For everyone with an ostomy that was an elective surgery I was wondering what helped you make the decision. I also wondered what things I should consider and what questions I should ask my doctor. I don't need medical advice. I'm just wondering what things I should consider as in daily life with an ostomy. My GI doctor talked about me possibly getting a loop ileostomy or a colostomy if my issues haven't improved by the next time I see him. It's been almost 2 months since the major symptoms started and there's 0 improvement. I see GI in 6 weeks.

My urine problems are irrelevant so I'll just tell the story of my GI problems. About 2 months ago I fell. It seemed like an ordinary fall at first. Only a little back pain, but within a few days I was unable to have a bowel movement. I took extra miralax, exlax, and did enemas that all didn't work. Due to that and other reasons I went to an ER that did an x-ray and said my problems were consistent with constipation and sent me home with instructions of doing more enemas and a clean out with miralax. Later that day I had to go back to a different ER due to worsening symptoms and the clean out not working. After doing a CT scan they found out all the stool in me was liquid. I was admitted to the hospital. I then was incontinent for 24 hours. They did an MRI on my lumbar spine and sent me home after 3 days with no answers and me going back to the constipation problem.

The constipation problems got bad. I ended up being on 7 medications for my stomach and doing enemas twice a day with nothing working. We went to lots of ER's and during that time we were told to try GoLytly and liquid magnesium citrate. They all said it was a constipation issue and I should come back if I start throwing up because then I could get surgery. Nothing worked and eventually after 2 weeks they finally decided to do a lactulose enema. The lactulose enema worked and everything in me came out, but it was all liquid. Again no hard stool.

I'm gonna go past most of the details for the rest of the story and give you the overview of what I've been dealing with so that other people with a similar experience can tell me how they decided to get an ostomy. They basically did multiple MRI's of my spine and my whole spine is fine. They believed at first that it was neurological, but now said they ruled out numerological cause. I have pelvic floor dysfunction, but not bad enough to cause my problems. I can't get into the motility specialist until July. We're trying to get me into mayo clinic, but getting the insurance to cover that is difficult. My GI system just doesn't work anymore. Nothing comes out of me unless I do a lactulose enema. I'm currently instructed to do it every other day.

I still have no answers as to what is possibly causing this. I was told to continue pelvic floor therapy (which obviously hasn't helped my symptoms) and keep doing what I'm doing til I see the doctor again to discuss my options. I'm told that enemas are a bad long term solution. I'm also told that ostomy reversal isn't an easy process. I don't think I'd want to reverse it because even before the fall my motility issues were still pretty bad. However I'm worried about rushing into a surgery that I could very well regret.

I don't know much about this surgery and I don't even know what's causing my issues as all the doctors seem to have given up on looking for the most part. My aunt who had Crohn's died from complications of a colostomy surgery, so that's definitely something that's scaring me. I'm not even sure what about the surgery caused her to die because all my grandpa was willing to tell me was "They found cancer.". Nobody pressed for more answers than that and now my grandpa is dead leaving me with so many questions about a family member who died from a surgery that I might need to have. I don't want to end up like my aunt. I know I probably don't have cancer, but I'm not even sure that's what killed her in the end.

I know this is a long post, but I want people to know the full story so that I can have more people tell me things I should consider. I want to know what I should think about before deciding on whether I need surgery or not. What questions should I ask my doctor? Idk anyone else who's had an ostomy besides my aunt and obviously that wasn't a very positive experience so naturally I'm very scared. I never thought I'd even consider this surgery after what happened to my aunt, but here I am with the worst GI problems I've experienced in my entire life. Thank you for reading this post. I hope you can help reddit, because I'm so overwhelmed and lost.