Preparing for Surgery - Seeking Advice and Positivity!

I will be having my colon, rectum, and anus removed soon. I am scared but excited to get it over with. I know it will be tough using the bag, but I will learn through trial and error. I do have a sense of humor. I have even been trying to think of a good name for my stoma. I have had ulcerative colitis for 7 years, and it was time to do something. Pills were not working, and I had no hope left. I sure do not want colon cancer either. I think I will be a lot happier with this surgery, and I can finally get some of my life back. Handling a bag is not easy, so I need to know what you did to stay strong. I am not the type to stay home and hide from people after surgery like this. It is not good to isolate yourself from people. When I do get better, I am looking for work, which is kinda exciting. Please give me some good and positive advice!!

Hello and pleased to meet you. Boy, you are sure taking a big bite all at once. I know you want positive advice, but I can tell you that all advice here will be honest.

Things you want to ask your doctor.
MAKE SURE YOU TAKE SOMEONE WITH YOU WHEN ASKING THESE QUESTIONS and have them write down the answers because post-op you will be all doped up and it takes the memory time to get together afterwards.

How long will you be on the operating table?
Do they offer home nursing, like colostomy help? You will need it. You might also need an IV drip for a couple of weeks until your system is used to this shock.
His opinion on how long the diarrhea will last.
Ask him what the chances are of developing a fistula and will you be on antibiotics and what kind.
Will you have mucus and what is the best way to handle it.
Pain control for post-op is very important, ask him can you count on him for pain because it took me 2 months to sit without discomfort or pain. Do not settle for hydrocodone or Vicodin 7.5.
What are the chances of nerve damage due to the rectal removal? (My right leg is still on fire above the knees)
Will you have bladder problems and have him explain ways to correct it? (Most likely due to morphine)
Are they leaving the sphincter muscle in? If not, why not.
Will he lay out a diet plan to go easy on your new stoma.

Try and get all your supplies in the hospital before you go home like a walker and waffle cushions. You might want to get a U-shaped foam or gel-filled cushion, you will need it.

All in all, you should be right as rain and feeling like a spring chicken again. Please feel free to ask away and no questions are too small or stupid. We are glad to help. Let us know when you have your surgery and you will be in our positive thoughts. Hang in there.

Yes, it does take a long time to get used to a bag. All I could think of is my life is over for some time after surgery. I had a small spot of cancer in my large bowel, which is what started all my surgeries, and I still have a large open wound on my abdomen that's healing. My anal area was sewed shut, had several J.P. drains attached to that area and others. The stoma site is going to be very painful for a while. I had my surgery 3 months ago and still have liquid stools, and my bag has to be emptied about every hour around the clock. I've been on anti-diarrhea medicine since day one, pretty much. Nothing much helps. There are many foods you will no longer be able to have... foods with seeds, skins, etc. They could get stuck in the stoma. They should give you a paper with the list of foods to avoid after surgery.
You could also check in your area for an ostomy support group. The one I contacted near me was very helpful. We talked over an hour. Once I recover more and can get around better, I'm going to attend the monthly meetings. They had a picnic a few weeks ago, but being in the hospital, I wasn't able to go.
I'm glad you're strong and not going to let this get you down. I think knowing in advance that you're going to have a bag will help you prepare for the outcome. I woke up from surgery and bam, there it was. You can read others' posts here, and their experiences may also be helpful to you. I'm still new at this, but I know the best thing we can do is be strong and positive! And don't let our bags control our life or who we are!

You hang in there. I have to be strong! Thanks for the advice!!!

Thank you both for your advice and I will check out a few things when I go to the doctor. I will have an ostomy nurse so that is good and she will make house calls if needed. I will be sure to ask the surgeon at our next meeting some of the questions you mentioned.

Words of Encouragement from Ostomy Advocates I Hollister

Your welcome. Like I said, I'm new to all this so I'm learning as I go... I had a rough morning today and kept saying I hate this stupid bag... why me darn it... our lives change having a bag. Everything happens for a reason. I wish God would reveal why I had to be the one punished to have one... I just remember it will get better. It's very helpful to have an ostomy nurse. I had to call 12 home health places before I found one. And she's awesome! There's not many in my area. I'll keep you in my prayers for your upcoming surgery... and please get all your questions answered before surgery so you won't be left surprised or shocked like I was after my surgery... good luck with everything.

Hello, I had the surgery 2 years ago. I wasn't sure I would get used to the bag. But eventually, it became routine. Don't let the type of bag they put on you in the hospital scare you. They use the cheap ones that have no filter. There are hundreds of types of bags to choose from. It depends on what type of ostomy you have. If your stools are watery, you may want to use drainable bags. If your stools become thick or solid, you may prefer a closed-end pouch that you remove when full and replace with a clean bag. You can choose a clear see-through bag or a tan-colored one if you don't want to see the contents. It's all trial and error. As for the surgery, it takes a few weeks for soreness to go. Sometimes you will feel like the anus is still there and feel the urge to sit on the potty and go. But that is normal and the feeling passes. Good luck with your surgery and let us know how you are doing. Donna

I had my surgery nearly three weeks ago. Thought I would have my small intestine reattached to my anal canal, but just before surgery, I found out that they wouldn't be able to. So I went from having a bag for six weeks to a lifetime. Now, I have Gardner's Syndrome, not Ulcerative Colitis, but from what I've heard from others, you will feel so much better after the surgery. And after the pain goes away, of course. You'll be able to do all the things you could before surgery after you heal--I've got another three-ish weeks before I can run or lift, go back to work, etc. Hahah--although you'll have to take special precautions so your bag is taken care of.
I named my stoma Steve and frequently yell at him when he makes noises.
Some days will be better than others. I'm still learning things as I go, but feel free to ask anything. I'll be more than happy to help you if I can.

Hi Carol... though I would offer a few perspectives on this issue... I had ulcerative colitis off and on for 3 decades, finally after not having it for 10 years I had a severe attack 4 years ago and within 7 weeks I was hospitalized and 2 weeks later given the option to TRY Remicade etc or deal with the reality that my bowel was an ulcerative mess and should be removed. All of it was cut out, I was given an ileostomy with the idea that it could be later reconnected...after 16 months of indecision and research I decided to stay with the bag...living with the bag is NO big deal. Having decided not to reverse, I had my rectum and anus removed..it had more complications than healing from the colon removal as I developed a sinus and had to go back for some plastics...a standard day surgery procedure. SO here are some points that might be helpful.

1..Everyone's surgery experience is going to be UNIQUE...so don't get hung up on anyone's particular experience...it isn't fun but it isn't that bad either !!!!
2. Make absolute certain you are satisfied with the surgeon's credentials...you do not want a general surgeon, you want someone with a proven track record in performing ostomies successfully..don't be afraid to ask him hard questions.
3. You will be a heck of a lot better once you heal than suffering with colitis.
4. Decide whether you are going to get on with life...or permit yourself to be persecuted just because you have a bag on your side. It will make one hell of a difference the path you choose.
5. Ask your surgeon why it is necessary to have the ileostomy AND the rectum/anus removed all in one surgery... that's a lot of healing, and it will take several months..I would personally feel more comfortable seeing how well he did with setting up the stoma first, and if the surgery was successful. then let them finish the rest.
5. With a properly installed/functioning stoma...it doesn't take long to get used to it..and with an ileostomy there is no apparent reason to daily change bags...there was a recent poll on here about changing bags...I would suggest that this is a much bigger issue for those with a colostomy than with an ileostomy...their poo is more dehydrated, thicker, and retained much longer as it is not as liquid. I change base plate and bag every 7 days. Personally I think a lot of folks get "fixated" on the bag and overreact to it. Use your common sense and request samples from suppliers.
6. You do not want to get a bowel obstruction. so keep your foods real soft for several weeks..but get up and walk asap.
7. Don't expect the doctors know how you are going to fare...these operations are complicated, everyone's reaction is different...but give the team good HONEST feedback... both good and bad.
8. Your body will heal relative to your overall general health and your determination to push through the obstacles...stay cool and positive and before you know it you will have your life back !!! Best of luck..

Carol:

When you are in the doctor's office or hospital, ask if you could be trained in irrigation. I have had a colostomy for about 40 years and for all that time, I got up in the morning, had breakfast, filled my coffee cup, and retired to the john with my irrigation kit, coffee, and a good book. Twenty or 30 minutes later, I shower, put on a stoma cap. It doesn't leak or have problems unless I eat or drink the wrong things and works well 95% of the time. The 5% is usually my fault or a surprise new food or drink, and then I have to bag up!
Good luck and welcome to the life of an ostomate.

Thanks for the input! I have a surgeon who has done this 100 times and been successful. He is a five-star and is respected by the support group I am going to be going to in Colorado Springs, CO as soon as I am feeling much better. I am having it all done. I had UC in the rectum first and then it spread everywhere else. It is most chronic in the rectum so that and the anus need to go. I am having it all done pretty soon here. I have a positive attitude about this so that helps. I am sure I will adjust to the bag and have loving support from my husband. I will have to learn how to use the bag by trial and error, I suppose. I have suffered enough these past 7 years and really need this done now so I can get on with my life. I did have a choice to use Remicade but said no. I am tired of all these drugs.