My doctor's have brought up the possibility of me getting a colostomy a few times. They ended up not doing it every time. It's been about 6 months of my worsened symptoms and nothing is working. For the past 5-6 months I have only been able to have a bowel movement with a lactulose enema.

I have to do these enemas every other day and I'm so tired of it. My doctor's keep telling me they think a treatment option will work and then it doesn't. There's only one medication I have left to try and currently I'm on the lowest dose of it. Mestinon has been doing nothing for my pelvic floor so far. I can hear my intestines gurgling and growling a lot after starting it, but my pelvic floor muscles still aren't working right.

The pelvic floor therapist said she couldn't help me, because when I'm supposed to push my rectum squeezes instead. I don't have much sensation anymore so I can't tell the difference between pushing and squeezing. Nonetheless I've already done 2 months of pelvic floor therapy and 3 sessions of biofeedback therapy with no luck.

The doctor's said they didn't think I'd need an ostomy, but that long-term enema use was harmful and they think I should get one if the treatment options don't work. My parents are supportive of me whether I get the ostomy or not, but the rest of my family and friends don't think I should get one. They keep telling me stories of family members or friends they know that got one and later died.

I feel stressed out and Idk how to deal with all of this. I don't want the ostomy, but I don't want to keep doing this whole process every other day. I'm tired of the pain and loss of independence. I've been chronically ill most of my life, yet these 6 months have still been extremely hard. I mostly just want to be able to manage my condition myself so that I can live independently and to not have such a mundane activity take up so much time in my day.

I feel like I'm crazy for thinking a surgery would be better than my situation. I feel like nobody in my life understands what I'm going through. The doctor's won't even tell me how much longer I can safely keep doing enemas. I'm exhausted and I just want to know what my medical plan is going forward, but getting doctors to be honest with me about what treatment options I'll need is so hard. I wasn't sure where else to vent to.