hospitalization rates

Just wondering how many of us here have been hospitalized for our UC or CD? And if you were hospitalized did you respond to IV steroids or did you need rescue therapy from inflix or cycosprine or did you fail everything and need surgery?

I read that the mort rate for IBD hospitalization in the 1940s was 1 in 3.

I was hospitalized when I first got sick, I think it was about 24 days. I didn't respond to steroids so they gave me Cyclosporine.

My GI says that many hospitalizations happen when we first get diagnosed and then after we have maintenance meds in our bodies we tend to not flare as bad. It's just a generalization.

I went off of my meds one time and ended up back in the hospital on Cyclosporine for 21 days. I did not like taking 6MP so I stopped. That was a mistake.

My last flare I ended up in the hospital and not responding to biologicals so I had surgery. It was 4 separate hospitalizations because I had a 3-part surgery and one admission for a blockage.

I'm somewhere above 100 days in the hospital for my IBD. This isn't very common anymore among IBD patients. We have great medications now.

I've never been hospitalized for my UC.

It's a good question, what does the medical literature say?

(Published 2004). "There were an estimated 359,124 and 214,498 admissions for CD and UC, respectively. The overall hospitalization rate for CD was 18.0 per 100,000 and that for UC was 10.8 per 100,000."

Source;. https://academic.oup.com/ibdjournal/article/13/12/1529/4652999

(Published 2007) "From 1990 to 2003, the hospitalization rates for patients with a primary diagnosis of IBD per 100,000 people ranged from 9.3 to 17.1 for CD and 8.2 to 12.4 for UC"

Source:.
https://www.sciencedirect.com/science/article/abs/pii/s1542356507001061

So, the odds of you or I needing hospitalization for our UC is pretty minimal. There's an obvious bias to severe pancolitis cases over those who are mild Proctitis though. Severity and extent of UC has a big impact on who's most likely to need a hospitalization. And our gasteroenterologists know this and keep a closer watch on their patients who are likely to need it, with labs etc.

Regard mortality rates, yours/mine isn't statistically significantly increased from our peers. IBD won't kill you with modern medicine, surgery, and treatment recommendations from our doctor's. You won't see IBD on a death certificate. It's possible to die of complications related to having an IBD, like a sepsis from immunosuppression (blood traveling infection) as an example. Incredibly rare but it's happened to a few

Let's see.... I'm that person that causes all our numbers to go up. I was hospitalized for sepsis for 3 weeks, then for a fistula for 2 weeks, then back for sepsis for 2 weeks..... And that was when I was first diagnosed.

Since then I have had 3 surgeries with a stay rate of about 8 to 10 days each surgery, (I coded twice during those), 5 obstructions with stays of 7 days each, (1 had a dilation in there) and two more times for sepsis again with IV antibiotics.

I think that's it. There are the other times I went to the ER and told them to send me home with steroids... Lol.... I just refused to stay. Thats about 5 more times. Then there was that pyoderma gangrenosum bout where they wanted me to go in but I stayed at home....

Gosh, I just realized how bad it's been... I've been listing only the things I considered major. Yikes!!! But I am grateful. 20 years ago I might not have made it. They started me on Remicade in the first year. I had such fast healing the scar tissue caused my obstructions...and my fistulas caused the sepsis issues.

And now.... Now I have been struggling with recurring antibiotic resistant UTIs, refusing to go to the hospital until I absolutely have to. No fever.. not going.

Appreciate every moment you can.

Clo

Been 4 weeks in the hospital with my first flare (severe Pancolitis), 4 weeks later I got back in the ER because of C diff for 2 weeks. Been an horrible introduction to UC for me lol.

I have never been hospitalized for my UC. I was close to going in 2018 but 40 mg of pred started to work after 6 weeks at a lower dose (including a taper). I added Imuran in 2019 when I couldn’t come off of pred successfully.

This paper from 2021 says it is estimated that 18-25% of UC patients will require hospitalization at least once.

https://academic.oup.com/crohnscolitis360/article/3/3/otab029/6295642

Indeed, the most refractory cases tend to turn up on healingwell which paints a biased picture

When I was first diagnosed and joined HW in 2007 I rem googling to see what surgery rates were for UC and they were then quoted at 25-40%. It is amazing that some google searches today still report these exact rates which clearly are a statistic of the pre biologic era. I'm not sure what the new agreed estimate of this is but it is definitely not in that range anymore and is a good example of how Dr Google can be misleading.

Hospitialzation and surgery rates will always remain highest in the pancolitis sub population and stresses more why it is important to stay on top of your diseases and not leave it spread. There is also a difference between disease activity and prognosis. You can have inactive disease but still retain a poor prognosis if you meet those conditions....i.e. under 40 at diagnosis, required more than 2 courses of steroids, deep ulcers on first colonscopy, pancolitis on diagnosis. Ignoring of course those who enter hospital and surgery due to malignacy issues. With that said I rem a poster here from years ago (Suebear???) who had surgery because 10 years of inflammation the size of a dime in here rectum wreaked havoc on her. She always maintained that surgery gave her her life back.

I try to remember to put in a disclaimer. I am that odd little bird that raises our numbers. My GI and Colorectal doctor's at Dallas Baylor (they are both directors over their departments) have informed me I'm one of the most severe cases they have ever seen. So we are all on a learning curve--but so far, knock on wood- they have been willing to think out of the box and keep me alive. But .. my numbers do not reflect the norm at all.

Today....They have both informed me that the rate of hospitalizations for UC and Crohn's has dropped tremendously with the new treatments and because people are deligent regarding their health care and medications. I forgot the percentages.

And in my support groups.... UC/Crohn's... fewer people speak about being admitted. They complain about having to go to the bathroom 4 times a day.... They are out there still Rock climbing, biking, skiing... Living their lives... They have mild disease...But those 4 times a day are enough to cause concern and "looking for the closest bathroom" syndrome.

Clo

Post Edited (clo2014) : 8/2/2022 5:10:39 PM (GMT-7)

I know. I sorta chuckle when we are talking. 4 times. I told them that 4 times is a fantasy for people with more severe disease. It's called remission for some. They understand that, but they are really curious about other people, their symptoms and how to control their disease. I think support groups and being able to somewhat discuss these diseases helps others do the right thing and keep their disease in check. By taking those steps they might be able to avoid hospitalizations.

There are more people in my support group that have mild disease than severe disease now. I'm glad to see that.

Clo

Hospitalised from complications of UC swelling joints/pancreatitis and PE but that was the first time since my diagnosis in 2006. It was also my worst flare.. probably my only real flare

Hospitalized in October of 2020 after 10 years with UC. Thought I was headed for colectomy, but I was put on Remicade and have been in remission since about March of 2021. I still have blips and occasional loose stools. But mostly I go once to three times a day. Fingers crossed that Remicade works for me for a long time.

I was hospitalized when first diagnosed. Mainly because it was going to take weeks to months to get a GI appt for my bloody diarrhea! Welcome to US specialty healthcare! Treated for pancreatitis for 9 days by the first hospital because my enzyme numbers were 3x normal but I knew I was misdiagnosed because I had no pain The problem was my massive diarrhea with bleeding but they did nothing for that. So I checked myself out and into a different hospital where they finally addressed that and I had progressed to severe pancolitis by that point and spent another 9 days in semi-ICU with heart monitors 24/7 as my heart rate wasn’t dropping below 100. Fun times.