first hospitalisation... sepsis + UC

I got out of the hospital earlier this week -- first time I've been in with my UC -- and am still soooo tired. Feel like I've really been through the wringer.

Quick background: My UC had been in a mild but manageable flare for ~year, then been getting worse for a few weeks, then I had a mild fever for a few days and woke up one morning with tender, swollen red lumps all over my legs (erythema nodosum). After going to a walk-in clinic and then the ER, I went home to follow up with a GI the next day for treatment. But then I took a turn for the worse, and the next day ended up being admitted to the hospital with sepsis: massive infection, high grade fever, very low blood pressure, etc.

Once they stabilized me (the doctors moved really fast when they realised I was septic!), I was moved to the gastro ward. In addition to the broad spectrum IV antibiotics (cipro + flagyl), they also put me on IV steroids -- dexamethasone, since I've had problems with prednisone in the past. Unfortunately, the dexamethasone made me hallucinate anyway, so then they had to put me on anti-psychotics (seroquel).

Also, they've started me on 6MP, although I understand that will likely take a few weeks at least to kick in. And I'm still on salofalk, pills and enemas (although am having problems retaining the enemas).

Anyway, I'm out of the hospital now (after beating the experts' opinions and getting myself out of there in a week), getting healthy food and resting. My regular GI is away, but I've got an appointment to see him next week, and he'll have my charts from the hospital so I'll be able to get more specifics then on next steps.

In the meantime though, I am soooo tired. My UC actually feels better than it has in ages (less urgency, less BMs, less pain, less cramping), but my body is just completely drained. In addition to being extremely tired, I feel lightheaded, my heart races easily, and I feel very groggy. It's frustrating, since I feel like I'm ready to get back on my feet but my body just isn't cooperating.

I'm wondering how much of this is due to the UC, and how much to the sepsis. Or maybe it has more to due with the drugs they've got me on now. I gave myself a good scare, so am not going to push going back to work until I'm strong, but would like to have a better feeling of how long it will take to rebound.

Has anyone else has dealt with sepsis and UC? If so, how was the recovery? Also, has anyone else used dexamethasone/decadron, or other steroids as an alternative to prednisone?

Yes, I was lucky! I really didn't realise before how serious sepsis can be. Needless to say, it was a real scare.

The doctors have done quite a number of tests but still haven't determined what exactly caused the sepsis -- I didn't get it in the hospital though.

I'm hoping that I'll be able to bounce back soon, but it's so hard to figure out the impact of the sepsis on my UC...

wow, I'm glad you're ok! I just got out of the hospital too and it was pretty scary. The only thing that worked for me was the remicade. Not looking forward to the bill! haha

I too was hospitalized with sepsis a few years ago, in 2008. It started with me feeling generally horrid, but I ahd been on a fairly quick pred taper, & thought the way I felt was due to that. My UC was pretty active, but it was not my worst flare. I had just started Remicade about 10 days prior to feeling really bad. I kept saying if I don't feel better, I'm calling my doctor- well, I woke up with yellow eyes & an overall yellow tings to my skin & immediately called my GI. When I told them I was jaundiced & taking into account my starting Remicade, they all assumed it was a reaction to the drug, & told me to get to the ER ASAP. I did, & was admitted from there with strep pneumonia, drug induced hepatitis, abnormal heart rhythms, & sepsis. Things got a little hazy after that- I was pretty much incoherent & out of it for about 3 days, was in ICU for 5 days total. I was put on Rocephin, other antibiotics, IV steroids, & god knows what else. Apparently my family was told it was pretty bad, could have gone either way. But, I recovered! There is no doubt in my mind that if I'd waited even one more day to get medical care, it could have gone an entirely different way. Turned out that I had most likely contracted the pneumonia prior to my Remicade infusion & had not started to develop symptoms. The infusion kicked the infection into high gear & that was it, the sepsis came about due to the high levels of bacteria in my blood from the illnesses. I don't know any specific bacteria that caused it- it may be in the hospital records. But recovery took a long time- I was in the hospital for 7 days, out of work a good 5-6 weeks. I could barely walk to the mailbox when I got home, so tired & completely groggy & spacey, it felt like I had lost half my brain cells! I was sleeping about 18 hours a day. My PC told me that was normal, after an experience like that. It did go away, but it really was a good 3 months beofre I felt ok again. Just like you, I had no idea how sick I was. And I know EXACTLY how you feel, physically- it will pass but it'll take a lot longer than you wish! Take it easy for now, rest a lot, eat as well as you can.