New here.. facing resection or possible temporary ostomy?!

Hi everyone.. I'm new here and glad to have found this site. I have had crohn's now for about 7 years with little remission. I've been on every drug under the sun including Humira, Remicade, Methotrexate and of course the dreaded prednisone which is no longer working. I believe that I have a stricture on top of the inflammation and the surgeon says she can go in and see if I am healthy enough to do the resection. If not.. the dreaded temporary ostomy.. lovely! Anyway... I'll find out when the surgery is set for. I guess when I wake up I'll know which route she went! Terrified!

my experience is similiar. within 5 days i was in surgery. they said from the ct scan it was bad but by the end of it i woke up with 2/3 of my colon removed.. i am lucky i did not wake up with a bag. I had never taken drugs, mine was i guess untreated for who knows how long, so it was very sudden. its been little over 5 weeks since surgery and i feel alot better than i did before. iwork retail so im on the floor for 8 hours + a day and i havent had any problems, i just have a 20lb limit until end of may.

Wow that must have been scary! Glad to hear that you are feeling much better. The thought of not knowing how I will be when I wake up is scary so I am preparing myself for the worst. Knowing it isn't permanent (at least not yet) helps. This disease is terrible and I really hope that one day we'll have a cure!

I'm sorry to hear about the dreaded resection/ostomy gig. Really. Been there done that, and have the reversed ostomy to proove it! (along with a bit of a scar too!)
I looked at it this way: options, save my life orrrrr ostomy. Hmmmm, I actually pondered that question for a few minutes thinking surely my body was not going to do this to me. In the long run, my common sense and sense of self preservation won out. I had it for over a year. It wasn't as bad as I thought it was going to be, truly. I did have to keep reminding myself that this was going to save my life. It was going to insure that my 3 children kept their mother, that I could still be a daughter to my parents, oh yea, and it was going to save my life. LOL.
Its scary, and I feel for you. Its going to be ok, though, either way. I told my Doc, "do what you have to do so that I can live the life I've always wanted to". There's nothing like a life threatening ordeal to put things into perspective. It did for me.
I hope for the best for you!
I know that we crohnies are strong, and WE can get through this together!
Take care of yourself, your the only you you've got!

Yes saving my life is pretty important (smile).... I am just a planner and not knowing is hard but I'm over it and know that it will all work out. I just got my surgery date today (June 6th, a day before my birthday!) I didn't mention that I also have possible endometreosis and the GYN surgeon will also be there to remove any endo at the same time so hopefully I'll be all cleaned and lubed up!

Thanks everyone for your support and I wish you all the best as well!oo:

Hi there and welcome!

Sorry to hear you haven't been able to get things under control with meds.

As a recently new permanent ostomate, and having had a temp for a year in 2002, I would offer that an ostomy, permanent or temporary can be not only a life saver, but a life changer, as in for the better. I cringe when I see people referring to it as "the dreaded ostomy". For most of us, it has been such a welcome relief and really given us our lives back.

People are probably sick of hearing me say this by now, but I feel surgery should be looked at as a treatment option, and not just a last resort. Dealing with the surgery itself and the recuperation is not easy or fun, but it is REALLY fun when you are all better and you can do things you haven't been able to do in years and eat all your favorite foods again and sleep more than 1 hour at a time!!! And it is so much fun that you won't even care that you have a bag!!

Anyway, enough of my pro-bag rant. Good luck getting things under control with a resection. It is scary to go under and not sure what you are going to find under the sheets when you wake up! Whichever route you end up, I hope it all goes smoothly.

Keep us posted! - Amy

I totally appreciate your information! I understand and agree that surgery is a life saving option. I guess I just always feel like there is something that I have been doing wrong or that I haven't yet tried and it is such a permanent step. I know that this is the right choice for me and I am trying to remain positive that it will be successful and give me relief! This forum has been very helpful in moving forward with my decision. Just got my surgery scheduled for June 6th! Looking forward to getting my life back and being able to plan something for a change )

Thanks again!

I was recently diagnosed with Crohn's early last year. It's been really difficult dealing with this disease. You can read the other posts I have made about my surgical experience, but long story short, I was hoping for a resection and woke up with an ostomy bag the day after I turned 23. I pretty much was in shock. It was a scary experience, and have dealt with a lot. The Ostomy bag takes some getting used to. It's weird at first, everything you eat pushes out into this bag, but you get used to it after a while, you forget about being different. Finally, the day came when I got it reversed.

It's a really tough experience to go through, I can't tell you how many times I've cried, how tough it was to get through each day, so many hospital stays, so many tests, but now after all that, I am finally doing much better, especially now that it's been reversed. Just remember, no matter what you do, no matter how bad things get, stay positive, and remember, that through all the bad, there is light at the end of the tunnel.

I was laying in a hospital bed just months ago with a hole in my stomach and tubes hanging out of me and could barely walk.

Now, my ostomy was reversed, and the other day I was out filming for the company that I worked for called RED where I got to film an Army Tank at the Oakley building running over a sailboat. Feels so good to be back, not flaring up and in a bunch of pain.

Just remember, through all the bad, good times will come, things will get better, don't give up no matter how bad things are looking.

Thanks so much! I am very hopeful as I have been through it all for many years now and I cannot deal with this anymore. I have prepared myself for "waking up with the bag" knowing it's not the end of the world and to just be strong as I know I can deal with it. It's just hard knowing my track record and thinking that there could be a possibility that it is never reversed. I try and get the thought out of my head as I know that people are living with them permanently and doing just great. Thinking positive thoughts!!! The surgery will come the day before my birthday.. could be the best birthday ever!

June 6 - D Day - or we should say that it will be the end of D (as in diahrea!) day!!

Try not to think that you have "done anything wrong" as you say - I kind of felt the same way. I tried alternative treatments, drastic diet change, tons of meds - nothing helped! I felt really defeated and betrayed by my body. So, I got my revenge by taking out the part that was treating me so badly!

Hang in there - good luck with the countdown to surgery - sometimes the anticipation is the worst part!!

- Amy