Help me get out of the hospital please

My new GI doctor had me try 6mp which led to a really bad throat infection I needed antibiotics for. The antibiotics really messed me up and led to diarrhea and bleeding. I spent the week after Thanksgiving at my local hospital for increased pain in my abdomen, increased bleeding in my stools, increased stools and fevers. They put me on Solu-Medrol 20 mg every 8 hrs so 60/day. The best GI doctor there according to everyone admitted he was stumped by me. He ran all kinds of tests, stool, blood and sigmoidoscopy and came up with nothing. He said my UC inflammation was mild and didn't match my symptoms. Got discharged no better than when I went in. I kept spiking fevers at home and when it was 105 about three days later my husband insisted on driving me to a great research hospital. I've been here for a week now and all the doctors keep saying they don't know what to do. They've run and re-run every test, blood, stool, sigmoidoscopy and for different infections and everything is negative. They say here my flare is severe. Could it have gone from mild to severe in a week?

I'm on Solu-Medrol here one time dose at 60mg which I think I'm responding to. It stopped the bleeding and cut down the BMs. But the doctors keep saying my inflammatory markers are bad and actually worse since I was admitted.

I've always been told that my UC is mild and that the symptoms I've had were out of proportion to the inflammation they've seen. This would be my first flare. I'm really upset that the doctors keep throwing around the word surgery the same as they do steroids. To me surgery is a huge leap that I wasn't ready for. They just did my first Entyvio infusion and I know it's going to take time to see if it's going to work. Another doctor mentioned trying Remicade, is that likely to work when Simponi never helped?

I'm really frustrated and upset. I have small children and it's been awful being away from them and they keep asking if I'll be home for Christmas. I never expected to have spent another week in the hospital and be the same and have the doctors admit they don't know what to do. I could really use advice. What treatment makes sense? What else should I know? Thank you!!

That is a difficult situation and I am so sorry. I don't think you should do anything too crazy right now, stay calm, try to get some rest and take care of yourself. If you've only had one infusion of Entyvio, I'd definitely keep going with it, don't give it up as an option to try something else because there isn't much else out there. If you didn't respond to anti-TNF, it doesn't mean you won't respond to any, but the chances may be lower, so Entyvio might be your best option. Remicade does have the highest success rate, so it's worth trying (and it's got a lot more freedom with dosing since it's not a set syringe), but I wouldn't abandon what you're doing to try it at this time. I would give the steroids some more time and keep going with this plan. Hopefully you're well enough to go home on the higher dose of steroids in a few days, you can get your next infusion of Entyvio when it's due and work on tapering off. I'd also add the basic meds if you can, the rectals and the 5ASAs. I would also see about whether they would consider any antibiotic? How many stool tests? C diff is notorious for being inaccurate, keep testing if you suspect pathogen. Some people have luck with antibiotics regardless, might be worth a try, flagyl or cipro or a combo of the 2. How about cyclosporine? or trials? there is one member here who is doing xeljanz trial with luck. I hope you can get stable and go home, get your thoughts together and then figure things out. hopefully things stay stable for a long period so you dont' have to think about anything for a long time. I had surgery, and while it sounds like the worst possible thing in the world (and it may be one of the worst), it's ended up being something I am thankful I did. I was sick of all the waiting and worrying. Just to give you the other side, it can free you. Of course, now is not the time t have it pushed on you. Just focus on today and getting better, stay calm. Did you have a endoscopy at any time to rule out crohns?

I've had 3 colonoscopies and 2 upper endoscopies. My last was both upper and lower in the fall and I was told the UC was mild. I've probably had at least 4 C-diff tests in the last few weeks. Plus other stool tests.

I'm really upset today. The GI doctor said she was wrong to say I could start Remicade, because I can't do that with Entyvio. Then she was back to saying my only option is surgery. She said she spoke to my regular GI and that my doctor would be by to talk about options. She keeps mentioning my high inflammatory markers. I've asked over and over again how my scans a week apart at two hospitals could be so drastically different but I'm not getting answers. She basically came in and stressed me out with no answers and waiting for my GI to come by. I feel like surgery has been at the forefront of her thoughts on my case and she isn't thinking about other options.

I'm still having fevers. I'm not ready to go from mild to suddenly I have to have surgery. Does that sound drastic to you? I know I've read posts here with people on steroids in the hospital for longer than I've been. Please help me figure out what to do.

what are your current symptoms ? do you need to be in the hospital ? if not, you can always just say "adios" and get the hell outa there -

My point was the UC=mild could have been based on the scope and UC=severe could be based on scope+symptoms+blood-work. Two different set of criteria can give two different results.

That's why I asked if "severe" was based on visual-only. I thought it could help answer the question you ask about how 1 week apart there could be two very different categorizations.

As for high inflammation markers - if it is in blood-work, it could be inflammation elsewhere in your system. The blood markers are not colon specific. IF a virus has your tissues generally inflamed ... well it could explain high markers when there was low visual evidence on the scope.

good luck

Post Edited (DBwithUC) : 12/16/2016 9:27:06 PM (GMT-7)

How much inflammation did they see in the sigmoidoscopy at the research hospital you are at now? And did they find the source of your bleeding?

If you are that sick but your sigmoidoscopy and stool tests look ok, they should consider an abdominal MRI to look for causes other than UC in the distal colon.

You have yeast infection in stomach. And anal passage. It can't be seen with colonoscopy it has to be done by doctor that treats yeast infections. I healed my self no yeast Ever again because. In hospital they wanted to amputate my feet I still have my feet.

I did and MRI. It just shows the inflammation. I'm very annoyed that they started Entyvio first. Even my GI doctor said Remicade is best for acute situations. I'm very upset that I could have messed up my chances for it to work by stopping after only one dose.

They are doing a bunch of tests for CMV, blood and cultures. I tested negative for it at the last hospital.

Anyone respond to Gabapentin? Pain team came by and recommended it. The next day was amazing I woke up in no pain. That doctor said since I responded so well to its a sign of a nerve problem somewhere. Anyone have this? How is it treated? And by who?

I just tested positive for C-diff. I'm told it's early colonization which would suggest I only recently caught in the hospital. However, the surgical team came by and the surgeon said he's never seen someone pick up c-diff from the hospital who wasn't on antibiotics. Which I wasn't. Despite all my many negative tests he seems to think this is all just C-diff. Is that possible? I want that to be what this is!!

I really hate all the doctors saying I'm an unusual case. That just seems to mean they can't figure out how to treat me so they're going to recommend surgery. As I expected their CMV tests were negative too. I was on flagyl and Vancomycin but after a few doses of flagyl they agreed to stop it since I was having sudden diarrhea. They said it was debatable if I should even be treated for C-Diff based on my results so I don't need two antibiotics for it.

I was finally starting to feel good but then they did sigmoidoscopy which messed me up. Then going on antibiotics gave me diarrhea and then suddenly stopping the antibiotics had the same effect. Obviously going to the bathroom 20+ a day is going to lead to stomach cramps and pain. I have no idea how I'm actually feeling because of all that. I made it clear to all the doctors I want to go home as soon as possible since I'm missing Christmas with my kids. The latest GI rotating on my case today again kept throwing out the word surgery over and over like its no big deal. He said my inflammatory markers are high and I am at risk of a perforation. My second infusion of Entyvio should be 12/23 but they're going to try and move it up so I can have it before I'm discharged. I don't understand this GI doctor thinking it could have an immediate effect. I was prepared for it to take weeks to see if I responded.

I'm either not responding to the steroids they are giving me or I'm a slow responder. I can easily switch to oral prednisone. Other than that they aren't doing anything but pain meds. I've now been in this hospital two weeks and I'm exhausted. I need way more sleep than I'm getting here. What would you do?

that's the worst. I feel like I'd be mad about the bypassing remicade, but I guess being you didn't respond to one anti-TNF, your chances of a quick turn-around are lower with remicade. Not to say they are non-existent, but they are lower... Id' still want to try it of course. I think right now, you have to move forward with the plan you've started. So try to get your entyvio as planned, it sounds like they are pushing it up, which is good. The problem with entyvio is that is not great for inducing remission, it's better for maintaining it - for me, it did nothing, as did none of the anti-tnfs. Nothing works for everyone. It sounds to me like you have c diff and you need to focus on healing that first. Once that's under control you can try to control the UC, it may be easier if you have the c diff in check. Perhaps a fecal transplant would be an option. That could help both situations.

Magnesium citrate is a laxative, so why would we ever want to take that other than as a prep for a scope?

right - i've had 2 or 3 flares in the last 4 years - all overcome w/o hospitals or drugs - much easier for me since i know what causes them, and can rectify the problem fairly easily and quickly -

you know what the hospital has done so far - not to say the next time might result in a better outcome, but not likely -

in some cases where they can't pinpoint the source of pain, gabapentin is given - no more pain, keep taking it, move on, no questions asked !

iPoop said...
Magnesium citrate is a laxative, so why would we ever want to take that other than as a prep for a scope?

depedubng on d0s3