New to ostomy - a dilemma

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Vireo
New Member


Date Joined Apr 2011
Total Posts : 8
   Posted 4/17/2011 8:50 AM (GMT -6)   
5 years after my radiation for rectal cancer, a large tumor has grown back and I’m facing major surgery that will result in a permanent colostomy bag and I don’t know what to do. But really there are only 2, or 3, choices, i.e. (1) do the surgery and accept the ostomy bag; (2) don’t do the surgery and die; or (3) search for an alternative non-surgical natureopathic cure which I realize is pretty much wishful thinking at this late stage. The surgery and recovery will be difficult enough but the prospect of having to wear an ostomy bag for the rest of my life doesn’t appeal to me at all. I’m 60, divorced, with one grown child. And to make matters worse the surgery might likely affect the prostate resulting in sexual dysfunction for the rest of my life. Yet I consider having to wear a permanent ostomy bag the worst of it. I’ve been reading lots of postings on the subject which have been helpful and supportive but still I’m depressed, scared, and not sure what to decide.

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 4/17/2011 9:04 AM (GMT -6)   
Hi Vireo,
I can understand your scared and feeling depressed about the prospect of life with an ostomy but it really is better than the alternative. I am 48 now and have had my ileostomy for 2 years now and I must admit that for the first 18 months I really struggled coming to terms with it but now I love life with it because I have a life now. My surgery was done as an emergency so I didn't have time to think much about it at the time even though I knew I would have to go down that road eventually it still didn't make it easier. As for sexual dysfunction I can't really comment on how that affects men but there are lots of medications that could help with that and it would be worth discussing it further with your doc. You have come to the right place as everyone here have lots of wonderful advice to give. There is nothing you can't do with an ostomy or ileostomy, it will give you quality of life and its not noticeable through your clothes, but of course ultimately the decision is yours to make, if you have any questions at all don't hesitate to ask away. Take care and keep us posted
Doreen

Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5968
   Posted 4/17/2011 9:12 AM (GMT -6)   
     Wow, you sure have a lot on your plate and my heart goes out to you.  I am a 64 yr old woman who was diagnosed with ulcerative proctitis at age 52.  Although I never had suffered with cancer, I knew if I kept postponing surgery I would surely be facing it sooner or later.  I was on so much medication....Colazal, rectal meds, prednisone, 6 MP.  Then tried Remicade and finally Humira all to no avail.  I was prednisone dependent for two years prior to my surgery.  I had to find a colorectal surgeon on my own as my GI doctor refused to send me to one.  All he wanted to do is try more and more meds.  My paternal grandmother died from rectal cancer back in 52 and I certainly didn't want that to happen to me.  I saw Dr. Robert Fry, head of colorectal surgery at Univ. of Pa Hospital in Philly.  He said I was not a candidate for j-pouch because of 1) my age 2) extensive use of prednisone 3) other health issues...high blood pressure, osteoporosis and high glucose levels all caused by prednisone.  I gave it about a minutes thought and told him I had no problem with the idea of wearing a bag.
     This was the best decision (other than marrying my hubby) I ever made in my life.  Believe me, it is not difficult.  You just have to make up your mind you want to live!  There are many ostomy support groups and I am sure your medical facility, family doctor or other medical personnel could recommend one in your area.  Personally, I needed no support group.  The people in this forum are phenominal and extremely helpful.
     God bless.  If you want to email me, my email address should be on my profile.  By the way, after surgery, my surgeon told me I made the right decision as my rectum was badly diseased.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/17/2011 9:32 AM (GMT -6)   
Vireo,

Welcome to the list. I'm so sorry that you're in such a crisis now. It's great that you're posting here, people are so supportive.

As you clearly state, your options are pretty much a bag or death. A bag is scary, but it is not death -- as Doreen says, it can give you your life back. It's a whole new world to learn about and a big thing to adjust to. When I was upset about the idea, one of my doctors said, "Isn't it cool that people can live without a colon?" In a lot of ways it is.... I started thinking that in many times in history, and in many places right now, people die of my symptoms (and I have Crohn's, not cancer). It sucked that I got the short end and the drugs didn't work for me, but I am so grateful that surgery, ostomy bags, etc exist and I can not only live, but live well.

I was recently reading about Farrah Fawcett, who I think was in a similar situation to yours. She chose #3, and it didn't work out so well for her..... feels very sad to me..... plus, what an advocate she could have been.

One thing that helped me a lot was meeting someone who had had the same surgery. It was just so calming to see a real person in the middle of a good, healthy life, made it all feel more manageable. The United Ostomy Association has a program where you can get a visitor (mine was through the crohns'/colitis foundation). This list has also been incredibly helpful.

It is all very hard and scary, but if we can do it, so can you..... hang in.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/17/2011 9:43 AM (GMT -6)   
Given your options, I really hope you will seriously consider having the surgery and saving your life. I'm almost four weeks out from my surgery to have my colon removed, and I can tell you it's one of the smartest things I've ever done for my health. Adjusting to the ostomy is no small thing, but it can be done and there is a lot of support out there if you need it. I'm still held back a little bit by waiting for my incision to heal, but even in these few weeks I can already tell there isn't anything I won't be able to do with my ostomy. I wish you all the best in coming to terms with whatever you decide. If you have anymore questions, please post them. The people here are amazing and have tons of knowledge.
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

Vireo
New Member


Date Joined Apr 2011
Total Posts : 8
   Posted 4/17/2011 10:58 AM (GMT -6)   
Thanks for the helpful replies. In regard to the surgery, I do feel confident about the surgeon. He's young (and brilliant imo) and would do the operation laparoscopically utilizing the latest surgical techniques. I'm referring to a total removal of the rectum. 5 years ago, he noted, it would have required a lengthy abdominal incision. Although, he mentioned, if the tumor has grown into the nerves, which I suspect it has, there will be a painful recovery afterwards. But I suppose there are painkillers for that. Nevertheless as a single guy living a distance from my family I'll be alone in my recovery except for a few friends (whom I haven't told yet) and, I'm not a wealthy guy to afford a nurse. In regard to friends, I hesitate to even tell most of them. I have told a couple of trusted ones, but my image of myself as a normal intact guy has diminished. For instance, a woman I started to be interested in a month ago when I seemed ok, I'm now hesitant to be honest with about my condition. But of course that's not about saving my own life. It's interesting to read the above mention about Farrah Fawcett. And I read anecdotes about famous people who've had ostomy, like Fred Astair(?) but it doesn't help. I'm just really struggling with this. But I know that all of us on this Forum are struggling with this and none of us ever wanted to be. But I read about the young ones in their 20's and 30's who've gone through this and I admire their acceptance and their courage. I just never thought I'd be here. To be honest.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/17/2011 11:27 AM (GMT -6)   
I had my surgery laparascopically, and that's definitely easier on the recovery (from the abdominal side; I had a complication w/the butt wound).

Will your insurance cover a few sessions with a counselor? That could be helpful, and it might be good to have someone to talk to who isn't in the rest of your life (course, we're that too). You are not the first to have these feelings.... which doesn't make them any less difficult for you.

My insurance covered a visiting nurse too.

I hope that your friends will rise to the occasion..... a lot of people do, but you have to give them a chance.

And being normal isn't everything.... can you see yourself as someone who wants to live and is going through a big, painful surgery in order to do so? I think a lot of people in my life admire me for doing this. It's really not what I'd like to be admired for, but it's better than a lot of things.... Of course you didn't expect to be here, but here you are..... it's OK to struggle, it's a hard thing, but I'm sure the radiation was a hard thing too.

Hang in.

I'll be thinking of you.
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

ring of fire74
Regular Member


Date Joined Oct 2009
Total Posts : 71
   Posted 4/17/2011 4:56 PM (GMT -6)   
Im a 37 year old bloke from england and im 4months post op,i have absolutely no regrets about having my ileostomy. I have not got a problem with having a bag,as for me and like so many on here it gave me my life back and that for me is all that counts, i amazed myself how well i have coped and have adapted to having a stoma and my wife,friends,workmates and family admire me as they know what i been through. It is tough adapting but i assure you its not all doom and gloom having a bag.
Good health is surely a priority
ROF

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/17/2011 8:29 PM (GMT -6)   
you have a really horrible situation going on right now, and i'm sure it's very hard for you.  I was 29 when i got my ileo, i chose it cause i wanted my life back, i wasn't in a life or death situation at the time, but i had no quality of life and i had a child that deserved a good mother.
now that being said, and apology in advance, but i'm a tough love kind of gal.  You can chose to not get a bag, and as you said, you will die.  and when you die, you will leave your child without a parent.  and you will never see your grandchildren if your child has them, and you will have given up your actual life because you don't want to have a bag. ok the idea of sexual dsyfunction is a bad thing, BUT if you are dead you aren't having sex then either.  there are lots of people with ostomies, fred astaire, tony snow (the former white house guy that died), one of the queens of england, napoleon, the list goes on.  life is fine, it's not awful, there's no smell, noone will know, you can do whatever whenever. 
so it comes down to, are you willing to die because you don't like the idea of having an ostomy? 
 
again apologies, but i'm all about laying it out the way it is. 

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 4/17/2011 8:44 PM (GMT -6)   
Vireo I'm a single woman too but was in a relationship when I had my surgery done, my boyfriend at the time was fine about the bag but of course I felt funny about it at first but if they feel strongly enough about you as a person then they will look past that, if not then they aren't worth the time and effort. You are still the same person that does not change. I did go and get counselling because I felt very much like you do and considered myself a freak, but I have so many great friends and family that are extremely supportive and every one of them are so happy to see me with a life now and I feel the same. As I said in my earlier post it truely is the beginning of your life not the end. My surgery was done laproscopically as well and also have my rectum removed with no regrets at all. Take care and hang in there
Doreen

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 4/17/2011 8:49 PM (GMT -6)   
Vireo,
Welcome to my world. I did not have cancer. I feel very bad for you that you have this disease. HOWEVER, I had an irreparable gut injury that I almost died from during surgery for a benign condition that on review did not even exist. My story too long. BUT upshot is that a bag out of my SMALL intestine was all that could be done to save my life. Have had some food blockages but in general life is worth living and I praise the doc who saved my life the best that could be done. Go for the bag and live. It is do-able. Yours will be a colostomy so should be easier to manage. I will pray for you. Regarding the sexual dysfunction, I got that. My original surgeons who severely injured my large and small bowel and rectum and PC muscle also gave me sexual dysfunction. NO FEELING. BUt ironically, I have just met a very nice male friend whom I simply enjoy cuddling with, such a nice change from the hell I have been through. There are pelvically injured women out there too who would just be thrilled to be your friend and companion. At our ages it's not totally all about sex anymore as it is about companionship from the heart. I have shed TOOOOONS of tears over this, but this is the conclusion I have come to. It only took me 4 years. I have travelled a lot in that time and ballroom dance and value every minute. I had no disease but serious adhesions and am risk of reobstruction but so far so good since the fix. The trick is to fully live every day. easier said than done. I am working on this too. I feel your pain. I'm 55 but without going through all I did I would be looking/acting about 40. Best wishes, Rosemary

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/18/2011 7:38 AM (GMT -6)   
I have met many people who have had to make the difficult decision regarding rectal cancer. I have to say that they may not have been accepting of the decision in the beginning, because it's not a matter of 'getting your life back' but being able to CONTINUE LIVING, have adjusted.

Please contact you local Ostomy Association. They can help!

I am a Crohn's patient, so why cancer wasn't the reason for mine, it surely would have become one had I allowed my colon to stay. I am VERY active and while it was tough recovering it is something I would do again if faced with it.

Your hospital will set you up with home health in the beginning, if needed, and they usually visit for a few days after surgery. I think you should reconsider letting you 'friend' know...you'd be surprised how accepting people are. Friends can help with groceries and rides to the doctor...please don't think you have to do this alone. Hey, if you're in NE Ohio, I'll drive you!!!

I know we have several gentlemen, who've had a cancer diagnosis, who post so I am sure they will be along.

Take care,
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Brian84
Regular Member


Date Joined Mar 2005
Total Posts : 457
   Posted 4/18/2011 2:39 PM (GMT -6)   
Vireo,
I know this is a difficult thing to handle but like others said it will improve your quality of life. I had severe crohns disease and was in pain every day and no medicines were working. I chose to have my colon, rectum and anus removed. They did it laproscopically and I have 4 very small dots as scars. You really can't see them. Like you, I was afraid of losing sexual function( I'm 26 years old btw). I spoke to my surgeon about it and he said its possible but doesn't happen very often. I'm happy to say I didn't lose any sexual function because of it.
As far as your lady friends go you can always wear an ostomy belt and tuck the bag up in it and also wear t shirt to hide it. There are so many options you can pick from to overcome any obsticles you might have. This is a good place to get advice on anything ostomy related.
Let me know if you have any other questions.

FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 4/18/2011 9:46 PM (GMT -6)   
Gotta agree with the crowd...I've had my illeostomy over twenty years now...at times I've hated it (like on a 12 hour flight to mexico and it leaked...course supplies were in baggage compartment somewhere in the belly of the plane)...other times I forget it is even there. I've married, divorced, raised two kids, dated, (way more than I care to admit), worked, traveled, go on a 700 to 1000 mile motorcycle trip with my buddies each year (cept those where I wasn't healthy)...and the ostomy was never an issue...the only issue it will give you is internal...it's your interpretation...if you go into it hating it...you will...it's pretty plain and simple...to be blunt...everyone on this planet craps...we just have a different exit. Live...enjoy life...love...laugh...none of these stop just cause you have an ostomy bag....the only thing that can stop these is you
Crohns since age 6...46 now.
No meds ever worked, 37 surgeries since age 11, intestines have ruptured 3 times. no large, very very little small left. Illeo since 89

Vireo
New Member


Date Joined Apr 2011
Total Posts : 8
   Posted 4/19/2011 5:01 PM (GMT -6)   
You guys are all great, and I like the straight-talk summerstorm, et al. You've made me accept my fate really. Changed my way of thinking. Thank you. How do I keep you all in a group, close? I'm in Connecticut, by the way Ohio, but thank you for the ride offer. I had a ct-scan yesterday and colonoscopy next Monday, then it's up to the surgeon. Oh man, look at my life.

betsaronie
Regular Member


Date Joined Oct 2007
Total Posts : 318
   Posted 4/19/2011 5:27 PM (GMT -6)   
Depending on where your colostomy will be located, you may be able to irrigate after an initial healing period and then you wouldn't need an ostomy bag at all, just a bandaid! You'll basically train your colon not to be active for 24 to 48 hours and so you won't need to worry about catching stool. There is a whole section on irrigation on uoaa.org's discussion site. Plus there a lot of people there that have their ostomies due to cancer as well. there are local chapters of UOAA all over the country, you could go to your local meeting and meet some ostomates before surgery and really get to know what the lifestyle is like. I encourage you to look at that site
As others have stated, its not so bad once you get used to it. My colostomy saved my life (my colon perforated), and now my loop ileo is leading to a jpouch. I had my entire rectum removed as well. I'm a girl, so it's not quite as much of an issue for me, but there is a surgery you can have that saves the sphincter muscles which are the main issue when it comes to sexual dysfunction in men and women. its generally referred to as sphincter saving surgery and there are several people on uoaa.org that talk about it. my sphincter was left intact because it is how i will use the restroom with my internal pouch. Now it may be that your tumor affects those muscles and needs to be removed, so ask your doctor about it.
I'm only 26 and wish I would have gotten surgery done 4 years ago when it was first offered to me. I was so scared of the prospect of it, but after going through it all i realize how much better it all is. I'm happy that Jpouch is what I'm able to do, but I know that if for any reason I have to go back to the bag it won't phase me at all. A bag is better than being dead that's for sure! Just keep hanging on. :)
-diagnosed with UC Dec 2006 at 22
-allergic or intolerant to all 5ASAs, sulfa and 6-mp
-emergency transverse colostomy on 9/13/10 from perforated colon
-J-pouch surgery step 1 of 2 3/21/11

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 4/20/2011 2:26 PM (GMT -6)   
I had my ileostomy done at 20 years old for Crohns and have now had it nineteen years. When they first did the surgery it was hoped they would be able to reverse it afetr 6 months. However, when I went for post surgery check up 6 weeks later my surgeon said 'I am so sorry to tell you that your colon was too badly diseased to ever be able to reverse it.' Sorry, I told him. You have no need to be sorry cause I had alreadsy decided in those 6 weeks not to have it reversed. I had to have another op later to then remove the colon, rectum and anus sewn up.

When I had my ileo done it gave me back my life, I was a 20 yo single girl who went to work, came home, had something to eat and went to bed as I was too exhausted to do anything else. Then after op I was out partying all night, and yes going into work next day after 3 hors sleep with raging hangovers! darn, I was catching up with all the partying my friends had done whilst I had been too ill. I met my husband 2 years later and told him about the ileo on our second date, he and only boyfriends I had had in the 2 years between were not bothered at all.

I wish you luck in your decision, only you can make it but to resign yourself to a death due to having to wear a hoover bag (my description to friends if I need to describe what bag is like) seems such a waste, excuse the pun. Tell your friends, they will want to help and support you or have a chat to a local stoma nurse.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

newcaney
New Member


Date Joined Dec 2010
Total Posts : 17
   Posted 4/20/2011 3:09 PM (GMT -6)   
Vireo,

I also had rectal cancer was at stage 3 when they found it had it removed back in August and have had the bag since. After chemo I have gotten my strength back have been playing golf again one my buddies said while we were playing I got to poop. I told him right before I teaed off Iam pooping right now and if I have to drive you back to the club house Iam adding strocks to you. You get use to the bag it is no big deal.

Dale

run4pancakes
Veteran Member


Date Joined Oct 2008
Total Posts : 938
   Posted 4/20/2011 7:07 PM (GMT -6)   
Dale: your golf story made me laugh! :-)
UC dx 2/08

Done with the drugs. Step 1 (of 3) J-pouch surgery 3/22/11, Steps 2 & 3 TBD
http://life-takes-guts.blogspot.com/

ENIGMAWRAP
Regular Member


Date Joined Nov 2010
Total Posts : 417
   Posted 4/21/2011 3:19 PM (GMT -6)   
Vireo,

I'm not going to kid you, the surgery is hell...plain and simple...but, consider your alternative...there were people on my same floor much sicker than me and I was feeling sorry for them, not me!

My colon and most of rectum was removed April 14th....so, after one week I can say it's tough, it's touch managing the pouch (we all need time to practice), and there will be other challenges, however, the alternative(s) were a lot more depressing and debillitating...luckily, I had my surgery "just in time" and hopefully am free of ulcerative colitis and any possible cancer.

As far as the sexual thing....that's a big one of course..but, I as I told my wife, I would rather be able to dance with you and be healthy for everyhing else and give up the sex....than try and keep the sex and end up dead or worse (yes, there are things on this earth that are worse than death).

Good luck with your surgery, and better luck with recovery....
engima



Vireo said...
Thanks for the helpful replies. In regard to the surgery, I do feel confident about the surgeon. He's young (and brilliant imo) and would do the operation laparoscopically utilizing the latest surgical techniques. I'm referring to a total removal of the rectum. 5 years ago, he noted, it would have required a lengthy abdominal incision. Although, he mentioned, if the tumor has grown into the nerves, which I suspect it has, there will be a painful recovery afterwards. But I suppose there are painkillers for that. Nevertheless as a single guy living a distance from my family I'll be alone in my recovery except for a few friends (whom I haven't told yet) and, I'm not a wealthy guy to afford a nurse. In regard to friends, I hesitate to even tell most of them. I have told a couple of trusted ones, but my image of myself as a normal intact guy has diminished. For instance, a woman I started to be interested in a month ago when I seemed ok, I'm now hesitant to be honest with about my condition. But of course that's not about saving my own life. It's interesting to read the above mention about Farrah Fawcett. And I read anecdotes about famous people who've had ostomy, like Fred Astair(?) but it doesn't help. I'm just really struggling with this. But I know that all of us on this Forum are struggling with this and none of us ever wanted to be. But I read about the young ones in their 20's and 30's who've gone through this and I admire their acceptance and their courage. I just never thought I'd be here. To be honest.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 4/21/2011 6:19 PM (GMT -6)   
Vireo - alot of good advice here. 
 
As tough as it is and overwhelming please "choose life". 
 
It is so amazing the honest true advice and personal opinions these wonderful people open up and share to help you and all of us with our decisions and coping.  For the longest time my husband would not even consider the surgery...once he tried everything imaginable chasing a remission and a "straight from the hip" assessment and talk from our local GI Dr last June it resonated and he made up his mind right there and then.  Shocked me but in a good way and even with the bumps in the road being only 4 months out of surgery we are very pleased this decision was made.
 
Each and every one of you know when it is time and the time is right but sometimes you have other issues that make you need to make your mind up a bit faster too so don't make things too difficult on yourself either.
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