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Admitted to the hospital

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Ulcerative Colitis
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Posted 9/3/2016 3:04 PM (GMT 0)
Hope everyone is doing well. I was bleeding like crazy 15 to 20 sometimes more a day. I decided it was time to go to the hospital and have a stay here. So here I sit. Been here since Wednesday evening and I think the only thing that has changed is the frequency and urgency has went down quite a bit. I've been receiving high doses of iv steroids that makes my joints ache, rowasa enemas, bentyl for the cramping, Percocet for the pain, protonix for my stomach, and they just took me off iv fluids. Still having quite a bit of blood and pain. Clear liquid diet which is almost impossible to eat/drink but I'm trying. Seems like nothing is knocking it out if me completely. I figured all the high dose steroids would do it but nope. I don't know where to go from here. I know it's only been 3 days but it feels like it's been a month... Theyve done blood work every day to check my crp which has been staying around 10 and my red counts are good which surprised me. I'm just wondering how long it takes for the flare to die off. My GI said he might put me on colon rest for a couple days and see how that goes and if that doesn't help he wants to start with remicade or humira. Anyone have any advice or suggestions for me? Anything I can do differently that worked for someone? I can basically get any medicine I ask for. Thanks in advance and thanks for reading this mess of a post.
Posted 9/3/2016 3:14 PM (GMT 0)
If you're not responding to steroids, perhaps it could be an infection like c difficile? I hope they've done a stool test to check... It's known for false-negatives, so I'd ask for a second test. Antibiotics treat infections...
www.ncbi.nlm.nih.gov/pubmed/18484669
Biologics like Remicade are often good rescue medications, especially when given at maximum dosage (10mgs per kilogram).

Cyclosporine is another great rescue medication when IV steroids fail. www.ncbi.nlm.nih.gov/pmc/articles/PMC1774959/

I hope you feel better soon.
Posted 9/3/2016 4:25 PM (GMT 0)
I'm waiting to see the nurse to figure out what happened with my stool test. My GI doctors assistant just came in and said he wants to taper off the steroids and get me on a biologic. I'm pretty scared about it. Is 3 days enough to see the effects of steroids? I work as a plumber and I'm really worried about them giving me something that will allow me to get infections and all that when I am messing with feces and other dirty things on the job. I don't know what to do...
Posted 9/3/2016 8:33 PM (GMT 0)
I've been on remicade for 3 years and haven't had any infections or been sick any more than normal. Your immune system is slightly reduced, but still functional on biologics. Everyday cuts and bruises are of no concern. Increases infection risk refers to UTI, Bronchitis, Sinus and similar, all of which require antibiotics to treat. And if you suspect you have one, you're best to seak out treatment early, as it will get worse faster and generally be more severe than a person who isn't on those drugs. Theres some good info on the risks and benefits of biologics on the CCFA website:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 9/3/2016 9:59 PM (GMT 0)
Hope you feel better soon. When you get home try making/drinking lots of chicken broth, very healing and nourishing.

Were you using mesalamine enemas before hospital? They really stop bleeding and heal the lower area. Suppositories are useful for maintenance but don't reach as much area as the enemas do. In fact you can start using them in hospital and get a start.

Diet modification has been very beneficial for me. SCD was somewhat helpful for me but not completely. I found keeping a food diary to track reactions helped me figure out what my problem foods were. Important not to get depressed that you'll "never" be able to eat certain foods ever again. As I healed and achieved remission some of those foods are now OK (per my gut) again.

Stay in touch and email me for specifics. But I'm happy to post here so others (lurking) get ideas also.
Posted 9/3/2016 11:00 PM (GMT 0)
Sorry to hear you are in the hospital. I just got out a little over a month ago. The high IV steroids worked for me, I was on them for 6 days before I was switched to an oral that I requested. How high of a dose are you on, can they increase it. Are they going to do a colonoscopy while you are there?

A food diary is a great idea, it will help you out a lot, I use one myself.
Posted 9/4/2016 12:21 AM (GMT 0)
I was in a similar situation and iv steroids didn't work. I was given in patient remicade at the hospital. Within 24 hours I saw a huge improvement. I was worried as a teacher that I would be sick all the time but after more than a year I've been nondiffernet than before remicade.

Best of luck!!
Posted 9/4/2016 3:13 AM (GMT 0)
Well they discharged me per my GI and my primary doctor. They tested my bloods every morning I was there and said that all my levels were solid. They were giving me 120mg the first day then 100mg the next and then 80mg before I left. My doctor has me coming home and taking 30mg oral twice a day now. The blood has been prevalent but the urgency and frequency has died off tremendously. Only having to go 4 or 5 times now. I haven't eaten anything other than broth and jello and I don't see how I can get any kind of formed BM with just eating liquids basically. The cramping is what is really getting to me. The bentyl kind of helps but not 100%. I asked about the rowasa enemas before the hospital but my GI thought the suppositories would be more beneficial for some reason... The enema last night seemed to open me up quite a bit. Still didn't get results on my stool test but I will call tomorrow and figure that one out. I know we all just want a miracle to get rid of this awful disease, and that's all I can think about. I'm sick of the bathroom, I'm sick of doctors, I'm sick of the what ifs and most of all, I'm just sick of being sick. I'm sure the stress and anxiety that is constantly running through me isn't helping anything. What do you recommend me do? Talk about the biologics or continue what I'm doing?
Posted 9/4/2016 5:09 AM (GMT 0)
Hi redseal25,

I got admitted to hospital about the same way you did, really sick. I wish I had started a biologic at that point, instead of bouncing around with 1st line meds like Lialda and Balsalazide. I'm on Humira now, it helped a lot, not perfect but way better than going so many times a day and never getting a decent night sleep due to getting up to use bathroom every two hours.

I know the biologics seem scary but the benefits definitely outweigh the risks, especially if you are sick of being sick.

Good luck and take care.
Posted 9/4/2016 7:29 AM (GMT 0)
Hi there, so sorry you're dealing with this nasty flare. I recommend trying a biologic. I put it off because of fear; once I started remicade, I wished I had agreed to it sooner. I had immediate results and no side effects other than a headache during the loading dose infusions. As far as infections, I've not had any problems. I can't even remember when my last cold was. I briefly tried humira but it wasn't a good drug for me...several side effects. My hallmark symptom is cramping which you mentioned. It probably means you still have inflammation and once under control should subside. Mine are so insufferable and take my breath away. After my first infusion of remicade, my cramps were gone. Biologics can turn everything around so definitely worth a try.
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