Having Colon removed 11/11 - need tips/helpful advise

I did not have a colectomy so my Ostomy isn't permanent I have a temporary loop iliostomy. With that said my biggest tip to prepare you for the bag is educating yourself before you wake up with the bag. At first I was freaked out about surgery and possible bag and looking at my stoma.

I spent the weeks before my surgery watching YouTube videos on how to change the bag and look at people's stomas. It really helped me. By the time my surgery was here I had an understanding of the bag process and all the products used like stoma powder ect.

Some of my favorite videos are by stolen colon and a YouTube "how I change my Ostomy bag" video by a young woman with long red hair.

My roommate at the hospital got her bag the same day as me. She was really overwhelmed with emptying and changing. She even commented how calm I was about all of
it. I went in with my eyes wide open!

I had a very bad experience looking at U-tube..ugh...scared the BeJesus out of me!!!! So, not knowing exactly what might pop up over there, I would steer clear. That said, my best info came from this forum. To be honest, I didn't have a clue what to expect. I had ulcerative proctitis for twelve years and all the meds failed me. I was prednisone dependent and it was killing me.

Best thing to do, is make SURE you have a very experienced surgeon!!!! I picked the top guy at Pa. Hosp in Philly. He did a fabulous job on the stoma..but, guess what? He left a bit of rectum and my anus intact. Now the disease is in that part However, in his defense, there were complications during surgery, something about a bleeding issue, (of course, my daughter and husband cannot remember what the surgeon told them when he called them from the operating room), but, he probably wanted to hasten the operation. Mind you, I was extremely ill going into surgery and was almost 64 yrs old. I had a proctocolectomy with end ileostomy. I was in the hospital 11 days because of some issues...but NEVER a problem with my stoma. I just asked my ostomy nurse lots of questions and he was very helpful. It is overwhelming at first, but, you'll do fine. Just take one day at a time. My operation was June 28,2010. It gave me my life back! I know I have this issue, but I am sure I can deal with it. My surgeon retired in 2013 and I am seeing a colorectal surgeon here in Jersey. He did numerous biopsies and there is no dysplasia or cancer. He does NOT want to remove the anus. I am seeking another opinion on the 27th of Oct. Believe me, I am not anxious to have the anus removed if preventable.

Best of luck to you!

Hi.

In January I underwent surgery to remove part of my colon (so I have a permanent colostomy), along with a hysterectomy (they took everything out), and finally had a bladder sling done. 3 surgeries at one time.

I agree with others about having a WOCN, and see them before surgery, not just after. It really helped me!

As for other ways of learning about things, I read a lot of a book simply called "The Ostomy Book". It was actually pretty good and covered a lot of subjects! I connected with an ostomy mentor (someone on this forum must know the website). Super helpful….I asked her every question that popped into my head, and she never made me feel dumb, and it was great because you pick someone that you think you would relate to, someone that has "been there, done that". Make a list of questions to ask the surgeon when you meet with him/her. Also check out the United Ostomy Association of America website, lots of good info like on here. Ask questions here too--we are all here to help each other.

I think it was coloplast? that has a whole "kit" to introduce you to the wonderful world of ostomies!

One last thing (for now), be sure you talk w/ the surgeon doing the hysterectomy about hormone replacement therapy--if that's something you might need. I'm 37 years old, and it feels weird to have hot flashes here and there, but working w/ my doctor has gotten me to the point where I would almost forget about it if I didn't have to change the little patch twice a week. It is pretty nice though to not have to deal with periods!!


Just remember, one thing at a time. It's a lot to take in at first, but it gets easier every day.


Sunny13