Community Forum

I am having a proctocolectomy with a possible ileostomy in two weeks.  I have "failed" all other forms of treatment, am damaged greatly from steroid use and am ready to get some sort of quality of life back.  Any advice on preparing for the surgery or on what to expect after.  I want details... I like to be prepared.  Thanks!

 Reply posted for krosie11.

I can say that you will feel so much better. I can also say that after 5years of freedom my boyfriend decided he wanted to try and get connected again. Today he is questioning if he made the right choice. He had such a tough time with getting his bag that I believe that he didn't realize how better life was feeling "normal".

I do not have Chron's. I suffer with IBD. I can't say could of should have. I can only tell our story and give my view point as a 'caregiver'. Best luck and relax it will get better. The pain WILL last weeks. You WILL feel normal again.

 Reply posted for jstepnio.

Jstepnio,

Thanks for the advice.  I am a go go person and have been mentally preparing for down time.  I am glad things went so well for you during your surgeries.  Good luck to you.

 Reply posted for fuzzy.

Fuzzy,

Wow, you have been through the ringer.  I will keep you in my prayers.  Thank you for your well wishes.

krosie11

 Reply posted for krosie11.

Hi krosie11...I'm simply repeating myself but can't stress enough...if you haven't checked-out wwwC3Life , please do! I've had Crohn's for 25+ yrs. & been through 90% of what I've read on this forum. I also read your personal story & parts of it were very similar to my story...namely, I'd prefer the pain over the nausea & for years, I would always say "when I get better". Certain aspects got better, other's worse. I eventually ended-up bowel incontinent, filed for disability (was awarded SSDI but lost the 4 yr. LTD-ERISA case, quite unfairly) & 2 yrs. later was diagnosed w/ an exremely rare eye cancer. Due to the cancer diagnosis, I had to stop the 6-MP & Remicade (may have been the cause). Anyway, while I certainly do not enjoy dealing w/ the ileostomy & it doesn't cure the Crohn's, if I could go back in time, I believe that I would've had the surgery a long time ago. The disease took over my life & has left me w/ General Anxiety & Panic Disorder. Had I had the surgery earlier, I don't think that I would've ended-up w/ these addtional disabilling disorders. So, good luck w/ the surgery & once you get acclimated to the appliancce, I assure you that you will find much more freedom. Again, please visit the above website, certainly following your surgery. fuzzy

 Reply posted for krosie11.

hi

after fighting with this crohns, which will never go away, but can be controlled by you..your operation will make u feel much better, i have a colostomy bag for 2 years..i thought of many ways of getting out of the operation but after 28 operations in 9 years of absesses, and fistulas, i decided to go ahead and take a chance..im glad i did you will also, it may take you a few months or so to get used to it, but i live life like i never did before... it wa tough, i have a scar from my lower right rib cage to my belly button on down to my ? but everytime i see the scar, i think of it as a scar of life, i was given a second chance, and i am one person who's life was a living *** with crohns, neve did nothing go anywhere, have to stay close to a bathroom , no camping , fishing trips i was a home body...but not no more..there are qoestions that u can have the doc give u..#1 is it reversable  #2 how long # if not why...since mine was not done right in the first place in 200o a year after it was found it tourchered me for years after....ask tons and tons of questions, i cansit year for hours and tell u why i'm alive but i can't if i didnt have the operation, it would have killed me sooner or later, i was a level 5 which is almost too late for anything, my doc freeked out when he opened me up and saw the infection, they took out alot more then he thought he was going to before he started, but now im alive and well because of it... and i have years and years to catch up on life..think about it..do u want to see tomorrow..i did..2 yrs later im happier and gained wieght back just to get some of my body fat back, it feels good....tc 

autm....central missouri

 Reply posted for krosie11.