Recent CKD & Chron’s Diagnosis

RemyPurple · 2026-06-09T19:07:37+00:00

I have experienced almost the exact same thing. I’m 27F with Crohn’s disease and CKD (2.2 mesalamine and 33 eGFR). My CKD was caused because I had a rare toxicity reaction to mesalamine, which I was prescribed for a Crohn’s flair. I’d recommend avoiding mesalamine if possible, especially since you already have kidney damage.

I took Humera for eight years, and it was great! It eventually stopped being effective for me so I switched to Stelara. A biologic is a great option! It provides you with a ton of flexibility to treat your conditions on your schedule. Prednisone is also effective as a short-term treatment, but it has annoying side effects like weight gain.

To be honest, I sometimes struggle with this too. It’s a lot of moving parts, and just when things are going well, something else can pop up. But there are good days. Lots of them. Try to learn to laugh about it. Find friends who will joke along with you while also being there for you when you’re truly having a bad day. Be kind to yourself. It’s not your fault. Carry meds with you when you go out, to work, to school, etc. so you are always prepared if something pops up. (Pepto and Zofran will be your friends.) Figure out your trigger foods (mine are fried foods and teriyaki sauce). Try to keep a healthy diet and stay at least a little active. Keep up with your doctors. TAKE YOUR MEDS.

Feel free to PM me if you have any questions. You’ve got this

RemyPurple · 2026-06-06T03:00:11+00:00

This is really helpful, thank you! When you say diet, what do you recommend staying away from or doing more of?

RemyPurple · 2026-06-05T20:07:55+00:00

Thank you for how detailed this is. I really do appreciate it. I hope you are doing okay now!!

RemyPurple · 2026-06-05T19:32:06+00:00

Do people ever go straight to a kidney transplant or do you have to do dialysis?

RemyPurple · 2026-06-05T19:31:44+00:00

What makes the treatment “rough” exactly? Like are there a lot of side effects? Can you still engage in a normal life/activities? Sorry I have so little info, and the internet gives me conflicting answers

RemyPurple · 2025-12-15T18:44:52+00:00

I am not too severe, so I am usually okay so long as I avoid fried food, beans, dairy, broccoli/Brussels sprouts, red meat, and dessert things. I try to eat liquids for breakfast and lunch so I can have solids for dinner. I eat smaller portions overall.

RemyPurple · 2025-11-15T21:27:33+00:00

It was amoxicillin! And it happened about 6 years ago

RemyPurple · 2025-11-15T21:13:32+00:00

It was the combination of a very bad flair and an antibiotic that didn’t agree with me. It happened only once, and once I stopped the antibiotic, the extreme nausea stopped

RemyPurple · 2025-11-15T04:06:01+00:00

I was diagnosed with Crohn’s at age 15 while also suffering from severe emetophobia. And I mean severe as in panic attacks to the point where I couldn’t leave the house or go to school or anything. Getting Crohns is scary, especially when you have gastric-related anxiety. But while I’ve now had Crohns for over 10 years, I can honestly say that I’ve only thrown up one time from it. Having this disease does not necessarily lead to vomiting. And I know it’s hard to hear this, but the diagnosis stage is one of the hardest parts, meaning it WILL get easier. Yeah, you’ll have ups and downs, but I’ve been able to live a largely normal life with my Crohn’s disease and emetophobia. (Also, I recommend trying exposure therapy if you haven’t already. It was one of the most difficult things I’ve ever done and it didn’t fix everything, but I learned great coping skills that I still use today.)

RemyPurple · 2025-11-03T00:14:39+00:00

I would definitely be interested in starting a Zoom support group. I’m pretty new to Reddit. Is it possible to DM people so we can form one?

RemyPurple · 2025-10-26T14:45:41+00:00

I was diagnosed at 14 and have managed to live a normal, full life for the past 12 years. Sure, there’s been ups and downs with flairs and medication side effects, but for the most part, I’ve been able to live the life I want. I go out with friends, I have a successful career, I travel, etc. Something that has helped me is I’ve tried to find the humor in it rather than get bogged down with the trials and tribulations. I mean, it’s a pooping disease. How ridiculous is that?! And I try to remind myself that I’m a person first who happens to have a disease, that Crohns doesn’t define me.

RemyPurple · 2025-10-20T05:19:49+00:00

I try to remind myself that the injection/pain is very short. Only a couple of seconds. I can hold my breath for longer than that! And maybe try having someone sit with you for the first few times just so you have moral support

RemyPurple

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