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In hospital please help need quick advice

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Ulcerative Colitis
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Posted 11/30/2016 11:01 AM (GMT -5)
I've been in the hospital since Sunday for pain, bloody stool and fevers. The GI dr I was assigned said over and over again that I should get off the prednisone. I've been on it for a month and it hasn't helped. He said over and over again that it might be making me worse. Then last night the nurse tells me he put in orders for IV steroids which shocked me after everything he said so I refused. New nurse this morning said it's for solu-medrol and will work better than my oral pred. Now I'm told the GI dr is on vacation which he did not tell me would happen and he never talked to me about going on any steroids. I am so upset. What would you do?
Posted 11/30/2016 11:10 AM (GMT -5)
Don't refuse steroids because you will go through withdrawal and that is horrible. The nurse was correct in stating that IV steroids are more effective.

I think the doctor is speaking past you and not explaining your situation very well. He is trying to tell you that you will need to start another medicine to get you gradually off of Steroids. He is probably trying to suggest Remicade/etc or 6-mp which are all much better than being on steroids.

I would take the steroids and ask what the plan is to get you healthy and out of the hospital. I'm surprised that you started with Simponi before Remicade because Remicade is the Gold Standard of biologicals.
Posted 11/30/2016 11:52 AM (GMT -5)
There is the general concern with getting off Pred and letting Simponi stand on it own - or trying something else. That is important but not a rush.

There is another possible concern that if you have a c-diff infection, the pred (or other steroid) could be facilitating the infection by suppressing the body's natural inflammation defense.

Was a stool culture done? Possibly the GI only ordered the sterroids after getting a report of no c-diff.

Anyway, you will need some steroid for tapering. IF your flare is really hot, you may need the IV steroids for managing flare.

The whole goal of steroids will be to allow your med (Simponi) to work. It also sounds like you may need a different biologic.

good luck

Post Edited (DBwithUC) : 12/1/2016 8:32:11 AM (GMT-7)

Posted 11/30/2016 12:44 PM (GMT -5)
Take it. He may want you off long tern ingested steroids. This is different. It is IV and should help your body VERY quickly get rid of inflammation causing your issues. I have been fighting this fight for 35 years.
Posted 11/30/2016 1:09 PM (GMT -5)
I was also thinking about C-diff. Please make sure that they test you for that. I understand that pred will not help C-diff. Hope you get relief soon!
B
Posted 11/30/2016 4:17 PM (GMT -5)
For the short term you have no option but to take the IV steroid to get you over the hump.

Sorry to say sounds like you are on the same path I was on. Meds are not working as well as Oral Prednisone and you are landing in the ER\Hospital. Prednisone is a sugar coated double edged sword that UC patients literally land on. It can be a lifesaver for a while but it is slowly killing you the whole time. It causes bone loss, diabetes, high BP, weight gain, etc. I took Prednisone for a long time - years just to keep me out of the hospital - After 3 trips to the ER over the last 2 years I gave in and finally decided to have my colon removed and go with a Jpouch. It has its Pros and Cons however I now have a chance for a better life. I am almost off Prednisone. now tapering 1mg a month. Point is you have to make a decision - if Meds will not work for your UC consider surgery - it can turn your life around. Many folks here have much better lives now after Jpouch surgery than the constant Meds and Hospital trips they had with UC.
Posted 11/30/2016 4:47 PM (GMT -5)
I'm sure you've already made your decision but I wanted to reply because I feel like the paragraph above me is kind of making steroids sounds like the worst thing of all time. Granted they aren't good but if you decided to go on the IV steroids, they probably helped to save your life and even perhaps your colon! I was on pred for about a year and a half and got results recently that, from what the tests can tell, they didn't affect me long term (awesome news!!) and I was definitely on high doses of IV steroid for my time in the hospital—twice for a week each—and again, although they aren't the safest thing, they probably saved my life.

Just wanted to add in the voice saying that they are important medications and you shouldn't feel bad for going on steroids, oral or IV...especially in your circumstance.

Hope you're at peace with whatever decision you made and are heading out of the hospital healthier in the coming days.
Posted 11/30/2016 5:47 PM (GMT -5)
Hill - Im not sure how you derived your opinion of the so called paragraph above... I never indicated or stated that steroids were the worst thing of all time. I only point out while they are in fact often a lifesaver the long term effects are terrible for most folks. The long term effects I was speaking of are from an extended range of over 5 years. I was on changing dosages of Oral Prednisone for the last 5 years - just to keep me Alive and during the previous 10 years before that at least once yearly. Afterwards I finally realized it was a dead end road.

GingerGirl - Hope and pray you feel better soon.
Posted 12/1/2016 5:21 PM (GMT -5)
IV steroids make me go nuts after just two doses and I will never ever take them again unless I absolutely have to. Like, I was crying hysterically and uncontrollably in the hospital all throughout the day and evening.

I would ask to talk to the GI on call and ask for clarification. Did they do stool tests to rule out c diff? You deserve answers that make sense and that doctor sucks for being confusing AND just abandoning you and going on vacation with no warning.

Update us as you can. Get as much rest as you can while there. You are your best advocate and you know your body best. If the oral pred hasn't helped in a month, I would think it isn't going to, unfortunately. Solumedrol is just IV steroids.
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