Alone right now

Life sure does have a way of hitting us in the face sometimes. I'm so sorry about your diagnosis, and about your mother and father. My husband lost both his parents to cancer too, and it was very rough.

About the waiting - don't be feeling too bad about it. A lot of us were misdiagnosed for a year or more even after we got up the courage to go to the doctor.

Although it's an embarrassing place to have it, anal cancer is very curable. The treatment can be difficult but it's short compared to others. Please keep in touch and feel free to ask any question in the world.

Hi, just wanted to welcome you to our family. It is such a comfort to have this group of people who have shared the same experiences and really truely understand. I put off going to the doctor for well over a year before being diagnosed 2yrs ago with Stage3b anal cancer. The treatment was rough but short lived. I have some "war wounds" but have been NED (no evidence of disease) since treatment ended. You will find here a wealth of knowledge, care, genuine concern, and support, 24/7 with no appointment needed and no question too small, too big, or too embarrasing.

I will keep you in my thoughts and prayers 

No need to apologize for coming here to vent.  We all understand the shock of getting this diagnosis.  Considering the history of cancer in your family, no wonder you are scared.  However, anal cancer has a very high rate of successful treatment, so please do not let yourself go to gloom and doom.  I hope you will get the results of your biopsy on Monday so the waiting is not prolonged.  The sooner you know what you are dealing with, the better.   Like you, my mind went totally blank when my surgeon said she was 99% sure I had anal cancer.  We are here for you, so please lean on us anytime you need to.  We can and will help you get through this.  Keep us posted, please.

jenijensong said:

getting an anal/colon stoma at 30 years old "THE TRUTH"

I've survived Basaloid Carcinoma just above the dentate line ( a good sized aggressive mass ) for 10 years now but it hasn't been easy.  I agreed to get the stoma which I REGRET.  I vomit, suffer hearing loss and high pitched tones, get dizzy, get stomach cramps, have a hernia they can't do anything about and so on and on.  

Yes it's very curable, but I wouldn't get a stoma on my tummy area if I ever had the chance to relive this nightmare.

The bags leak, the glue unbinds and wafers peel away from your skin, the odor is terrible!!!, I have to take the bags out to the trash daily even in the winter -- my bathroom stinks---my neighbors complain -- I stink sometimes and it's just SICK.  I hate it.  My sister won't even allow me in her car because she can just smell it on me no matter how fresh I am.  My jeans/slacks bulge up when the bag fills with air and I have to empty it no matter where I'm at even if it's at college or out to dinner at a restaurant in a public facility.  

I have to wear stretchy clothes around my mid section in case the bag fills up.  If I get sick, I better have extra supplies on me because the dang thing fills up in 4 minutes and I have to remove it and replace it NO MATTER WHERE I'M AT when I have diarrhea which happens once or twice a month regularly and usually at the worst time.   

Yes you can train it to a point but don't get caught up in too much of the b.s. it has a mind of it's own.  

I just want you to know the truth of it.  Yes I'm alive but the quality of my life well that's quite subjective now isn't it.  

 

 

 

Hi jeni,

My husband has a colostomy here's a few tips for the smell. A plant based diet will help reduce the smell.  Meat stinks the most.  You can put a mint into the bag.  Also your supplier should sell something to eliminate the smell.  All of these methods really work.  Maybe yourbag does not fit your lifestyle, talk to a stoma nurse.  I Hear of people who do training or irrigation and then they can just cap it off.  No bag.  There are options out there.  I know it is hard to deal with.  Be kind to yourself.

jenijensong said:

getting an anal/colon stoma at 30 years old "THE TRUTH"

I've survived Basaloid Carcinoma just above the dentate line ( a good sized aggressive mass ) for 10 years now but it hasn't been easy.  I agreed to get the stoma which I REGRET.  I vomit, suffer hearing loss and high pitched tones, get dizzy, get stomach cramps, have a hernia they can't do anything about and so on and on.  

Yes it's very curable, but I wouldn't get a stoma on my tummy area if I ever had the chance to relive this nightmare.

The bags leak, the glue unbinds and wafers peel away from your skin, the odor is terrible!!!, I have to take the bags out to the trash daily even in the winter -- my bathroom stinks---my neighbors complain -- I stink sometimes and it's just SICK.  I hate it.  My sister won't even allow me in her car because she can just smell it on me no matter how fresh I am.  My jeans/slacks bulge up when the bag fills with air and I have to empty it no matter where I'm at even if it's at college or out to dinner at a restaurant in a public facility.  

I have to wear stretchy clothes around my mid section in case the bag fills up.  If I get sick, I better have extra supplies on me because the dang thing fills up in 4 minutes and I have to remove it and replace it NO MATTER WHERE I'M AT when I have diarrhea which happens once or twice a month regularly and usually at the worst time.   

Yes you can train it to a point but don't get caught up in too much of the b.s. it has a mind of it's own.  

I just want you to know the truth of it.  Yes I'm alive but the quality of my life well that's quite subjective now isn't it.  

 

 

 

I truly appreciate your honesty and sharing of your experiences with living with a colostomy.  Since I've been through cancer, I don't have most of the fears I used to have, including that of dying.  However, to be totally frank here, my biggest fear now is having to someday have APR with colostomy.  I always try to support people who have to go that route and be as positive as I can, but I have no experience with one, so who am I to say that life can be "normal" with one?  I know, as stated in another post, there are things that can make living with one easier.  However, it's evident that some people do much better with one than others.  I'm sure there are plenty of horror stories, as well as positive ones.  My second biggest fear is dying before my 88-year old mother who has dementia and needs me to be around for her.  I don't fear death, just dying before her.  Therefore, if faced with having to have this surgery, I would probably have to consent to it for that reason and that reason alone.  Otherwise, I would have to pass.  Of course, I say this with not having had to make that decision.

I hope you can find ways to improve the quality of your life.  I'm sure you've spent time with a stoma nurse and gotten lots of information.  There are support groups, which I'm sure you know of, both in communities and online.  On this site, you may want to check out the colon cancer board for some feedback.  I wish you all the best and hope you find ways to overcome the challenges you now deal with.

jenijensong said:

getting an anal/colon stoma at 30 years old "THE TRUTH"

I've survived Basaloid Carcinoma just above the dentate line ( a good sized aggressive mass ) for 10 years now but it hasn't been easy.  I agreed to get the stoma which I REGRET.  I vomit, suffer hearing loss and high pitched tones, get dizzy, get stomach cramps, have a hernia they can't do anything about and so on and on.  

Yes it's very curable, but I wouldn't get a stoma on my tummy area if I ever had the chance to relive this nightmare.

The bags leak, the glue unbinds and wafers peel away from your skin, the odor is terrible!!!, I have to take the bags out to the trash daily even in the winter -- my bathroom stinks---my neighbors complain -- I stink sometimes and it's just SICK.  I hate it.  My sister won't even allow me in her car because she can just smell it on me no matter how fresh I am.  My jeans/slacks bulge up when the bag fills with air and I have to empty it no matter where I'm at even if it's at college or out to dinner at a restaurant in a public facility.  

I have to wear stretchy clothes around my mid section in case the bag fills up.  If I get sick, I better have extra supplies on me because the dang thing fills up in 4 minutes and I have to remove it and replace it NO MATTER WHERE I'M AT when I have diarrhea which happens once or twice a month regularly and usually at the worst time.   

Yes you can train it to a point but don't get caught up in too much of the b.s. it has a mind of it's own.  

I just want you to know the truth of it.  Yes I'm alive but the quality of my life well that's quite subjective now isn't it.  

 

 

 

I am so sorry for your regrets, that is difficult to live with. I have had my colostomy for two years now. In the beginning I had some complications due to radiation and was hospitalized/nursing home for a couple months. I too had leaks, odor problems, poor fitting appliance, and some clothing issues to name a few.

But.....when I began to recover from treatment I joined a couple of on line support groups and was fortunate enough to find an ostomy group in my area with a fantastic ostomy nurse. Through these I learned of the various suppliers and went through numerous free samples till a found a system that worked for my skin/body type. A hurnia presents a whole new set of fit issues though! I have  met a few people dealing with that same problem. Some were able to have surgery and some not.

Like many things in life, living with an ostomy and all it entails is not a "one size fits all" kind of thing. I spent a lot of time with trial and error and both emotional and physical adjustments. I have been able to tweak my diet (a very minor adjustment to how I ate before) so that I don't have to wear a bag for about 6hrs a day if I don't want. I really have no odor problems anymore and dispose of ostomy bags in a plastic bag and then garbage so have not had a "in home" problem either. (and I'm kind of a clean freak) I swim, exercise, do yoga, and most of what I did pre-bag! I am fortunate that my stoma was expertly placed so as to allow me to wear most of the clothing styles I would without. I also have had a double mastectomy with no reconstruction so takes some creativity though! Truthfully, most people don't know of either. I would never have made it to this point without the help of the ostomy support groups. This is something that if you don't have you just can not know, that includes the good and the bad aspects. I realize that I am lucky, and many people have negative issues they deal with, with their ostomies. I always appreciate hearing or seeing both sides of the coin, so thank you for your post on this.

I will pray that things improve and we all move forward in health!