Hi Stephanie, I am pretty new to this site and I hope this isn't too long winded as I tend to ramble. I am about 3 months post take down and struggled so much up until about 2 weeks ago. I was at my wits end. I was averaging about 15-20 bowel movements a day. Suffered terribly from constant spasms that would incapcitate me for hours. I wont even mention how irritated my rectum became. I had tons of gas that seemed to irritate everything no matter what I ate or used to avoid it and didn't seem to help. i.e. beano/gasx/probiotics. I was so miserable and frustrated and I know my poor surgeon was as well but she hung in there and we tackled each issue systematically and finally I am feeling like I have turned the corner and well on my way now to feeling better. I know everyone is different and respond to things differently but here are some of the things we tried through trial and error and maybe you can find some of it useful:
Rectal irritation - Use a good barrier cream, Calmoseptine and Resinol are 2 that I found worked the best for me. I also used Balneol lotion on my toilet paper. It is an over the counter lotion my surgeon recommended that I found so soothing. My surgeon also prescribed a cream that had an anesthetic in it. There is an over the counter one that I use now called Dubacaine. She also prescribed Canasa Suppositories for me too as she felt I had a mild case of cuffitis but because of my frequency issues had a hard time holding it in. I also used baby wipes or wet toilet paper or toilet paper with the Balneol lotion on it instead of dry paper. Some folks use a bidet but I don't have one unfortunately. I also did alot of sitz baths...still do now as I find taking a bath relaxing as well.
Spasms - My surgeon finally prescribed some Levsin for the spasms I was experiencing. The spasms were very strange. They were not in my rectum but rather right next to it, almost in my left butt cheek and entire pelvic floor area. The levsin seems to help alleviate those along with pain meds but took awhile. I guess the spasms are fairly normal in the early stages post op but knowing that didn't seem to provide me much comfort. I also found soaking in the tub helped with the spasms too.
Frequency - She prescribed me some lomotil to take 4 times a day in addition to using over the counter Immodium.
Gas - For some odd reason, diet (avoiding gas causing foods), beano, gasx, probiotics (been taking VSL3 since my first surgery), natural remedies of ginger/peppermint, did't seem to help. The surgeon also had me try a prescription medication called Carafate thinking maybe I had a stomach irritation that was creating the gas and that didn't seem to make a difference or help. One day when I was at my wits end decided to take a swig of good ole pepto bismol and to my shock, what do you know, it worked. My surgeon is still perplexed by that but still use it to this day. For some other odd reason I seem to experience the excessive gas issue more around the time of my period.
Things were still moving very slowly, still suffering from high frequency, spasms, and gas so about 3 weeks ago she decided that it was time to possibly consider that I had a case of pouchitis. Instead of scoping me, she said at this point she just didn't want to put me through that, just prescribe me a round of Cipro and Flagyl to see if that allieviated some of my symptoms if it did, great and if not, we would keep working on finding the solutions. Well, within 2 days on the antibiotics I felt SO much better.
I am now averaging about 6-10 bowel movements a day, my spasms have pretty much disappeared, since my frequency is down my butt burn/rectal irritation has decreased immensely. I am still taking the Lomotil and Levsin but don't have any need for the pain meds anymore and only taking the Immodium if and when I might have high frequency like 3 or 4 BMs within a half hour period.
So things are finally starting to turn around. I think all of this in addition to a surgeon who was very supportive, listened and worked to get me to a place that I thought I should be at I finally feel I have turned the corner. Again I know this was pretty lengthy but I hope you might find some of the information helpful.
