Post Hospitalization

Good Morning folks,

I'm a 21 year old male-was diagnosed officially about two months ago. Last week I was hospitalized after an extremely bad flare up (Pan-Colitis). I was in the hospital for five days and was released yesterday.

To anyone who has been hospitalized for UC, I was wondering what your experience was like when you returned. The same day I was discharged I was feeling good-no real stomach issues was able to eat just fine (bit fatigued). The next morning it was like my body instantly did a 180. I hadn't had any rush to the bathroom during my stay in the hospital, yet the next morning was so bad I actually didn't fully make it in time
As the day has progressed it has gotten a bit easier but my stomach just feels like a war-zone.

Prior to my hospitalization I was taking Uceries and Apriso. The nurses on the discharge orders (and confirmed by the doctor at the hospital) ordered I continue to take that in addition to Prednisone (9 pills total between the three medications). I haven't had any blood in my BM yet but it is very, *very*, dark, and almost exclusively liquid (which again, concerns me because in the hospital when I was on the non-stop IV my BMs were more solidish).

I was just wondering if anyone had any reaction or experience similar to mine. Is this normal? Any advice, tips, or things to look for?

Thank you all for your honesty and time.

Don't take this the wrong way but the answer to your question is that it might be in your head. While in the hospital your brain may have felt more secure and that it could see the light at the end of the tunnel and you felt more positive about your situation. Now that your brain knows that you are no longer in the hospital that sense of security has been reduced and that light at the end of the tunnel has moved farther back and you have become more unsure of your condition. One of the things that I find most fascinating about this disease is all the placebo results on treatments. You would think that since we have a legitimate physical disease that there would be close to zero results on placebos but that is not the case. Stress also seems to be a big factor in symptoms and being out of the hospital might be causing you either conscious or subconscious stress, causing your condition to worsen.

garylouisville said...
Don't take this the wrong way but the answer to your question is that it might be in your head. While in the hospital your brain may have felt more secure and that it could see the light at the end of the tunnel and you felt more positive about your situation. Now that your brain knows that you are no longer in the hospital that sense of security has been reduced and that light at the end of the tunnel has moved farther back and you have become more unsure of your condition. One of the things that I find most fascinating about this disease is all the placebo results on treatments. You would think that since we have a legitimate physical disease that there would be close to zero results on placebos but that is not the case. Stress also seems to be a big factor in symptoms and being out of the hospital might be causing you either conscious or subconscious stress, causing your condition to worsen.

i couldn't have said it any better, @MarsRover stress & anxiety is a big factor.

Were you on IV steroids in the hospital? Or any kind? Are you taking the same amount now?

If you were on IV Steroids in the hospital and switched to oral, which may not be as effective as IV, it's your body reacting to the lower dose.

Or maybe you were feeling better and started eating more?

Regardless, you should ask about rectal meds. They are very effective and can be taken along with what you're taking now.

garylouisville said...
Don't take this the wrong way but the answer to your question is that it might be in your head. While in the hospital your brain may have felt more secure and that it could see the light at the end of the tunnel and you felt more positive about your situation. Now that your brain knows that you are no longer in the hospital that sense of security has been reduced and that light at the end of the tunnel has moved farther back and you have become more unsure of your condition.

Yeah, the liquid BMs all in his head

To answer the original question, I was hospitalised for 5 days when I went to A&E for the first time regarding my Crohn's - I'd been having increasingly high spiking fevers on Remicade. I was put on morphine and IV steroids, which gave me massive relief. My GI took me off the IV steroids the next day, sounding irritated with whoever had put me on them. I was put on metronizadole (Flagyl) instead. I don't remember much about the stay other than I was in a sideroom and I felt rough, but persuaded myself I was getting better. I was discharged on a Friday evening. I was feeling even worse, but persuaded myself it was the dreadful hospital pizza.

In truth I was relapsing before I was even discharged. Was back in hospital again a few days later. Once again they put me in a sideroom. My stool was tested loads of times. The tests must have all been negative for infection because I was moved out from the incredibly stuffy sideroom and into one of the bays, which was actually a relief. I was put on IV steroids and kept on them. In hospital for 9 days that time. CRP was 350 at one point.

I'd have been absolutely insulted if anyone had told me it was just stress/anxiety.

I was doing great when I was in the hospital, got out, was in remission. Things slowly deteriorated over time. definitely wasn't in my head and had nothing to do with stress, it's just my horrible, non-responsive UC. It's very rare to have a case that's as difficult to treat as mine. I am sure things will get better for you. There are a lot of medical options.

It can be c. Diff or a reduction in steroids or a combination of the two. Either way you need to get a stool sample which your GI can order. Call in the morning and ask them to order it so you can bring it with you to the appointment and find out the results sooner.