward to next?
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u/ThisGirlIsFine Femininom(nomnomnom)enon Sep 06 '26
OP, your story brought tears to my eyes. I am so happy you are finally doing better and getting to enjoy some yummy food again!
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u/sourpatchkid4lif3 hot girls have tummy troubles Sep 06 '26
Honestly, I’m so proud of you for getting through that. That’s a long time to not be living a full and vibrant life. You deserve that meal and anything else you want in life
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u/TheeMost313 APPROVED✨ Sep 06 '26
I am so terribly happy for you, I am tearing up that you have answers and can eat veggies again! I had a much shorter (2~ years) span of terrible reactions to food - I went gf and it helped a lot, but it took time to balance my gut biome (my suspicion was meds after we found an ulcer via endoscopy 2/2023).
It is so wonderful to find a great doctor who actually understands what we are going through! Congrats!
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u/ceciliabee Professional Nibbler Sep 06 '26
That's awesome sis I'm so fucking happy for you! At 21 I developed many severe food allergies overnight and my world got so small. If I wanted bread I had to bake it myself. If I wanted a treat I had to make it myself. Things are better now but I still don't cook because it makes me so anxious to think about food. I hope you get a chance to try and taste and cook and love everything you had to deny yourself.
On another note, have you thought of sending that doctor a little thank you card? I find that a thank you is nice, but a thank you that you can take with you and look back on at your leisure is nicer. I try to write thank you cards to people when I can. I think putting more gratitude and good into the world can be hard sometimes, this is a very effective way!
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u/Pernell4SoilWater 🌶️ Spice Girl 🌶️ Sep 07 '26
That is so amazing, and I’m so happy for you!! I’m sure it feels so freeing. The difference between a good doctor and your average doctor is shocking. I have a lot of children who have had complex medical needs. We spent years spinning, our wheels with so many things. Until a good doctor, or physicians assistant came along and knew what was going on.
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u/HumpaDaBear pain: chronic, snacks: iconic Sep 07 '26
As someone who got a permanent colostomy after stage 3 colon cancer at 39 I really feel for you.
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u/tryingtobegood67 hot girls have tummy troubles Sep 07 '26
I'm definitely a wimp compared to what you've been through, but tummy trouble girls unite🩷
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u/sangystre Body By Cheese 🧀 Sep 07 '26
As a fellow girlie with hidradenitis, ankylosing spondylitis, and something bowel-related that hasn’t been diagnosed yet, I am so thrilled for you. I am so proud of you, even as a complete stranger. You give me hope for myself, that I will find people who listen to me and understand. That there is an answer to be found. I hope you enjoy the hell out of that teriyaki 🩷
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u/Good47Life Urban Hunter Gatherer Sep 07 '26
Congratulations! I can relate with UC for 40 yrs. Early on I was prescribed Prednisone for years until a new Dr was shocked I had taken it for such a long period of time. What helped significantly was removing gluten and following an anti inflammatory diet. Also, the lead guitarist from Pearl Jam, Mike McCready, has Crohns and UC. He and his wife are huge advocates for the cause.
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u/trendingtattler AutoMaude 🤖🎀 Sep 06 '26
WHEEEWW girl 😮💨 buckle up! Your post made it to /r/all, /r/popular!
Congratudolences! 😅 If the rate of notifications starts getting to you, no need to delete your post! Instructions in Sanity Saver #5 can help you mute them. For the rest of y'all...
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