UOAA Discussion Board

Hi all!
I'm having issues and an ostomy may be in my future. Before I commit to anything other than I already have I want to get as much input as possible from people with experience. Ideally, a local support group would be a great place to start but in the era of Corona and social distancing, the internet has become the safer place to be. I have a bunch of (probably seemingly silly or dumb) questions and there are only so many YT videos one can watch and all too many canned medical pamphlets one can read.

A little about my situation:
I'm in my early 40's so no spring chicken, but still relatively young. I've been dealing with severe chronic constipation for the better part of a decade. There are a limited number of medications out there to treat this and my body seems to eventually build up a tolerance to each one. I'm on pretty much the last first-line med for chronic constipation out there. So this is the first issue. My second issue is a by-product of the first issue which is PAINFUL piles (haemorrhoids). I've already had one surgery to have SOME of the piles removed (unfortunately the most painful and deepest were not operable) and it was A LONG (~1 year) to near full recovery for me. I REALLY don't want to go through that again, but the constipation feeds the propensity for piles. My THIRD issue is that my colonoscopies (I've had several so far) keep coming back with a lot of polyps (usually 1-2 dozen). The pathology has always come back negative so far, but there is no guarantee things will stay that way especially as I'm getting older.

So my dilemma:
I'm running out of different medicines to treat the constipation and it can be painful. I currently have to plan my life around my bowel movements and I'm not happy about it (obviously!). The pills usually work like this 33% of the time "normal" healthy stools, 33% of the time a "fizzle" (no working at all, often accompanied by abdominal discomfort or outright pain), and 33% of the time what I call "const-arrhea"... which is a (usually single) movement that begins with abdominal pressure and hard PAINFUL anus-shattering hard-to-push (sorry to be to graphic) stools, followed by diarrhea, and ending with some more "neutron-star" stools. I don't want to face the piles surgery again, I am getting quite tired of the abdominal pain and running my life around pills that may or may not work.

Where I'm at now:
I've got a REALLY good GI who listens and really wants to help and keep me healthy. My problem with her is, at the same time, she wants to be "heroic" about things. She wants to try every drug, go through every different combination, and so on. She has said to me on more than one occasion, "I don't like surgery because once we take it out, we can't put it back!" If I do push for a surgery hard enough I believe she will stand by my and help in my decision. At this point I'm just not sure how to proceed. I don't link the way things are now, but I don't know if life with an ostomy would be any better (hence why I'm consulting those "in the field" here). I really wanted to get some information from people with real-life ostomy experience to see if going down the surgical route is even a good idea, or the whole chronic constipation thing is just my lot in life, and to shut up, deal with the pain and problems, and just "keep on keeping on." My objective is to make some sort of improvement in quality of life and to make sure I don't go the opposite direction, or to be in a place where any gain is offset by an equal loss.

Thanks for your time and putting up with a n00b with silly questions!

Welcome to our Discussion Board. Hopefully, you can connect with those who have shared your specific challenges. Here is a direct link to the United Ostomy Associations of America website: https://www.ostomy.org/ There you will find a wealth of info including first-person stories & a listing of local support groups with contact numbers for you to call. You may be able to linkup with someone near you.
Meanwhile, our Discussion Board is here 24/7 to help you also. Check out all of our Discussion Forums to see if you might be interested in a more specific category (Temporary, Veterans, etc.) to name a few. As you probably have noticed already from reading over the topics, ostomies are performed for a plethora of reasons & include many different types for people of all ages.
Thank you for joining us where I hope you will find many answers to your very important questions. Keep posting.

Hey Bandit,

The reasons for a person to get an ostomy are as individual as each ostomy. We all have/had a reason to get one. I can't speak to your particular circumstances because I HAD to have mine. Cancer doesn't give you much of a choice in the matter if you're wanting to hang around for a while. For me, I would say hang onto your original plumbing for as long as you can. While my ostomy helped save my life as it allowed for me to live while having cancer removed from my body, it has it's own set of challenges.
I'm assuming that you've pretty much reached the end of your rope with your current options. And, as I've said, I can't relate to what you are going through. I know others have said that they regretted waiting as long as they did to get their ostomy. For me, I never had any of your experiences. My plumbing worked fine...I didn't even have any real issues other than some anemia. Other than that, I felt fine...except for the anxiety of having cancer!
I can only imagine the struggles you've been facing if you've gotten to the point of searching out information about getting an ostomy. I won't tell you that having an ostomy is all sunshine and unicorns, because, quite frankly it's not. However, living with an ostomy is, at least in my experience, better than doable. I'm still able to do most of the activities that I've always enjoyed. My knees are giving me more issues these days than my ostomy! I still hunt, scuba dive, work, camp, play paintball, and try to act a lot younger than my age! Simply put, I don't feel limited by my ostomy, but when planning activities, trips, etc., it's always something I have to plan and account for....
All of that said, should you choose to get an ostomy, this board will be here to help with tips and advice on all things ostomy. I know this board was a life line for me during the early days of my ostomy and helped me get to the point where I am today....living a good life.
Hope that helps some.

David