Seeking others with DDD and ileostomy surgery

I was diagnosed with Dyssynergic Defecation Disorder which led to me getting an ileostomy. I haven't come across any other ostomates mentioning they have the same disorder as me. I was wondering if anyone out there has DDD, or knows of anyone with this disorder, that either had an ileostomy done, or another type of surgery to correct the problem. I know it's a very rare condition, but I hope there's someone out there that I can talk to.

Gemini

No, but we can talk if you like.

Hello Gemini16.
Thank you so much for posting about DDD.
I had never heard of this condition before, so I looked it up ( https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4930297/ ).
From what I can gather, this condition is grossly underreported rather than being rare. It is possibly not diagnosed, partly because patients are reluctant to describe accurately the condition and what they have been doing to try to rectify it. Also, partly (Mainly) because physicians are not familiar with the condition, the diagnostic criteria or terminology.
I found this article fascinating and so relevant to anyone who has ever had constipation problems, as it discusses a whole range of conditions surrounding this subject, as well as DDD.
The article gets a bit technical at times, but it is full of useful medical, social, and psychological information about the sorts of bowel conditions so often discussed on MAO.
In short, I would recommend referring to this article for educational and enlightenment purposes for many of us who have suffered with constipation prior to having a stoma.
Best wishes
Bill

Hi Bill,

After seeing numerous doctors and being misdiagnosed so many times, in 2013 I finally drove to Mayo Clinic, where they diagnosed me with PFD. It was recommended that I go through physical therapy to help my condition. I also tried biofeedback, Botox injections, nerve block injections, etc. And nothing helped. I ended up in the hospital so many times for malnourishment and when my condition got unbearably worse, I quickly lost 30 lbs. Every time I went to the hospital, they said they couldn't help with my issues, and I was only there for malnourishment. I ended up on TPN. I finally went to Temple, went through lots of testing, and was diagnosed with DDD, after 11 1/2 grueling years of suffering. Temple recommended doing biofeedback again. I declined. I was in desperate need of help. My colon was the size of a grapefruit and I was bedridden. I found a surgeon in NJ that suggested I get an ileostomy, and out of desperation, I went for it. I still have issues, and am seeking more help. I do hope there is someone out there, on this site, who may have this condition, it would be nice to find someone to talk to.

It's nice to know that there are people on this site who truly care.

Your reply is greatly appreciated.

Thank you so much for caring,

Gemini

Hello Gemini.

I too, hope that there are others on this site who will join in a conversation with you about this condition as I am keen to learn more from those with experience of it.

Best wishes

Bill 

Words of Encouragement from Ostomy Advocates I Hollister

Hi Gemini, I think it's very possible I have the same condition, although it was never diagnosed as such. I have had constipation problems most of my adult life and they only increased as I aged. I am sure I went through every test there is available and tried every new medication that would come on the market over the years. Some would work, but only for a short period. My gastroenterologist always said that I had a "lazy bowel", that the muscles just did not work to move the stool along. I lived on laxatives but did not have a very good quality of life. About a year ago, my large intestine perforated and I ended up with an emergency colostomy. My problems only increased after that and I had several bowel obstructions just from the stool backing up behind the stoma. Now I am still in recovery from a loop ileostomy, less than two weeks post-op. Things seem to be working, but my output thickened very quickly after surgery and slowed down. I have had to increase my sugar intake by drinking fruit juice which has helped a lot to move things along. I am cautiously optimistic but it's a little early to tell. The hope is that this will work and they can go back in to remove my large intestine and close up the colostomy site. You said you are still having issues with your ileostomy. I would be very interested in knowing what kind of issues you are having. This is a last resort for me, as if it doesn't work, they will reverse the loop ileostomy and I will be back to taking massive amounts of laxative.

Regards,

Terry

I had a similar situation to you for needing the ileostomy.

I have the same issue since birth. I had to have a full colon removal (my colon didn't work at all) then a year later my ileostomy due to this condition. Took them until I was 36 to figure it out lol.

We have very similar histories. They didn't figure it out for me until I was 68! To be fair though, my bowel dysfunction didn't start until I was in my early twenties, and gradually got worse over the years, until finally my bowel perforated and an ostomy was the only choice. Still, it wasn't until the ileostomy that things got better for me, as the large bowel was pretty much useless, it just didn't function. Since that last post, I've had the colostomy site closed up and the large bowel removed. I only need to drink lots of water to keep things moving, and life has become much better. I had always been totally freaked out at the idea of an ostomy, and was not open to it when my doctor discussed it with me. That bowel perforation was actually a blessing.

Terry

Hi Gemini. I have dysenergenic as well. Please message me so we can talk. I really need the support too.

May I ask who the NJ surgeon was who did your ileo?

Hi Gemini16. I have this condition. I would love to talk. Please email me at schankadyalcaps@gmail.com