Colostomy surgery.

[Tanya]

Hi to everyone. After few month my cancer back.
So , my colostomy surgery ( permanent ) schedule for January 27. I am scared and frustrated.
To what I need to be prepare? What to expect?
What to take to the hospital ? Haw long for full recovery?
Maybe some one can help.
Thanks

[jhocno197]

I'm sorry your cancer is back.

It took my husband several weeks to recover. It takes some getting used to it, but the colostomy has not been that bad.

[Sams wife]

That does suck
I think everyone was right when they said to wear the hospital clothes. Hubby used one on front & one on his back. He had a drain coming from his belly. Not sure if you will tho. IVs coming from his arm. It's way better to mess their stuff up. And easier to get in & out of.

I brought an extension cord for his phone charger. I'm sure he would have wanted me to leave his phone at home tho. he just wanted to sleep. But you won't want to get up to get your phone.

I think after a month my husband started having more pain & drainage from the incision. He ended up on antibiotics 2 times. But I think we were lucky. Could have been worse.
I was hoping you were done with this stuff!
I guess it is better they found it now.

[Sams wife]

Take some change or snacks for hubby & kids!

[cmewrrie]

I am so sorry you find yourself in this situation. BUTT at least your docs are on top of it and caught the recurrence quickly and are being aggressive with treatment.

As for the surgery and recovery, I won't sugar coat it, for my husband it has been a long slow recovery...however he has been having chemotherapy so that does delay healing and has its own side effects that impact the ability to cope.

For the hospital, I second the extra long phone charger idea...if you are well medicated you very well may be comfortable enough to get "bored" when not sleeping. (DH was and the long cord allowed the phone to stay on the charger and lying on his bed for easy access).

Walk, Walk, Walk, as much as you can and as soon as your doctor allows...this will speed up your bowels "waking up" which is your ticket out of the hospital. Our nurses didn't stay on top of this with my husband so I had to push him to do short walks whenever I was there visiting.

The colostomy is a big adjustment but get in touch with a good ostomy nurse to choose the best placement and to advise on taking care of it and using the appliances...this was a great resource for us.

if the type/brand of wafer/pouch doesn't work for you, you can get online or call all of the manufacturers who are more than happy to send you samples of various thiings to try. We literally tried dozens before finding what worked....everyone we talked to was very very helpful.

If you can arrange to have a home nurse visit a few times after you go home, that would be good as well...our home nurse was a life line in those early days, answering questions and re-assuring DH as well as advocating for DH if/when his medical team wasn't responsive.

Best wishes to you. Lots and lots of great advice and support here...this board has been a life saver throughout all of this for us!

[shade]

Sorry you have a recurrence, but hopefully you can rebound.

If I were going to get a permanent colostomy, I would want to have a long talk about options regarding where it will go. Specifically above or below the waist band of your pants or skirt. An inch higher or lower may be very important, even if it doesn't seem like much. Have them hold a bag over where they plan to put the ostomy, and then try to button your pants. In other words, ask them to explain your placement options, and be sure to have some there who will advocate for your best interests. Maybe there are some ostomates here who have advice. My temp iliostomy was in just the right place, fortunately.

Good luck, I hope all goes well for you...

[Lydia666]

Hey Tanya,
A stoma sucks but remember this is your best option to cure. What you had before (chemo/rad) is rarely curative. I have an ileo which is worse than what you will have and it's been 3 months already. We adjust and luckily it is highly invisible, you can feel and be normal.

I don't have advice for the hospital- is it going to be a laparoscopic surgery? If so, you would only be in the hospital for a few days and within 2 weeks you are just fine!
Keep us posted and remember you are doing it to have a long life!

[LB10]

Hi Tanya,
I'm am sorry. I know you are going through a really difficult time right now. The unknown is so hard to deal with. I had my APR surgery one year ago at MSKCC. Take comfort in knowing that you are in the best of hands. The idea of living with a permanent colostomy can be overwhelming. I was beside myself with grief and anxiety before my surgery even though I knew it's what I had to do for the hope of a cure. i wish I could go back in time and tell myself to ease up it will be ok, because it really is. Don't underestimate the immense relief you will feel at knowing the cancer is out of you. Life with an ostomy is more than doable. It's a good life. I can do everything I did before, no limits. It's a small inconvenience, really that's all.
They have fantastic ostomy nurses at MSKCC. They will examine you and help determine the best place for the ostomy. After surgery they will be there to teach and support you. You may have already met with them. Have they talked to you about irrigation? They are very supportive of it and for me knowing it was an option helped me to cope in those early days. I started irrigating 3 months after my surgery. I irrigate once a day. It takes me about 45 min to an hour. Then I just slap on a stoma cap and forget about it until the next day. I don't have to deal with bags or leaks. Just something to keep in mind and read up on for the future. The UOAA website is a great source of info and has a forum filled with very helpful ostomates. Usually with better info and ideas than even medical staff.
This is a big operation and recovery is long. It was a good 2-3 months before I was back to any kind of normal routine. Just be patient with yourself. It's the backside that seems to take the longest to heal. You won't be able to sit properly for about 4 weeks.
For the hospital I was happy to have with me, my phone loaded with relaxing music and headphones. Helpful in blocking out any noise from roommates so I could sleep. A robe and slippers for all that walking you will be doing. They tell you to bring larger underwear with you, as you will be swollen. I found it better to use the dispossible stretchy underwear that they provided. More comfortable and no worries about my husband having to do laundry.
Sending you prayers and wishing you all the best. Feel free to ask anything.

[Tanya]

Thanks , itis very important to me , thanks for advice and sharing your story with me. Thanks to all.

[LB10]

Tanya, I sent you a pm.

[LB10]

Tanya,
Thinking of you. Sending you prayers for courage, strength and healing. Good luck tomorrow. Please let us know how you are doing when you are able.

Lisa

[Sams wife]

Wow. It's been a week already!!? Good luck!

[Tanya]

Thanks.
Doctor call me and said my potology report itis not complete yet but something it not understandable , they told him they not shure but itis look like second cancer not recurrence .
The pain it so unbelievable, sometimes I thing I want to die, but next minute my kids give me a hope .Oxycodone 20 mg every 3-4 hours don't work. So they give me hydromorphone 4 mg but it is not better.
Sometimes I don't believe, live can be without pain...,

[jhocno197]

I am so sorry...

Do they not give you extended release pain medication? They have my husband taking extended release morphine every 12 hours, and he also takes hydrocodone as needed for breakthrough pain. You should definitely ask your doctor!

[LB10]

Keep telling your doctors that you are still in pain until they find the medication or combination of meds that work for you. You should not have to suffer.
Interesting about the pathology report. I don't know anything, but could that be good news? Meaning that your cancer isn't as aggressive as thought?