How many hospitalizations did you have?

[A ja]

Hey everyone,
Ive been diagnosed with crohns in may after a hospitalizations due to the inflammation and a fistula in my intestines. Ive been on steroids, immunosuppressants and humira ever since. I havent had a lot of problems apart from occasiobal loss of appetite, some weight loss at first and cramps from time to time and am waiting to have my next mri to see if the fistula need operating or not.

As i can see from othet posts i seem to be very lucky with my symptoms compared to other ppl but whats bothering me is the uncertainty of if and when i will be hospitalized again.

So i was wondering how many times you guys have been to the hospital in the first year and throughout your ibd?

 

[DJW]

I've honestly lost count.
My longest have included two 8 week stays (both in the summer) and at least two 5 week stays.

But on the good side - the last two years I haven't even had an ER visit. :dance:

Try not to worry about the what ifs and focus on the good days. Dispute all my hospital stays I did have long stretches of flair free, hospital free living.

 

[A ja]

I've honestly lost count.
My longest have included two 8 week stays (both in the summer) and at least two 5 week stays.

But on the good side - the last two years I haven't even had an ER visit. :dance:

Try not to worry about the what ifs and focus on the good days. Dispute all my hospital stays I did have long stretches of flair free, hospital free living.

Oh boy thats a long time to be in a hospital ive been for a week and i dont know but i really experienced it differently that i expected...kinda left me a little traumatized i guess.
But ur right, i should take every day and not think about it too much and most of all be grateful for not having symptoms that effect my life in a lot of ways.
Thank you for reminding me ☺

 

[DJW]

It used to really bother me. As I got older I started taking it in stride.

I also have severe Crohn's with lots of complications. Remicade has made a huge difference.

 

[A ja]

Well i sure am happy to see that remicade has improved ur life quality i guess i cant tell so far whether humiras working or not because luckily i had never a lot of symptoms all together apart from the fistula so im dying to see whether its gone or not...and apart from that i guess i just follow a low residue diet as proposed (dont know if that makes me feel better too) guess i just have to wait and see ☺

 

[DJW]

I hope it works.

 

[Carrie]

I have had Crohn's for 25+ years, and have been hospitalized <10 times. Twice for bowel resections, once for a strictureplasty (which was a three-month stay due to the incompetence of the NHS--or maybe just Kingston Hospital), and a handful of times leading up to the strictureplasty because of small bowel obstructions.

I think it is important to note that between 1999 and 2009 I only visited the hospital for non-Crohn's issues, so it's entirely possible that you will have limited stays in hospital once your disease is under control.

 

[Absentminded]

I had one 3 day stay in my first year of being diagnosed. Between November 2012 and January 2014 I had another 8 hospitalisations, ranging in length from 1 night to 5 weeks.
I haven't had any Crohns related hospital stays since 2014.

 

[Justanothercp]

One stay after resection. One ER visit.
I've been managing my crohns for 25 years. Not easily. Currently On Remicade, Lialda, Budesonide and supplements as well as following a paleo diet. I have to really watch it daily. I have symptoms pretty much daily and about once every 2 months I'll go on a liquid diet for a couple days to calm down partial obstructions. I think I'm headed for resection number 2 soon.

 

[hawkeye]

Within the first year, one hospitalization. Within the 25 years following diagnosis, 2 more hospitalizations - one for an obstruction and one for surgery.

 

[A ja]

Wow it really must be horrible to be at the hospital for such a long time. I really hope i will stay mainly hospital-free especially this year.

 

[Carrie]

My 3-month stay was completely unnecessary, and I truly believe I was back in the U.S. at the time, it would have been a one-two week stay, tops.

I lost 15-20kg in six months due to structuring. Right before the hospitalization began, I couldn't keep anything down. They doctors thought I was too underweight for surgery (at my lowest, I was 79lbs/36kg), and thought trying a few liquid diets would help me gain weight. But my stricture was so bad that even liquids wouldn't stay down. Alas, they insisted I keep trying for 1.5 months before starting TPN, which was also a bit of a disaster (I got sepsis, and they messed up my mess one weekend, blah blah blah). Finally, I was transferred to another hospital in a different NHS trust, and even though the tried to discharge me(!), I managed to stay one more day and meet the surgeon who, literally, saved my life. I was out if hospital less than a week after meeting him.

 

[A ja]

My 3-month stay was completely unnecessary, and I truly believe I was back in the U.S. at the time, it would have been a one-two week stay, tops.

I lost 15-20kg in six months due to structuring. Right before the hospitalization began, I couldn't keep anything down. They doctors thought I was too underweight for surgery (at my lowest, I was 79lbs/36kg), and thought trying a few liquid diets would help me gain weight. But my stricture was so bad that even liquids wouldn't stay down. Alas, they insisted I keep trying for 1.5 months before starting TPN, which was also a bit of a disaster (I got sepsis, and they messed up my mess one weekend, blah blah blah). Finally, I was transferred to another hospital in a different NHS trust, and even though the tried to discharge me(!), I managed to stay one more day and meet the surgeon who, literally, saved my life. I was out if hospital less than a week after meeting him.

Omg that really sounds like a nightmare...you must have gone through a lot of pain...i hope you are doing better now.

 

[Carrie]

It was at the time, but I am doing so much better now that it doesn't matter.

I'm also on Humira, and I truly believe it is doing its job at keeping me in remission. Hopefully, it will help you attain remission, and you won't have to have surgery any time soon.

 

[hawkeye]

I think it is important to note that between 1999 and 2009 I only visited the hospital for non-Crohn's issues, so it's entirely possible that you will have limited stays in hospital once your disease is under control.

Very true. I had a long run of remission from the mid 90's until late 2009 with just maintenance meds and only one flare requiring a script for prednisone.