In the hospital- advice needed

Hello,

My name is Sarah and i'm 26 years old. I've had colitis since i was 12. I'm currently in my third flare, and this is day 6 in the hospital, still hooked up to iv's. I have never EVER brought myself to the hospital. I tend to be stubborn and let this go about 3 months before I ended up here. I started flaring around Christmas time, but was still going to work and trying to keep going. Gradually it got worse and worse, until the 23rd of March I went almost 20 times and nothing but blood and horrible gut pains were happening. I know I shouldn't have waited so long but when you live paycheck to paycheck... I didn't want to go broke.

When I came in on the 23rd they gave me a prescription for asacol, and sent me home. I still have asacol so I didn't need to get filled up. went until the 27th with the same symptoms and then dragged myself to the ER.

I have lost my job, even after asking the owner for help. I have messages saved about what my manager said about me, incase I ever need them. They left me jobless, after me asking for help.

Currently I'm waiting for a doctor to come around with my colonoscopy results... I don't want anything removed, I don't even want to go on remicade but if that's what needs to be done then so be it. I have been on steroids through the IV for a good 4 days now. Still blood,mucous and runny stool. Just wondering if anyone has had such a hard time like I am? It's horrible all the stuff I have to think about and deal with now.

thanks for the reply. I am still waiting around for a doctor to come around...

I'm worried about the remicade, and also worried about the steroids they have me on. They don't seem to be working very well although i did go from 15+ times a day to about 6-8. still too much I think but better. I'm not sure how much of my colon is effected versus when I was first diagnosed, I'm pretty anxious to hear back.

Sarahtbruce said...

I'm worried about the remicade, and also worried about the steroids they have me on. They don't seem to be working very well although i did go from 15+ times a day to about 6-8.

If you can switch from IV steroids to oral steroids and possibly rectal steroids, with 6-8 stools that are formed or partially formed, with no blood then I think your GI would consider this to be positive.

In my case I went down to around 8 semi-formed stools with little blood on the iv steroids but when I switched to oral steroids I flared up again - back to 14+ loose bms. The cyclosporine worked overnight - literally - but it's only a short term option to give imuran /azathioprine /6mp time to work.

Try not to worry too much. Take it one step at a time. I know that's easier said than done - I was very worried when I was in hospital but I'm doing much better now. Hopefully you'll be much better in a couple of months (it does take a little time to heal).

Sounds like your boss was an idiot - you'll find a better job!

what the hell are you smoking gary ?

apparently gary is smoking the same stuff the doctors are....   Sarah, do you like & trust the doctors treating you currently? If so, listen to them- and to your body, & your instincts. Good luck- however it goes, this will pass & you will feel better!

Sarah, so sorry you are having a bad time. Just take it one day at a time and ask questions here as you get new information. Ask for copies of all your tests (colonoscopy, blood results, etc) to take home and start keeping a personal file so you can learn more about your condition. Know as much as possible about yourself.

I hope you have someone to help you when you get out so you can focus on getting better.
Obviously you have internet access so you can explore what your medical choices are. Surgery is just one choice and it seems very premature unless your life is in danger right now.

A lot of us stayed in denial about how bad our symptoms were, it was easier than dealing with reality. If you can get things under control you can live a good life with UC. There is no single solution for everyone, some people do well with Remicade or Humira or surgery or diet modification or fecal transplant or nicotine patches or...well there's a loooong list.

#1 is to start using rectal enemas, now and when you get home. Hope you can qualify for Medicaid and get them free. Use them every night along with whatever oral meds are suggested or Remicade or whatever. Yes start with steroid enemas but then move on to mesalamine enemas.

Best wishes on your recovery.

When I had my first flare 10 years ago that landed me in hospital the same thing happened. What they tried wasnt working so the docs went ahead and booked me for surgery. I didnt want that at all. So we had to fight to get on cyclosporine for a short period and it worked. It helped get some control. I ended up getting to leave the hospital after that with the salofalk, imuran and prednisone. I would push for them to try the cyclosporine while you are in there.

they want a TB test done on me does that mean they will try the remicade?

They still have me on the steroids. Could be later today or tomorrow that they do the TB test. The doctor said something about because I'm on the steroids that they will have to test me for TB twice...it's confusing. Then afterwards im assuming they will try the remicade but for now im still stuck on IV steroids.

Well if they use the remicade they better not discharge me!

They should've kept an eye on you to see how you reacted instead of making you suffer more. My doctor said they aren't letting me go anywhere which makes me feel a bit better because I feel like if I go back home I'll go through this all over again.

skip to surgery?!?...what the hell????

lots of other options first before you do that....slooooow down there buckaroo.......

They may also want you out of there because if they do put you on Remicade the last thing you need to be exposed to is a portable potty with someone else's feces in it!

your flare sounds alot like the one i had after having my baby. as soon as they put me on remicade i started seeing a big difference and with the mix of imuran i actually went into remission. who knows it might actually work for you.

Sarahtbruce said...
Well if they use the remicade they better not discharge me!

They should've kept an eye on you to see how you reacted instead of making you suffer more. My doctor said they aren't letting me go anywhere which makes me feel a bit better because I feel like if I go back home I'll go through this all over again.

Wellllll... in the defense of my doctors, I wasn't being given pain medication, and the steroids calmed my symptoms down enough that I was able to hydrate myself without an IV (~10 BM/day), so I asked to go home. IBD patients are also at a significantly increased risk of contracting C. diff in the hospital, which is the last thing you want right now -- another really good reason that you should be placed in a private room, away from an open-air commode!

If they're going to keep you in the hospital until the Remicade kicks in, that could be several weeks (or more), so make sure you're mentally prepared for that. Make sure you're walking as much as possible. After my 10 days in the hospital during that flare, I couldn't even walk up a flight of stairs.