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lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/17/2008 12:43 PM (GMT -6)   
New member here.....have a temporary illeostomy due to rectal cancer. Have been reading lots of posts but haven't seen one with anyone with rectal cancer. Guess it doesn't matter much. You all have me scared for the revearsal.....all the "D"!!! Had MAJOR problems after the initial surgery and ended up hospitalized again for an infection. Now on chemo which is doing wonders for my digestive system.....NOT! I feel like I'm wearing a bag of milk sometimes. I know that life can be normal but it is a big adjustment. Am worried that after the revearsal that control will be a big issue as well.  Am also having stoma pain....anyone have any answers about that? It bleeds (very little) and is darker red. I think because they knew it would be reversed, they didn't bother too much about placement, and it falls on my waistline where I wear my clothing. Could this be the reason?

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 6/17/2008 3:34 PM (GMT -6)   
Hi Lacey,

I had rectal cancer and have a permanent colostomy. If you just had the surgery, it's normal to have pain around the stoma (I think ... I did). Mine was placed close to my waist line too, and after a year, it still has problems. Like my pants fit below it and push up on it sometimes causing the flange to cut into the stoma but it's too high to wear pants above it unless I wore them right under my bust and really look dorky. So I wear pretty low riding pants. But I am so happy to be past the chemo and radiation! I just wish I could have it reversed. Good luck to you. Oh, and stomas do bleed a little - that is normal. I DO know that!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/17/2008 4:30 PM (GMT -6)   

Crohn's and cancer?! Yikes you got dealt a bad hand.

I totally agree about the pant thing.....cannot possibly wear them high but too low I'm worried the bag might show if my shirt rides up. I was originally told I would have a permanent illeostomy, but after later consultation with a specialist, she said she will be able to reverse it.

What kind of chemo did you have? The one I am having has awful side effects....can't drink anything cold, touch anything cold.....awful. Did your hair fall out? Have had 3 treatments so far and some hair thinning.


badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 6/17/2008 5:12 PM (GMT -6)   
They stopped the chemo after the 4th treatment, and went straight to surgery. I lost WAY too much weight. The chemo made me sick (and I don't know what kind - it was a BLUR). I am very small but getting down to 70 pounds they were worried. Couldn't hold anything down and having Crohn's what did go down went out ASAP and that area being cancerous and very sore was too much to take. But they said I wouldn't lose as much hair as most chemos. I have a friend who has only been on hers for 1 treatment for ovarian and lost her right away. Most of what they give for anal/rectal cancer don't involve losing all of your hair. I guess the good news is, they are pretty sure they got it all. Just still having a hard time adjusting to this all even after more than a year. I hope and pray yours is as successful!!!!!!!!!!!! What are they telling you about it?

I wear 'Assets' (Spanx at Target) briefs to hold the bag in place and smooth it out. Then I wear boys A shirts (aka 'wife beaters') that I tuck in my pants. Then if my shirt rides up it doesn't show, and I admit, I feel pretty good being lightly 'packed' in a little without being squished.

Here's what I am talking about (they really are comfortable!):
http://www.target.com/gp/detail.html/sr=/qid=/ref=br_1_br_1_15/601-3670119-1942513?ie=UTF8&node=110197011&frombrowse=1&asin=B0012GRTYQ&rh=&page=1
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/17/2008 8:55 PM (GMT -6)   
70 lbs? Yikes. Hope you are back to a normal weight. It has been a year for you? Feels like a lifetime for me. I had radiation/chemo daily for six weeks, then surgery, and now I'm on the next bunch of chemo.
Worry about the bag being squished as I have leaking issues, so not too sure about trying out tight undies. Am still figuring out what works. I do tend to wear a camisole under stuff, but the weather will be getting hot and bringing the kids to the beach etc might be too sweaty! The whole bathing suit thing won't be an issue as I still have the picc line and I'm not allowed to get it wet. Also, the cold thing with the fingers and toes...VERY painful if they get cold...can't imagine going in the water.
Awful to hear that it is a year for you and you are still adjusting. Wish they had a better way to fix these things....they put pig valves in your heart, for crying out loud, why can't they figure out a way to replace a rectum without the bags?

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 6/18/2008 10:29 AM (GMT -6)   
Lacey, how much more chemo do you have to go through and when do they think they are going to do the reversal? Do they think that you will be cancer free? I had 6 weeks of radiation too. My skin was BLACK afterwards! Yes, I am back to normal weight. And most of the time feel ok. I just have some of 'those' days now and then. And fortunately I haven't had very many leaks although I have had a couple of EXPLOSIONS :-).

Good luck through the chemo!!!!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 6/18/2008 1:17 PM (GMT -6)   
Should be cancer free, I guess, already, since I had surgery to remove the tumor. This is preventative chemo. I have 5 more chemo sessions to go, and am dreading it all. Every two weeks, throughout the summer. And I have three kids and I am a stay at home mom...what to do with them for 7 1/2 hours while I'm getting chemo? They had tried doing it in three but I was unable to drink or eat almost anything for two days, and was having horrible jaw and finger pain.
Goodness I feel lucky to have had minimal side effects from the radiation. No blackness at all. Skin peeled and was very sore, but that's it, other than diahhrea (sp?!?!). Wasn't it fun to lay with your behind in the air for all to see? But hey, at least they weren't touching me. I dread every test or appt. for fear of being prodded in the behind once again. PLEASE DON'T TOUCH is what I should have tattooed on my ass!!
They can only do the reversal when the chemo is done. Sigh. Apprently you don't heal well during chemo.

pamysue
New Member


Date Joined Jun 2008
Total Posts : 15
   Posted 6/18/2008 1:18 PM (GMT -6)   
Lacey,
 
I had rectal cancer surgery 5/7/08.  Turns out is was stage 3 instead of 2, so now am having chemo.  Doing an aggressive regime according to me oncologist as I have decided not to do radiation.  I have an ileostomy and was completely freaked out about it at first.  Finding this board and reading the posts here have made it much easier to deal with.  There is no place better to get advice then from those who live with it.
 
If my chemo schedule stays on track (hopefully) I will have reversal surgery late December.  Nothing has went without complications so far, so I'm trying not to get my heart into that.
 
Good luck with your chemo!  I hope you are completely well at the end of this.
 
Pam
 
btw, none of my pants work because of where my stoma is either.  I'm pretty much living in yoga pants.

anne h
New Member


Date Joined Dec 2007
Total Posts : 5
   Posted 6/27/2008 4:05 PM (GMT -6)   
Hello eveyone!
 
I have not posted here for a good few months, dec/jan I think.  I posted for support on behalf of my dad who had a ileostomy back in nov o7.  It was a nighmare at first.  After the surgery he could not accept what had happened and went into a deep depression.  I had to get mental health involved.  He had severe depression and was put on and is still on anti-depressants.  They have made him a changed man now thank goodness.  He lost over 3stone in weight and would not eat and would pace around the house like a caged animal all the time before taking the tablets.  Now 7 months on he has gained nearly 2 stone in weight and eats everything.  It is really trial and error and he can eat almost anything now except beansprouts and nuts. Taking imodium has helped slow the bag input down and he can even manage 5/6 hours sleep now. He is on his last month of chemo(oral chemo)and is doing really well.  He makes himself  go for a 45min walk everyday and this has been a great help(they say excercise is the finest thing!!) this has been true for my dad.  The chemo has made him tired and is hands and feet are extra sensitive but other than that he is doing well.  Hopefully after his chemo he has to wait a couple of months and then he can have his reversal.  I would like to thank everyone who responded to my posts in the past they really helped and I hope this post about my dad will give hope to those of you are not coping well with things at the moment.  Dont get too down it gets better in the end.
 
Thank you
 
 
anne

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 6/28/2008 8:22 AM (GMT -6)   
I was diagnosed with rectal cancer, April of 1999. My tumor was an inch in size, barely inside. I examined myself a few times. A rectal ultrasound revealed it was through 2 layers of the bowel tissue and possibly through the third. I had a 5 hour surgery, major incision, having my gallbladder out too (a CT revealed hundreds of gall stones too), 90% of my sigmoid removed (reservoir where stool is collected), 15 inches of my colon, a temporary colostomy (reserved 2 months later). After my colon resection, it was noted that my tumor was malignant and had to come out of course (early biopsies revealed it was cancer) but more importantly, it was resting on the third layer of bowel wall tissue. Not penetrating. My surgeon did admit I didn't need the major surgery after all, they could have "scooped" out the tumor, my stay would have been 1 day, not 7, I wouldn't have needed a temp ostomy. However, I would have need chemo or radiation and they wouldn't have had clean margins.

So long story short, he maintained it was a good thing I had major surgery.

Another but, my life has never been the same since.

I now have IBS like symptoms, multiple bm's a day (at least a dozen), have to follow a low residue diet, keep my stress level low, find the nearest bathroom when out in public (I've gone EVERYWHERE!).

But I have my life, my cancer never did come back. If I had the simple scoop-out type surgery, it may have. They could have left a few stray cancer cells I was told.

My surgeon also said 20 years ago, I would have had a perm. colostomy. But since then he seemed very proud they could return patients to normal. Meaning, no perm. colostomy, as in my case. I still laugh at his use of the word normal.

I am anything but normal.

I also eat very lightly now and sometimes fast for social events. Of all the things that I have tried to fit in with a normal colon world, it's that - less food, means less output. I fast for long car rides too. I end up feeling much better when I eat 6 very small meals a day, not 3 large ones, as I used to, before cancer. I can never eat a full meal when dining out. I have to take at least half home in a doggie bag. My latest trick is to bypass the entire entree section of a restaurant menu and order just from the sides section. A side salad and baked potato fill me up now and I'm not holed up in the bathroom afterwards.

Just keep in mind, if you experience lots of D after your reversal, you could go on the low residue diet (plain foods, low fiber, do a search and you'll find lots of links). A low residue diet saved my life back then. If not for the internet and message boards, I never would have learned what one is - most doctors suggest high fiber. Fresh summer fruits (berries and such) and whole wheat products just do me in! I can't have either. But I am happy with my diet now (which my hubby has dubbed the "white" diet, since most of the foods I eat are white: plain bread, bagels, english muffins, applesauce, bananas, white rice, plain yogurt, mashed potatoes, fish, chicken, turkey, etc.).

Wishing you my best.

Marsky/Mary

rocky road
Regular Member


Date Joined May 2008
Total Posts : 32
   Posted 7/19/2008 12:31 AM (GMT -6)   
Marsky,
I am happy to read your story. You know why ? Because you have survived 20 yrs already and still doing good. More blessings to you.
I am dx as FAP (Familial Adenomatous Polyposis) and out from those polyps, some turns out to be invasive that I was dx colon cancer stage 1 (T1N0M0). I got desperate and scared, it really freaks me out because I have 3 little ones to take care and it was only last year that my mother died from a car accident. Terrible instances. I had a total colectomy done 23May2008. Lucky not to have chemo and radiation because the cancer was caught at an early stage, so my Dr just remove the total colon and connect my small intestine to my rectum, since my rectum only has very few smaller polyps and free of cancer. But until now even though my dr informed me that I am free of cancer, I still have the question, how many more years of life will I have. I really really prayed for an extension for the sake of my children. I love them and I want to see them grow up. You have given me an inspiration on your story. 20 years for me is not bad, I could live with that expection and if its more years what a wonderful blessings I would really treasure. God Bless again to you and your family.

Marsky
Veteran Member


Date Joined Jul 2007
Total Posts : 1956
   Posted 7/19/2008 8:15 AM (GMT -6)   
Hi Rocky Road - just remain positive and you'll do fine. I would suggest you make the most of everyday with your children but I know you already do that. I did the same (my girls were 3rd and 6th graders when I was diagnosed). They are 18 and 21 now. I was diagnosed with rectal cancer 9 years ago, so April of 2009 I will be celebrating my 10th year of being cancer free. When I mentioned the 20 years ago bit, my point was just a few short - 20 years ago - but now add 9 years to this doctor quote - so that's 29 years ago now, colon surgeons were not reconnecting patients and trying to save rectums, etc. They were not even discussing any of these options - patients were given colostomies. Just flat out told - you will have a permanent colostomy. That was that. My surgeon kept trying to get me to appreciate having had cancer in 1999 - at the time I remember just staring at him as if to ask - are you NUTS! LOL Yeah buddy, I'm glad I have rectal cancer in 1999......but in many ways he was right. Surgeons had come a long way back then.

And now even further.

They are doing inverted colostomies now. My current colon doc has suggested one to me. She said so simply - I would give you an inverted colostomy as low as possible on your left side (where the stool is the most formed, not too watery), remove your rectum, and you would irrigate your colon once a day. Wearing a bandaid over the inverted colostomy opening the rest of the day. She had lost me when she said bandaid. She said it would help me - get on with my life.

Well, I have done research since then and she is right, these patients do irrigate once a day and wear bandaids (large ostomy bandaids called Ampatch's), however some have to irrigate for hours. And you need all this special equipment to irrigate. Some have used up the alloted insurance amounts for products by now (July) and are paying out of pocket expenses for this equipment. Well guess what, we have lousy insurance now, each of us have $2500 ind. deductibles and our copays are high (Rx, $30 to $50, Office Visits $30, Specialist $60). It all adds up.

I am not ready for that simple procedure. She's a surgeon. She'd love to simplify my life. But it would only compound it, I suspect. At least now I can go in public places, relatives' homes, etc. I'd have to time that irrigation and hope I could still work part time (some patients have the irrigation process linger 5 to 7 hours!). It would a completely different way to take care of things and I couldn't go back to now. What I have learned is irrigation does help me at times (simple Fleet's enemas) so that's my approach for now. I do one or two a month. They just clean me out and give me a good span of several days.

Wishing you my best as well!

Mary

rocky road
Regular Member


Date Joined May 2008
Total Posts : 32
   Posted 7/20/2008 9:47 PM (GMT -6)   
Well, yes I totally understand your situation. The financial part will really play a big role. If you wouldn't mind
have you tried applying for a life insurance after you were dx with cancer ? I ask because I was rejected in my home insurance when I applied for it so as a result I am not insured with our new home that we purchase
it is only my husband who was approved. So, it worries me a bit because just in case that the unexpected
thing happens on me, the house is not paid out. If so happen that you had and was approved, what insurance is it ? Sorry, just really anxious and interested to apply for one for the security of my family.
As of my part I don't have a bag, it was only a reconnection of my small intestine to my rectum because I told my doctor, I don't want a bag or j pouch if I have the option. And he said I am the best candidate for reconnection only because I am so far a healthy individual (except for the cancer growing in my colon)before surgery.So I am thankful for that.
But anyways, good for you knowing all the details about the reversal, at least you know what to expect after.
Still try to find diff brands , you might never know you'll find a better but cheaper ones. If it takes for you to make your life easier, give it a shot. Your girls were already grown up, it's time for your life to come back,...
life is short as they say..... let's live to the fullest if we can everyday, right ?
Keep in touch. I really like to converse to people with the same situation where I am at. I could feel my freedom to speak about it. My family knows but not my friends ... just few knows about my ca.

sword
New Member


Date Joined Sep 2012
Total Posts : 13
   Posted 9/25/2012 9:26 PM (GMT -6)   
I am trying to find someone that has dealt with rectal cancer, an APR and a permanent colostomy. I had 7 weeks chemo/radiation that was not successful in shrinking the tumor then the very detailed invasive surgery that was also not very successful and am now 3 infusions in to 6 months of chemotherapy. My stoma is very sunken, misshapen and in a very bad position. I cannot find anything that works well with it. Anybody out there?

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5909
   Posted 9/26/2012 6:47 AM (GMT -6)   
     My heart goes out to all of you.  My paternal grandmother died from rectal cancer back in 1952.  Back then, little was known or discussed about this horrible disease.  I was six years old at the time and just remember her lying in bed.  When I had my operation in June of 2010 (total colectomy with end ileostomy), an old family friend told me that "nana" suffered the same symptoms as I had but never sought help!  I did not have cancer (yet) but was diagnosed with ulcerative proctitis in 1998 at age 52.  My GI doctor refused to send me to a colorectal surgeon.  All he wanted to do was try more and more meds.  6MP, Remicade and Humira....all failed.  So, I found a colorectal surgeon online and decided to have surgery.  Good thing because my surgeon said my rectum was badly diseased.  I am doing great!
     I just wanted to add, that there is light at the end of the tunnel.  I know an 85 yr old man who was diagnosed with rectal cancer at age 45, has a permanent ileostomy, did go through chemo and is still going strong.  Yes, it is a rough road to travel, but you WILL get through it!!  God bless.
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