Need Help: Waiting on Surgery Apt

Hi everyone, I have been dealing with Crohns Disease for about 4 years now.. and I can truly say its been a tough one. I recently seen a surgeon and my crohns has affected majority of my colon as well as my lowe bowel. He suggests I get a Total Proctoilectomy done with an Ostomy Bag... I was very upset and shocked about this and wasnt expecting it to ever get to this but it has. I have decided to have the surgery because I just feel I have no life. I rarely go out... I cant do any of the things I want to do... I have been on Remicade now since February..it has taken away the pain as well has helped me tolerate different foods but I have many many frequent bowel movements.. like every 10-15 mins... :/ Many people are telling me that having the surgery is the way to go even though I may not agree with the Ostomy bag and the change in lifestyle but Im just having alot of difficulty accepting it all. If anyone has any input or personal experience I would greatly appreciate any you can give.

Thank You and I hope everyone has at least one good day.

Hey cole! I know this is a lot to take in. That is a huge life adjustment. My husband just had the same surgery for same reason last week. He's still in the hospital but getting ready to come home soon. Is your surgeon specialized in this type if thing? My husband had a hard time adjusting to the idea. He's young-29 and found out rather quickly that he needed the surgery. He felt like it came out of no where but really it's been a long time coming. He also has changed his life dramatically for the disease. Not eating almost all foods, running to the bathroom, having leaks and accidents. He just had no idea how bad things had got because with it he just adjusted to it. Just like now he is adjusting to the bag. The first few days he was angry about it. But now he's doing is own emptying! He's still in the hospital so things aren't perfect but I know we will get there and the thought of being able to go out and enjoy ourselves is so exciting! We had met with an ostomy nurse before the surgery and she was so nice! So helpful! And toward the end of our meeting she revealed that she had one! She had UC and had the stoma reversed but begged for it to be put back on because of all the complications she had after she was put back together. That was so refreshing and helped him make his decision. We sat there with her for a while and had no clue!
It's a very big decision. Just make sure you have all your facts and have really studied your surgeon. My husband had everything removed, colon, rectum, anus. That way there's no chance of disease coming back there. The GI dr told us that after this there's only 10% chance of the disease coming back at all without meds, 5% with meds. That sounds great!

Good luck. You found a great site. They have been so helpful for us in this rough time.

cfg said...
Hi Cole I completely understand what you are going through. I never ever believed my colitis would take over almost my entire large intestine, I never ever wanted to even think about living with an apppliance (bag) it just horrified me. I couldnt even look at utube clips or pictures without feeling sick. I really struggled with it and knew I wouldnt cope. Remicade was working well for two years but the polyps were spreading and growing, and the risks with the concoction of drugs was a concern. I have just had surgery 2 months ago, unfortunately I didnt have enough bowel to create a j pouch as planned, so I now living with a permanent ileostomy. I spent a month in hosptital and that was difficult, but I suprised myself and my family, I am coping very well, the people here helped me through it all just like they are now with you. I have a second chance at life Cole, and I didnt have that before, I was kidding myself thinking it would get better. I wish you all the best whatever you decide.

I'm curious about a technical part here. You're saying you had pancolitis. U.C. affects the large intestine. You should have all the small intestine you need to create the J pouch? Do you have polyps in your small intestine or something?

Welcome, Cole. I often think that if someone had told me 10 years ago that I'd be happy about wearing a bag someday, I would have thought they were insane. But this surgery gave me my life back, and the bag is nothing compared with the disease.

What I found was that I was so used to being sick, that I barely remembered what it felt like to be well. It's just amazing to be able to eat most foods, to not have to run to the bathroom all the time, to have no accidents, and to not be dragging all day long, every day. Many people who had only known me sick were so surprised to see me better -- just look better, calmer, etc.... one coworker said she'd never really seen the best of me until I had surgery.

It is an adjustment, but now not quite two years out, I barely think about my bag most of the time -- ten minutes or so twice a week to change and fewer, shorter bathroom trips. I had some complications, but they were nothing compared to being sick all the time.

One thing that helped a lot emotionally was that I was really ready for the surgery. I was so, so sick, and I just got to the point where I felt like I was done trying new drugs, diets, etc.

What helped me accept initially was to just understand that in most of history and many places today, I would have died of my disease, but now not only was I getting a chance to not be dead, but I was getting a chance to restore my quality of life. I felt immense gratitude that smart, compassionate people are willing to become colorectal surgeons, that people invented and continue to improve ostomy supplies etc. Of course there're a lot of negatives in there too, but I tried to see the full picture -- a lot of people helped me.

Hang in ... it's a hard time, but it really can get a lot better.