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Ostomies???

Fri, January 23, 2009 4:51 PM

I need some advice. I have been diagnosed with Crohns for 9 years now. Had a bowel resection in 2000 which is when i was diagnosed. In 2001 was put on Remicade and was in remission for the better part of 5 years. Then I began having this current flare. For about 3 years now I have been on numerous different meds to help, nothing has worked I am in pain everyday. November of 08 I had surgery for a rectal abcess that almost killed me. I really thought things would get better but they have not. I am out of options and my doctor says it is time for an ostomy. I am having a real hard time with this. The reason being the only experience I have had with any ostomies is at work. I am a paramedic and we get called to nursing homes often. They are not taken care of very well and noisy. I am afraid of smelling and making all kinds of noise. I am only 34 and I just dont want my insides on my outside yet. I am scared of the surgery and my doctor says that there is no guarentee that this will help. So please if anyone can give me any encouraging words or bad whichever. Just some other opinions would be nice. My family is very supportive and want me to have the surgery so I will feel better but they just are not comprehending the psychological issues I am going through. They think I am being selfish and vain. Thanks for your input.

medicgrl2003
Joined Jan 22, 2009

Mon, February 09, 2009 1:00 AM

Reply posted for medicgrl2003.

Hi, I can feel your pain. I am new to my colostomy. I just had mine done the week of thanksgiving in 08. I was really worried about it also. Here are
a couple of things that I can tell you for sure. No one will be able to notice that you have a bag on your side. I am back to work and no one was able to
notice that I had that surgery. As for the smell you don't smell it at all unless you have a leak in your seal. I highly suggest the bags with the filters for those
that have allot of gas. This will stop you from having to air out your bag which will cause some odor. When you empty if is just like using the bathroom and I know that not everyone smells pretty when you use the restroom. As for the noise most of the time most of the people can not here it. I know that it will sound loud to you but that is because it is in your body. I also know that allot of people know at least one person that has had a colostomy and all most everyone is understanding. Everyone that I work with know that I have one and I am one that will make fun of it. More so when it makes the noise. Most of the hospitals have what are called stoma nurses that will help you through your transition. good luck

kimberly
Joined Oct 29, 2008

Sat, January 24, 2009 2:41 AM

Reply posted for medicgrl2003.

hi, i am a crohn's pt. dxed at age 12. I had my ileostomy at the age of 17 when all other avenues failed. My GI ran an ostomy support group at the time so he saw to it that I had 2 female visitors see me before my surgery. That really helped in my acceptance of it seeing as I thought I'd be the only one with it.

If you go to the united ostomy association of america's site, there is more information to educate yourself.

You are the same person with a bag, except that your plumbing will be rearranged. Nobody knows you have it unless you choose to tell them, you can travel, work, date, do whatever you did before the surgery. I went on a cruise to the Bahamas with mine. I had a great time.

See if there is a local ostomy support chapter near you. Go to the meetings before surgery and talk to the others there to educate yourself. It is not as bad as some make it out to be.

As for odor, you can spray the bathroom w/Lysol before you empty, light a candle and then blow it out beforehand, use M9 drops from Hollister, use Nilodor, the hints are endless.

boydsbearfan
Joined Apr 8, 2008

Fri, January 23, 2009 1:00 AM

Reply posted for medicgrl2003.

Maybe there is a clinical trial you can get into. I was reading on one of the posts of someone in a clinical trial and it worked for them. Good luck and keep us posted..