BB part 3

I wish I could say all that surgery back in December did its job, but the fact is I almost feel a worse quality of life than before! (btw: the surgeons left in a drain that was supposed to come out so I had to go back in for outpatient surgery to remove it in earlyMay - it actually turned into a rather bigger deal than that and left me in rough shape again all of the month.) My urinary problems have improved NOT AT ALL - in fact are worse than before surgery. The fistulas were successfully closed but I guess in exchange (in the sense of the universe's reckoning system) my incontinence is literally total nowif at least coming out the right orifice. Apparently the nerves regulating the bladder have been "compromised"!


Mornings are good - more energy than before -right after my daily colostomy irrigation I can walk the dogs for miles - but quickly deteriorates after lunch.Andit's mostly an unstoppable deluge thereafter if I sit too much (previous issue) or now lay on my side in bed, which used to be my one escape from pain. And I can't emphasize how painful it is to lack a tailbone and part of a sacrum! The up and down to the toilet goes on all night as even the thickest incontinence pads are defeated. Where is all that fluid coming from? Meds don'tdo a thingand the urologist tells me next thing to try is BOTOX injections!?


The Barbie Butt part has actually been the least of the problems so have no fear of it! At first it was very strange and psychologically quite shattering, but I've adjusted. I had to deal all over again with my anger toward my ex-husband, since in my pity party over the additional Frankenstein-type scars running down my thighs where they harvested the fistula-fixing tissues, I re-hash how different it would be to have a supportive partner in this ordeal. Then I shake my fist at the universe and ask how much one person should have to bear alone - and I swear I hear... laughter! :D

I don't know what to say but sometimes life is no fare to us. My son now 10 yrs has an ileostomy since the age of 5 yrs! He was constipated from birth until 5, he was in so much pain, drs never listened, told me at 6 myths he is a lazy pooer, get a grip how can that be a child at that ages choose, then at 3 he's not eating the right diet, this is my child that would choose a banana over sweets.he hated then I gave him prune juice at 2 years ans told the dr if nothing comes out therevis a prob. It didnt come out,, Was in hospital when 3, 4 and most of 5 yrs, then they did a biopsy at 5 when he was to start school, NO NERVES IN HIS LARGE INTESTINE, NO WONDER NO POOS! HOW DARE THEY TAKE THAT LONG, OUR DR TOLD USE TO LEAVE HIM UNTIL HE DOES POOS,,10 DAYS NO POOS,, THEY LEFT HIM FOR 27 DAYS, I was so angry, sad, but I can't imagine what you are going through but I hope someone fines some help for you,,get grumpy withthem and say this iisn't good enough,,I DONT KNOW WHAT YOU ARE GOING THRU BUT I UNDERSTAND SOME OF IT THAT I HAVENT MEMTIONED ABOUT BEING WET WE HAVE BEEN USING MICROFLEECE PADS IN A DIAPER AND THIS DRAWS IT AWAY FROM YOU, IF YOU WANT TO KNOW MORE ABOUT THESE I WILL HELP U OUT !! THEY ARE CLOTH BUT HIDDEN CLOTH, DISPOSAL S ARE SO EXPENSIVE!!!THINKING OF YOU pinky,Cheers Julie ( mum of son Griffin with ileostomy)

Thank you for your story, Dragon 2. It is ghastly to imagine what you and your little guy have been through and in such a remote area! You are brave souls, no doubt about it! Hang in there! :)