Considering an Ostomy - Seeking Input on Quality of Life

I currently do not have an ostomy but am seriously looking at getting one and I would appreciate the input. If this is the wrong place to ask, please let me know.

I have struggled with severe constipation my whole life (since infancy) and have literally tried everything (pills, diets, therapy, etc.). I have had all of the tests done and everything comes back normal, much to the confusion of all of my doctors. I only have a bowel movement once every 4-6 days, and it is an all-day process. It takes my body 24 hours to recover before I can actually get out of bed and function.

I have had many gastroenterologists, and my current one of 3 years has given up on me and has sent me to a colorectal surgeon. I went to one, and she said if it really is a hindrance on my life (which it is, as I cannot hold down a normal job as there is no way for me to track when it will happen and I cannot leave the house when it does), that she can offer me an extreme option, which is an ostomy. I ended up getting a second opinion, and they agreed that while extreme, it may give me back my quality of life and that she has done this procedure for others similar to my age (25). It is difficult, however, for me as I do not have an actual diagnosis. And I have been told that because I do not have a diagnosis and because they don't know why it is happening to me, that I will have it for the rest of my life with no option of a reversal.

My question for you all is, for those of you who felt homebound before (as I do), do you feel more freedom after? Or less? I know that there will be challenges and that it is not a cure-all, but I have tried all other options and there is nothing more they can do for me. Any thoughts would be appreciated as I am at a loss and feeling very discouraged by all of my options.

I have had an ileostomy for 2 years and a permanent colostomy for 3 years! I feel very secure when leaving the house! I have also been on dating sites for 2 years! Good luck!

Hi Bluedog,

I've never heard of your condition, but my guess is that it's pretty rare. I just wanted to say a couple of things. You say if you have an ostomy, you'll have it for the rest of your life. Maybe not. Just because they don't know what's causing it now or what to do about it, doesn't mean they won't figure it out in the future with other people who have the same condition. If that happens, you might be able to have a reversal. If they never figure it out, then you would seem to have nothing to lose, as your quality of life doesn't seem to be very good at the moment. You may be able to get a descending colostomy and irrigate. Irrigation can usually take care of constipation issues. You would definitely have a lot of freedom back then. If you need to get an ileostomy, you would still have much more freedom than you seem to have now. I don't know exactly what kind of surgery and ostomy you'll be having. Would they remove your entire colon? It's a big decision and I know it must be a hard one...especially at your age. You might even consider a third opinion. I'm not sure where you're being treated now, but maybe you could go to a place like the Mayo Clinic. I think they have a site in Arizona and they have a very, very good reputation...

If you decide on the surgery, I'd just like to say that there are worse things than having an ostomy. It's really not as bad as you may think....

I wish you the best in whatever decision you make...Stay strong!

Hi Bluedog,

I certainly agree with Weirdnewlife but I did not have an option as most of us don't. Cancer was my reason for an ostomy and just the first few months were rocky but I live my life as I always have and because I irrigate too, my ostomy is no longer my first thought when I plan a trip or go shopping, whatever! Life goes on and yours seems to be very difficult now! Medical technology progresses so quickly, we all may have it easier in the future and they might just find the cure for all of us! I am hopeful and having worked in oncology, I saw the progress made in cancer treatment! It no longer means what it once did to get news of cancer! And who knows, an exploratory ending in an ostomy may just let them see the real problem!

Good luck and keep us posted! My first wish is for you to be cured of this terrible issue and never have to have an ostomy but it is not bad having one, you just plan differently!

Puppyluv

Bluedogprinter,

Because of Crohn's disease, I opted for an ileostomy at age 23 because like you, my quality of life was dreadful. Taking medications all the time, having to know where a bathroom was close by, constantly in pain, it all sucked. After the surgery, my quality of life improved 100%.

I say if there are no other options, go ahead with the surgery. Just make sure the surgeon is a good one and doesn't screw up creating your stoma. Too many horror stories on here about stomas being flush with the skin and leakage problems.

Do your homework and research the hell out of ostomies before you make your decision. There is a lot more accessible information online and YouTube videos than there was when I had to make the decision. And you will find a lot of support from members here. But if you are as miserable as I was, this may be a godsend. Good luck and let us know what you decide.

Bain

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Reread all the above advice, all good. However, why do your docs tell you it is permanent? Those of us who have had an injury or cancer that has damaged parts of our digestive systems resulting in an ostomy have no choice. Your ostomy is not reversible if you no longer have a rectum or anus, and for some, their colon. As you are not diseased, and you have all necessary 'parts', why can't you get a reversible colostomy?

FIND A GREAT SURGEON. You may wish to have a colostomy, only to have your problem diagnosed later and wanting to go back to 'normal'. A reversal. Or not. There are horror stories here about botched reversals. As you may have the option of a successful ostomy, be sure your surgeon is skilled at doing reversals.

Find out why everyone is telling you it is permanent. You can have an ostomy and still retain all of your lower digestive system. Know ALL your options. You have your whole life ahead, so be sure you leave all options available open to you.

I'm jealous. Although rectal cancer took the items necessary to 'go' traditionally and I can never have a reversal and I've had no problem with my ostomy...I have to empty it often. Several times a day. My pouch is never empty, always some little turd sitting there waiting to be emptied. I'm envious of those who have a 'once a day' habit. Like you, I've always been this way, it is not a problem that developed due to cancer. I guess I'm just full of s**t.

Those who have less frequent bowel movements are great candidates for irrigation. With your system, you'll probably have to irrigate about every two days, or less. Many irrigators on this site with years of experience. Find them and ask everything. A colostomy with irrigation will greatly improve your quality of life, and you'll have the control you need over your own digestive system.

This is a big decision, but as it is not without positive options, consider it seriously. Again, research reversal and know all your options, although you may find the change so empowering you may never want to go back, but YOU CAN and that's huge in your decision.

Let us know, as many of us have 'no choice' ostomies, it will be interesting to read about your decision, how it goes (no pun intended), and how you and your life fare with a new, but useful belly button.

OH, be prepared for surprises...with all the imaging and tests available, until a skilled surgeon gets in and looks around no one can really be definite. You may have an unusual situation in your digestive tract that cannot be detected (yet) by non-invasive tests. A surgeon may find something completely unexpected. As you've had this since birth, maybe not, but strange things happen every day.

Keep your mind and options open. No matter what happens YOU make the BEST decision for YOU.

Bon Chance and God Bless

dls

My ileostomy was preventive surgery when I was 19, almost 50 now! As I have FAP, I never had any problems or a day's illness, so can't say I know how or what you're going through. But in my case, I wouldn't change a thing. Ileostomy has never stopped or held me back from doing anything I want and going anywhere I want.