Hello all,
Life seems to have become unmanageable again. My morning routine of rectal irrigation does not seem to be working like it once did. On average I only have 1 or 2 days a week where there is no leakage or discomfort.
After irrigating the anal area feels sore and irritated but I load up the area with coconut oil and this generally dies down after an hour or so. I still constantly check throughout the day due to anxiety, and for a few hours the anal area is dry with no sign of leakage.
However, usually by the early evening my anus start to feel uncomfortable, itchy or slightly burning with a horrible feeling of wetness. When I check at this point, I usually find that the area is moist and kind of sticky to the touch. The anal opening also seems a little more open than usual. The issue is that since I have irrigated in the morning, the leakage is small and not stool-like. It seems pasty and pale - although sometimes it certainly has a pale brown stool colour, and it collects about 1cm inside the anal opening.
Sometimes I think I am going mad, and that this is an obsessive level of cleaning and checking. But the residue is there, and it is difficult to clean. I sometimes make myself very sore trying to clean it properly, but once I do the discomfort lessens.
None of this makes sense any more. And I don't think that any healthcare professionals will help me - I'm sure they will just chalk it up to anxiety and/or depression.
I know that my muscle is weak as my surgeon's notes from my check up mentions the "hypotonic" muscle (I find putting coconut oil inside my anal opening utterly crushing now, as my finger just seems to slip in with very little resistance - this is not how an anus should be, no wonder I'm experiencing leaking). I know there is an LIS defect between 1 and 5 o'clock on the internal sphincter (this sounds big to me) and I know that the surgeon cut up to the dentate line.
What I don't understand is how can I still have leakage problems after I irrigate each morning? Is the leakage stool or mucous or both? How can such a small amount of leakage cause such discomfort? What the hell can I do to help this situation? If I clean too much I get sore, if I don't clean enough I get sore. I am going insane, I can no longer trust my own perceptions, and everything feels out of control and hopeless.
I have no hope for this to get better. It's coming up to 5 months since my LIS and things are getting worse, not better. People keep telling me that I will get through it, I shouldn't look back as I can't change what has been done. I should focus on the present and be positive about the future. This is all well and good, but I am consumed with regret about the decision I made to have surgery, the present is filled with disgusting cleaning and checking routines, and I feel nothing but fear about the future and guilt for all the misery I'm causing all those around me.
I have become so pathetic and weak. I have phoned the Samaritans nearly every night for the past two weeks. I am incapable of helping myself, I am squandering the help of my friends and family, and I know that medical help is not feasible. I cannot go on feeling like this, and there doesn't seem to be a way out that won't hurt people. I feel like I have trapped myself in a corner and the only choices I have left will cause hurt to those around me.
I feel terrible posting this on here, but with the endless wait for NHS appointments I can't get any help with these issues from anyone with any knowledge on the subject except for you all.