Hi! Need Help Please!

Hi Everyone,

My story is a long winded one so I will cut it down and hopefully not bore you to tears. I have had crohns disease for the past 21 years and have been very sick for the last few years, we have tried pretty much every drug therapy there is and currently on humira which they are about to call it unsucessful as well since I am still very sick and constantly losing control of my bowel, I am plumetting out of control and scared to death to leave the house for fear of this happening, I do wear the good old tena pads when I go out for safety but I feel I have no quality of life. I had a right side hemocolectomy done 2 years ago and the crohns came back 6 weeks later, my GI says its the fastest he has ever seen it come back. Anyway we are now considering an ostomy and I am so scared and need as much input from you guys as possible. Does an ostomy have a bad odour? Has it been ok for your sex life? Has your quality of life improved big time? Oh and at the moment I have a stricture so off to the hospital tomorrow for a ct scan, then a colonoscope in 2 weeks. The pain is not good and I am my own worst enemy, cause I am very stubborn and try to avoid hospital at all costs then I get so sick I am rushed to hospital. Yeah I know, stupid huh . I am just so depressed and hate spending so much time in the hospital to the point every one that works there knows my name lol. Anyway thanks for listening any input would be greatly appreciated.

The only time I smell my ostomy is when I empty it into the toilet. In my opinion, it doesn't even stink as bad as poop. I think it smells a bit like what I ate-a bit. I don't stink either! If you put your nose to my bag, you still can't smell it. (My husband actually did that....just to see). My surgeries are too recent to talk about a sex life yet. I'm still too sore and afraid.
Even though I had complications, my quality of life has improved a lot. I can eat anything! I went to the grocery store the other day and I just couldn't get over that I could buy anything. I didn't have to read labels. So far, nothing bothers me. I'm having left over chinese for lunch right now.
I think we ALL hate hospitals and put it off longer than we should. Too many bad experiences. The only time I want to go back is if I'm in normal labor to have another baby :)

Chassity

soemthing else you can do in the bathroom at home is light a candle when you go in and then blow it out after you empty or light a match after you empty, that takes the smell out of the air too.

Thanks for your help everyone. I have just come home after having ct scan with contrast and didnt handle it too well, I started throwing up right in the middle of it and then afterwards running to the toilet to the point my butt hurts so much. After reading your posts I am feeling a little more comfortable with the thought of having an ostomy, still scared but I cant continue to go through life like this either, I honestly cant deal with it for much longer. Summerstorm I am a 46 year old female. Thanks for making me feel welcome and helping out
Take care all

Ditto to flchurchlady! I am med free and loving life...

I don't use drops in my pouch, but when i am out I spay Lysol (I carry a small travel size one in my purse) in the toilet before I empty and you cannot smell anything:)

oops i said the post is by tubesforwomen, it's actually from LittleE its called Tube Tops Rule

I too avoided the hospital or meds until I was so sick my family was afraid I was going to die.  Which is actually how I ended up finally having surgery.  There was no other option left.  I have to say, the bag, once you get used to it, is GREAT.  No more worry about how close the nearest bathroom is or how long ago you ate, or what you ate and how sick it might make you.  Because you're not worrying and you can eat and absorb the nutrients you will feel so much better. 

Make sure you have a good surgeon and a good ostomy nurse after.  They can make all the difference in the world.

Good luck to you

Ohio43,
I'm glad you found a solution to your odor problem. I know anytime I eat seafood, which isn't ooo often, I too get a horrible smell in omy output. Seafood is just something I prefer to eat while I will be at home. I use the clorox tabs in the toilet, and I use Ostofresh drops in my pouch.

Big hug to you. I've been through what you're going through and completely understand how you feel.

My disease was also in the lower end of the large intestine and rectum, so you would most likely have the same results that I did from surgery, which has been no more Crohn's. It has been the closest thing to a cure for me, and that's why I log on here every day, to tell people like you that surgery will make your life so much better than the way it is now.

I'm glad you have a loving and supportive man in your life. My husband has been wonderful, too, and was my rock during all the years I was sick. He has also been here to see me healthy after surgery. Going through this bonds you in a special way.

Can you ask your doctor for some medicine to help you get through this emotionally until you're through surgery? Please know that we are all here for you and will support you every step of the way.

Cecilia

Andorable,
I just wanted to stop by here and wish you the best. I'd say getting rid of the Crohn's is the route to go, getting healthy is the first step to being happy. Are you happy now? I think you just answered what you need to do.

I also agree with the others about asking the dr for something to help you thru these really emotional times. And, we are really compassionate people here on this board. Log in and talk to us. We have been in your shoes. Everyone has a different story and sometimes hearing all those stories help in making the decisions you need to. We are here for ya!

well i do hope your movies go well!
once you have surgery, movies will be a breeze!

I couldnt pluck up the courage to go to the movies, so we stayed home. maybe one day