Update! On Entocort

It's working, it's working! At least I think it is.

So today was day 10 taking the 3mg 3x/day. They give me 30 at a time, oddly, though I may ask for the next 20 days all at once when I get the next refill.

Anyway, so today is day 10 and I've noticed a significant SIGNIFICANT change in my bowel movements.

Praise Flying Spaghetti Monster! Actually, at this point, I might even thank god I'm so relieved.

I often have a few bowel movements in the AM when I get up (which hasn't changed much, tho now it's increased) BUT I don't usually have a bowel movement during the day again in the last 5 days, I'd say. And, if I do have to go, I think out of habit I think it's urgent but I can often wait a bit without the former constant fear of not making it to the bathroom, or discomfort, or anything. One morning I left my house in a cab for school because I was running late. I'm only about 20 blocks from there but I was panicking in the cab because I had to go and there was traffic. I not only made it to school but made it across campus to my class and put my things down before I went to the bathroom and it was all fine and not scary or anything. Amazing.

AND my BM's have changed!!

I just can't guys. I can't even believe how much less stressed I feel just from pooping less and more normally.

They're still often soft, but well formed and rarely diarrhea. I am afraid to call them normal and jinx it, but...is this was "normal" feels like?

So the entocort is working, he hasn't given me my blood results from last time yet which is massively irritating I must admit, especially since I emailed him even. I plan to call Monday if he hasn't emailed me back.

But someone mentioned Entocort isn't a long term solution. So I'm curious what the next step tends to be for mild crohn's sufferers after Entocort - and how long can I stay on the Entocort?

You should see my previous posts.

Entocort is the first step for me, meds wise. My colonoscopy was clear with biopsy showing ileitis. ESR was 24 and WBC was slightly elevated - everything else so far has been clear. The goal with Entocort was if it works, it confirms the unclear diagnosis (family history of Crohns - brother - and Colitis - mom and symptoms for going on 6 years now with urgency and diarrhea, but mostly urgency).

So, this could very well go from mild to severe overnight, but my doctor said for now, it's mild and it could never even get to severe and based on all my symptoms, this is where we will start.

Like I said, I have been on Entocort now for 10 days. Not anywhere near weeks or months, and I haven't been on any other meds - and I doubt my doctor would put me on something stronger right off the bat because of how mild it is.

That said, telling me all about how terrifying steroids are (which I already know, thanks, I'm an LMT heavily trained in medical massage) and about how I could kill myself by stopping Entocort cold turkey when I LITERALLY got my diagnosis a week ago and started meds and for, the first time in 6 years am getting some relief, is not likely to help me stay anxiety free, so thanks for that. I do enough reading on the internet to feed my anxiety about everything that could possibly in any lifetime, go wrong for me.

I don't need scare tactics or horror stories. I'm a well educated person and I full intend to ask my doctor all the relevant questions and for now, I trust him. I'm not sure the side effects from a biologic would be worth it for how mild my Crohns is on the spectrum of How Bad Can Your Crohns Get.

I was just looking to hear from other people who had similar experiences with mild crohns, relief from entocort, and what their doctors did next. When I asked what we'd do if the Entocort didn't work, he told me to worry about that if it didn't. I didn't think to ask what would happen if it DID work because he told me to "Call me in 4 weeks to check in and we'll go from there" so I knew I'd have the chance to ask. But since it IS working, I just wanted to see if others could relate their next steps.

Leaving out the anecdotes about how quickly I could spiral into severe crohns or, you know, death.

I wasn't trying to scare you, and I apologize that it came across that way. The hard thing with digital communication is things like tone of voice get lost! :) In my head, it sounded a lot nicer than I think it came out just reading it.

I've been on this forum for several years, and you would be amazed at the number of people who come on here with the idea of taking steroids indefinitely, or they are on 60 mg and just stop cold-turkey and are confused as to why they feel awful because their doctors didn't inform them (or they weren't listening well; getting a big diagnosis is confusing). When you asked how long you could be on entocort, I didn't know if you were wanting to stay on it for years or if you wanted to stop it tomorrow, and I wanted to be clear as quickly as possible (especially if you were planning on just stopping tonight).

There are also a lot of people who think that feeling well on steroids means they don't need any maintenance medication and have basically cured their Crohn's. Again, I wanted to make sure that you were informed as possible as clearly as possible. I just didn't want you to come back in 6 months in a major flare. And I do think it was pretty irresponsible of your doctor to say that you couldn't get severe Crohn's because it's mild now, because that's absolutely not true.

Again, I apologize that it came across more blunt or harsh than I intended. I wasn't trying to scare you with horror stories, but I also wanted to make sure that things were absolutely clear.

I understand that the Entocort is not a long term fix. I said that in my original post. My question wasn't having to do with staying on entocort forever because it made my symptoms go away - it was, in people's experience, what was the next step?

Also my doctor never said my Crohn's couldn't get worse. He just said it is mild NOW. I know how bad it can possibly get - I can google/read as well as anyone. Though I don't understand why a steroid sounds so scary? I'm certainly not excited about the prospect of it, but as a short term medication to manage my symptoms, and essentially as a diagnostic tool (my case is so "mild" and unclear, he diagnosed me but it's not a clear diagnosis, he couldn't say 100% - the entocort was part of the diagnostic and as a short term option, that doesn't bother me at all).

But if I am showing no inflammation in the colon, no visible Crohn's damage, and only inflammation was in the biopsy from the ileum indicating ileitis (specific language in my previous post, I don't have it in front of me right now), when how is that not mild? I mean, I trust that my doctor at the very least knows the difference between a mild, moderate, and severe disease.

My symptoms were: very urgent and frequent loose stool (though not diarrhea as I think of it as watery and in bursts); rarely blood in the stool; mild abdominal pain, joint pain, weight gain, migraines, and a family history of Crohn's.

Blood work wasn't screaming Crohn's and from what I've read here and been told by people, my ESR was actually fairly low in the grand scheme of things and my WBC could have been elevated (it was 12k when I think 10k is normal) from any number of things. Because none of those were entirely conclusive and my colonoscopy visibly was "normal" and only showed inflammation in the ileum, it all logically makes sense to me. Maybe it shouldn't?

I KNOW it can progress. I am aware of that. I promise, I see every single one of your sentences, I've read as many posts on here as I can, but RIGHT NOW this is what I am dealing with. I feel like I'm getting a lot of "Well, you just wait until it's severe" but it isn't right now so I can't deal with it, if it makes sense.

I can do what I can to prevent it from becoming severe (can I? I don't even know, will aggressive treatment now prevent it from getting that severe? it took 6 years to get this bad though that's no indication of future disease manifestation) but that's why I came here, to ask about next steps and what other people have done. Though the last time I told my doctor I was talking to other Crohn's patients and wanted to make sure I was as informed as possible, he told me every case was different and it's possible mine may never ever be that severe.

If he's dismissive of my concerns about it getting worse without aggressive treatment (someone else suggested on another post of mine that a lot of people with mild crohn's do nothing, but I would only do nothing if the side effects of a medication were worse than urgently needing a bathroom...) then I will look for a new doctor - it's a big practice in a big hospital. If none of them think I have anything to worry about, I'll look elsewhere but December 31 I am getting much worse insurance and my options will be more limited which also worries me a lot.

Thanks everyone, I have a long list to take with me and ask about at my next appointment.

I am with help of my doctor fighting insurance to get this rx. I have been 4 years on a variety of rx and this works. Alsoy eczema is slowing down. Good luck to you yoo

I have been so sick for so many years I can so sympathize with concern with what comes next. I didnt have insurance and my doctor kept me going with Prednisone which was cheap and got me by (moon face and all) I turned 65 am seeing a specialist got the right labs done and so I am excited albeit temporarily with the Entocort answer. I have ranged from 100lbs up to 140 on Prednisone and down again, I guess I am so happy to have some relief without surgery that I am not thinking of my future I feel like I have made it to my future and living day to day......I appreciate this forum