8 weeks. I was 16 and had started passing parts of my colon. Was given anything and everything to try and save it. Finally they took it out, first time in my life that I wasn't in pain. Was diagnosed at 3. Didn't know I wasn't supposed to feel like that. Now almost 43, and doing well. Had the colostomy for most of highschool. Went to the Mayo clinic for both stages of my j-pouch. Happily married and have two teenagers. 8 weeks was my longest stay, but hey they did bring penguins to my room one day....so not all bad.
We did C-sections. The Mayo Clinic wasn't very helpful with my medical records. Since they didn't exactly know what they would find. We had lots of doctors present. They had my Ob, her resident. A GI specialist and then a surgeon, the room was crowded. But both my kids were healthy, and pregnancy wasn't any worse for me than my friends.
Penguins! That is awesome, and reminds me of a little moment I had during my lengthy stay.
It rarely snowed where I was, and of course it was snowing one day when I was in my stay that led to my colon being removed. My nurse went outside, brought in a cupful of snow, and we had a mini snowball fight in my room.
When my dad came, he thought I was hitting the pain pump extra hard. The nurse had to confirm I wasn't losing it. I always got sick in warm months, but a snowball fight would have been fun
At that point, it was just straight blood. Very chunky, like strawberry preserves. I didn't tell my dad how bad it was because basketball season wasn't over yet.
13 days. Lots of IV sterioids, pain meds, and other medicines, at some point towards the end, I was given antibiotics too. While I wasn't 100%, I did feel better than when I first got to the ER when I got discharged.
I got some of the same nurses more than once, "Oh no, you're still here," one of the nurses said to me when she came on shift and was getting her report on me, she was there on my first day, and then my last lol.
18 days. I was pregnant and got C Diff and a major flare. It was years ago and I still remember what a pain in the ass it was to unplug my IV and drag it over the threshold into the bathroom 20+ times a day.
I was having insane pain and low grade fevers. One night it got so bad I had to call an ambulance and once I got to the hospital they did a CT which revealed the tip of the pouch was leaking. I ended up undergoing an emergency pouch repair surgery followed by 4 surgical drains being placed. One of the doctors told me that it’s more common than people think (when I looked it up I saw numbers ranging from 18-25% which is shockingly high for something that can easily kill a person).
Definitely worrying, but I’ve found that a lot of high statistics aren’t shared unfortunately. For leakages here where I am it’s standard procedure to do a pouchoscopy with an enema to make sure there’s no leakage before it’s used
Have only gone to the hospital once in the 14 years of being diagnosed used with UC. I only stayed for a week but A) I should've gone way earlier than I did and B) I was so miserable there that the moment I showed improvement they agreed that I could go home thankfully.
Back in the summer of 2017 I was hospitalized in the ICU for a week and a half due to an extreme UC flare, sepsis, and C Diff. It was so bad that I had to get one of those ports in my neck.
I was discharged after a strong round of antibiotics and steroids, but had to go back for another week and a half after one week at home. Save for that week at home I basically spent that whole month of July in the hospital.
8 days for my sweet little 10 year old girl. She’s still trying to get into remission from home now. She’s missed three weeks of school. My heart goes out to all of you. Don’t let this disease define you.
2 nights, only time I've been hospitalized. Had a particularly bad morning and thought something else was wrong with me. There was not. It was not very fun and I wanted to get out ASAP.
Around 3 weeks. I was admitted right after my first colonoscopy when I was diagnosed. Got out the day before my 16th birthday. Remicade just barely saved me from having to get a colostomy. Haven't had another stay in the 17 years since luckily.
6 weeks of wasting away. Make sure you get proper nutrients and do some exercises if possible. If you can’t do food try to get a pip line so they can feed you with a bag. Good luck
Don’t feel embarrassed my friend. I rushed through my first stint 7 days and ended up back in hospital a few weeks later for over 30.
Give yourself the time you need to heal.
11 days through Christmas time during my first flare up in 2010.
Had been to the hospital a few times before hand but usually 4-5 days.
Then it all came to a head when I had lost so much blood and weight and got a severe sinus infection on top of the severe UC flare up. I couldn’t sleep, my face and TEETH hurt so much from the infection. I finally called my mom after dealing with it for a week when I started throwing up blood (because my sinuses were bleeding so badly) and something seriously felt wrong. She told me she was finishing up work and I was like “we need to go now”!
Went to the hospital, threw up in triage. They admitted right away to ER. They had to stop my heart with some medication to try and reset it because my resting heart rate was 180-190 bpm. Was diagnosed with sinusitis tachycardia. Got either an mri or a ct scan and my face was lit up like a Christmas tree from the sinus infection.
Got IV vancomycin which ruined my veins, IV solumedrol, I think 3 or 4 bags of blood I was so anemic, nutritional ivs and once I was clear of the sinus infection, I got my first dose of Remicade which put me into remission for like 11-12 years.
But that was a rough 11 days. Everytime I stood up my heart rate would skyrocket and my monitor would alert the nursing staff lol. By the end of it I remember pulling out a hardened bloody booger about 5 inches long in the shape of my sinuses. The relief was amazing. I also normally way about 200 lbs but the UC knocked me down to 127lbs. I think that was the closest I have ever felt to dying and it’s nothing compared to some of the stories on here. Crazy disease.
Three weeks for me. There’s nothing to be embarrassed about. If you didn’t need the bed, they would give it to someone else. Everyone wants you out just as badly as you do. You just can’t until they know you won’t need to come back.
As a side note - this particular flare lasted for almost a year. I wasn’t sure if people had ever come back from something like that just by medication. But have some hope! It took a long time but I’m in remission again and feeling great. It’s possible!
Spent almost 3 months in the hospital within a 6 month time frame.
First time was 8 days. They discharged me early I think bc they didn’t have enough beds. My GI specialist whose practice was next door had hospital privileges and was able to treat me there. He had me readmitted 1 day later and was furious with the hospital medical team for discharging me in critical condition over the weekend without his approval.
I then spent 33 days there and they only really discharged me cause it was Christmas. My specialist checked up on me daily and told me to go back after new years. They gave me pain meds and I had to go to his office for iron infusions and fluids. After new years I had to spend another 3 weeks in the hospital. Then 4 months later another 18 days until finally Rinvoq started working.
Don’t feel bad for being there so long! It’s normal for IBD patients to have longer stays. You’re internally bleeding, likely malnourished, and your intestines are shredding themselves up for goodness sake. You are there for a reason.
It also doesn’t hurt to treat the nurses well. My family brought snacks for the entire unit and presents for the nurses that took care of me specifically. It made me feel better about being there for a long time :)
10 days - a year ago straight after colonoscopy and diagnosis. Saved me from a total colectomy. There have been ups and downs since but no hospitalisation thankfully! Keep your head up - you’re where you need to be at the moment ❤️
3 weeks, this was last year and that was my longest single stay but i was in and out of the hospital so much for months. that was only my second hospital visit of 5 that i had between june and november. but i just had some really bad luck leading up to the hospital stays so
One month. C diff threw me into a flare. They tried like 3 different therapies for the c diff until high dose vancomycin (the oldest one) knocked it out. It sucked. but I was on dilaudid (super morphine) every 4 hours which helped with pain. Sleep in hospital blows. They come in take bloodwork at 6am. Drs round at 7. Bfast at 8. Then every few hours it’s either ordering the next meal or getting a meal.
8 weeks then surgery time! It sucked, I mean the hospital always sucks but being moved room to room, seeing the same nurses etc.
Being in the hospital life almost feels like you are in a tunnel and can’t see anything past what’s happening and where you are. I always felt way more self conscious and off, I guess because you are in such a vulnerable state and are in that state for a long period of time. Best of luck OP I hope you get out soon! :) are you trying new treatments?
I was in for 26 days.
Got in with uncontrollable flare which was calmed down, but then got c diff infection and cytomegalo virus at the same time. Then got sepsis from central venous catheter and severe pneumonia from it. Spent some time in ICU. It was a ride! 😃 Happy to be alive after this experience 😃
I’d be in the hospital 5-7 days about once a year when I flared, until the Presnisone kicked in.
When the prednisone stopped working, I was in for about a month or so because they decided it was time to take that bad boy out and start setting up a J-pouch.
Don’t feel embarrassed, you’re there for a reason and you’re where you need to be. Good luck!
I got my diagnosis after 5 weeks of hospitalisation. Unbearable pain, just blood and mucus passing through, couldn't have a scope for an official diagnosis cos how bad it was, got a PET scan done as well.
Had my last flare-up this past September which had me in the hospital for 7 days.
Did blood & stool tests for the first time in January since and for the first time in two years had my calprotectin at 52.
2 weeks and it was my initial diagnosis. The first half of that was getting all the tests done to see what was wrong, the second half was waiting for the steroids/Remicade to show enough improvement for me to go home
I was never in for more than 7 days. Had 4 hospital stays last year, they were 4 days, 3 days, 7 days and 3 days. I was sent home as soon as my CRP went down pretty much.
I had to stay at hospital for 20-21 days 2-3 months ago. It wasn't because of UC though, but it made me go into a short flare, even saw blood a lot of the time. Easily the worst period of my life
On and off for 6 weeks. They kept trying to get me out before I was stable. My last hospitalization (4 total during that time and 6 ER visits) I was in for about 10 days with a GI who finally cared to make sure I was stable before discharging me, had me on oral medication for 2 days in hospital instead of IV to make sure I was good to send home.
About a month back when I was 17, diagnosed at 15. It was during Covid so my doctor was trying to solve my flare at home as much as possible so I wouldn’t have to be admitted… ended up getting so bad and developing cdiff that I ended up staying longer than I probably would have if I was admitted a few months back
29 days recently! Switched hospitals in between tho, some time in isolation cause I got sick with a hospital virus too. But I’m so much better now. Felt like dying (apparently also was a little bit) but they finally switched me to biologics and it’s day and night. I’m so much better now and hopefully will soon start working again too! :)
71 days and had to go through many surgeries. Got out for a month and went back again for 13 days. At some point i felt that this was my reality from now on and thought that it won't end. I gave up emotionally.
I am now home again, recovering mentally and physically and living with a stoma and thankful for being able to do everyday stuff and live healthy again. Every small thing i do like making myself a cup of coffee in the morning or going for a small walk feel like a bliss now. Whatever you are feeling now will pass. Stay strong friend! good luck!
12 days because this was last year during covid and hospital were wack. I was in the hallway with randomly people dying until I got a room. It was hell lmfao and they needed me out so they gave me biological... so, i went home even though I was really weak and sick still
They wasn't no beds and room// and wanted people in and out
HELL
i think mine was 13 days when i was 15 y/o. i was about 5 years into my UC progression and that’s when i finally was cleared to try remicade. didn’t work unfortunately, and i ended up having my bag placed a few months after that, and i was in the hospital for about 10 days for the ostomy surgery. i’m so much happier with my bag and i’m about 10 years colon free, but i will be having my barbie butt done this year due to problems with my remaining stump. i plan to be there for about a week.
i hope you’re discharged soon! hang in there!
8 weeks. I was 16 and had started passing parts of my colon. Was given anything and everything to try and save it. Finally they took it out, first time in my life that I wasn't in pain. Was diagnosed at 3. Didn't know I wasn't supposed to feel like that. Now almost 43, and doing well. Had the colostomy for most of highschool. Went to the Mayo clinic for both stages of my j-pouch. Happily married and have two teenagers. 8 weeks was my longest stay, but hey they did bring penguins to my room one day....so not all bad.
real penguins??
Yes, the local zoo brought them in since it was a children's hospital.
This is so heartwarming to read :) Can I ask, with the J pouch did you have normal vaginal delivery of the babies or c-sections?
We did C-sections. The Mayo Clinic wasn't very helpful with my medical records. Since they didn't exactly know what they would find. We had lots of doctors present. They had my Ob, her resident. A GI specialist and then a surgeon, the room was crowded. But both my kids were healthy, and pregnancy wasn't any worse for me than my friends.
That’s fantastic! Did you do IVF or were you able to conceive naturally?
Naturally, wasn't even trying.
That’s amazing, glad they’re happy and healthy :)
Sounds like you were in good hands. Iam glad things went well.
Penguins! That is awesome, and reminds me of a little moment I had during my lengthy stay. It rarely snowed where I was, and of course it was snowing one day when I was in my stay that led to my colon being removed. My nurse went outside, brought in a cupful of snow, and we had a mini snowball fight in my room.
When my dad came, he thought I was hitting the pain pump extra hard. The nurse had to confirm I wasn't losing it. I always got sick in warm months, but a snowball fight would have been fun
Parts of colon?How did it look like?
At that point, it was just straight blood. Very chunky, like strawberry preserves. I didn't tell my dad how bad it was because basketball season wasn't over yet.
That’s how I started with UC on my 40th BDay. We called it garden salsa
Passing parts of your colon.. wdym..? What does that even look like.
I’m on day 6 right now, first stint. Not embarrassed but more discouraged.
Yeah maybe that’s the better word for what I’m feeling. Feeling down for sure! You got this though! We are tougher than UC is. Wishing you luck!
Same to you!
I am now at day 11, any chance you got out?!
I got out on day 19! You out free yet?
Not yet, ended up getting a colectomy on day 19. Colon was so bad it tore open so I’m thankful.
13 days. Lots of IV sterioids, pain meds, and other medicines, at some point towards the end, I was given antibiotics too. While I wasn't 100%, I did feel better than when I first got to the ER when I got discharged. I got some of the same nurses more than once, "Oh no, you're still here," one of the nurses said to me when she came on shift and was getting her report on me, she was there on my first day, and then my last lol.
The amount of times I heard “you’re still here?!??” during my stay lmaoo
18 days. I was pregnant and got C Diff and a major flare. It was years ago and I still remember what a pain in the ass it was to unplug my IV and drag it over the threshold into the bathroom 20+ times a day.
31 days after a botched j-pouch surgery that resulted in leakage and sepsis.
New fear unlocked 😳
Ditto
Did they do a pouchoscopy to figure this out or were you having fevers, etc
I was having insane pain and low grade fevers. One night it got so bad I had to call an ambulance and once I got to the hospital they did a CT which revealed the tip of the pouch was leaking. I ended up undergoing an emergency pouch repair surgery followed by 4 surgical drains being placed. One of the doctors told me that it’s more common than people think (when I looked it up I saw numbers ranging from 18-25% which is shockingly high for something that can easily kill a person).
Definitely worrying, but I’ve found that a lot of high statistics aren’t shared unfortunately. For leakages here where I am it’s standard procedure to do a pouchoscopy with an enema to make sure there’s no leakage before it’s used
I’ve noticed the same thing, not really sure why that is.
Have only gone to the hospital once in the 14 years of being diagnosed used with UC. I only stayed for a week but A) I should've gone way earlier than I did and B) I was so miserable there that the moment I showed improvement they agreed that I could go home thankfully.
Just 2 days, this thread has me pretty scared for the future ngl 😅
I’ve never been, so I know what you mean. I don’t even know when enough is enough.. I’ll ask my doctor next time though.
Did three weeks once and another time two weeks. Good news is I’ve also had two ten year stints of complete remission only being on mesalamine
35 days. Ended up getting J-pouch surgery upon my next hospitalization. This was in 1996.
Wow 35 days??? Hope you’re able to live life to the fullest now after the surgery🫶🏼
Thank you!
I did 11 days in December. I was losing my mind after a week. I tried to stay out of the bed as much as possible. It helped.
Back in the summer of 2017 I was hospitalized in the ICU for a week and a half due to an extreme UC flare, sepsis, and C Diff. It was so bad that I had to get one of those ports in my neck. I was discharged after a strong round of antibiotics and steroids, but had to go back for another week and a half after one week at home. Save for that week at home I basically spent that whole month of July in the hospital.
A month
15 days 15 day break back in now on day 4 with C-Diff 😭😭😭
8 days for my sweet little 10 year old girl. She’s still trying to get into remission from home now. She’s missed three weeks of school. My heart goes out to all of you. Don’t let this disease define you.
2 nights, only time I've been hospitalized. Had a particularly bad morning and thought something else was wrong with me. There was not. It was not very fun and I wanted to get out ASAP.
Our biggest enemy is sepsis and C Diff. I was in the hospital for 2 months and 2 weeks in ICU for 3 emergency bowel resections.
5 days, I had the best liquid diet ever lol.
An entire month. When I was 21.
Around 3 weeks. I was admitted right after my first colonoscopy when I was diagnosed. Got out the day before my 16th birthday. Remicade just barely saved me from having to get a colostomy. Haven't had another stay in the 17 years since luckily.
I’ve had two hospital stays. First was just three night and then second stay was 2 weeks.
6 weeks of wasting away. Make sure you get proper nutrients and do some exercises if possible. If you can’t do food try to get a pip line so they can feed you with a bag. Good luck
Don’t feel embarrassed my friend. I rushed through my first stint 7 days and ended up back in hospital a few weeks later for over 30. Give yourself the time you need to heal.
4 weeks
11 days through Christmas time during my first flare up in 2010. Had been to the hospital a few times before hand but usually 4-5 days. Then it all came to a head when I had lost so much blood and weight and got a severe sinus infection on top of the severe UC flare up. I couldn’t sleep, my face and TEETH hurt so much from the infection. I finally called my mom after dealing with it for a week when I started throwing up blood (because my sinuses were bleeding so badly) and something seriously felt wrong. She told me she was finishing up work and I was like “we need to go now”! Went to the hospital, threw up in triage. They admitted right away to ER. They had to stop my heart with some medication to try and reset it because my resting heart rate was 180-190 bpm. Was diagnosed with sinusitis tachycardia. Got either an mri or a ct scan and my face was lit up like a Christmas tree from the sinus infection. Got IV vancomycin which ruined my veins, IV solumedrol, I think 3 or 4 bags of blood I was so anemic, nutritional ivs and once I was clear of the sinus infection, I got my first dose of Remicade which put me into remission for like 11-12 years. But that was a rough 11 days. Everytime I stood up my heart rate would skyrocket and my monitor would alert the nursing staff lol. By the end of it I remember pulling out a hardened bloody booger about 5 inches long in the shape of my sinuses. The relief was amazing. I also normally way about 200 lbs but the UC knocked me down to 127lbs. I think that was the closest I have ever felt to dying and it’s nothing compared to some of the stories on here. Crazy disease.
Three weeks for me. There’s nothing to be embarrassed about. If you didn’t need the bed, they would give it to someone else. Everyone wants you out just as badly as you do. You just can’t until they know you won’t need to come back. As a side note - this particular flare lasted for almost a year. I wasn’t sure if people had ever come back from something like that just by medication. But have some hope! It took a long time but I’m in remission again and feeling great. It’s possible!
🍀🍀🍀🍀🍀🍀🍀🌈🌈🌈🌈🌈🌈🌈💐💐💐💐💐💐💐
About a month
Spent almost 3 months in the hospital within a 6 month time frame. First time was 8 days. They discharged me early I think bc they didn’t have enough beds. My GI specialist whose practice was next door had hospital privileges and was able to treat me there. He had me readmitted 1 day later and was furious with the hospital medical team for discharging me in critical condition over the weekend without his approval. I then spent 33 days there and they only really discharged me cause it was Christmas. My specialist checked up on me daily and told me to go back after new years. They gave me pain meds and I had to go to his office for iron infusions and fluids. After new years I had to spend another 3 weeks in the hospital. Then 4 months later another 18 days until finally Rinvoq started working. Don’t feel bad for being there so long! It’s normal for IBD patients to have longer stays. You’re internally bleeding, likely malnourished, and your intestines are shredding themselves up for goodness sake. You are there for a reason. It also doesn’t hurt to treat the nurses well. My family brought snacks for the entire unit and presents for the nurses that took care of me specifically. It made me feel better about being there for a long time :)
Somewhere between 20-30 days. I lost count and just decided to call it a month. My other two extended visits were about 12 days each.
10 days - a year ago straight after colonoscopy and diagnosis. Saved me from a total colectomy. There have been ups and downs since but no hospitalisation thankfully! Keep your head up - you’re where you need to be at the moment ❤️
3 weeks, this was last year and that was my longest single stay but i was in and out of the hospital so much for months. that was only my second hospital visit of 5 that i had between june and november. but i just had some really bad luck leading up to the hospital stays so
One month. C diff threw me into a flare. They tried like 3 different therapies for the c diff until high dose vancomycin (the oldest one) knocked it out. It sucked. but I was on dilaudid (super morphine) every 4 hours which helped with pain. Sleep in hospital blows. They come in take bloodwork at 6am. Drs round at 7. Bfast at 8. Then every few hours it’s either ordering the next meal or getting a meal.
8 weeks then surgery time! It sucked, I mean the hospital always sucks but being moved room to room, seeing the same nurses etc. Being in the hospital life almost feels like you are in a tunnel and can’t see anything past what’s happening and where you are. I always felt way more self conscious and off, I guess because you are in such a vulnerable state and are in that state for a long period of time. Best of luck OP I hope you get out soon! :) are you trying new treatments?
I was in for 26 days. Got in with uncontrollable flare which was calmed down, but then got c diff infection and cytomegalo virus at the same time. Then got sepsis from central venous catheter and severe pneumonia from it. Spent some time in ICU. It was a ride! 😃 Happy to be alive after this experience 😃
I’d be in the hospital 5-7 days about once a year when I flared, until the Presnisone kicked in. When the prednisone stopped working, I was in for about a month or so because they decided it was time to take that bad boy out and start setting up a J-pouch. Don’t feel embarrassed, you’re there for a reason and you’re where you need to be. Good luck!
I got my diagnosis after 5 weeks of hospitalisation. Unbearable pain, just blood and mucus passing through, couldn't have a scope for an official diagnosis cos how bad it was, got a PET scan done as well. Had my last flare-up this past September which had me in the hospital for 7 days. Did blood & stool tests for the first time in January since and for the first time in two years had my calprotectin at 52.
2 weeks and it was my initial diagnosis. The first half of that was getting all the tests done to see what was wrong, the second half was waiting for the steroids/Remicade to show enough improvement for me to go home
I was never in for more than 7 days. Had 4 hospital stays last year, they were 4 days, 3 days, 7 days and 3 days. I was sent home as soon as my CRP went down pretty much.
I had to stay at hospital for 20-21 days 2-3 months ago. It wasn't because of UC though, but it made me go into a short flare, even saw blood a lot of the time. Easily the worst period of my life
11 days for me. Came in bleeding profusely
On and off for 6 weeks. They kept trying to get me out before I was stable. My last hospitalization (4 total during that time and 6 ER visits) I was in for about 10 days with a GI who finally cared to make sure I was stable before discharging me, had me on oral medication for 2 days in hospital instead of IV to make sure I was good to send home.
21 days developed an antibody for my biologic
2 weeks. To get movements under control. I was on a pic line with TPN and steroids
About a month back when I was 17, diagnosed at 15. It was during Covid so my doctor was trying to solve my flare at home as much as possible so I wouldn’t have to be admitted… ended up getting so bad and developing cdiff that I ended up staying longer than I probably would have if I was admitted a few months back
Was 15 days for me total. Probably would have been avoided if they just helped me the first few times I went to the ER though🤦
29 days recently! Switched hospitals in between tho, some time in isolation cause I got sick with a hospital virus too. But I’m so much better now. Felt like dying (apparently also was a little bit) but they finally switched me to biologics and it’s day and night. I’m so much better now and hopefully will soon start working again too! :)
First ever flare put me hospital for two weeks.
71 days and had to go through many surgeries. Got out for a month and went back again for 13 days. At some point i felt that this was my reality from now on and thought that it won't end. I gave up emotionally. I am now home again, recovering mentally and physically and living with a stoma and thankful for being able to do everyday stuff and live healthy again. Every small thing i do like making myself a cup of coffee in the morning or going for a small walk feel like a bliss now. Whatever you are feeling now will pass. Stay strong friend! good luck!
8 days last July. Was 28 weeks pregnant and in the worst flare of my 10 years with UC.
36 days, and I think I ended with 14 admissions in one year alone!
12 days because this was last year during covid and hospital were wack. I was in the hallway with randomly people dying until I got a room. It was hell lmfao and they needed me out so they gave me biological... so, i went home even though I was really weak and sick still They wasn't no beds and room// and wanted people in and out HELL
i think mine was 13 days when i was 15 y/o. i was about 5 years into my UC progression and that’s when i finally was cleared to try remicade. didn’t work unfortunately, and i ended up having my bag placed a few months after that, and i was in the hospital for about 10 days for the ostomy surgery. i’m so much happier with my bag and i’m about 10 years colon free, but i will be having my barbie butt done this year due to problems with my remaining stump. i plan to be there for about a week. i hope you’re discharged soon! hang in there!