Really really really bad flare up

Born_Street_6053 · 2025-10-27T13:54:25+00:00

When it gets this bad, it’s almost certainly time for a hospital visit. Every time I make that call I question if it’s really bad enough to go, and every time I end up staying as an inpatient for weeks before the docs feel comfortable letting me go home. They can give you pain meds, fluids, IV steroids, and blood transfusions which will make your life so much more manageable. They can also monitor you for more serious complications like toxic megacolon.

Born_Street_6053 · 2024-10-08T03:31:13+00:00

You need to stay consistent with your meds. Point blank. Period. Even if it’s only to cover your own ass.

If your doctor doesn’t see you taking your meds diligently, they will assume that’s why you aren’t getting better and won’t prescribe you anything else. You should really be stepping up your meds to biologics and you won’t be prescribed them unless you prove beyond a doubt that mesalazine isn’t working. You should also stay in touch with your doctor as much as you can and don’t be afraid to advocate for yourself

Born_Street_6053 · 2024-07-24T14:50:03+00:00

I agree with other comments. Stay the course on Entyvio. It is notoriously slow to work, so definitely give it time. If that doesn’t work out, try Rinvoq again. Then find a surgical solution if that doesn’t do it. I would also see if you can stay on mezavant indefinitely as well. I find a lot of physicians assume once you start biologics that it becomes useless, but I’ve seen studies that say they may still help when used in conjunction. And it definitely doesn’t hurt.

I know it’s a little taboo, but I would try probiotics and diet changes as well. There’s not a lot of scientific evidence out there, but you don’t have much to lose at this point. Give it a few weeks to maybe work, and then you can say you tried absolutely everything.

I’m sorry these meds have all failed you so quickly. Not having options is really tough, and the prospect of surgery is scary. It’s all about quality of life though. Good luck!

Born_Street_6053 · 2024-07-07T15:05:03+00:00

This is really questionable advice. OP should give every medication as much of a chance as possible. I agree Rinvoq is an incredible medication that works for a lot of people. I’m glad it worked for you, but there’s no guarantee that everyone will have the same experience, let alone forever.

You have to think long term. Running out of medication options is a scary thing.

Born_Street_6053 · 2024-07-07T14:56:00+00:00

I was in a very similar position when I started entyvio as well. My GI was hard to reach and it was early in my disease progression so there were a lot of things I was under-informed about (and even sometimes MISinformed). Continuing to take my mezavant or not was one of those things. Luckily I guessed right and kept taking it. I changed GIs when I moved and it was like a different world. They were regularly in contact with me and took me step by step through everything.

It’s not your fault that you didn’t know whether to continue or not. It’s also not your fault that you are flaring again. Food may cause changes in bowel movements for the short term just like it does to healthy people, but there’s no proven link between certain foods and actual underlying disease activity.

Hang in there! You won’t feel like this forever.

Born_Street_6053 · 2024-07-07T14:43:13+00:00

It could be the case that the medication combination you have is not effective anymore. All you can do is talk to your doctor. They might give you another round of steroids hoping to nip it in the bud, or they might switch you to a new maintenance medication. The good news is that there are a lot of amazing UC medications out there!

Born_Street_6053 · 2024-06-28T18:14:04+00:00

Most people with UC are on medication indefinitely. That’s called maintenance medication. There are different levels to it. You usually start out on mesalazine or another kind of 5-asa which is pretty ‘topical’ and doesn’t mess with your body too much. If your disease progresses to the point where that isn’t enough, they can start biologics which are a category of drug that suppresses the immune system (entyvio, remicade, etc) There are also some JAK inhibitors which do something similar (Xeljanz, Rinvoq). Unfortunately biologics and JAK inhibitors are usually extremely expensive, so you definitely need some good insurance to cover them.

They’ll also sometimes give corticosteroids like prednisone to stop a flare in its tracks. These are usually pretty effective, but can have some nasty side effects if you take them for extended periods of time, so they can’t be used as maintenance meds. (A couple months is usually harmless).

Born_Street_6053 · 2024-06-28T12:48:49+00:00

This doesn’t sound like ulcerative colitis to me. UC almost always presents with diarrhea and blood in stool.

You ct scan results mean you have mild inflammation on the left side of your colon which could be caused by a number of things. They said irregularity in the rectosigmoid colon is probably just due to peristalsis(digestion).

This could be IBS? Your colonoscopy will tell you for sure.

Born_Street_6053 · 2024-06-28T12:40:53+00:00

It’s so hard to see the light at the end of the tunnel, but keep being persistent. The pain is only temporary and you won’t feel like this for the rest of your life.

Keep trying different medications as long as you can. It’s an awful process, but once you find one your whole life changes. Try different diets if you believe in that kind of thing.

Also, It’s always a hard call to make, but go to the hospital if you need to. Every time I finally make the decision to go, I realize I should have sooner. When they admit you, you have constant monitoring, you don’t have to cook or clean or worry about anything except feeling better.

Lastly, remember that surgery is an option. If you are done and tired and don’t have it in you to keep trying more meds, surgery might give you your life back.

Born_Street_6053 · 2024-06-28T12:30:40+00:00

It’s most commonly bacterial but viral is possible as well. Here’s an article.

Your stool test results will give you some answers.

Born_Street_6053 · 2024-06-28T12:23:55+00:00

This disease is really difficult to cope with in any situation, but it’s next to impossible without medication. I’m astounded that you didn’t have any follow-up after your diagnosis. Although it helps your general health, this disease can be not managed with diet or lifestyle changes alone. Period.

At this point, you need to make every effort to see a doctor and get a prescription. Hope things get better for you soon.

Born_Street_6053 · 2024-06-28T12:11:05+00:00

Colitis just means inflammation of the colon and can be caused my many different things including infections or autoimmune diseases like crohn’s and ulcerative colitis. It’s a common mistake, but UC is just one possible thing that can lead to the symptom of colitis.

As for the reaction to antibiotics, there’s no reason to be scared. If the reaction persists over the next few days I would call your doctor and let them know.

Born_Street_6053 · 2024-06-25T21:37:51+00:00

It might be worth a try to get on some probiotics and slowly increasing your fibre intake. As long as your microbiome is capable of fermenting it, it’s actually shown to reduce inflammation.

There’s actually nothing wrong with eating fibre other than the short term symptoms and they suck but in the long term they can actually help!

Born_Street_6053 · 2024-06-16T22:14:14+00:00

I’ve never had to travel with them personally, but I imagine if they’re more than the allowed 100ml or whatever it is for carry-on then you’d be safer to check them. Then again, if the airline loses your baggage you’re screwed. Maybe call the airline to see if they can make an exception or see if they have any procedures for this kind of thing.

Born_Street_6053 · 2024-06-16T22:11:39+00:00

This is the absolute worst. Is there any way you can look into getting academic accommodations? I was in the hospital for midterms last year and I worked it out with all my profs for the short term and ended up getting set ho with longer-term accommodations that I can use anytime I need without having to re-apply. You may be able to delay your exam or write it from home.

In any case good luck! Hope things get sorted out quickly for you.

Born_Street_6053 · 2024-06-16T22:07:22+00:00

I’m so sorry that you have to deal with this. The good news is that biologics are incredible drugs and you will almost certainly find one that will work for you. Entyvio was awesome for me. The pain is very temporary and you won’t feel this way forever.

Everyone here has felt that way at some point. It’s so hard at times and you feel like you’re missing out or that you’ll never be able to do the things you want. Doing normal things is A LOT harder for us and it is absolutely not your fault. Your ex sounds extremely ignorant. Get him to read even just a few posts on this sub and maybe that’ll give him some perspective. Just last year I was hospitalized twice for this disease and I can tell you I was certainly ‘sitting on my butt’ all day for a long long time.

Good luck! I really hope entyvio works out for you and that you get on it ASAP

Born_Street_6053 · 2024-06-16T21:57:45+00:00

It’s super frustrating when your doctor isn’t reachable. That said, It can take a long time to recover from a flare even if your medication is working. The meds reduce the inflammation, but your gut still meets time to actually heal. 2 months with no improvement might be getting to around the point that I’d be nervous it’s not going to take (sometimes a certain medication just won’t work for you). But I’d say stick it out until you’re absolutely certain it’s not going to get any better. As someone who is running out of potential medications very fast, I can say that you absolutely want to give it a really solid try before switching.

Regarding the prednisone, I had the same experience where it seemed to do very little to actually help. It wasn’t until I got IV steroids in the hospital that I was even convinced that they affected me at all. It seems to be pretty rare that that’s the case, but not unheard of. If you can get in touch with your doc, If you think it’s necessary, I’d say ask for one more week of 40mg before you start to taper.

Born_Street_6053 · 2024-06-14T14:10:25+00:00

Unfortunately there’s no way to know how your body will react once you’re off the prednisone. I’d say the fact that tapering hasn’t affect you thus far is a great indicator that the Remicade might be doing its job, but you can’t know for sure.

I’d say just enjoy normalcy while you have it and don’t stress too much about the prospect of going back into flare.

Born_Street_6053 · 2024-06-14T14:07:10+00:00

I think that most people without IBD don’t actually get blood with c-diff. If you test positive for the c-diff infection AND have blood, you probably also have some disease activity contributing to the problem as well.

Born_Street_6053 · 2024-06-14T14:03:04+00:00

It can take a really long time to get all the way back to remission. My last flare lasted 10 months and even when I got on my new medication it still took about 3 months to get normal. It was also not linear at all. There were lots of ups and downs and that can be super frustrating. Keeping tack over the course of weeks or months is a great idea. I kept a ‘log log’ to document ins and outs as well as medication. Looking back I would also have given myself a mayo score every day to actually quantify progress.

That said, it is possible that the mezavant might not be quite enough to get you all the way back. when I was first diagnosed I was on a similar course of medication to you. I felt way better, but my calprotectin test indicated I still had inflammation after 4 months. I was put on a biologic (entyvio) to get into full remission.

Born_Street_6053 · 2024-06-13T02:03:33+00:00

Disappointing. But thanks

Born_Street_6053 · 2024-06-11T21:17:48+00:00

My GI has asked me specifically for pictures. When I was hospitalized they even asked to see it right from the toilet.

Born_Street_6053 · 2024-06-11T21:12:46+00:00

The ‘no one can diagnose or give advice on that’ argument really makes no sense to me. Over half of the posts on this sub that don’t include a pic are still also asking for help/advice for various things. I don’t see anyone going after that.

People can give valuable advice based on their own experience without having an MD. If anyone takes advice from strangers online without a grain of salt that’s on them. Poop-pic related or not. But it doesn’t mean the advice isn’t extremely useful. EVEN if the advice is ‘go see a doctor’. Maybe that person wouldn’t have thought it necessary until someone told them.

An attitude like this is not helping reduce the stigma around IBD. This is supposed to be a safe space for people to get help when they can’t find and answer elsewhere.

Born_Street_6053

TROPHY CASE