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Having a pity party

Moesimo's picture
Moesimo
Posts: 1075
Joined: Aug 2003

I am having a pity party and I probably shouldn't vent here. I know that there are many people who are worst off than I am, but I have been pretty down lately. I had surgery in 6/03 for stage 3 rectal cancer. 2 positive nodes. I had a temporary ileostomy which was reversed 8 weeks later. Since then I have never been able to get the bathroom thing to a point where I feel comfortable. I have lots of diarrhea and have tried everything. The surgeon has recommended a permanent colostomy and I was booked in March, but I couldn't go through with it. It is now affecting my quality of life. I have a supportive husband and three great kids. My husband thinks that I would have a better quality of life with a colostomy. I think if I wasn't a nurse that this decision would be easier to make. My tumor was very low and all my rectal tissue has been removed. My body cannot adjust to the change. Thanks to all who are listening to me complain.
Maureen

tkd3g
Posts: 768
Joined: Aug 2004

Maureen, I'm sorry you are having such difficulties. I had surgery on June 23rd for rectal cancer stage 3. I didn't need an ostomy. That was very surprising. I was marked for it and ready for it.

My dad had colon cancer 6 years ago and had a temporary. He has never been "back to normal since". He many times wonders if having the ostomy would have been a better choice.

I understand your hesitation. Can you talk with an ostomy nurse? Maybe you've done that already.
Perhaps a second opinion on a treatment for the diarrhea?

My thoughts and prayers are with you.

AND, you can have a pity party here any time you want to!!! That's why we are here.

Barb

2bhealed's picture
2bhealed
Posts: 2084
Joined: Dec 2001

hey moe,

If you can't have a pitty party here then where can ya huh?? This is the place....

I second the second opinion. Does your body need more time to heal? I mean that is a huge decision...once that function is gone it's gone right? There is no turning back?

I think barb's advice sounds good. Talk to others who have one too. I'm sure you have....

Anyway we all have pity party days and they pass but it's good to know you CAN come here and vent.

peace, emily

nanuk's picture
nanuk
Posts: 1363
Joined: Dec 2003

Maureen: It seems that the decision has been made for you..if the rectal tissue is gone, and you can't control the bowels, a colostomy would seem a blessing.. or am I missing something here? Yes it's devastating, but not the end of the world. I have a colostomy, and am able to do everything that I did pre-surgery-(11/2000) Bud

steved
Posts: 836
Joined: Apr 2004

we have a lot in common although I'm a bit behind you. I too had stage 3 with two postitive nodes and still have my temp ileostomy as I will keep it for six months for chemo. I have heard a lot about the difficulties of reegaining bowel function after a reversal and am nervous about that. I also know others who have had to have a permanent colostomy to cope. It is abput weighing up the qulaity factors in your life. Running to the loo and the irritaion chronic diarrhoea causes is really disruptive and while a colostomy may be difficult initially it si amazing how quickly the wierdest things can become normal.

The otehr thing we have in common is the medical thing- I am a doctor- and a can appreciate that this can make decissions like this difficult- a little knowledge is a dangerous thing. I tis important to let go of that if possible and just be a patient sometimes. Hard to do but it does allow you to make decissions without all the knowledge clouding your judgement.
Anyway let us know how things pan out and feel free to use us as much as you need to vent your worries- better out than in!
Steve

Kanort's picture
Kanort
Posts: 1275
Joined: Jan 2004

Hi Maureen,

The others have stated things so well, so I'll just add that I hope that things get better for you. I'm sorry that your are struggling with what is the best course of action for you to take.

Please feel free to vent all you want, and let us know how things are going. You will be in my prayers.

Kay

grandma047's picture
grandma047
Posts: 381
Joined: Feb 2004

Hi Maureen, I haven't talked to you in a while. I'm sorry that you're having problems. It has to be your choice. Here's my two cents though. Before I had surgery in May, I knew I was going to have a permanent colostomy. I hated the idea. I thought about it constanly. But you know, as everyone on this board does, the problems I had when I had surgery. After almost dying, the colostomy did not even bother me. I've had very few problems with it since it started working right. I went to Amish country with my daughter for three days and didn't have to go potty all day. We were able to really enjoy ourselves without worrying about diareahea. Sometimes, I think I hate this thing. But, then I think. Dummy, you're alive arent you?? It is doable and after a while you don't even think about it that much. Mine is still a little gassy, so I worry that someone will hear it. That's the worse problem that I've had with it. So....like I said, you need to look at the pros and cons. If you have any questions, I'll be glad to help. You will be in my prayers.
Love and prayers, Judy(grandma047)

RunnerZ
Posts: 185
Joined: Feb 2004

Moe:

You are so allowed to have a pity party if you want. I am a 6 year survivor of stage 3 rectal cancer. I did not have a temporary illeostomy, but did struggle with bowel movements for a long time after my surgery and chemotherapy. My recovery was so gradual that at times I did not even notice it, but now almost 6 years later I am living a normal, if at times inconvenient, life. Don't give up quite yet. Time is on your side. After only a year or so I was ready to give up too. But then things got a little better at a time. I found that really small meals helped a lot, and that energy bars (Power Bars) and water could replace lunch and leave me able to work without too many trips to the bathroom! I then ate a regular dinner, where in the comfort of home I could make a dash to the Bathroom! Try breaking down your diet and see what you can tolerate. I can't eat very much fresh fruit anymore, or raw vegetables. But I can eat them out of a can or cooked. I take vitamins to make up for some of that loss, and drink orange juice for the vitamin C. However, some days I eat just soup, toast and power bars to insure a good day! Take care of yourself and be patient!

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hiya Moe, I think Runners advice on "time heals" is worth consideration. Although I do not have a colostomy, my own situation in the past 12 months left me also feeling worried about how things would turn out--understandable. Jen and I hope that with time and adjusted diet you can overcome this problem. As Bud said, a colostomy can let you lead a normal life also. I have a friend here who has had one for 18 years--life is normal for him--it just took time to get used to it.
our very best--kanga n Jen

taraHK
Posts: 1961
Joined: Aug 2003

Hi Maureen,
I'm glad you feel you can vent here - we all need to know we can share down times as well as our joys. I'm sorry you are having a difficult time with diarrhea, etc. The decision you face is such a tough one. For what it is worth, please let me share my perspective: I also had stage 3 rectal cancer. Mine was very low, and I had removal of my rectum, resulting in a permanent colostomy. Yes, it was a big adjustment. But, I can honestly say that, from my perspective, it is not a big deal now. I can wear almost everything I wore before, I can do everything I did before, and it doesn't take much time. I have been able to do irrigation, so that I don't even have to wear a regular pouch and don't have any output (not every one can do irrigation, esp if you've had radiation -- i was lucky -- and not everyone choses this option). I wish you all the best with your decision.
Tara

GayLynn
Posts: 1
Joined: Oct 2005

I joined the list to try and get help for my friend, who is suffering from severe diarrhea after an ileostomy reversal. She is angry and needs to talk with someone to tell her this is normal and it will go away at some point time. Any suggestions?

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