HealingWell
Search Close Search
☰

In the hospital

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 23 4
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/8/2010 1:46 PM (GMT 0)
Well I'm back. I was told I have a unique case...my rectal area is very mildly inflamed but the next section is severe and the rest of the colon is normal. He said it's probably the rowasa that kept that section mild. He has numerous biopsies out for testing. He's starting me on flagyl, vicomayacin (not sure what that is yet) iron and blood thinners which is going to require a shot in my stomach. If the biopsies come back clean for infection we will be starting remicade. I'm also being kept here through the weekend.
Posted 4/8/2010 1:53 PM (GMT 0)
so If I understand right..the sigmoid is what is really bad?
I thought the enemas reached up that high..I would say that section is very vulnerable then..if the rectals handle the end part and the orals handle higher up and to the right..that descending/sigmoid part probably gets a beating...makes sense..
I hope you get better. Does he really feel the need for remicade?
Posted 4/8/2010 2:00 PM (GMT 0)
I've been on colazal and 6mp for years...been at 100mg of 6mp for two years and he feels they are not working anymore....I've tried other drugs with no success either. Remicade is one of my last remaining options
Posted 4/8/2010 2:22 PM (GMT 0)
It's called Vancomycin, it's an antibiotic and it's often used incojuction with Flagyl for a broad spectrum for bacteria.  It's a common one.  Glad your back.

MyUC

Posted 4/8/2010 2:34 PM (GMT 0)
He's giving me that just in case there is any cdiff infection or various others. Finally starting to shake this sedation
Posted 4/8/2010 2:42 PM (GMT 0)
or....the Colazal was very ineffective.

Did you have a c.diff infection in the past?

I would assume if you did have an infection of some kind, the 6mp and pred might have lowered your resistance to it. Shouldn't the doc have checked that you have it or whatever else before giving it to you, but best to do it in the hospital just in case.

I hope something works for you....let us know how the day goes, etc.

q
Posted 4/8/2010 5:19 PM (GMT 0)
I've had a few C Diff infections in the past due to antibiotic use and after finishing a month of Cipro he's not counting anything out. We're still waiting on the biopsy results for the other infections he was looking for (can't remember the names, was too sedated when talking with him). I've only been on the prednisone for two days now...they don't have it here in the hospital so I'm getting some other steroid via IV. As of now he's completely stopped me on the 6MP
Posted 4/8/2010 5:31 PM (GMT 0)
Good that he stopped the 6MP. When I was admitted to the hospital in May of 08 my pancreatic enzyme levels were off the wall and I was only on 50 mgm of 6MP then! He took me off it but started it back up a few months later with close monitoring of liver, pancreatic enzyme levels and CBC's. Always had monthly CBC's while on 6MP anyway. It usually kept my white count at 3.5, which was fine acting as an immunosuppressant, but when he increased the 6MP to 100 mgm last summer....OMG....terrible reaction. White count dropped to 1.6, flu like symptoms, and didn't do squat for my UP. Anyway, my doctor doesn't like his patients being on 6MP when he starts the Remicade. But, I have a super cautious GI doctor.
By the way, why the blood thinner? Is it because you are immobile? Doctors wanted to give me Heparin while I was in the hospital and I said "no way"...give me a pair of roller skates, I'll grab my IV bottles and MOVE...but no blood thinners.
Posted 4/8/2010 6:05 PM (GMT 0)
yeah the blood thinners are because I'm in bed most of the time...I get up and move around on occasion but not much today as I still feel out of it. They gave me an injection in my stomach for the thinner, first time I've had it like that. He's checking for these other infections before he decides to start the remicade. He's going to come and talk to me about it later. I had a small BM a bit ago to get rid of some of the air they pumped into me and I had nothing but pure blood coming out with some mucous, blah
Posted 4/8/2010 9:02 PM (GMT 0)
Yeah, the after c-scope biopsies bloody mucus for a few days sucks....hope you get answers soon.

q
Posted 4/8/2010 9:46 PM (GMT 0)
spoke to my GI for a while...so far two tests have come back negative for CDiff and he's doing one more. The Salmonella test also came back negative as well. He is just doing one further test the the CMV Virus and if that is all clear he wants me to start Remicade. I am still so nervous as hell about starting it and he explained how effective it was and the remission rates and the cancer risk is 1 in 3000 roughly. He prescribed me an anxiety medicine if it gets close to taking it to calm me down. I've read many successes on here with Remicade and was wondering if any of you had the anxiety I'm feeling about the cancer risk? He explained to me that both his wife and daughter are on it for similar conditions and have been for years. I've never felt this nervous about a drug at all before like this. I also told him I want to be off the 6MP as he mentioned he was going to keep me on it and taper it off as the remicade infusions continued. I told him I would be happy with prednisone to cover until the remicade does take effect. This is the last step he said...after this there is no other drugs and would have to consider surgery. 60% of my colon is perfectly normal, it's just that 6 inch stretch that looked like "hamburger". The hemotologist came in and confirmed that I'm very low on iron due to the inflamation and they are pumping me full of it...they are giving me steroids still, sodium chloride, alternating between the flagyl and the vicamayocin (which gets squirted in my mouth). It will be either Friday or Saturday for my Remicade...god my nerves...
Posted 4/8/2010 10:44 PM (GMT 0)
Did I read correctly that your GI doc's wife and daughter both take Remicade?  Did I understaned correctly?  Also I am sure your going to feel better today and even better tomorrow.

MyUC

Posted 4/8/2010 11:24 PM (GMT 0)
No one was more nervous than I to start Remicade. I worked in a hospital lab years ago and back in 67, before going to Europe, I tested positive on the PPD test. I had a chest xray and it was normal. The doctor back then explained that I was probably exposed to the TB virus...well, duh..working in a lab, no doubt plus the fact that I had an aunt through marriage who died of TB and I was around her at times.
They gave me the PPD test back in 08 and it was negative! However, I also was on prednisone which can give a false negative. My doctor pushed me for two years to go on Remicade but his associate said NO...go figure. Also, I was confused because I do have a super cautious doctor. He said the list of bad side effects from prednisone far outweigh those of Remicade.
Long story short.....got tired of flaring much too often, bit the bullet, took another PPD test...negative again...started the Remicade in Nov...it failed after 3rd infusion. Back on prednisone, started Humira two weeks ago...feeling better.
Hang in there buddy...we are all pulling for you!!!!....Oh and I was reading the list of side effects from the Humira and it would drive ya nuts...cancer risk too, but then if you read any pamphlet from any medicine...they gotta cover their butts. Don't worry...cancer risk is small.
Posted 4/9/2010 12:27 AM (GMT 0)
you read correct MyUC, his wife and daughter have conditions that require remicade...I can't exactly remember what it was but they were on it for a few years then went on to some other type of biologic. It wasn't a digestive disorder. My doc told me today there is a cancer risk with the 6MP I've been on for quite some time and had no clue that there was. I'm finally starting to get some energy back in my body...I'm just praying to get that dam low residue diet started for I am HUNGRY. This liquid stuff is for the birds! Must stop watching food network on the TV
Posted 4/9/2010 1:34 AM (GMT 0)
thanks for the vote of confidence Christine on the Remicade :)
Posted 4/9/2010 11:09 AM (GMT 0)
I got to say that Ambien CR knocked me out! Got a decent nights sleep but the nurses kept coming in to help the patient next to me most of the night and turning the lights on so I was up off and on most of the night...not to mention the vitals at 3am then blood taken at 5am. Looks like I'm starting to pass a bit of mucous again, no blood that I can see...my doc wants another stool sample but he better feed me something if that's the case for he isn't going to get one with all the dam jello he's making me eat!
Posted 4/9/2010 11:25 AM (GMT 0)
I'm surprised they didn't put a PIC line in you. I had to have one back in 08. They fed me through it, drew blood, got my meds too. They took it out the morning I went home. Good thing because I was scared to go home with it...too much of a risk of infection.
Ugh...you have a roommate??? I swear if I EVER have to go in the hospital again, I am asking for a private room. Last hospitalization..had four roommates. The first two were fine, but the last two belonged in a loony bin. My blood pressure was 210/110 on three blood pressure meds. They just couldn't bring it down. I said "sure, you try sleeping in a room where the woman sleeps all freakin day and yells all night". I finally called administration and told them they better do something about it or they will be carrying me out in a pine box and my family will sue the place...lol. Not like me at all but you know what prednisone will do. That very day, I got a nice private room and my blood pressure returned to normal within 24 hrs.
When you going home?
Posted 4/9/2010 11:36 AM (GMT 0)
I would love to go home tomorrow, that is when I see my GI next. He's sending over one of his other doctors today to see me as mine is working in another hospital across the city. I'm sure he'll be keeping me here till Sunday. Yeah, the room sharing isn't the best but at least my roommate is post op from a big surgery so I have no bathroom conflicts! The day I was cleaning myself out I would of hated it if I was fighting for bathroom time. Think I'm going to take an actual hot shower today, god that will feel good. Only real symptoms I'm feeling is ALOT of bowel noises and ALOT of gas. I'm just glad to see the blood gone for now, maybe it's the steroids holding it back because I'm on no other meds but that and antibiotics
Posted 4/9/2010 11:51 AM (GMT 0)
Yeah, that was the worse with the PIC line...no shower. I had to put my basin in the sink and wash myself all over like that..ugh. Hope you are getting proper nutrition though.
Oh, they had to put a port a pot right next to my bed when I was in the hospital. Even though I had the bed right next to the bathroom, I couldn't make it even that far! Bled like a stuffed pig too...scary. I had the nicest male nurse too...big burly guy. I think I scared the BeJesus out of the poor soul when I filled the pot full of blood..lol. He ran around ordering stat CBC's half the night. Ironically, my hemoglobin was 14!!! Must have had a lot of excess blood cells.
Only on prednisone and antibiotic? What antibiotic? Cipro..Flagyl?
Posted 4/9/2010 1:04 PM (GMT 0)
it's funny that the doctor that came to see me is the one that treated my sister 17 years ago for her UC. He said my blood count was 8 this morning, less than it was yesterday. Yup I'm currently only on a steroid and antibiotics. It's not prednisone for they don't have it here, it's some other brand. The antibiotics are flagyl then a few hours later its vancomycin via mouth. He started me on the Flagyl and V just in case there was any C diff infection. They also stopped my fluids, yay, that was making me pee every half hour like I was holding it all night lol. I have also now been cleared for the low residue diet thank god! FOOD! At least for a bit I can roam freely for I'm disconnected from my IV until my Flagyl arrives. What dosage of Remicade did they give you christine?
Posted 4/9/2010 6:16 PM (GMT 0)
all I have to say is....PAIN TURKEY SANDWICHES ROCK!
Posted 4/9/2010 7:07 PM (GMT 0)
They only gave me half the max dosage of the Remicade. Don't ask me why he didn't give me the full dose. Extra cautious I suppose...maybe the thought of that positive PPD over 40 yrs ago and his associate not agreeing to give me Remicade made him a bit overly cautious. He also sent me in for a chest xray after my 2nd infusion of Remicade. That turned out to be negative. Two days after my 3rd infusion I suffered some kind of virus/and or/reaction to Remi. I had diarrhea, felt like vomiting but didn't, 101 fever and body aches. This happened New Year's weekend and one of his associates was on duty. The doctor wanted me to take an antibiotic but I was afraid it would set off a flare and asked if I could wait another day. He phoned me the next day and I was fine!!! So I chalked it up to a 24 hr bug. However....it set my UC off in a big way. Had my 4th infusion one week earlier than scheduled...no change. Had to go back on the prednisone a few months ago...tapered down to 10 mgm..flared big time again and had to go up to 40 mgm of pred. Had a stat CT scan of pelvic area...no mass, thank God and a flex sig which showed moderate inflammation of rectum. Soooo...started Humira on March 24th. Improving but don't want to jinx myself.
I am running on pure prednisone super power the past few days...very little sleep..about 3 hrs last night. Insurance company won't ok the sleeping pills..ugh. I have some but only take 5 mgm....what dose of Ambien are you on?
Posted 4/9/2010 8:50 PM (GMT 0)
I'm not sure the dose...they just brought in two little peach colored oval pills that were individually wrapped. I didn't even think to ask my doc if there were different doses of it
Posted 4/10/2010 12:50 AM (GMT 0)
well tomorrow is going to be a nervous day for me...the nurse is about to bring me my Ambien. I'm hoping my blood count goes up compared to today or it may be transfusion time. Tomorrow will also be my first remicade treatment so I'll have the anxiety pills standing by. I'm just going to keep my fingers crossed and hope something this year finally goes my way.
Posted 4/10/2010 1:33 AM (GMT 0)
I think I speak for a lot of people here on this forum when I say there's a lot of people wishing you the best.  Try not to worry.  You either trust you doc or you don't.  I believe you do so go with it full force.  I say to myself all the time, I do the best I can and one cannot be too hard on oneself.

Try to get some sleep.  We're with you.

MyUC

✚ New Topic ✚ Reply
1234