Can Santa bring me new plumbing?

[Makie1503]

Sorry - this post is just really a rant. I'm so grumpy just now that I don't want to be near anyone for fear of biting their heads off. Got a lot of pain today and think I have another UTI. Incarceration at home for 15 months post ileostomy reversal is driving me crazy. My guts just won't behave or regulate at all - despite lots and lots of help and advise. I'm seeing surgeon soon to discuss surgical options and think I may be going back to some type of stoma. To get more investigations to look for fistula - gross, and urologists are doing further assessment to see if I might be able to get rid of catheter. I know I'm fortunate, as I'm Stage 3c and currently NED and compared to a lot of people on this site, my worries are much less. My quality of life was much better with a stoma.
I hate cancer. It took my lovely Dad and much loved dog this summer. It's stole my independence, job, and dignity. I hope 2014 is a better year.
I was starting my Christmas shopping online and thought about what I want - hence the topic.
Sorry to moan here but don't want to upset my family any more and needed a good grump! I'm usually a cheery and positive person, but not today.
Makie1503

[NWgirl]

I can relate 100%. I did finally opt for a permanent colostomy 2 years ago after trying everything to make my reversal work. It was the best decision I ever made. If you go to the blog section of this site and search on 'colostomy' you can read the 3 part blog I wrote on how I came to my final decision, which was really hard. It was the right decision for me and I lead a very active life now; despite being on chemo for life. I couldn't do nearly as much as I do now without my colostomy. I just wish in retrospect that I'd had the courage to do it sooner.

[Lee]

Sorry for all the problems you are having, these issues can be very challenging at times. I have a permanent colostomy and for me it was the right decision. As a result of radiation, 2/3 of my rectal muscles were destroyed, thus I was tied to the toilet anytime I ate. Many days I did not get my first meal of the day until 3:00 or 4:00 in afternoon when I knew I was home for the day.

Getting the colostomy gave me my life back. I don't have to worry about what I eat or how it could effect me. Or where the nearest bathroom is. While I never really had issues with constipation and diarrhea precancer diagnoses, I do have them now post cancer diagnoses. I believe radiation is the cause of my constipation/diarrhea issues. Because of the bag, I don't have to let it impact my day to day activities. I always carry a few supplies with me and used them when needed. I don't have pain issues there, I believe because I gave my surgeon carte blanche to take all you wanted. And most importantly she took ALL of my hemorrhoids issue away.

I hope your surgeon has some options for you. For many people, myself included, getting that "stoma" was a blessing. Good luck,

Lee

[Makie1503]

Thank you very much for your supportive replies. Life, for me was much better with my stoma, and I think that I will be getting a new one soon. I'll have to think of a new name for it.
The extensive surgery, radiotherapy and a leak causing sepsis after my stoma reversal, have wreaked my plumbing. This treatment along with chemo, have as you all know been difficult and life changing, but I'm lucky as it seems so far to have kicked cancer's butt and kept me alive.
NW girl, I've actually already looked at your blog to help me with this decision - thanks for putting your experiences down in blogs, it really helps. It's a huge decision but I coped well for 11 months with my previous temporary stoma and will cope and have a better quality of life with this choice. The thought of being able to go walking, out for a meal, away for a weekend or holiday, or even just shopping again, are making me go with this decision. I am cautious about more surgery but have given up on my plumbing and need to as Lee says, get my life back.
Thanks again for your support.
Makie1503

[NWgirl]

My surgeon initially thought she'd have to open me up - big incision again -for my permanent colostomy but when she got in there she found she could do it laproscopically. Recovery was SO much faster and easier with this type of surgery. I was up and around in no time and getting used to the stoma the 2nd time around was also SO much easier and faster. I hope if you decide to opt for the colostomy that your surgery, recovery and especially finding your life again, is as quick as my experience was.

[Guinevere]

I'm hoping that Santa DOES bring you new plumbing if that's what you decide to do. I know, as much as I hated it when I got it, I wouldn't want to go back to what it was like even if it were possible.

God bless ~
Guinevere

[Makie1503]

Hi, thanks again. I've got lots of questions for my new surgeon next week. I really need this to get my life back but my legs go to jelly when I think of more surgery.
Makie1503

[tammylayne]

Getting a permanent colostomy might be the very best solution for you...and at the end of the day that it always what is most important!!

I was one step away from doing that myself in April of this year. 0 movements one day...30 the next. I couldn't do the things I wanted...go places...I was afraid to eat!

I started the daily enema as my last attempt before another surgery, all with my surgeons blessing. It has become my answer. I have my life back. Maybe one day it will stop working and I will once again consider other options, but for the last 6 months it has been my miracle. Search my threads or PM me is you want more details. it may not work for everyone...but it has for me. 30 minutes every morning and I am free 99% of the time until the next am....

Good luck with whatever you decide...