Any one have Colectomy for Cancer near rectum?

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Trigirl
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Date Joined Jan 2006
Total Posts : 768
   Posted 4/5/2009 7:54 PM (GMT -7)   
My GI has found some pre-cancer cells. He said we could monitor it or go for surgery. Then he had me see the surgeon whowants to take out my whole colon and I'll have bag. I am not ready for it yet. My 4 year flare subsided when I went off all medications (after trying remicade,imuran, methotrexate, abs- whatever and some I can't even remember. So life isn't too bad at the moment and I should go get it all taken out? I think I want to just check regularly and then if the cells progress I will do it.

After reading what you all wrote to the other person going for pre-op surgery appointment I thought your comments were supportive and amazing. My surgeon was rude and just wanted to cut and paste. Who's to say the crohn's doesn't comeback and I don't have any options then.

It seems like most people here have had the surgery due to massive pain and no quality of life and no med. working. It that a good presumption? So my question is who has had the surgery for cancer problems. How far along was the cancer? Was it in time and a success? Anyone wait too long and have it in other organs also?

This is the biggest,most traumatic, decision of my life, just like some of you have indicated. Some one said, they "knew in the gut it was right". So if I don't feel that way I hope I am OK for now?!?

Any comments, suggestions and ideas?

flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 4/7/2009 5:35 PM (GMT -7)   

There is a woman on here named BadBagGirl who had surgery after being diagnosed with rectal cancer. Hopefully, she'll see this post and will reply. You might check to see if she has an email listed with her profile.

Personally, I wouldn't want to mess with pre-cancerous cells, especially since having an ostomy, in my opinion, is not a big deal. Nobody can tell that you have one, since it's completely hidden under your clothes.

Just today at work, I heard of a 47 year old woman who is going through chemo and radiation for rectal cancer, and she had Crohn's for years leading up to it. She is miserable and might not even survive, and I hate the thought of anyone going through that when surgery could have prevented it.

My surgeon did not have the best bedside manner either and was very matter-of-fact that my colon needed to be removed. It was shocking to hear at first, but I do believe that they know what they're talking about and have our best interest in mind, even though it doesn't seem like it at the time.

There comes a time when you have to throw vanity out the window and do what is necessary to save your life. We've all been there and understand the difficult decision you have to make. I think you'll find that most of us are very happy with our decision to have surgery and are here to help ease your fears. Please ask any questions you may have, and we'll do our best to answer. :-)


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


flchurchlady
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Date Joined Jul 2007
Total Posts : 2765
   Posted 4/7/2009 5:51 PM (GMT -7)   
BadBagGirl does have an email listed with her profile, so I just emailed her and asked her to check out this post. Hopefully, she'll be stopping by soon!

Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 4/7/2009 8:23 PM (GMT -7)   
Ceclia,
Thanks so much for replying. So you have weathered it all well? Disease and medicine free is a big deal.
Are there clothes you can't wear? Have you ever had problems with stoma area or bags coming unsealed? Really I have a million questions and just can't get my head wrapped around all this. Were you really sick when you had the ileostomy?
I guess maybe there is an element of vanity I have to deal with,but I have spent my whole life with body image issues and now I'm going to compound them?!? You think having the ostomy is no big deal? I guess I still need to get there. I saw my GP today and he had just read the letter from the surgeon and he thinks I should just do it. This may sound crazy but I feel I will lose myself more than I already have to disease and where will my hope for a better life go?
Thanks so much for looking into the other person. That was above and beyond, going the extra mile. I truly appreciate it. It's good all the people feeling well don't leave or we would drown in not see light at the end of the tunnel.

Equestrian Mom
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Date Joined Mar 2008
Total Posts : 3115
   Posted 4/8/2009 4:30 AM (GMT -7)   
Trigirl, you have a big decision to make...I personally agree with Cecilia.  I also have Crohn's (20+ years), was on many meds, had many surgeries and felt terrible for too many years.  I did have a temporary ileo for surgery complications and had is reversed once...then after more time in pain/suffering I asked for another!  I live with that loop ileo for about 8 years:) but was still on meds, but felt good!  In 2007 I decided I had had enough of my fistulas/rectal problems and I didn't think my meds were as effective as they had once been, so I had a proctocolectomy...I really wasn't "sick" so to speak when I had it done, I was "pro-active" to the other problems I could have down the road (cancer). 
 
I wear all the same clothes and have a much better quality of life!  Maybe you could talk to someone in person who has been living with an ileo...ask your doc's office, I'm sure they have people who volunteer to do that...my doc does.  BTW, once I got the hang of the appliance, I forget I have it...seriously...
 
here's a good link:  www.uoaa.org to get a little more info...good luck with your decision!

Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 4/8/2009 9:06 AM (GMT -7)   
After reading some posts on problems with stoma and bags falling off you comments are comforting OHIO. Thanks for the help.

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 4/8/2009 1:19 PM (GMT -7)   
Hello Trigirl,
I have been reading the responses you have been receiving about your post and thought that I would chime in on this one.  I was diagnosed with CD at 17, had several resections/loop ileostomy but the CD kept coming back with a vengence.  Finally at age 23 I had my final surgery - a perm ileostomy (removed colon, part of small intestine and rectum).  It wasn't what I would have chosen however,  I have been disease free since.  What a blessing! 
 
Now, I will have to tell you that back in 1984 when I had my final surgery performed, there was not easy access to information and the internet and forums like there is now.  I have to fess up and tell you that I had a rough time wrapping my brain around it all UNTIL I finally met an ileostomate IN PERSON.  She was a young mother of 2, worked full time, married, happy, living her life.  That was the turning point for me.  That was about 2-3 weeks post surgery.  We are so fortunate to have access to all the information that we do at our fingertips, literally. 
 
Like Ohio said, I do honestly forget that I have my bag now.  I don't even hesitate to do anything I want to do.   I worked full time from pre surgery (1982) through being so incredibly sick and in pain from the CD, took some time off for surgery and then went back to work full time until 2001, when I had the opportunity to work part time.  But that was a life choice for me, not something I was forced into because of having my ostomy.
 
Well, I've ended up writing a book.   Sorry if I've rambled a bit, but I feel that some of our "life" stories can be so beneficial to those who are contemplating surgery or are recovering from surgery.
 
 
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/8/2009 5:55 PM (GMT -7)   

Thanks for your reply! I'm happy to help in any way I can. To answer your questions, there really aren't any clothes I can't wear. I live in Florida and thought that bikinis were going to be off limit, but much to my surprise, I found a two piece that works! It's a bikini top with a skirt bottom.

I'm happy to say that in the last 3 years that I've had an ileostomy, I've never had any problems with the stoma area or with bags coming unsealed. There are a lot of products out there, and sometimes it's just trial and error to find the right one for you. I got lucky and have used the same one my Ostomy Nurse recommended in the hospital.

I didn't think I was that sick when I got the ileostomy, but then again, after 7 years with Crohn's, I had forgotten what it was like to be well. The disease was causing fistulas and abscesses in my butt area that were very painful, so I started out with a temporary ileostomy to bypass the colon and rectum, so the abscess wounds could heal.

Before I had surgery, I thought that having an ostomy was going to be a big deal, but once I had one, it surprisingly wasn't. It gave me a freedom that I hadn't known in years. It's so flat and unnoticeable under my clothes that I truly forget it's there. 

Your hope for a better life is in beating this disease, and the best way to beat it is to take away the place it wants to attack. You can live a completely healthy and happy life without a colon, and once you're healthy, the sky's the limit on what you can do!

That was great advice that the other ladies gave you about meeting someone with an ostomy, so you can see for yourself how unnoticeable it is. I told my surgeon to call me if they ever have a patient who is scared (like I was) and wants to talk or meet in person. I had never met an ostomate before I had surgery, and I think it would have really helped ease my fears had I done that first. I also wish I would have known about this site, because it would have helped immensely, as well.

If you want to see pictures of us, we have a site at www.photobucket.com user name: crohnsdisease / password: 6mp3asa

Feel free to upload a picture of yourself, too! :-)


Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


Trigirl
Veteran Member


Date Joined Jan 2006
Total Posts : 768
   Posted 4/8/2009 9:16 PM (GMT -7)   
I went to photobucket and saw all the 185 pictures on there. I will have to put one up one day. I don't know much about computers so maybe my boys will help me. You had a nice picture and it was good to put a face to the name!! Alright I'll talk to someone that's had one and see what they say. After Easter, on Mon. I have a Gi appointment and hopefully see where the health is headed. If it's getting worse then it's out but would love to wait until fall. that may be crazy dreamer talking. Happy holiday.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 4/9/2009 6:20 AM (GMT -7)   
Here's a reply from someone who survived rectal cancer 10 years ago. I had a temporary colostomy but it was reversed 2 months later. That is when all my "fun" began.....and is still going on. I have to eat a very plain diet, time when and how much I do eat and reduce my stress level as much as possible. All in all, I manage but I spend hours per day in the bathroom. At least 2 if I were to total the amount of time I'm in there for each bm (multiple, 10, 12, sometimes more than 15 times, spaced out thru-out my entire day, as long as I continue eating).

As I was awaiting my first surgery for cancer my surgeon kept saying it would turn my world completely upside down. He was right, it has. He also said that 20 years prior to 1999, I would have been given a permanent colostomy, without discussion. Implying that colon resections had become so advanced, it was possible and a miracle I could be put back together and not need an ostomy (long run).

Well, there have been many days when I think having a permanent colostomy would be so much easier than the situation I am in now! But now we have lousy medical insurance, I do not want any more surgery, avoid it like the plague actually and I am just making the best of this situation I find myself in.

I could eat a lot more foods when I was on my ostomy diet than I can now.

Having a colostomy isn't the end of the world. Perhaps one day I will permit my current colon surgeon (my original surgeon left his practice and moved several states away) to do what she thinks would greatly improve my life - give me an inverted colostomy as low as possible, one that I would irrigate (fancy way of saying giving yourself an enema each day) once a day. Irrigating takes 1 to 2 hours per day and the rest of that 24 hour period you wear a large bandaid over the stoma, called an AM Patch. This type of inverted colostomy only works if you have most of your large intestine still. She swears this would simplify my life. But I'm not buying that - yet. In time, maybe I'll give it some consideration but things would definitely have to improve with the economy, our insurance coverage would have to return to what we had in 1999, and our daughters would have to be out of college.

For now, I put up with a lot of stool coming out, all day long. I can slow it down by eating very, very light and following the LRD.

But I am here to say knowing all I know now, 10 years later, if I were sitting here typing with a permanent colostomy it wouldn't be a devastating thing and one that could actually be managed quite well.

I do wish you luck in this decision. It is not an easy one but in time, you'll know what is best for your situation.
Marsky/Mary's story.....
- Diagnosed with rectal cancer, April 1999 - Stage I, no treatment necessary
(5 hour colon resection: 90% sigmoid removed, 15 inches of colon removed, gall bladder removed, given temporary colostomy)
- Colostomy reversal, June 1999
- Left with IBS/D symptoms, multiple bm's every day
- On a low residue diet at least 75% of the time
- Takes Colace 50 mg each evening

All in all I do okay, I just use the bathroom A LOT! But I survived and beat cancer!


hulston
New Member


Date Joined Apr 2009
Total Posts : 5
   Posted 4/10/2009 8:54 PM (GMT -7)   

I was diagnosed w/stg 4 colorectal cancer in 2002. Had a rectal resection/full hysterectomy/upperleft lobe lung removed/appendectomy/temp ileostomy.

4 months later ileo changed to colostomy. I  am fine with the colostomy. I wear swimsuits with the skirt also. People don't even realize i have one. I don't have to run to the bathroom. I may have surgery soon to remove my rectal stump that is causing me problems. I possibly could be reconnected... but If am offered to reconnect I'm not going to. I'm fine with my colostomy.... I know it is hard to make a decision to have surgery.

 

wink yeah


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/11/2009 4:32 AM (GMT -7)   
Hulston,
I know what you mean about not wanting to be reconnected. After what I went through with Crohn's and the 20+ bathroom trips per day, I wouldn't do it either (even if I could). I love not having the 'urge' to go anymore. It's so liberating! Going to the bathroom the conventional way is, in my honest opinion, way overrated. I'm glad that you and Mary are cancer-free! :-)
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 4/11/2009 7:14 AM (GMT -7)   
Hi Trigirl!

I have been out of town for quite some time. Sorry it took so long to post.

I know how hard it is to make the choice. Through my personal experience, I would have rather had my ostomy surgery BEFORE developing full blown anal/rectal cancer in which I was SO sick and down to 78 pounds. It was then, they stopped the chemo (I could not stand to lose anymore weight) and just went ahead with the surgery that I was told I needed 8 years before hand. And now it is permanent, which may have not been the case before. While I don't necessarily love having a bag, nor did cure the Crohn's for me, or did it stop abscesses, it did save my life. But I do feel better than I did so I guess I was lucky. My brother-in-law died of it. It's been almost 2 years for me ... cancer free and with very little chance of it returning. I would not wish for the pain of the cancer on anyone.

I wish you the best. Feel free to email me!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.

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