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Trying to cope with new colostomy

Free32803's picture
Free32803
Posts: 7
Joined: Aug 2003

Hello I am new to the group, I am so glad I found all of you. January of 2000 i was diagnosed with anal canal cancer. I went through an extreme aggressive 35 treaments of radiation and 5 days 24 hours a day of chemo a month in between, then another aggressive 5 days 24 hours a day of chemo. I denied the last bag because of the extremly horrible side affects of both the radiation and chemo. I was 1 year and 7 months cancer free. It came back only worse this time, my only option was to have a permanent colostomy, or die. I am 36 years old and have a wonderful husband who has been by my side through all of this, and our 4 children. I watched what it did to my family as i deteriorated going through the radiation and chemo, and radiation burns (which I have permanent radiation burns internal/and external) It tore me apart to see what my children and husband had to endure. On March 28th of this year I had a permanent colostomy. I also suffer from Biolar Disorder which did not help my moods or self esteem. It was that or die a very painful horrifying death, sorry that was not in my plans. I am doing well with the colostomy, I have some down days that it does affect my mood swings, but I am alive today. I am currently writing books for children and teens. And I do always wish/think there could have been something anything but a permanent colostomy. To be quiet honest with you it was more of a vanity issue for me than anthing else. I am married to a wonderful man, who even though I have a colostomy makes me feel sexy, and that I still light his fire. His love for me is unconditional, the bag bothers me, but to him it is not even there. He went and bought me a new wardrobe to aggree with my new best friend. I Thank God I am still alive for my children, my writing career, and most of all for the man who loves me for who I am not because of my colostomy. God has blessed me in many ways, and for that I am eternaly greatful to him!
I hope this did not put anyone to sleep, sorry so lengthy LOL :0)

michel
Posts: 4
Joined: Sep 2003

Hi. I'm 47 with anal cancer and finished my chemo/radiation in April this year. I found the chemo no problem, but the radiation was too much. I even tried to bail on treatment 5 days before the end, I had just had enough. They bribed me with enough drugs to put an elephant out. My greatest fear is having more radiation or getting a colostomy. I still have daily pain in the tumor site, daily body functions are difficult and painful. Keep posting about your new "accessory", maybe I'll become more comfortable with the idea.

Free32803's picture
Free32803
Posts: 7
Joined: Aug 2003

It kinda grows on you (the colostomy bag) lol
I am currently using Hollister products and they are very good. I found it really does have some good benifits to having a colostomy. Some days it bothers me but not as much as when I got it almost a year ago. Thank you for sharing your story I wish you the best of luck.
Jackie

rechelle1000
Posts: 3
Joined: Nov 2003

Hello I am new to the group too. I was diagnosed with anal cancer this March. I am 27 years old. I had a round of chemo and radiation soon after my diagnosis. Then I had colon surgery to remove my anal tumor. Then eight weeks later I had liver surgery to remove a tumor that had spread from the original rectal cancer. I was very lucky and my surgeon was able to remove my rectal tumor without doing a colostomy, but if the cancer ever returns I will definitely have to have one. I am now currently starting six months of preventative chemotherapy with the drug Irontecan. I have been through the whole gamut of physical problems of severe nausea, severe diarrhea, anal radiation burns, anal rawness and of course healing with huge surgery scars. I am alive though and actually functioning quite well. Learning to live with near constant diarhhea and limited bowel control has been difficult, but just something I have to deal with. I still feel it's better than a colostomy, but I know I will probably have to have the colostomy in the future. Luckily I have a great husband who thinks my scars are sexy. I am yet to see that point of view, but maybe there is hope someday when the tenderness and swelling goes down completely. I would love to hear anyone else's stories. Everyone writing into this one sure has one :)

georgeanns
Posts: 8
Joined: Aug 2002

This is my first message to post on CSN, and am happy to hear from all of you. I was 32 when I was diagnosed with rectal cancer, but it is a neuroendocrine tumor, which I understand is more like small-cell lung cancer than the ordinary rectal cancer, so, I assume my cancer is different than many of yours.

I went through four rounds of chemo treatments in fall 2002 (platinol and CPT11),a permanent colostomy in Feb. 2003, and then six weeks of radiation. Just this past Sept. 2003 I had a recurrence in my liver, and I am now going through my second round of chemo. I just finished my sixth treatment and will be getting a cat scan later this month to determine if I should get any more treatments.

For the first few weeks and months after my surgery I was very disgusted with my colostomy. I dreaded emptying it, and I was scared to death the first time I had to remove the old wafer, clean it, and put on the new one. I postponed it for days, until it was literally falling off my skin and I was forced to replace it or suffer dire consequences! It's been almost a year, and I still do not like it, I am worried that it makes noise in quiet environments, I worry about odor, and I still procrastinate about emptying (although now I use disposables, which is so much easier) and cleaning the site. But by and large, I find I can wear all of my clothes that I did before my surgery, and absolutely no one has any idea it's there. I, too, am blessed with a man who thinks I'm sexy regardless of the bag. He doesn't even see it until I point it out to him, and even then, it is a non-issue. I'm the one who makes it an issue, but I am trying to change.

In my research, I have learned the most important thing about having a colostomy is finding a product that makes you comfortable. There are literally hundreds of different types of bags, wafers, one-pieces, two-pieces, drainable, disposable, closed-end, open-end, etc., and you have to find the product that works best for you. I think you can call around your area to find a place that retails the products (I order mine from mail-order) so you can try only one so you don't have to buy the whole box. I found the disposables work best for me. You just pop them off and throw them away like you would a sanitary product.

I hope my experience helps you. If there is anyone out there with a neuroendocrine cancer tumor, please let me know. I'd love to chat with you.

Free32803's picture
Free32803
Posts: 7
Joined: Aug 2003

Thank you for sharing your story with me it really did help me out alot, at least I don't feel so alone at this. It is good to know that others as yourself who have experienced the same feelings as I did. I wish you the very best of luck. Please let me know how things are going for you.
Jackie

hopefulcure
Posts: 6
Joined: Mar 2004

To everyone.....I'm a 54 y/o active woman who was diagnosed with anal ca 10/01. I am also a Nurse working with surgical patients in an Oncology clinic. After chemo and radiation, I thought I was going to die. The radiation burns on my "female area" were horrendous, to say the least. BUT....here I am...talking about it! I thought that I was the only person around, who had this type of cancer. I was a Nurse....so all the Drs. thought that I knew everything there was to know about anal cancer and tx. WRONG.....when it's you going thru it, you need all the help you can get!! Anyhow....After all the chemo and radiation, I had biopsies done again and to my despair.....the Ca had returned....(Or it all didn 't get gone!) Since I was diagnosed with lymphedema from the radiation..my surgery was scheduled for Aug.02. Again....everyone thought that I would know everything about surgical rehab, because that is exactly what I taught my patients. WRONG again! Even though I got moving and healed very well, my mind was reeling. My colostomy was so, so. I soon became user friendly and the colostomy and I became ONE! I found out that noone really knew that my colostomy was here.....just ME. And I had poor body image. But, my husband finally convinced me that since he knew me best.....he would help me. I now go out in public......without a worry. So what if it makes noise.....you still do without a colostomy! Sorry to babble on....but, I am so glad to find out that there are other people out there who have had anal ca. Even though I educate patients before and after surgery....I know first hand it is hard when it's YOU!! Although I am not back to work yet....it's the lymphedema that holds me down.....not the colostomy!! If it is inevitable that you get a colostomy.....search around for the best appliance. Most people who have answered you are younger than me, and I exercise and walk with the best of them!!! I pays to have a loving husband, who loves you just the same as 30 years ago!! My new goal in life .......move on...! God Bless!! Would love to hear from any of you!!

ACW32
Posts: 3
Joined: Mar 2004

hopefulcure --

Thanks for that encouraging post. I hope and pray I am as enthusiastic as you a couple years from now!

hopefulcure
Posts: 6
Joined: Mar 2004

I guess you do have a colostomy if you are posted in this message. Vanity can't be present when you have a colostomy. My husband and I enjoy our "private" times, just as before my colostomy! I'm the one who had to get over it...I wouldn't go out anywhere for along time after my surgery. Except for going to the ET Nurse. That was my big outing!! When you finally get over the fact that you have a colostomy.....then you can get on with your life. At 54, I'll take life anyway I can get it...and this is not too bad. Just a little comic time, if you don't mind.....My husband came home from work and told me that one of his workers' father (elderly) had a colostomy. And he named his colostomy, Fred. She told my husband that it probably would be good for me to name mine......I didn't thing that it was funny, especially since it was only a few months after my surgery. I told him sure.....(and matter-of- factly) tell her I named it *******!!
My husband cracked up laughing.....but I didn't seen the fun in it. What I'm trying to say is...this too shall pass......get used to it...you'll need it for life!! God Bless!

Free32803's picture
Free32803
Posts: 7
Joined: Aug 2003

Hello I found that most people do give their stomas names,it is a new experience for most. I named mine Rosebud LOL. It has been a year and 4 months since I have gotten mine. I am also cancer free, 2nd time around. It is a scary thing when you first get your colostomy, and it takes some getting use to. At first I too dreaded leaving my house and stayed home and inside as much as possible. I could not get use to the appliance, and accidents. Then I had to really change my wardrobe, that was not so difficult. Then you learn ways to dress so you can not see it, and unless you tell someone they don't know you are wearing a bag at all. It is also good to have a positive frame of mind.
Good Luck To Everyone :0)
If you have any questions please feel free to ask.

ACW32
Posts: 3
Joined: Mar 2004

Hi georgeanns (and everyone),

I was diagnosed with neurocendocrine carcinoma of the rectum in February 2003, underwent colostomy surgery, received cisplatin (aka platinol) and VP-16 for several months, and am now on carboplatin and VP-16. This cancer is likely the result of radiation treatments I received as a teen for rhabdomyosarcoma. As a result, I've already had the maximum life dosage of radiation and therefore I'm unable to receive radiotherapy. The cancer spread to my liver but fortunately there is only very small residual metastatic cancer remaining at the present time. I receive CT scans every other month to keep an eye on the remaining malignant lesion.

The colostomy hasn't been nearly as difficult an adjustment as I originally thought it would be. There are great products available and it became my mission to find the best system that worked for me.

Georgeanns, it would be great to hear from you.

And if anyone else has specific questions regarding a colostomy, feel free to ask!

aibileen
Posts: 3
Joined: Aug 2010

I am new to the group and was wondering how all of you are doing now. These postings seem to be a few years old and I'm hoping all of you are doing well. I have a very strange and rare story and it shouldn't be taken as any kind of warning. I have an unusual metabolism which made me react severly and oddly to my cancer treatment. I advocate for aggressive advocacy for yourselves in getting the problem handled. It just didn't work out well for me. Diagnosed with anal-rectal cancer in '03, treated with an aggressive 8 week program of chemo the first and last week 24/7 with radiation for the full 8 weeks every day. My body couldn't take the radiation and it kept on burning me until I was disabled for life. Producing liquid all day and night, spinal collapse, female channel fused together by burns, and hip disability. I'll never be able to work or go to school or do anything particularly useful. I can sit in an upright position for about 20 minutes.

I was wondering if anyone has had symptoms like this, knew of products I haven't tried or any words of wisdom in general. My husband has a hard time dealing with this and, I have to say I envy those of you with such supportive families. He tries to be, but just doesn't want to hear it anymore.

I lead a very high profile, successful life before this. Wasn't daunted by the cancer, but the radiation burns were killing me. I discovered that all my money had been spent during my illness, went into bankruptcy, finished that and am looking for a way to live somewhat normally within my limitations. My husband didn't work while I was sick, spent a ton of money, and we moved far from home so he could work and we could get our marriage on the right track. There had been alot of strain on the marriage but I went along because I love him and know he loves me. But, we got to our destination, he took a position which requires constant travel, I have no infrastructure for making friends, but have managed to make a couple good friends. My life is improving, I'm happy to be here, and this is the first opportunity I have had to talk about this with others who've had similar experiences.

So, how are you all now? Any advice on products for a badly formed stoma? I have about a 2 hour window of activity every day and would like to feel useful again even though I am very limited in standing, walking, sitting, etc.

I'd like to add that all of the postings I have read have been inspirational and I am glad to hear such and overall positive outlook on things. My outlook is good, but my prospects are dubious. I am glad to have an ostomy which is why I'm alive. I just want to move ahead and put all the negativity behind be. My doctors said what happened to me was an abomination, they'd never seen anyone respond this way and couldn't find anyone who had. I lived without an ostomy for a couple of years and am thrilled to have it now since during the time without one I had to live as a shut in.

Forgive me for unloading like this, but I've never been able to talk about this before to people who actually understand. My doctors were great, but they didn't have this condition and kept telling me to be patient and it would heal. Never did. It's just as violent now as ever but, thank got it's got a pouch!

Lovekitties's picture
Lovekitties
Posts: 3346
Joined: Jan 2010

I too have a colostomy, since March 2010. Unlike you I have had no problems with it or adjusting to the change.

On your profile you mentioned that you have a poorly set stoma with it being to short and that this causes you problems. Have you contacted any of the ostomy supply companies regarding this problem to see if they have a product to help you? It is amazing what they have out there and they do have trained ostomy personnel who can help you, not just some telemarketer wanting to sell things.

Are you having difficulty with the content from the stoma? If so you might want to ask about diet changes which could help. There are lots of folks on here who are very knowledgeable about such things.

While you may not be able to sit upright very long, the computer can be your window to the world of school, work, most any thing you want. If computer is currently desk top model, the next upgrade maybe you could get a laptop and have a wireless hookup installed. Then you could access it from wherever you are most comfortable.

The folks here are always glad to offer their help and to be a sounding board when you just feel like you need someone to understand your feelings of the moment.

Take care.

To better health for us all,

Marie

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

I have had a colostomy for 2 years,july,and you get used to it,it becomes part of your routine.One of my brothers died of cancer,and I decided if that is the worst thing that happens,then I can live with that.Just be sure to take your medication and you should be ok.Some people do name their stoma,I call mine stinky,because when I get gas it smells bad.If you have a lot of down days then see the doctor about medication.I take zoloft,and adivan among others,and they help.Good luck.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

Its no problem for me at all...I multi task with it..I use it as an "on the road commode", a change purse and it also holds my Prozac.....It has been my little helper for a long time, and I won't leave home without it.......Buzz

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