How bad is bad enough to go to the hospital?

[crohner000]

I have been suffering a flare for over 6 months due to Humira not working for me, and then switching to Entyvio which after a very long 5 months of waiting doesn't seem to be working either. The flare has been particularly bad for about the last month or two and I am pretty desperate for relief at this point. I just moved back home to live with my parents due to my health and so I started seeing a new doctor today who seems good. His plan is to give me my next dose of Entyvio just in case it helps or is helping a little bit but in the meantime try to get me approved for Stellara and do a full colonoscopy and specialized CT so he can determine whether I need any surgery.

However, I really feel like I am suffering badly now and want relief soon so much. I'm 3-4 weeks away from my next Entyvio infusion and not hopeful that it does anything at all for me. I tried prednisone up to 60mg (currently tapering and down to 20mg) and that did not help either. I guess I was just wondering if anyone has advice on when it's bad enough to go to the ER and if anyone has had any relief from doing so? I talked to my doctor about it and he said if I went they could give me IV steroid and fluids so I can be on bowel rest and that it could help make some of the pain go away. He didn't feel like I needed to go but said I could if I wanted to. I am having lots of rectal and abdominal pain, bleeding, nausea during BM because of pain/straining, even vomited yesterday, frequent BMs, waking up multiple times at night, and some fevers (101.1 last night). I'm scared to eat almost anything because I just don't want to go to the bathroom so much. I'm just having trouble deciding whether I want to go and be admitted.

One other question: has anyone had success with IV steroids calming down a flare if prednisone orally did not work?

 

[ronroush7]

I have seen it said on here that if you ask this question then you probably need to go. So, I would say go to the ER. Let us know how you are doing.

 

[jcashen87]

I was having a bad flare running up to a long awaited diagnosis this year. I was having fevers and horrible pain all the time. I went to the ER and they didn't do a whole lot for me but it got the ball rolling more and soon after I got more tests and got diagnosed and found I need surgery for a stricture that is made up of scar tissue from the years of being undiagnosed.

My advice would be to try and go in if you're feverish and can't keep on the way you have. I am on prednisone right now 40mg. They wanted to see if that would possibly reduce my inflammation around the stricture so they can get through it with the scope this time to see another part of my colon that looked suspect on CT. They couldn't get past my stricture last time with normal. Scope. Today they're using a pediatric scope and hoping the prednisone helped somewhat.

Anyway started rambling but I would go if you are questioning it. That's why they are there to help us. Don't stop seeking help if you are living in agony.

 

[Crohns11]

I have been suffering a flare for over 6 months due to Humira not working for me, and then switching to Entyvio which after a very long 5 months of waiting doesn't seem to be working either. The flare has been particularly bad for about the last month or two and I am pretty desperate for relief at this point. I just moved back home to live with my parents due to my health and so I started seeing a new doctor today who seems good. His plan is to give me my next dose of Entyvio just in case it helps or is helping a little bit but in the meantime try to get me approved for Stellara and do a full colonoscopy and specialized CT so he can determine whether I need any surgery.



However, I really feel like I am suffering badly now and want relief soon so much. I'm 3-4 weeks away from my next Entyvio infusion and not hopeful that it does anything at all for me. I tried prednisone up to 60mg (currently tapering and down to 20mg) and that did not help either. I guess I was just wondering if anyone has advice on when it's bad enough to go to the ER and if anyone has had any relief from doing so? I talked to my doctor about it and he said if I went they could give me IV steroid and fluids so I can be on bowel rest and that it could help make some of the pain go away. He didn't feel like I needed to go but said I could if I wanted to. I am having lots of rectal and abdominal pain, bleeding, nausea during BM because of pain/straining, even vomited yesterday, frequent BMs, waking up multiple times at night, and some fevers (101.1 last night). I'm scared to eat almost anything because I just don't want to go to the bathroom so much. I'm just having trouble deciding whether I want to go and be admitted.



One other question: has anyone had success with IV steroids calming down a flare if prednisone orally did not work?

With regards to Iv steroids I have had success with them, but others might not, as with crohns treatments/diets etc will suit one person but not always another. And yes if asking the question about hospital then maybe you should go.

 

[warrior2]

Crohner,

I would go if I were you.

Here's why, your're bleeding, having constant BM's, not eating in fear of bm, feverish, got belly pains. your body is telling you something. it's in distress.

Re: iv steroids? much quicker response than orals, i.v goes right into arm. also dont wait till you become so blood less, dracula wont even touch you..

also u bleed out enough, you will pass out. BP drops, and if no one is home, ?? to see it, you can die , dude.
(this happened to me. by bleeding out, bp dropped, i fainted. and yes luckily was in hospital when that happened.)


I should take my own advice b/c I am in the moment you are in however not as bad as you... no throwing up, no pains, eating ok. but bloody discharges. and bm's , several a day.. I monitor my BP constantly, however, if still undecided, at least get hemocrit and hemoglobins lab work done. I just did it. levels good. bp good. decided no hospital against my drs orders. good luck. this plan may be a good one FOR OTHERS LIKE ME IN THIS CONDITION, but judging how serious a condition you are in right now, go to ER. U may save your life.

 

[valleysangel92]

Usually if it's got to a point where you're wondering about going to the hospital, it's time to go. We all know our own bodies and we know if something isn't right, so trust your insincts and go if you feel that you need to.

They can give pain relief and anti sickness, and they may admit you and give you some fluids to get you hydrated and possibly some IV steroids. I have been admitted for those before if oral steroids haven't helped, and they did make me feel a lot better, but of course it varies from person to person.

There have been times where I've felt that I was maybe wasting the doctors time but theyve always told me that if I am feeling bad enough to want to go to hospital then it means my treatment isn't doing its job and needs adjustment.

In the UK, they can move entyvio infusions to every 4 weeks if needed, I don't know if that's an option where you are, but may be worth enquiring about. They could also try adding in a medication like pentasa or azathioprine at a low dose to try and give you a bit of a boost.

 

[kiny]

Yes, "If you're wondering if you should go to the hospital, you probably should". I think that is sound advice.

You are saying you are bleeding and not feeling well at all. I would go to the hospital, if only to have someone guard over you.

 

[tots]

I have gotten to the point that I have been hospitalized twice and put on IV Pred. It helps
but I was in for 8 days both times.


Lauren

 

[EmmaLou]

Definitely go in. I've been told off after two emergency admissions for staying at home and trying to cope, thinking I wasn't ill enough to warrant hospital. If you've considered that nothing is helping and it's getting too difficult, go in.

IV steroids have really helped me this year. They worked quickly and successfully got things at least close to a semblance of control.

 

[Tommy21bn]

If you're questioning whether you need to go in, then you definitely should be in already.

What's the worse that can happen? You get reviewed by a Dr and sent home. Here in the UK it's often best to harass your Drs a little to get the right treatment. Good luck.

 

[Molly1997]

IV steroids are very good! A five day course usually sorts me out if I suffer from a bad flare, then I go home on the oral tablets, but SLOWLY reduce under doctors guidance, them as coming off them too quickly can prove pointless sometimes.

Hope you get sorted xx

 

[crohner000]

Thanks for all of your kind words and advice! Here's a little update:
I ended up getting scheduled for a colonoscopy on Halloween and it was quite the ordeal. I struggled so much with the prep that I ended up going to the ER for severe pain in my rectum and anus and completed the prep there with fluids, morphine, anti-nausea medication, and Lidocane topicals. My colonoscopy showed a VERY sick colon that my dr described as "evil" "angry" and said there's probably a 50% chance of me not having a colon in a year. Because I was doing so badly we mutually decided for me to go to back to the ER to get admitted for IV steroids. I was ultimately hospitalized for a week. I got the IV steroids for 3 days adn then switched to oral. I started feeling better on the IV steroids and honestly wish they kept me on them longer because I started declining a bit when they switched me to oral and had to up it. Probably due to absorption issues. I also worked with dietitians while I was there and did clear liquids for a couple days, then slowly worked up through really soft foods to other low fiber/low residue. Basically my solid food diet eventually consisted of Rice Krispies with skim milk, fruit cup peaches or pears, cottage cheese, chicken noodle soup, pasta, chicken, mashed potatoes, green beans, and carrots.

I just started Stelara 1 month ago and am also on Imuran and Bactrim, as well as still being on 60 mg of Prednisone since the hospital. I am doing quite a bit better than I was back then but I think it's mostly because of high dose steroids they gave me because I was in such a severe flare (was having very frequent BMs, blood, fatigue, pain, and urgency, all of which have at least improved a bit if not completely gone away). I feel a lot better because I was really doing bad back then, but definitely wouldn't say remission. It's almost more like I'm used the symptoms I do still have. Now I am mostly dealing with semi-solid BMs with mucus, cramping, and lower back pain. I just saw my doctor for my 2nd follow up after hospitalization and he wants me to start tapering off of the Prednisone a few days after my 1st Stelara injection (2nd total dose, first is an infusion) after which he thinks I will be feeling even better. If symptoms do start to come back after tapering we will have to reassess. I cannot wait to get off Prednisone as I am really starting to feel the side effects (moon face especially, darker hair growth, weird energy levels/irritability, maybe tooth sensitivity? could be unrelated) but am just hoping that I will continue to improve instead of going in the other direction... It is definitely scary! I worry that the steroids are what have helped me and that without them I will decline again. But I also don't want to stay on steroids! I am really hoping the Stelara is actually doing something. I'll see the doctor again in March and he says he will probably want another colonoscopy then just to see where we're at internally. Hopefully the prep will be much less traumatic this time!