u/g3r4nium_r3d

What are some of yalls experiences weaning off Budesonide? I think I'm getting hit with the withdrawals hard.

Still waiting to be 100% sure of my diagnosis. Being treated like it's Crohns by my GI. Insurance isn't approving the mesalamine. I think I'm in a pretty gnarly flare atm. Bad abdominal cramps, nausea, malaise, fatigue, diarrhea that still feels like constipation before it comes out, etc. I'm currently weaning off Budesonide which I didn't think I saw much difference with while actively taking max dose but fuck. I have more intense body pains than I've had in months. Can hardly bend my leg when I try to walk. I went to the ER two days ago and was told nothing was wrong after a CT, blood work, urine test, and x rays. Not sure what's happening and trying to just get it thru to my brain that I'm not dying. Waiting till the weekend is over so I can call my GI. I'm exhausted.

Still waiting to be 100% sure of my diagnosis. Being treated like it's Crohns but being prescribed meds that tend to only be prescribed for UC. Insurance isn't approving the meds. I think I'm in a pretty gnarly flare atm. Bad abdominal cramps, nausea, malaise, fatigue, diarrhea that still feels like constipation before it comes out, etc. I'm currently weaning off Budesonide which I didn't think I saw much difference with while actively taking max dose but fuck. I have more intense body pains than I've had in months. Can hardly bend my leg when I try to walk. I went to the ER ywo days ago and was told nothing was wrong after a CT, blood work, urine test, and x rays. Not sure what's happening and trying to just get it thru to my brain that I'm not dying. Waiting till the weekend is over so I can call my GI. I'm exhausted.

I have no idea if this counts as seeking personal info, but I'm looking for GIs in the area who are good with Celiac and IBD. Any recs are appreciated bc I'm feeling completely at a loss with my GI who is refusing to put the effort towards getting me properly tested and just trying to immediately drain my wallet without trying to run anything thru my insurance. 🙃

I was wondering if blood tests for Celiac can come back negative even if you do have it. After the blood tests my doctors jumped straight to testing me for IBD but my colonoscopy biopsies came back negative as well despite showing ulcers and inflammation. I had a CT-E which showed Terminal Ileus. They're essentially treating me as if I have Crohn's without giving me a diagnosis. The steroids are not working. Should I keep pushing to get more Celiac tests despite the negative blood work?

Has this happened to anyone else? I was biopsied for Crohns and UC and both came back negative for either. I still have stubborn inflammation in my bowel that won't go away. I have been now diagnosed with Terminal Ileitis despite the biopsies being negative. Can this really happen?

Update: She called it Crohns Ileitis and Terminal Ileitis interchangeably and it seemed like she avoided answering clearly when I asked for clarification that it was Crohns. It's been super hard trying to get an answer. My primary was sent the info and went "they keep making it sound like you have crohns and then backtracking". When we last saw our GI she just openly referred to what I have as Crohns so idk if she's mixing words up or what. She kept forgetting my chart info to the degree it makes me wonder if she ever really even read it. She prescribed me a med I'm allergic to and have listed as an allergy. I'm trying to get seen by another GI.

I'm officially now starting to wean off of Budesonide but it never helped my inflammation at all. During this period I was also prescribed Pentasa since the Budesonide hasn't helped but Pentasa is related to Asprin which I'm allergic to so I was advised not to take it when I looked into it + most folks here I see mention it say it doesn't do anything to help anyway. My GI won't listen and I can't see a new doc till October if I switch. I'm at a loss and feeling unheard and disrespected by my current GI. Full disclosure, I believe it's because she is transphobic because she refuses to use my legal gender when she refers to me, just my bio one. She won't answer any of my questions. It's all a mess. I'm terrified of what may happen if I dont reduce any inflammation this year. My mother has UC and prednisone made her manic, so I'm terrified of reacting the same but I'm also getting desperate for relief.

Update: I called the hospital to request I am transferred to another doctor but I would have to wait to be seen until October. I was directed to a triage nurse to talk about being prescribed a med I'm allergic to. Waiting to hear back.

Since getting symptoms and now being diagnosed with Crohn's since the 10th of June, my anxiety is at an all time high. I have never had it alongside medical OCD this unmanageable. I was spiraling over the uncertainty and newness of it all this morning in bed so badly I almost made myself faint and get sick. Gave myself horrible diarrhea over it. Completely wrecked my sleep.

​

Does anyone have any coping skills that they use to manage it all? I'm on a wait list for a therapist. I keep telling myself and my partner it'll get easier when I find my new normal, and she's been absolutely incredible with me and my spirals. I can tell she worries and gets stressed though and I don't want her to shoulder all my fears. Any tips help. I'm in between doctors and meds rn so everything just is really uncertain and scary. I keep trying to shut my brain down from creeping back to it when I need to rest but it often creeps back even in the form of stress dreams that wake me up completely ill.

I am on Medicaid. I have been homeless off and on since I was 16 after being disowned by my parents and did not get to graduate. I am working to get my GED but that costs money. The laws around Medicaid are now changing and requiring I work 80 hours a month to qualify, and most jobs would automatically disqualify me from coverage due to the limitations. They won't pay me enough to survive but pay me too much to qualify. Most treatment for Crohn's is incredibly expensive. Is there any financial support or debt relief resources that you all have found that help cover care? I just got diagnosed with Terminal Ileitis and Budesonide is not working. I am 24 years old. I'm at a loss, frustrated, and exhausted. My life partner is facing potential cancer and is the breadwinner amongst us both. Idk if this is inappropriate to bring here but I just don't know what else to do or where to go.

Just had surgery today. I'm 24 years old and incredibly lucky to have found a doc that cares as much as she does and also accepts state insurance. Had a massive fibroid removed as well. The recovery has been rough but there is absolutely no regret. The cramps and pain from the surgery is not nearly as debilitating as my endo cramps. I've known I wanted to be child free for a long time and had complete and total support from my partner. I hope that all who seek this procedure out can feel so much better after the fact. You all are incredibly strong. I really hope more people can find good doctors who take them seriously.

I have officially been diagnosed with Crohn's Ileitis, however I don't feel the symptoms match up. I do have the inflammation but when I look at other people's experiences I am unsure. I am having my uterus and tubes removed tomorrow and I am curious if the suspected endo could be causing anything. I very rarely experience bloody stool, and when I do it's light red spotting. I very occasionally get diarrhea but it's usually constipation. The nausea comes and goes but I don't typically vomit. I get tired but I'm not so tired I'm completely dragging my feet all day. I'm only losing weight bc food is hard to consistently come by some days. Budesonide has done nothing to touch the inflammation and they're now trying to put me on Pentasa. My doctor wouldn't tell me why Crohn's was the diagnosis other than "there's inflammation" even though the biopsies they took during my colonoscopy both came back negative. I guess I'm just scared to take a bunch of meds for something everyone sounds so unsure of. Wondering if anyone else has experienced something like this?

I have had several symptoms of something and have been constantly seeing doctors. I had a colonoscopy in March and while the doctor suspected Crohns or UC due to some ulcers and inflammation, the biopsies came back negative. I was still put on Budesonide but I have seen no changes while on the steroid. I had a CT-E done and they found inflammation. A little before my colonoscopy I was told I have mesenteric adenitis while in the ER and was severely backed up. I have chronic constipation, but two days ago it became diarrhea. Yesterday however, in the ER again, I experienced a lot of abdominal pain and my stool was very skinny and long and squiggly. Ever since this, I have had constant urgency and nausea but my stool is just mucus, or sometimes nothing at all. I took a laxative and nothing has changed in hours. I desperately need sleep and keep waking myself nauseated and scared I'm somehow dying. My calprotectin levels were in the 140s and my next GI appointment is on the 10th. Not sure what to do. Feeling afraid and lost.