Need a Lift

[Ribo]

Hi everyone - I hate to post a thread like this but I've been in and out of the hospital 8 times since the first of the year. Luckily (I think) a double balloon enteroscopy performed in May found physical strictures in my small intestine.

Surgery took place this past Tuesday (June 24) and here I sit in my hospital room. My wife left about 90 minutes ago to feed the dogs and do home stuff.

Anyway, I'm sitting here feeling sorry for myself. I'm so over being in the hospital it's ridiculous. I've spent 8 weeks hospitalized since early February, I'm staring at a meal of clear liquids, and I just want to go home, enjoy my wife and the dogs, spend time with our friends, and not be confined to the hospital anymore.

I want to be able to work again; contribute to making the house a home, and enjoy vacations without canceling them at the last minute. We had a wonderful trip planned last fall - fly to Chicago, train across the country to LA, and over a week spent in a beautiful hotel with another couple we are friends with - all of which had to be cancelled when I flared.

So I'm depressed, and just looking for some positive thoughts - and I really wish I could go home.

 

[Clash]

I truly hope the surgery turns things around for you and you are able to reach a long stable remission. I am sure with healing and recuperation you'll be able to enjoy all of those activities soon! HUGS!

 

[Alley2231]

I've had some hospital stays too this year. Nothing at all compared to what you have gone through, but I understand the feeling of not wanting to be in the hospital, feeling hopeless and just wanting to live a normal life. All I wanted when I was in the hospital was my queen sized bed and to have my cats cuddle with me! Nothing beats the comfort of home - even if it means being confined to it for weeks/months. While I was in the hospital I had a few nurses who also had Crohn's or UC and they had all told me the same thing - 'It will get better.' That was something I didn't want to hear at the time, but it is true. I hope the surgery you had helps you and that in a few months you'll be able to look back and see how much things have changed for the better!

 

[shamrock15]

Well Ribo, if it helps to see there can be good that comes out of it, here goes.
Diagnosed at 18, and had the disease stay active for 25+ years until going into remission (knock on wood) about three years ago. In that time, I wasted my twenties feeling sorry for myself. Part of it revolved around up to 6 surgeries, a couple balloon dilatations, an ostomy put on and removed, problems keeping weight. About half way through this, I made a conscious decision to live life anyways. As a result, I had a 10 year career in banking, went back to school, got a Bachelor's of Education and became a teacher. I also got married, now have a 6 year old beautiful girl. I was a well respected hockey referee and have become a decent artist.

It is easy, and understandable, to think that the road ahead will be a tough one. Since you have strictures, it is well worth speaking to your health team to decide on a course of action post surgery. Remicade does work well for keeping strictures from forming. I have stricturing crohn's, and remicade has done wonders for me. Make sure you pursue this. Secondly, set yourself a list of goals to achieve and don't let crohn's get in the way. I do think that we become far more sensitive to rectal pressure and convince ourselves that we need to go more than we do (please note as I say this that it is still common for me to go 5+ times daily while in remission, and most of what I have accomplished has been done on closer to 10+ a day). It takes a commitment, but the pay off for a good life is worth it. Give yourself time to heal and accept that it will take a couple months to recover from the surgery. With management, you can achieve a lot. Best of luck!