Hospitalized, help!

I was hospitalized two nights ago with bad dehydration after my current flare (ongoing for six months except for a month when I had high doses of prednisone) worsened to 30+ BMs per day.

I've been put on bowel rest (nothing by mouth) so my BMs are easier and I have a lot less pain but I'm still going maybe 20x/day, still seeing large pieces of bloody mucus about 1/3 of the time.

I'm on cimzia and mtx but fairly recently so we can't tell if they aren't going to work for me or if we just need to wait. I met a surgeon who was very nice -- he says it is still too soon to do surgery but if things don't improve soon I will need it. There is also some concern that I might actually have crohns (I am dx'ed with UC pancolitis) in which case a j pouch step 1 stoma would end up being permanent.

I think IV steroids are probably the next step but I won't hear from the doctors until tomorrow. Not sure why I'm posting except that I'm scared and would love to hear from you all.

Thanks Joanna. I know the feeling, I was on the toilet at 3 AM and I thought that I wished I had one of those dog beds so I could sleep in the bathroom... And then I realized "I just wished I could sleep in a dog bed", just another total loss of dignity UC moment (since I'm already in diapers)

Thank god my parents are here with me. The nurses didn't seem concerned at all when I said I would be running to the bathroom and I didn't know how to handle that (they wouldn't even give me a rolling IV pole) so my mom has been carrying the bag into the bathroom with me.

Pluot,
I feel badly for you. Thank goodness your parents are with you. Nothing like unconditional love...especially from people who have seen you in diapers before! Hopefully, the IV steroids will work, if you and your doc decide to go with them. I've never been hospitalized for my UC (yet), but I can imagine how scary it must be.

You're not alone. I'm praying for you. BTW, even before I got UC, if I had a stomach bug, I would put the mattress of a camping cot in my bathroom so I could "camp out" more comfortably. Best investment ever. Take care!!
~Cita

Also have you tried all those meds just since may?

Good you reached out, it sounds scary. And glad you're in a place where you can get some help

Sending best wishes and thoughts of a better bowel for you.

Hang in there.

Nurses are tough cookies, diarrhea doesn't faze them though they could be more empathetic

Hope the hospital
, and all they do helps. It did for me and sometimes you just need to really rests for a few days, mentally and physically

Uhmmmmm why are you not on IV steroids already! My nurses were really understanding about running to the washroom except one. I was in a shared room so 1 washroom for 2 people and i reslly had to go and it was busy i asked the nurse for another and she said sorry wait... Like really.

I hate hositals i feel more stressed there and it feels like it makes my flare worst. I feel for you I hope you get better and get the hell out of there soon!

     Ditto the bedside potty.  Before my operation, total colectomy with end ileostomy, I was hospitalized twice with UP (proctitis).  Even though my bed was right next to the bathroom, I could never make it that far.  As soon as I felt that stabbing pain....bam...it came out.  I could barely make it out of bed to the bedside pot.  Are you in a private room?  I hated having a roommate because I always felt soooo embarrassed whenever they had visitors.  I always had the curtain pulled around me because I was on the pot so much..lol..oy...how I don't miss those days.  My last hospitalized with UP they had to put a PIC line in because my veins were shot.  I was scared to death because you have to sign a form for that and reading it just frightened the beJesus out of me...lol.  But in the long run it was great because they didn't have to come in and stab me a dozen times trying to get a vein.

     Sending well wishes to you.  Hope you feel better soon.  Oh...the doctor started me on IV steroids immediately upon admittance to the hospital.  I think it was a pretty hefty dose too. 

Pluot, I hope you start getting some relief from the IV steroids soon.

I have to say kudos to you: typing one-handed with a rowasa in, lol, very impressive... talk about multi-tasking, hahah...

It's good you have your family with you.

And I hope those nurses are more empathetic.

A big hug to you!

ActiveUCer, you weren't kidding, I feel amazing. Pain is significantly reduced, I only got up twice in the night for BMs, and I'm going 2.5 hrs between at the moment (sounds horrible but compared to 20 minutes I'm on my knees praising Jesus!). And this is after just 24 hours of IV steroids. The doctor says its 300 mg per day which is the equivalent of 60 mg prednisone PO.

I know all too well how temporary the relief from steroids is but at this point I'm just overjoyed to have a break and that a colectomy is off the table this week.

I think we are jumping straight to Remicade since it has a reputation for working more/faster generally than the other anti-TNFs (and I've already had little to no response to Cimzia). Everything I've done this year was to try to delay remicade and save it for the future, but I really believe it's time now if I want to keep my colon even for the short term.

One thing I am so grateful for is that I was hospitalized now instead of when I was first diagnosed. I've had to advocate for myself so much and it was such an uphill fight to get my steroids on board, I never would have known what to say and do if I hadnt spent the past six months educating myself like crazy.