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Old 01-18-2004, 06:20 PM   #1
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John325 HB User
Surgery Coming, very nervous

I went for a colonoscopy last fall and they found a large, stage 3 tumor growing in my rectum. I went for 28 radiation treatments and was on chemo 24/7 during that period. I now have the surgery coming up in 2 weeks, and I am very scared. The tumor is very close to my anus muscles, but the doctor thinks he should be able to reconnect. I will most likely have a temporary colostomy bag.

Any how, I am real anxious about the surgery, and that if I survive it I will be in alot of pain. I am also nervous about many of the complications that can occur. I was wondering if anyone has been through this, maybe you can address some of my concerns, thanks.

 
Old 01-18-2004, 10:39 PM   #2
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Kaye2003 HB User
Re: Surgery Coming, very nervous

I can't answer any of your questions, but I can tell you that you are not alone. My husband is also having surgery for rectal cancer in the near future, but will 90% end up with a permenant colostomy. I have found alot of information on Colostomy message boards that have been very information about the surgery, etc. Try Colostomy or Ostomy message boards in your search engine and you should find some help.
God bless and good luck.

 
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Old 01-19-2004, 08:25 AM   #3
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Re: Surgery Coming, very nervous

Quote:
Originally Posted by John325
I went for a colonoscopy last fall and they found a large, stage 3 tumor growing in my rectum. I went for 28 radiation treatments and was on chemo 24/7 during that period. I now have the surgery coming up in 2 weeks, and I am very scared. The tumor is very close to my anus muscles, but the doctor thinks he should be able to reconnect. I will most likely have a temporary colostomy bag.

Any how, I am real anxious about the surgery, and that if I survive it I will be in alot of pain. I am also nervous about many of the complications that can occur. I was wondering if anyone has been through this, maybe you can address some of my concerns, thanks.
My husband had surgery for rectal cancer back in May 2002. The tumor was very close to the anal verge, but the surgeon was able to save the anus. He had a temporary ileostomy for a few months that was reversed in September 2002. After his surgery, he was in ICU for a few days for monitoring. This is a really major surgery, so there is pain post-surgery, but he was on a lot of pain medicine and it seemed to be fairly well controlled, all things considered. My husband was 71 at the time of his surgery, a diabetic with high blood pressure and chronic renal failure. He came through the surgery just fine, so I'm sure you will too. He was in ICU for about four days, mainly because there was no regular room to release him to after two days in ICU. After about four days in a regular room, he was moved to the hospital's rehab facility to help him with walking and moving around. He had a stroke about two days before his surgery (complication of his HBP), but the surgeon was going to have him admitted to the rehab facility anyway and he discussed this with me before my husband had a stroke.
If you are having a loved one help you care for your ostomy, be sure to include that person in training for your ostomy care. Insist on having a certified ostomy nurse instruct you on ostomy care. Regular hospital staff is terrible at dealing with ostomies and they typically aren't well trained at all - many of them know nothing about them and can actually cause some harm. My husband's surgeon delayed reversing the ileostomy for awhile because of chemotherapy following surgery. The diarrhea was easier to deal with emptying into the bag than following the traditional route. One of the things no one told us was that there is sometimes trouble regaining bowel control after a reanastomosis. The colon that replaces the rectum has to be trained to act like a rectum again and the spincter has to be retrained after its "rest" while the bag is in use. There is an ostomy nurse at MD Anderson in Houston that has a fiber/diet regimen for retraining the bowels/rectum using psyllium (metamucil). This helped us a lot.
Please, I know it's normal to be anxious, but try not to worry too much. If my husband, with all his other problems could come through this surgery okay, then you should recover well.
Take Care

 
Old 01-19-2004, 11:00 AM   #4
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jaydees HB User
Re: Surgery Coming, very nervous

I had a rectal resection (removal of the rectum,anal verge and sphincter muscle)in May 2001 and now have a permanent colostomy. My cancer was on the verge(1.5 inches from the sphincter). The surgeon told me that even if they cut close margins around the tumour that they would be working so very close to the nerves in the region that regaining control of the sphincter might never be possible. I have re-learned how to go potty. If this happens to you keep in mind that when you first learned to use a toilet it took a few years so re-learning a new routine will also take some time(though this time your communication skills are better as are your hand-eye coordination skills). Be assured that you will get used to it and it will become second nature.

I had one surgical complication in that my right thigh muscles were paralyzed by the epidermal pain meds. Once that was removed it came back fine. Post surgery there have been few problems.

 
Old 01-19-2004, 12:54 PM   #5
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West Coast Girl HB User
Re: Surgery Coming, very nervous

I had surgery for rectal cancer last May. It was very low down and close to the anus. I expected to have a premanent colostomy but my surgeon decided (during surgery) that he might be able to save me from the colostomy. He removed the mass (it was very small and non-invasive) and the rectum and did a resection and gave me a temporary ileostomy. It was a 5 hour surgery. Unfortunately I developed some complications (mainly due to radiation treatment for cancer 30 years ago) that didn't allow for a reversal back to original plumbing. I had a premanent colostomy done at the end of November. This surgery took 2 hours. I had him leave in my anus, he just stapled it closed on the inside. I can honestly say I didn't have any pain after the first couple of days after surgery (well controlled by medication) for either surgery. I didn't find out for a couple of months that my rectum had been removed during the first surgery. I had absolutely no discomfort from this procedure. It is 8 weeks now since my colostomy surgery and I'm working out at the gym, running and feel great. The colostomy is not a big deal. Everyone is different and the body will react differently to surgery. I think being of positive mind and in good physical shape before surgery will help tremendously in how well your recovery goes.

Last edited by West Coast Girl; 01-19-2004 at 12:56 PM.

 
Old 01-19-2004, 02:20 PM   #6
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futuresurvivor HB User
Re: Surgery Coming, very nervous

I can't imagine how nervous you are. I didn't have to think about it because mine was emergency surgery. My colon had ruptured.
I was sedated for a colonoscopy and woke up in ICU with no idea what was going on. I almost passed out from the shock of stageIV c.c., the large cut and colostomy bag.
Honestly I was in more pain before than after surgery. I had a morphine pump (pretty good pain control). I was really sore though. I had to get up and walk the next day. Dr. said moving around helps the bowels to start working again. No solid food for a few days but I did get popcicles and soda after a couple of days. Keep posted on how you are doing. I will keep you in my prayers.

 
Old 01-20-2004, 09:20 AM   #7
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John325 HB User
Re: Surgery Coming, very nervous

Thank you all for your reassuring words. It really means alot to me. I think the worst part of this will be the waiting for it to happen. I have nightmares every night of being in the hospital, getting prepped for surgery etc... So it will be good when this is over. (The waiting) It really helps hearing from people who have gone through this before. Thank you again for taking the time to respond to me. I will hopefully be able to keep you updated once I get out of the hospital.

 
Old 01-20-2004, 09:32 AM   #8
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West Coast Girl HB User
Re: Surgery Coming, very nervous

John - Try not to worry too much about the hospital. You will be well taken care of. Your pain will be taken care of - ask for a morphine pump that you can control - and you will be up and around before you know it. I was up sitting in a chair the morning after my surgeries and showering by day 3. The body really is remarkable and heals so quickly. Enjoy the "rest" and let everyone pamper you!

 
Old 01-20-2004, 02:51 PM   #9
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Re: Surgery Coming, very nervous

I will keep you in my prayers, John.

 
Old 01-22-2004, 08:56 PM   #10
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jaydees HB User
Re: Surgery Coming, very nervous

Reading your post about the waiting took my back to the day of the surgery. It was so surreal to be walking in to the hospital. I was on auto-pilot sort of I suppose.

I certainly empathise John, let us know when you go in and as soon as you are back on the 'puter post here. You can help us in this way. Survivors need to hear from others who also are surviving, it helps knowing about those who are alive and thriving. I am, West Coast Girl is many others are and you will too. Hate to make it sound cultish , perhaps clique is a better description.

 
Old 04-17-2004, 10:55 PM   #11
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Smile Re: Surgery Coming, very nervous

Well I had the surgery and I survived!! It really took me a while to come back here and write, I have been avoiding thinking about it and I guess I have been avoiding coming back here to update on how it went. It was quite an experience, and hopefully the last time I get cancer. I went into Memorial Sloan Kettering for the surgery. It lasted 5 and 1/2 hours. Two of the complications come from me being a bit large, with a very narrow pelvis. They had trouble getting the tube for breathing down my throat. They also found another growth close to my prostate. They cut that out and I THINK ended any kind of sex life I may have had coming to me.

I am not bitter, I am really happy to be alive. I was amazed at how quickly my body adapted to the wounds it had, but also was a very uncomfortable week in the hospital. They had a catheter stuck up my urethra (sp?) that made me feel like I constantly had to urinate. They also had a drain stuck in me that made walking very uncomfortable. All came out before the week was up and I came home. I was quite weak for awhile. I love the internet, but I didnt even have the energy to surf for around a month.

I had an illeostomy done, its temporary. Well, about a week after I came home it started leaking. That was worse than being in the hospital. It leaked for about 10 days before the ostomy nurse, an angel , was able to figure out a way to stop the leakage. I had severe chemical burns over my entire side and stomach. Every time I saw a new ostomy nurse or doctor, they took a picture of the burns, as an example of how severe they were. I cringe to even think about it now, but the reason I am speaking about it is because as hopeless as I felt on day 9, when it stopped leaking on day 10 I felt like I had seen a miracle. She did such a good job that the bag only needs to be changed once a week.

I have begun follow up chemo. I am going for three months of treatments, and then the doctor will re-evaluate my case and decide whether I need an additional 3 months. The chemo is a story unto itself. I am taking the standard 5fu with the vitamin (again I cant spell big words, sounds like luke-a-vorin) plus a brand new chemo that was only approved last January. It is called oxaliplatin. I will follow up and get the correct spelling. In any case, the oxyplatinum costs 3 grand a bag. However, my insurance covers 80% so I am paying $600 bucks a treatment, of which I get two a month.

The side effects of this medicine are weird. I cannot drink anything cold for several days after the treatment, as it causes my throat to constrict. Very painful. I cannot touch anything cold as I get the most painful pins and needles you can imagine. The effects seem to be lasting longer and longer with each subsequent treatment, I suppose it is building up in my body.

All things considered I am in fairly good spirits, and really do have a positive outlook. Considering what I said about my sexual functioning no longer functioning. I have just turned 37, am single, and really feel that I did not explore that aspect of my life as fully as I would have liked to. So I have decided I am going to start learning as much as I can, I intend to return to school. I am unsure of what I will major in, but that is going to be the focus for myself.

I imagine that when the surgeon removed the second tumor near my prostrate that he probably severed some nerves that I would have really appreciated he didnt. So I dont know that a product like Viagra will be of any use to me. Be that as it may, as I said, I am going to focus on learning. I am happy to be alive, and I want to make up for what I have lost. I may be not explaining my motivations as well as I can, I suppose the best way is to just say I am taking all of that negative energy and turning it towards something positive for myself.

And I am happy to report that I did not flip out when I was brought into the O.R. I really did go on autopilot that morning, I think the anticipation of the surgery was worse than walking into the hospital the morning of the procedure. I am starting to blabber.

John

Last edited by John325; 04-17-2004 at 10:58 PM.

 
Old 04-18-2004, 04:13 AM   #12
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Re: Surgery Coming, very nervous

Hi John

Good to know you are on road to recovery. You have certainly been in the wars haven't you. My husband can empathise with you about the oxaliplatin/5fu. He is on his penultimate dose this weekend and is totally fed up with it all. He had now had a year of surgeries and chemo and radioT. It is such a long journey for you all. I wish you luck.

Ktee

 
Old 04-18-2004, 10:08 AM   #13
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West Coast Girl HB User
Re: Surgery Coming, very nervous

So nice to hear from you John! Your surgery sounds like it was fairly typical and you recovered very well. As for the skin issues I'm very surprised it took them that long to figure out how to stop the leakage. With so many excellent products on the market you shouldn't have had to go through that. Ileostomy discharge is so damaging to the skin so I hope you have don't have any more leaks. Most of the ostomy supply companies are more than willing to send out samples so you can find the perfect product that works for you. Also a good ET nurse is worth her weight in gold!

The chemo doesn't sound like a lot of fun but it has proved sucessful for so many people so just bear with it. In the future you will look back and realize what you went through was so worth it. About the sexual side of things, just remember everyone is different and the body heals in its' own time and way. I'm glad you're going do some research as the doctors don't always have all the answers. It's great you have such a good attitude so try to remain positive and visualize a healthy body and I'm sure you'll come through this with very little problem.

Keep us posted and I'll be pulling for you.

West Coast Girl

 
Old 04-19-2004, 10:05 PM   #14
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Smile Re: Surgery Coming, very nervous

Well thank you for the encouraging remarks, particularly regarding my libido. But for some reason it hasnt really got me down. I guess I am still on cruise control. As for the ostomy, I had a real case there. According to the ostomy nurses opinion, it was placed to far up, in lies right where my stomach creases, and also it wasnt sticking out far enough, the holes were lying flush with my skin. However it has, in the last month or so, popped out quite a bit thankfully, so that in combination with the products that are being used and the procedure that was used to fix the problem have saved the day. At one point, they were considering sending me back under the knife to repair the problem. Thankfully that didnt become neccessary. Thank you for all the support I have received on this journey.

As a side note, I have 3 more treatments left after tomorrow, (chemo) and then I will be re-evaluated. In the mean time, I am planning on taking a nice trip to Bermuda! I am so psyched! I just hope when I get back and get through with the tests they dont slate me for another 6 treatments. But I am looking too far ahead. Thanks for listening...

 
Old 04-29-2004, 11:47 AM   #15
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CancerDad HB User
Re: Surgery Coming, very nervous

John:

Sounds like everything went well-- you didn't mention your staging post-op... once they removed the nodes. Do you know if any nodes were positive. I am a 31 year old Stage 3C Rectal Cancer survivor-- 6/10 positive nodes... just had my ileostomy reversed after having it for 4 months while my rectum healed. I'm sorry you had to experience the severe burns from the ilieostomy-- totally un-necessary. I also had oxaliplatin/5FU/Leucovorin and radiation pre-op to shrink the tumor-- the oxaliplatin was horrible. I still have tingling in my fingers every now and again. I have 6 more months of chemo to go-- this round using Camptosar/5FU/Leucovorin.

I wanted to speak to the sexual aspect. I too, have difficulties-- and in addition catheterize to urinate every less than 6 hours. The urologist said it can take up to 2 years to realize whether there was serious damage to the nerves-- 2 years after chemo is completed. Sometimes the blood vessels to the penis get affected by the radiation too. He told me my body is still under assault, and that erectile function is one of the first to go. He gave me a bunch of samples-- Viagra, Levitra, Cialis... haven't tried them all yet, but the Cialis did nothing. My point-- don't get discouraged (I'm doing my best not to!)... and talk openly with your surgeon/or urologist. I was also told that even if nerves were severed/damaged and don't heal, there are injections available to address this problem (not that this sounds like a pleasant alternative!!!). But, as you said-- I'm happy to be alive. Please let me know if you find out anything additional.

Have fun in Bermuda! My wife and I love it there. It's our favorite island even out of all the Carribean! I glad things went well for you.

 
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