Hey reddit friends:
I need some suggestions for what medical direction to go in, and stories about your experience if you have similar symptoms!
Symptom: I have to have 6-7 BMs before feeling complete. Before symptom onset in 2016, I went BM 1x a day in the morning. In 2016, I occasionally started feeling incomplete after my morning bm, and would just drink coffee to get out the rest. Then about every year I needed 1 more bm in order to feel complete. Fast forward to now, I have 1bm naturally (incomplete) and I need 5-6 more bms that I get out via use of I-love-you massage (thanks to PFPT for that trick). This takes me about 1.5 hours every morning, and then once complete I feel normal and can go about my day. If I don't massage, I will have 2-3 more BMs come out naturally over the course of 6ish hours, if I'm lucky, and I will still feel incomplete unless I massage out the rest.
IF I am not able to massage out the rest, I feel constipated and heavy/pressure on my LEFT side, until/if I am able to massage completely the next day. So, the left sided heaviness if my cue that I am incomplete.
Positive testing has shown:
Colonoscopy: Rectal scaring, hemorrhoids, "significantly tortuous colon"
Anorectal manometry: high resting anal pressure
Defacography: severe descent of the anorectal junction (10.6 cm); 3.9 cm rectocele; mild cystocele; mild uterus descent
Rule outs:
IBD; gyno/lady parts; cancer; colonic motility (sitz marker test normal)
Treatments that have not worked: pelvic floor PT 1.6 years total, oral and rectal steroids, anti-inflammatory medications; hormone replacement
Treatments that have helped, but not reversed any incompleteness: trulance (instead of process taking 6 hrs, it takes 1.5 hours); nifedipine to heal hemmerhoids /fissures; integrative medicine supplements for candida
Other than that, nothing has been able to reverse the need for massages. As far as treatment goals, I do not want to have to do that lengthy process every morning.
I saw a colorectal surgeon, and she offered a robotic rectoplexy for rectocele and sigmoid colectomy for tortuous colon, but was not confident in the surgeries' efficacy to eliminate incompleteness and need for massage. Nor had she heard about this type of symptom before. She did not even mention the severe descent of the anorectal junction (why, I have no idea).
I did not schedule the surgery, as I wanted to be more confident in the efficacy of the surgery, and ultimately want a surgeon who is familiar with this type of dysfunction.
I now have an appointment with a urogynocologist for this. I am hoping that the urogynocologist will be able to give me more confidence in the recommended procedure.
If you've made it this far, thanks for reading! Has anybody had a similar symptom? If so, what surgeries did you get that helped? Or, what treatments were successful? If anybody is several years out from surgery, are you happy you got it?