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How many of you and how often do you end up in the hospital?

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Ulcerative Colitis
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Posted 1/28/2016 8:42 PM (GMT 0)
I've had 3 UC flares in the past all that start with certain medications and end up with 40mg prednisone, no help, up to 60mg no help, and is say about 2 weeks on 60mgs with no help is when I will go into the hospital to get IV steroids and there I will usually see results in about 3-5 days. I'm currently experiencing my 4th flare and have just started 40mg steroids. I'm dreading the same situation happening again. Just wondering how many of you usually need to end up in the hospital to be put into remission or not and if not how long until the steroids work for you or how long do you hold out until you go into the hospital? I'm also on Remicade now for 2 years this will be my first flare on remicade although honestly I don't think it's doing anything for me.
Posted 1/28/2016 9:33 PM (GMT 0)
I've never been hospitalized due to my UC.
Posted 1/28/2016 9:36 PM (GMT 0)
I've never been hospitalized due to uc.
Posted 1/28/2016 10:37 PM (GMT 0)
Never hospitalised or even went to the ER.

q
Posted 1/29/2016 12:21 AM (GMT 0)
In general patients in the US are not hospitalized as often as patients in europe etc

I am not so familiar with the time frame for oral steroids but I would guess that you should start seeing improvements right away
As for IV steroids, if you dont see drastic improvement within 3 days, get off of them as they are not helping enough
any steroid usage under two weeks does not really need a taper

get tested for pathogens, specifically C. diff and CMV as those mimic flareups

get your remicade levels checked to see if you have enough in your serum as well as if you have developed antibodies to the drug

because remicade is a protein based drug, if your albumin is very low (relatively common in flares) than you would essentially be dumping the remicade out in your stools and flushing it away
you might need to get an extra dosage so that the levels dont get too low, when they get too low it becomes more episodic treatments and its easier to develop antibodies

what is your dosage of remicade? what other meds are you on?
Posted 1/29/2016 12:35 AM (GMT 0)
I have been hospitalized, once. My experience says otherwise than Dikid stated. It took me over a week to respond to IV steroids, but when they finally kicked in they worked. Not everyone responds immediately to prednisone. Some respond quick, some take longer, some not at all.

When I went into the hospital though I was very, very sick. Down 25+ pounds, 20+ bowel movements per day, severely dehydrated and anemic, etc. I don't go every time I flare.

I think if you are using the hospital as a way to get your flare under control every time you flare, you need another to consider another plan.
Posted 1/29/2016 12:39 AM (GMT 0)
I ended up in the hospital twice over the course of some months, my first big flare-up, some 30+ years ago and never again since. Why? Medications, though they are still not perfect by any means, are better, there are more options, and I recognize the signs of inflammation sooner, so am able to be pro-active.
Posted 1/29/2016 1:03 AM (GMT 0)

Dikid said...
In general patients in the US are not hospitalized as often as patients in europe etc

To me it seems to be the other way round.

I went 11 years without being hospitalised or going to A&E once, despite probably being ill enough a few times to. People here are not routinely hospitalised for IBD.

Anyway, to answer the topic question, in 2011 I became ill about a month after starting Remicade. It took the form of increasingly high fevers - the highest one spiked up to 105F. As you can imagine, I was very very ill that night and scared. The next day I went into A&E and was admitted. Was sent home 5 days later with antibiotics, relapsed again immediately, was re-admitted for a further 9 days a few days later.

After that episode, which greatly weakened me, I was hospitalised every few months and given IV steroids. My flare-ups had become fulminant colitis and if steroids hadn't worked, I'd have been looking at emergency surgery.
Posted 1/29/2016 3:43 AM (GMT 0)
I just went to the er in begining of September because hadn't been to a dr for uc in about 5 years and couldn't get an appointment until the end of September. I was about 30 bms a day, urgency, accidents, dehydrated, anemic, down to 92 lbs and I knew I couldn't wait any longer, I begged the Dr office for an appointment and they just said the end of September or go to the er. Well my CT scan showed pancolitis and when the Dr saw my stool sample he asked what it was it was all liquid but dark black. I ended up being admitted and not have a dr that knew much pumped me so full of fluids that I weighed 112 in 3 days from the 92 I was admitted all fluid because I still could not eat anything but stil having about 15 bms a day. My potassium which is usually low that I have to take 3 potassium pills a day every day to being to high. The Dr told me infant of my daughter that I now have a 100% chance of colon cancer. He was going to keep me another day but when I asked about fluid intake I had no ankles or wrist I was so bloated and about my potassium being so high he came into my room after lunch was delivered but I still couldn't eat but I was drinking some ginger ale hoping I could hold that in he just said oh good you're eating you can go home today even though I was borderline transfusion for amenia, but I had the meds I needed prescribed so I left knowing I can take care of myself. 3 days later I was at 102 but able to walk because with all the fluid I could barely walk. The gi dr I went to isn't much better he put down mild ulcerative procolitis even though the colonoscopy he did he put

MILD ULCERATIVE COLITIS LEFT INVOLVED MORE THAN RIGHT COLON.
The perianal and digital rectal examinations were normal.
Inflammation characterized by erythema, friability, granularity,
scarring, aphthous ulcerations, serpentine ulcerations and shallow
ulcerations was found as medium-sized patches surrounded by normal
mucosa in the rectum, as medium-sized patches surrounded by normal
mucosa in the recto-sigmoid colon, as medium-sized patches surrounded by
normal mucosa in the sigmoid colon and as medium-sized patches
surrounded by normal mucosa in the descending colon. This was mild in
severity. Biopsies were taken with a cold forceps for histology. FROM RT
COLON AND LT COLON.,

Impression: - Inflammation was found in the rectum, in the
recto-sigmoid colon, in the sigmoid colon and in the
descending colon secondary to ulcerative colitis.
Biopsied.
Recommendation: - Use Asacol 800 mg PO TID.
- Use budesonide 9 mg PO one time per day.
- Follow up with me in 2 months.
So I really don't know another dr looked at the report and couldn't believe he put mild, and does that sound like ulcerative procolitis to you?

Sorry about the ramble I guess I'm upset that flare was my worst and I had been told I needed to be be hospitalized before but if I followed his orders exactly he would let me stay home. I used to just show up at his office and he would get me right in because he knew I didn't go unless I was bad I was able to handle it on my own for the most part but now with the urgency so bad I know I can't but I don't have a good dr anymore the other one moved away hence my 5 year stay away.
Posted 1/29/2016 5:05 AM (GMT 0)
Coral: I am not sure if I understand what is going on, but where do you live?
you need to be aggressive with your treatment, it is not healthy to be so inflamed and not in control?
maybe start a new thread so that we dont hijack the current one
and people will be able to give you better advice?
what formulation of budesonide are you on? if you are on the entecort it might be better to switch to mmx/uceris as it is released in the colon.
entecort is released mostly in the small bowel and right colon
Posted 1/29/2016 5:06 AM (GMT 0)
3 years UC. 18 months without full remission. Never hospitalized. Lost 30 pounds once and was concerned, but stabilized before I got close to needing hospitalization.
Posted 1/29/2016 5:33 AM (GMT 0)

Dikid said...
Coral: I am not sure if I understand what is going on, but where do you live?
you need to be aggressive with your treatment, it is not healthy to be so inflamed and not in control?
maybe start a new thread so that we dont hijack the current one
and people will be able to give you better advice?
what formulation of budesonide are you on? if you are on the entecort it might be better to switch to mmx/uceris as it is released in the colon.
entecort is released mostly in the small bowel and right colon

Hi Dikid, I started a new post titled what are your thoughts. I live in a small town in upstate ny. I'm not on budesonide anymore. I'm much better now but I still have urgency and about 10 bms a day, like I said that was in September I just don't understand it being mild and ulcerative procolitis by my symptoms and the drs own report.
Posted 1/29/2016 1:19 PM (GMT 0)
I was hospitalized 6 times over the past 3 years for UC
And 3 months ago for severe pain that turned out to be from Diverticulitis! Now I have to deal with 2 problems! turn
Posted 1/29/2016 1:56 PM (GMT 0)
I've been hospitalized 3-4 times for UC and 2 others for pancreatitis and c-diff. I used to suffer at home with pain and nausea for weeks until oral prednisone became effective but these days, I only tolerate that nonsense for a few days. I get extremely nauseated when I'm flaring so I need IV fluids.
Posted 1/29/2016 3:20 PM (GMT 0)
never hospitalized. I did have to go for iron infusions, and once for hydration when I lost too much fluids. But I went home hours later.
Posted 1/29/2016 5:07 PM (GMT 0)
I've been hospitalized 2 times for UC flares, I had a 3 step surgery so 3 hospitalizations for the surgeries and then 1 hospitalization for a complication from the surgery. 6 hospitalizations in total for a grand total of 100 days.

Let me just recommend having an Aflac type plan where they pay you if you end up hospitalized. It helps with your regular bills while you're out of work.

Another member (blksteeda) also had a similar plan. For me the insurance plan made it more financially manageable. It paid me $300 a day while I was in the hospital.
Posted 1/29/2016 7:01 PM (GMT 0)
at the beginning of my first major flare I could not get in touch with my pediatrician even though I was calling all week finally a few minutes before closing on friday, her NP called and told me to run to the ER
I spent a few hours there and than was sent home with a referral for a GI
the next week I went to GI scoped me and diagnosed me with UC, he sent me to ER for IV steroids was discharged, the next day he told me to go back to ER and I was admitted, I was in that hospital for 6 days and was transferred to a better hospital where I was there for a week, was discharged and then three days later ended back in the hospital where I was for another 5 days
that was in april-may and I have not been hospitalized since
hope to stay out of the hospital as it was a really bad experience for me
Posted 2/25/2016 7:36 AM (GMT 0)
Have been hospitalized hmmmm....about 5 times I think. I don't know how anybody could have UC and never be hospitalized, it is painful! Mine was so bad that my first flare I actually thought I was dying. I was in so much pain that I was blacking out and throwing up because of it.
Before I was diagnosed, I was like that for almost a week. Went to emerg 4 times and was turned away being told that I just had a "gastro flu" even after they found that I had internal bleeding. I finally drove to my family doctor who knew me very well and he took one look at me, called the hospital and lost his mind on them, and 10 mins later I had a bed and a GI doctor waiting there for me to do a scope.

Any time I have been hospitalized, it is because I have ended up in ER due to extreme pain where I would be blacking out/getting sick/delerious and didn't know what else to do, the only thing that helped was dilaudid. Then they would admit me after realizing how bad my flare was.
The hospital is a nightmare though, all they do is drug you up and starve you. If it wasn't for the level of pain I would just ride it out at home instead of heading to ER.

I find oral pred doesn't work at all for me. I feel much better once I get IV steroids at the hospital. Sometimes its the only thing that seems to work. One of my flares where I ended up hospitalized for a week was when I was on Remicade. I would rather get the IV steroids anyway, oral prednisone has awful side effects, especially the higher dose and longer time you are on it.

Post Edited (JKM87) : 2/25/2016 12:40:00 AM (GMT-7)

Posted 2/26/2016 6:44 PM (GMT 0)
In the last five years I have been in hospital numerous times. Several for IV steroids and fluids. Once for 16 weeks with sepsis and toxic mega colon, the colon was saved by ciprosporan IV and nasal feeding.
I think because I take anti coagulants for DVT and V Leiden I lose more blood and fluids on a flare.
I had hip replacement last November and immediately began to flare, tried pred foam and suppositories to no avail, awaiting a script for new steroid that only starts working in the colon can't remember the name but starts with BU.....
I am still flaring but trying to avoid steroids because I am waiting to have the other hip replaced in April, I don't want any other joints damaged by pred and I'm only just 48.
Posted 2/28/2016 1:12 AM (GMT 0)
Hospitalized once 4 years ago. I weighted about 90 pounds. I was going to the bathroom non-stop. Tons of blood. I got a picc line, TPN, home nursing. It was no fun. But I was really, really sick. I was on humira when admitted.
Posted 2/28/2016 4:01 AM (GMT 0)
I think I've been hospitalized about 10 times for UC crap. It's hard to keep track to be honest. Every single time they wanted me to get surgery but I always refused. I'm in the U.S. I swear, I can't even go to the ER without getting admitted so I have to be dying to go because I hate being in the hospital! It's always necessary for me to be in there and they get me stabilized enough on whatever cocktail of medications they wanna try.
Posted 2/28/2016 2:50 PM (GMT 0)
Every couple of years I end up in the hospital. Once it was 40 day stay, not fun.
Posted 2/28/2016 6:33 PM (GMT 0)
So far, only once, and it lead to my diagnosis, so in that sense, it was a "good thing".
I was admitted for what I thought was food poisoning. After 4 days, extensive tests and antibiotics, I was released and followed-up with a GI doctor who performed my first colonoscopy and dx'ed me with UC and IBD.
I am going for my 2nd colonoscopy next week - have been on Apriso since last March, so seeing if it has helped at all. I have had about 2 minor flares in this time, once (I think) due to a strong antibiotic (Z-Pack), but thankfully no more hospitalizations since last December.
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