Help! Surgery in 5 Days!

[Elizabeth1984]

Ok, I'm 23 years old and I was diagnosed with rectal cancer in January of this year. I've already been through 5 weeks of chemo and radiation which concluded 5 weeks ago to prep me for surgery. My surgery is for April 17 and I'm a pretty nervous. I've been told that I'll have a temporary ileostomy for about 6 months. I've heard terrible stories about these and have no idea how I'm going to cope with it. My incision will be near my "hair line". Has anyone else had a similar procedure or know anything that may make my life easier over the next few months? Thanks in advance!

[sean]

I'm a colon boy, so I can just give general advice that you may know already. This is just stuff I was glad I did or wished I knew about before surgery. I didn't know I had cancer until pathology.

Even though surgery is close make sure you have a very experienced surgeon for the procedure you are getting. I had a surgeon picked and due to scheduling conflicts the practice scheduled me with a different surgeon a day or two before the operation.

With very little research on the state licensing board site I concluded that I did not feel comfortable with the time the replacement surgeon had practiced nor the recent above average malpractice claim filed against him. I called back and said I did not want the new surgeon and would wait for the doctor I wanted. He made room for me for a 5 pm surgery - it was weird to see the entire ER prep area empty. Any time my surgeon's name comes up with any doctor, nurse, or testing facility people always mention how exceptional he is. I am very glad I stood my ground.

Find out everything you can about your surgeon if you haven't already. It is a very important decision.

I'd ask for a pre surgical CEA blood test if there hasn't been one already. Its good for peace of mind later.

Good luck with the surgery and always make sure press the little button a few times before you get up from the hospital bed.

[cmg]

Elizabeth, my mom went through the same ordeal. The chemo and radiation shrunk her tumor, but was too low to save her colon. She is now finished with post-op chemo and trying to process and cope . My advice: Don't speculate. Take it one day at a time. Be patient with yourself. After surgery, give yourself time to heal. See if you can get the bed by the window in the hospital Bring clorox wipes to wipe the phone and clicker. You don't know what kind of germs were there before you!

[leigh_leigh]

hi there im a 28 yo male with stage 3 rectal cancer i am going in for my sugery on the 23 of april ( not to long after you) i will be having colstomy not sure whether it will be permanant or tempory because they will not be able to tell till the have seen the tumor first hand.
But what i am writting to ask is have you seen anyone from the hospital or your surgeon who has explained excatly what will happen with the bag and all other aspects of the operation.
the reason i am saying this is i was quite nervous too about the whole thing to tell you the truth I stll am , but the hospital called me up a few weeks ago and made an appointment to come in one day and i saw the surgeon, anithesist, stoma nurse, physiotherapist basically everyone that will be involved in the operation and recovery aspect of my surgery i found it a great help.
If you are worried about any aspect of the surgery contact the hospital and im sure they can make an apointment with someone in that area who can help answer any questions you might have, if the hospital cant help maybe you surgeon can get you in contact with someone who can.

I wish you all the best in your upcoming surgery and a speedy recovery

Leigh xxx

[Tammy Figg]

I am a 31 year old, diagnosed at 27 with Stage 3 Rectal Cancer. I had the illeostomy. I think the hard part is mental, looking at the fact you have a bag. There are so many styles to choose from. I would recommend the pop on and off device. Easy to clean and they last longer. Also avoiding certain foods, as I had two blockages due to food I ate. I had the illeostomy for 3 months and had it reversed.
If you are having your rectum removed, and you have the bag and have it reversed expect that you will go often as a new way of life.
I would be happy to help on any questions you have.

Tammy
figgtree@hotmail.com

[Loopy369]

Just to join in, I'm also stage 3b rectal - expecting op date any time soon to be end of May, beginning of June so will be watching the boards for your posts!

I am in UK but immediately after my diagnosis consultation I went for a coffee, then came back to the ward to chat to the colorectal nurses who've I called a few times since. She explained everything that would happen, that I would be measured and marked up before hand but that I could have a dummy bag to practice with at home to see where would be best for the clothes I wear. They'll be marking me on both sides dependent on what they find too leigh.

I'll obviously have a chance to go over it all again nearer the time but I've done a lot of reading and just want to get on with it now!

[Lifes2short]

I had surgery for rectal cancer a year ago. It was a big surgery, but not horrible. They were not able to save my sphincter so I have a permanent colostomy. Though I'd rather have the old plumbing, this isn't horrible. I live with it and do all the things I've always done - ski, swim, run, hike, travel. Check out www.uoaa.org for some great info on ostomies. Make sure you meet with an ostomy nurse before surgery to determine the best place to put it.

I was in the hospital for eight days. I had a birhtday party for my son just a couple days after I got home. I was tired and had to rest a fair amount for the first month. But I recovered well.

You will likely have a large incision in your rectum and one in your abdomen. You will also likely have one or two drains, and your ostomy. I felt pretty carved up at the time, but everything healed.

My biggest problem was pain. I have a high opiod tolerance and came out of surgery screaming. They ended up doing an epidural on me. I would recommend talking to your surgeon about pain control and asking if they would consider an epidural - it certainly saved me.

You will likely end up in the cancer ward for post surgical recovery, so you won't likely have to worry much about germs or catching anything.

My surgery was at the end of March. By late May I was camping with my kids. By summer I was swimming and traveling and living normally. Just take it one step at a time and be kind to yourself. You are young, you will likely recover quickly.

Best of luck to you!

[MissKim]

Due to a sigmoid colon blockage (the cc), 5 emergency surgeries, and sepsis, I had no preparation for what an ileostomy would be like. I woke up three weeks later from a medically induced coma with the bag.

The truth is, I wasn't even freaked out about it (having an ileostomy). I just thought, okay -- I will learn to deal with this. Maybe I was on too many pain medications .

After I woke up, I wish the doctors & nurses would have told me that I would have phantom sensations "to go" and that early on I would discharge a lot of mucus from my rectum. Large amounts or mucus that would just whoosh out of me. But the phantom sensations subsided and the mucus stopped too.

I am happy to report that I lead a pretty normal life with an ileostomy. I could have mine reversed, but I would need to be NED for a longer period of time than I have been. I waterski, swim, snowski, jump on the tramp with the kids, etc.

I would make sure that you find a wound care nurse to help you with any questions you may have. I have a great wound care nurse here at our local hospital. I also like the 2-piece appliance system. The stoma paste and stoma powder also helps with alleviate skin irritation.

Miss Kim

[shel28]

Hey, I am having rectal cancer surgery on April 17th as well. I'm pretty nervous but my Dr. is excellent so I think it will go just fine. I have a 50:50 chance of having a temporary ileostomy. I got markings put on today just in case. Not looking forward to that but I should only have mine for 6-8 weeks.

[hopeful]

i am looking at a new treatment plan you may also look into it if you are as scared as i am about what may happen in the future.

www.immunotherapycancer.org take a look and decide for yourself

[sean]

I would suggest an in depth talk with your treating oncologist if you are taking any conventional medications (especially chemo) before adding any herbals, extracts, or other natural therapies. Natural and perfectly healthy substances can interact with prescription medications in unexpected ways. Here's a perfect example:

http://www.medicinenet.com/script/main/ ... ekey=14760

I want the proven drugs to work for me, so even though I enjoy both herbal teas & grapefruit juice, I have stayed away from them during chemo just in case. I've never been into herbal or natural supplements, but I've had a relation suggest some since my dx. In my opinion chemo & nausea control is a delicately balanced chemical soup & I don't want to risk undoing that balance.

I also avoid natural supplements (think GNC) because as far as I know they are not regulated by the FDA and don't have to go through the rigorous testing that drugs do. I am sure that many unregulated natural substances are safe & perhaps beneficial. I'd also wager that some are just scams or even harmful.

Cancer is a large class of separate diseases. The drugs that work for best for one cancer don't work for another. Cancer patients are an easy target for snake oil - I'd be very skeptical of anyone claiming to have a natural treatment for "cancer" - especially a blanket cure for any kind of cancer. Fear is natural and may cloud your judgment. Please do your research before moving to alternative therapies. You have real people here staying NED with conventional medicine who have the same disease you do - not unverifiable "success stories". No matter what you decide, I wish you the best of luck.

[Frank G]

All you have to do is look at the disclaimor that is at the bottom of the web page and almost unreadable and you begin to suspest spam from a snake oil salesmen.

I have really begun to resent the hit and run artist who's first post is about a miracle treatment and as soon as they are engaged they disapear.

[holycow101]

As a Stage IIIb colorectal cancer survivor, I'm seeing lots of great advise on this page. While my surgeon was one of the best, we didn't mark the area where he was going to put my colostomy and it's about 1/2 inch too close to my navel which makes putting the wafer on a challenge. My friend was able to have an illeostomy and he was reattached in February. Our families just returned from a vacation in Mexico together. It will be a year before he's anywhere near close to normal he's told but he's already back with his cycling team riding again. He looks great. I still am having pain issues due to the amount of radiation I had to have but I wasn't fortunate enough to have the radiation and chemo before the surgery as so many doctors are doing now. Try not to let the bag freak you out. It's not a big deal. Mine is permanent (I'm told) and I'm sure a heck of a lot cleaner than somebody who has to wipe their hairy butt with toilet tissue. Sorry to be so graphic but it's true. I can swim, ride bike, hike, run, and do anything but lift weights olympic style. Hang in there. Don't let fear get the best of you. I think it's great that one person said he postponed his surgery to get the surgeon he wanted. Now that's empowerment! Bravo to all of you who are driving your own medical decisions with sound research and advise, so much of it right on this page.

[pjpeace]

First of all...congratulations to all of you who will be having your up coming surger especially if you had chemo to shrink your tumors. To have the chemo work to get you this far you should all be conratulationg your selves.

OK get a cough doggie! One of those big floppy TY doggies. Trust me...after two surgies I LOVE my cough doggie and buy one for anyone who has any kind of ab/lower belly surgery! Pillows are ok but these seem to fit pretty well

Put a dinning room chair by your bed so when you get home you have something to pull yourself out of bed with. I had one of those wedgie pillows that really helped too so it didn't hurt so much getting out of bed.

Hopefully by this point you have already checked out the surgeon/place where you get it done. It does make a difference. but what matters if you feel confident with them. Ask as many questions before hand so you are completely preparied when you come to.

Surgery is scary but at the same time you have made it this far in your battle!

I had flushable wipes too with me since you don't know when you can start showering again and all that stuff.

Best of luck to you all! Let us all know how you guys are doing when you can! Be patient with your recoveries it knocks the tar out of you for awhile but you will see yourself improving a little bit each and every day.