Dyssynergia

[Katiescarlett]

Hello,
I am new to this forum. I have dyssynergia and feel my only choice is to get a colostomy. I have a painful prolapsed hemorrhoid, internal hemorrhoids and my pelvic floor muscles do not coordinate. I struggle with incomplete evacuation and pressure. I have no quality of kife. I've had this about 12 years, only getting worse. I feel like trading one bad deal for another, but I think with a colostomy I could get my life back. Anyone out there with the same problem and had gotten a colostomy?

[SunnyMom]

OMG! I registered just so I could respond to you because I have some of the same problems! That is why I was cruising this board and looking for ostomy information. I have Ehlers-Danlos Syndrome and everything that goes with it, so I've had collapses and prolapses and pelvic floor problems. I have had a surgical consult for surgery. I'm going back for a followup soon. It is just so much hell not being able to empty, but I've found the liquid suppository plus enema almost everyday does help me a lot.

[BillGK]

I don’t have your condition, but I do have a colostomy and I lead a normal, pain-free life. Except for the fact that there can be problems with colostomies such as hernias and skin issues, I would tell you that if your doc says it will take care of your condition and let you have a life you should have nothing to fear, really, with a colostomy insofar as managing it is concerned. And there are some distinct advantages, such as when you are the 14th hole, the furthest point from the club house, grin. But, there can be the sorts of problems I mentioned. In the end, if your doc is confident that this will give you a life you are weighing a strong positive against the normal surgical risks as well future risk of complications. I know what I would do, if I were a good candidate for surgery.

[lms1]

Hi,

I had a colostomy in 2009 because I have a neurogenic bowel due to a spinal cord issue. I had chronic constipation for years. The ostomy fixed all that. One thing for both of you to consider is whether you get a colostomy or an ileostomy. If you search this board for pelvic floor or similar terms you will find folks who have opted for an ileostomy over a colostomy. Welcome to the forum.

Good Luck,

Linda

[Diane C]

I had the same diagnosis and tried biofeedback, galvanic stimulation, botox injections, you name it. I did try a surgery called a Malone Appendicieal (or Antegrade) Colon Enema (MACE) procedure first. If your sphincter muscles are dysfunctional, a MACE surgery will not help but you might ask your surgeons about it. In 2002, I did get a colostomy at age 50 at the Cleveland Clinic. For a while, it helped quite a bit and one can "irrigate" with a colostomy. (See the Irrigation forum for info on this.) However, the motility in my colon just was not up to par and I wound up with an abscess and strangulated colon even with the colostomy.

So, in November 2018, I finally opted to switch from a colostomy to an ileostomy. This is a very personal decision and everyone is different. I'm finding the constant flow of the ileostomy hard to get used to although I do use Immodium to slow it down. I also have small intestinal bacterial overgrowth (SIBO) so there's still quite a bit of gas which I had not anticipated. I'll be working on this with my excellent GI doctor. Overall, I think most would agree that a colostomy is easier to handle but it depends. I was still constipated with that surgery and now I am not which is a big relief. With a colostomy, over time, you can regulate when you have output. You can't regulate it with an ileostomy but you won't have to deal with constipation again.

Good luck making your decisions and be sure to ask your surgeon (whom you should trust) many questions.

Diane C

[Nann-55]

I’ve had pelvic floor dysfunction and Chronic Constipation; slow transit colon: I had to Have ileostomy because a colostomy would not work for me because the colon basically stopped working. My entire colon was removed and I no longer have to go through the sickness and agony of trying to have a bowel movement. As I got older the symptoms became worse. I tried everything so 4 colon surgeries later I now have mental and physical relief.