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First Time in the Hospital

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Ulcerative Colitis
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Posted 12/17/2008 12:58 AM (GMT 0)
My doctor today said it's time for a second opinion.  I was scratching my head since she has been my doctor since I was diagnosed.  I was supposed to begin Methotrexate today but instead was send to admitting through the ER.  I knew I was dehydrated but she said she is throwing the book at it to get me back into remission.  This is after dropping 10lbds in 5 days after so many trips to the bathroom I lost count.  It got so bad that I starting vomiting while in the bathroom due to the dehydration.  So, here I am in the hospital already having started The IV for hydration along with Protonics  40 mg

Leviquin  (antibiotic) 500 mg & Prednisone 20mg.  Uggh  not again with the prednisone!  I hate the side effects of prednisone.  I just lost all the weight I gained on it from this current attack.  I am surrendering and the doc is talking about my most feared drug remicade.   I guess you have to put yourself at risk for other possible side effects instead of living your life in the bathroom with the fear of accidents, embarrassment and when the next time you will be up the creek without a paddle.  Just wanted to post this to people that understand!!!

Posted 12/17/2008 1:21 AM (GMT 0)
Try to not get stressed that will make it worse. At least the pred will make you fell better. I know how you feel -my doctor just said "by the way we are kindof running out of options here". I've been kind of upset which really just makes things worse I think.
Posted 12/17/2008 1:42 AM (GMT 0)
Being put on a TPN and all liquid diet helped me when I was hospitalized. You get a bit tired of strained broth and gatorade but it can give your intestines a chance to heal.

Don't talk to me about those steroids though mad
Posted 12/17/2008 2:02 AM (GMT 0)
Don't be too afraid of Remicade! Its not so bad, it hasn't really worked for me yet, but I'm not giving up hope. All those scary things they tell you are very, very rare...they just have to make mention of them. Since I've gotten it the worst thing that has happened was having vasospasms in my veins (which are even more rare than allergic reactions.) But I've never had an allergic reaction or been sick and nobody else has ever had a reaction while I was in the infusion center getting it along with them. It does make me a little tired after the infusion and I normally sleep the rest of the day away, but thats it!
Posted 12/17/2008 4:03 AM (GMT 0)
I know everyone is different, but I'd rather take drugs that put me into remission and deal with the effects of it later on in life than hold back on the medicine that really helps because of the fears of the latter effects of it. I truly am thankful for the Humira. I did try Remicade, it made me well enough to get out of the hospital when first diagnosed. I thank God every day for this medicine. I don't know where I'd be if it wasn't around.
Posted 12/17/2008 2:20 PM (GMT 0)
     We all hate taking prednisone here, but it does help attain remission.  However, I see you are only on 20 mgm...that is relatively a low dose.  When I had my PIC line in, they were giving me 60 mgm.
Posted 12/18/2008 12:26 AM (GMT 0)

Thank you to all for your insight.  They did actually increase the prednisone IV to 60 millagrams per day 20 mg every 6 hours.  They have me on a clear liquid diet too which was mentioned here.  I requested to see a colorectal surgeon.  Though I know these side effects of the heavy duty immune suppressors are rare, I have seen postings from people here on this sight who write "Resection-Med free".  How I wish that would be the case instead of the fears we all live with for the next attack.  I feel that this disease is a cyclical and unpredictable disease that interfers with the most crucial aspects of life such as trying to take care of 2 young children and work for a living and having to explain to everyone around you that you are taking yet another trip to the bathroom.

I said to the atttending GI doc "This is only a patch but I am sure I will be here again as history has shown".  He said that some people say surgery is a bandaid too becuase they can remove a portion and then you are back in this position deciding to take the meds or cutting another part out.  Too many risks to weigh no appealing option other than keep me out of the bathroom and functioning please-I miss my kids but can't make it home right now to see them.

My husband always tells me I always seem on edge especially when in an active flare.  I just can't help being so high strung when I live in the bathroom and for the bathroom.  When you have such high demands of life and the desire to live it normally it is hard not to be a bit overly anxious. 

I really appreciate this site! Finally, the outlet with real people who know what this is all about!!! :-)

Posted 12/18/2008 12:48 AM (GMT 0)
Do you have UC or is it Crohn's? Because if it's UC, they shouldn't be taking "parts" out, and they won't need to take any other parts out later. It's a total proctocolectomy, removal of the whole colon and all but about a centimeter of the rectum, the first time (with or without the j-pouch--if with, it's usually called a "restorative proctocolectomy.")

Once in a while you hear about someone who had only part of a UC-afflicted colon removed; they do almost always need more done, which is why that is not considered a viable surgical treatment. If it's Crohn's, on the other hand, what the GI is saying about surgery makes more sense.

I had the surgery--send questions if you've got them!

Post Edited (Charlotte Gilman) : 12/17/2008 6:32:40 PM (GMT-7)

Posted 12/18/2008 12:55 AM (GMT 0)
I don't think that's too bad of steroid dose for being hospitalized. I was at one time on 180mg a day. Nearly ruined my life. I don't really know if the dosage was a mistake or not but I thank God I'm still here :-) If you start to feel stir-crazy or depressed let your doctor know so they can help you. Alot of the struggle we all have with UC is the mental aspect. Just stay knowing that you do have a life outside uc.

Blue gatorade and lollipops helped me through the all liquid stage for sure smilewinkgrin Aaah and those little cups of orange sherbert! My hospital had the best ice cubes too haha. I know its cliched but I tried to look to even the stupidest things for comfort. I'm only 19 so I feel like I just can't despair yet. Thats not to say I don't every once in a while.

Has your doctor talked to you about humira?

I can see your point about surgery. I've even begun considering it. Everything takes so much time it seems, and then to not have it work just puts you down. In my opinion you should talk about humira first. For some people its worked wonders right off the bat, and even others its taken longer but still a godsend. I
m still in wait-and-see mode, hoping its my answer.
Posted 12/18/2008 2:00 AM (GMT 0)
greetings
i am just about two weeks out of the hospital after a 5 day hospital holiday for my UC flare. Actually it was my third stay in 10 months -- once back in March for UC and then one in early November for a blood clot that is related to the recent UC flare. In any event, the IV pred, hospital TLC -- really and remicade and all the other drugs that I am on seem to being be doing the trick.
Hospital stays, while not fun, do help you start to heal and can give your doc an opportunity to try something new.

I hate the pred but it is the only thing that works for me. I am tapering off of the pred now -- starting 40 mgs from a high of 60 and hope that I continue to heal. Something that helped me while in the hospital and now that I am home are guided imagery recordings and affirmations that I listen to on my I-pod. I got them from healthjourneys.com. i listen to the one for IBD and the one for general health. They really calm me down and help me concentrate on feeling better and in control of my own life. The pred makes me crazy, anxious, manic, euphoric and mean and then some the whole gamit of emotions I also have bad night sweats from it -- so anything I can do to slow my self down helps. I highly recommend the series even to folks who don't believe in the power of white light -- there is something on the recording for everyone.

Good luck with your quest for remission -- it is attainable.
Posted 12/18/2008 2:20 AM (GMT 0)
If this is the way your disease will be -- with such severe flares -- surgery might be the way to go. I don't know anything about remicade but I can tell you that decades with this disease is not any way to live (although I've made the best of it).
Posted 12/19/2008 1:45 AM (GMT 0)
Ever_Hopeful

Yes, the doc has mentioned humira and I have weighed my options with that verses Remicade and Methotrexate. It has been decided that Remicade and prednisone is the final treatment plan. I did talk to a colorectal surgeon today and he said that there are so many other meds out there to try before leaping to surgery. He spoke with me in depth about the surgical road and after discussing it, the meds seemed like the better choice. Reading aabout the sherbert made me salivate. They should at least give you more options than thre same exact items on your liquid diet tray than chicken broth, lemon ice, tea, juice and jello. What about vegetable broth and beef broth? How about something other than lemon ice? I don't think I am gonna want to look at any of these foods they are giving me for a century.


Charlotte

They are unclear whether is the UC or Chrons! I am diagnosed as UC/Chrons Undifferentiated. Thanks for being avail for questions!

UC/Diabetes Girl

You give me some hope about the remicade!

Peety

That is really all you can do with the cards you are given. Still trying to remain positive!

Thanks for all your comments! It has made this stay at the hospital give me a little hope!!
Posted 12/19/2008 2:12 AM (GMT 0)
Aaaah at my hospital it beef and veggie CONSOMME and the ubiquitous "strained soup". Once they got lazy and just sent a bowl of hot water a little packet of pasty "vegetable boullion". For breakfast, for some reason I never understood, I would get SALT FREE chicken broth. Basically lukewarm yellow water. The real torture was the guest tray they would bring my mom who was staying with me. Hospital food had never looked so good to me in my life, and I would have done anything for her saltine crackers tongue

Oh, the wonders of hospital nutrition.
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