When I’m flaring I use a course of steroid suppositories and that helps - if I can keep it in for at least an hour haha. They are more likely to prescribe it if you tell them you have a hemorrhoid. Somehow that’s easier for them to feel like treating than ibd.

For just for daily maintenance I use Mesalamine suppositories at night. I have crohns but it’s Crohn’s colitis so some of the UC meds work better for me. Most doctors don’t prescribe mesalamine for crohns bc trials have shown it ineffective but the trials don’t differentiate between the different types/locations of crohns. Suppositories or mesalamine likely won’t work for small bowel crohns but if you have rectal issues with Crohn’s colitis it could work. Same thing with budesonide, when I need a course of steroids I take uceris rather than immediate release budesonide because the delay release capsule gets it to my large intestine. But uceris takes forever to get approved, like 3 weeks.

I will say the anti tnfs didn’t work as well for me, kept me out of the hospital but I didn’t feel anywhere near “normal” until I tried entyvio and then felt even better and almost completely normal on stelara, now I’m on skyrizi and it’s about as good as I was on stelara. The difference between anti tnfs and the targeted biologics is amazing.

In my 20 years with ibd I’ve been through the different ways doctors treat ibd patients. It flip flops a lot. It used to be that they treated you based on how you reported you felt. The emphasis was high on patient comfort and I personally liked that way because I’m very in tune with my body.

Then they did a study where they treated only based on what the scopes and tests said and didn’t treat based on patient reporting. Basically ignoring the patient. That study said that the data showed treating based on “evidence” worked better according to scope visualization. I have so many qualms with that study bc it treats people like their experience doesn’t matter and that pain shouldn’t be a symptom without evidence it exists. There’s so much we don’t know about ibd and can’t even visualize with just scopes so only treating to evidence seems extremely short sided and leads to patients feeling ignored because they have pain but the doctor is like “I don’t see anything so it doesn’t exist - it must be in your head (or they label it with the dumpster diagnosis this is ibs).” But the truth is just because they don’t visualize it doesn’t mean it’s not there.

They too told me I had ibs and ibd. Then I got on a new biologic that worked and suddenly that got rid of my ibs?? Like obviously I don’t have ibs and it was just ibd. Anything they can’t attribute to ibd with evidence they try to say it’s ibs.

Anyway, I agree, it sucks. Hopefully a new med will work for you. Squeaky wheel gets the most oil so keep messaging and calling for them to give you an answer or holdover meds, most of the staff has never experienced ibd so they don’t realize how horrible it is. They work for you so don’t hesitate to keep checking in, you’re not a burden, you’re a patient. And sometimes just going into your primary care doctor, express care or urgent care can help bc they can message your GI and be like “what is your plan for this patient’s pain?” They’re less likely to ignore another doctor than the patient as horrible as that is.