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Posted 4/20/2013 11:39 AM (GMT 0)
So....after 2 1/2 months of flaring, progressively feeling worse, and having difficulty getting care due to circumstance with various doctors I've seen...
I brought myself into the emergency room last Tuesday morning. Been here ever since.... came in dehydrated, tachycardic and in lots of pain in whole torso.

Manymany test later they have finally figured out I'm flaring!!! Had colonoscopy yesterday, upgraded to pancolitis and been on 60mg steroid IV for 3 days. They are hoping to tame the flare before releasing me and if I respond to steroids, looks like I'll be joining team Imuran!

Feeling loads better now that I'm hydrated and blood levels are back in check. Have sporatic internet on phone so will checkin when I can.

Been rough couple weeks but glad to be getting care and hopeful that I'll respond well to new drug plan.

Post Edited (canadagal) : 4/24/2013 9:57:05 AM (GMT-6)

Posted 4/20/2013 12:05 PM (GMT 0)
I'm sorry your in the hospital but it sounds like that is the place you should be. I'm glad you are being well taken care of. I hope you heal fast and can get out soon to sleep in your own bed. I don't know what it is about hospital beds but after a while, they get pretty uncomfortable! :)

Btw, I don't know what kind of phone you have but if you have Wi-fi, most hospitals have free Wi-fi. That may allow you a more steady connection.
Posted 4/20/2013 12:08 PM (GMT 0)
Canada,

Sorry you ended up in Hospital, but Glad to hear you're starting to feel a bit better - no doubt due to IV.

I hope imuran helps.

Take good care.

 

Posted 4/20/2013 12:21 PM (GMT 0)
Yes it is the wifi just a very weak signal. Today isfirst day I can stay connected for more than a few minute...maybe due to weekend?

Yes the flagyl , IV, morphin, and steroids are all making life much better lol but RED you are right. This bed sucks!

Ruled out c.diff but since I still have bad dia. They keep me in isolation so atleast I get my own room. :)
Posted 4/20/2013 3:55 PM (GMT 0)
Good you went to the hospital and are now starting to see improvement.

Keep us updated on how you're doing.

It's a relief to hear the c.diff was negagive.

q
Posted 4/20/2013 4:50 PM (GMT 0)
Yeah, feel like I rewound the clock by about 2 months
Symptom wise, I feel like in early part - still not great but atleast only dealing with gut instead of everything else that accumulated while trying to get care.

Just so frustrated that because it went on so long diagnosis is worse than if we could have treated it on onset in early february.

Glad to get a thorow look over though and know the only thing wrong with me is the ibd....
Posted 4/21/2013 1:56 PM (GMT 0)
Well, day 6 in hospital.... getting bored. Dying for a shower and a cup of coffee.

Still slowly improving. Over all feel better than I have in weeks but stll cramps, diarhea, mucous blood. Urge and frequency going down. 60mg of steroid kicking in to insomnia.

Did more bloodwork this am. And still waiting on parasite stool test results so still in isolation. Generally, care has been good. Staring to feel like a watering can with so many holes in my arms....

Yet to see doc. Today so no idea how much longer I'm here for.
Posted 4/21/2013 6:11 PM (GMT 0)
My replacement GI IBD specialist finally came in to see me. Good news is he is comfortable trying to maintain with mezavant. Just get the flare calmed with steroids. So althought now wanting to be on pred. If I can buy a couple more years of remission before stepping up to imuran or remicade, at this point I'll take it.

So gonna do another day or 2 or IV steroid and then try oral before being discharged....
Posted 4/22/2013 8:10 PM (GMT 0)
I was just recently in the same boat Canadagal. I was taken to the ER on the 8th and admitted pretty quickly. I was there for 8 days, but they wanted to keep me longer. They were ok with me going home so I did. Same situation. Nothing was working & when the pain got too much I asked to go. They had to give me fluids and potassium by IV because I was so very low. They made me swallow 2 pills too while I felt my arm was on fire from the potassium. All this while trying to drink the oral contrast fluid so I could have another CT scan. All this while in the ER.

In the room they gave me 40mg IV, but said it was stronger than taking it orally. They were also giving me Xanax by pill form, pepsid by IV, Flagyl by IV, and morphine for the pain. I was throwing up while having bowel movements at night so they started giving me phenergan by IV at bedtime. You should ask for that! Knocked me right out. Slept like a baby! I even slept through the vampires coming in for the late night bloodwork.

They tested my stool too and I was negative for C-Diff and I too got my own room. Such a posh room too. I couldn't eat for 4 whole days until the pain wore down. I was there because I had stopped eating for 3 days.

Stay there as long as they suggest. I feel so much better now. Still D several times a day with some pain and I'm anemic, but I felt better for staying.

Do they have you on a "Low Residue" diet while there? I had a specific menu to choose my meals and the staff made darn sure I didn't eat anything that could irritate my colon. Meals were stripped down of any roughage. I must say the baked cod was the most delicious cod I've ever had hands down. The bed was irritating after day 6 when I could finally get myself in the shower. Boy did I stink!!!
Posted 4/22/2013 8:35 PM (GMT 0)
I'm glad you are seeing improvement!
Posted 4/22/2013 8:35 PM (GMT 0)
yes Indiana it sounds like we've had similar ordeals.

I am on a low residue, soft food, no dairy restricted diet..... of course with the steroids now, i'm hungry but have just what they give me.. I had lost about 12-13lbs in the 2 months leading up to this crash. And then 4 days of liquids only... so I'm sure i've lost more since being admitted,

Things are going in right direction, just slowly. so far today (since midnight) only 1 BM which is good, but it was still bloody mush. Still loosing too much blood so my hemoglobin is still low ( not anemic but low) so they want to keep watching me to get my levels up.

the more time i spend here and get snippets of info (levels, change of wording,) I realise how bad I really was. Glad I came in when I did or it could have been much worse on all my organs.

Last word today was 24 more hours on iv steroid (solumedrol) then try oral... so just in a holding pen, making sure i keep going in right direction.

oh well could have much worse I guess, just focusing on healing and hopeing to get home soon. I did have my mom wash my hair in the sink yesterday and that felt good. Still not allowed out of my room.. which is funny cause we all know i'm not contagiouse, but I won't fight it ... it is buying me a private room with bathroom...
Posted 4/23/2013 2:59 PM (GMT 0)
latest news from my case GI - still another couple days.... so frustrating. He really wants to see bigger results from the solumedrol (steroid) before going oral pred. Day 6 today at 60mg intravenously.

seems like right now I have 3 GI's - my regular who is out sick himself.... my temporary (while reg. is sick) and now the in hospital one. They all sort of work together, but each seems to have a different approach to my case, different ideas of how quickly symptoms subside and how aggressive to go with meds...

Getting frustrated here... still glad to be getting care but come on already...
Posted 4/24/2013 3:56 PM (GMT 0)
well day 8 and still in hospital. progress is slow slow slow....
60mg of steroids do not seem to be doing the trick... grrr.

they want to do another partial scope tomorrow to see if any healing happening and if not... looking at Remicade next.

Not what I wanted but dont' know what else to do.

unless we get the bleeding and diarreah undercontrol, they wont release me as my body will just shut down again...
Posted 4/24/2013 4:28 PM (GMT 0)
I didn't realize you were in the hospital.

What happened to imuran?

Did you not see improvement on 60 mg at all?
Posted 4/24/2013 5:10 PM (GMT 0)
Do they have you on any antibiotics?
Posted 4/24/2013 5:25 PM (GMT 0)
day 7 of 60mg intravenouse steroids... no significant change in symptoms.
I feel tons better over all but the bloody diarreah is not changing much. think in about 24 hrs they close the book on that...

wont do imuran if not responding to steroids..
so remicade is next in line....

we did flagyle for 48 hrs or so.... all test came back negative for infection but they are going to retest with my next stool sample....
Posted 4/26/2013 12:54 AM (GMT 0)
well on to remicade we go...

my inflamation markers are starting to climb again despite 9 days of steroids....

Here is hoping it will be my miracle drug!!!!
Posted 4/26/2013 1:14 PM (GMT 0)
So hoping it works for you, how frustrating. My 12 year old son just spent 8 days in the hospital and was on 60mg of solumedrol for 5 days also. It did clear his up but ONLY WITH LIQUID NUTRITION DIET - Pediasure Peptide - broken down. Tried solid foods and lowered to 50mg and bleeding returned a bit. So on Peptide for 1 week and doing okay on 45mg Prednisone now with a few specks of blood. Hang in there, sending good vibes!
Posted 4/26/2013 1:57 PM (GMT 0)
Thanks Dawn,
HOpe your son turns around soon too....

day 10 at 60mg solumedrole and barely any effect.... not much choice left.. I'm staying positive and hoping for great results.
Posted 4/29/2013 2:46 AM (GMT 0)
Well day 13 and still here, blood markers all going in right directions just very very slowly. visible symptoms remain unchanged... bloody diahrea 4-6x day...

remain on day by day standby status - thank goodness hospital stay is free.... surreal really never imagined my UC would ever put me in hospital (even though I know many of you have) let alone for 2 weeks now... (denial denial denial)

no obvious side effects from remicade in 48hrs so that is good - seems I tolorate it, now for it to kick in....

told tonight that i got my last solumedrol steroid shot, they will switch me to oral pred (40mg) tomorrow (from 60mg)
Posted 4/29/2013 3:26 AM (GMT 0)
hi canadagal, sorry you're having such a rough time. I had a very similar experience when I was hospitalized in November -- the IV steroids gave me an immediate improvement but then I plateaued and they never helped me any more than they did in the first few days. I too was started on Remicade while in the hospital and then discharged on oral pred. I was really disheartened but the hospitalist told me it is not unusual for IV steroids to work that way, typically you will see a big improvement right at the beginning and then that's pretty much all you'll get from it.

Unfortunately I was a non-responder to Remicade, but I'm happy to report I'm med free now. Tons of people here have been getting great results from Remicade lately, I'm sure you will be one of them. Good luck and feel better!!
Posted 4/29/2013 1:11 PM (GMT 0)
I just went through something very similar, canadagal (I'm located in Canada too)... Hospital for about six days, started Remicade while I was in there. We opted to run with this pretty quickly once I got in. Guess my ability to gauge how bad my flare really was was a little skewed.

But everything you're talking about sounds about like what I was having done in the hospital as well... IV Steroid Solumedrol didn't do too much for me. Turns out steroids have little-to-no effect on me. Getting hydrated again was a big deal while I was there, that's for sure. They took my off the IV steroid and put me back on Prednisone oral after about five days (also 40mg). The first day or two switching back was tough. If you are at all affected by the side effects of steroids (unfortunately I am, but without the positive UC effects), be prepared for a few shaky days making that switch, both UC-wise and things like increased heart-rate and all the other fun discomforts that come with Prednisone.

Today is my second loading dose for Remicade. I definitely felt some positives the first time around... It did take about five or six days to notice dramatic improvements. Nothing miraculous by any means, still was going frequently, but a lot of positive signs between then and now to give me hope (blood, cramping and spasming subsided quite substantially). It has been two weeks now and I've regressed a bit closer to where I was... sort of got to a plateau of sorts and then started to slide again. I'm banking this second one will kick it back into a place where I can start building my strength back up.

Good luck!

**EDIT - Can't quite seem to get my signature to update properly...

Currently taking: Remicade, Prednisone 40mg

Previous medication: Mezavant 4.8g, IV Solumedrol, Entocort
*Steroids have little-to-no effect2
Posted 4/29/2013 2:02 PM (GMT 0)
Thanks guys, reassuring to know similar situation didn't take drastic turn for the worse... of course back of the mind plays the what if game.... and surgery is not a thought I want to have to entertain...

Just took my first 40 oral so we will see how that goes. still waiting on today's blood work too...

Dying to get home but know this careful daily monitoring is best...
Posted 4/29/2013 4:48 PM (GMT 0)
F... Predinsone oral or intra.

yeah, it works for me too, I did receive the 60mg intrave and it worked in 2 days or so. But pred carries so many side effects, I don't want to be on it. I'd rather flare and crap blood yo.


8 days or more in the hospital, omg. I think I stayed and it was my longest stay, 5 days. I was ready to leave on the third day.

"and surgery is not a thought I want to have to entertain..."

Oh, you will entertain it, trust me. You think you can yo yo like this forever. I thought so too....not so much now. If you can't find something that will give you long term remission, you will entertain. You don't choose surgery, surgery chooses you.

Posted 4/29/2013 4:54 PM (GMT 0)
just wondering somedude, what are your symptoms like right now and what would make you get surgery? i can probably go to the hospital right now and then tell them oral pred didn't work and have them poke me with iv steroids and what not but I'd rather not have that. I'm going to exhaust all options before remicade then... scissors :S
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