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! (By the way, 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 early May - 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 not improved at all - in fact, they 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 now, 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 it quickly deteriorates after lunch. And it's mostly an unstoppable deluge thereafter if I sit too much (previous issue) or now lie 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't do a thing, and the urologist tells me the 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 rehash 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 not fair to us. My son, now 10 years old, has had an ileostomy since the age of 5 years! He was constipated from birth until 5; he was in so much pain, doctors never listened, told me at 6 months he is a lazy pooper, get a grip. How can that be a child at that age's choice? Then at 3, he's not eating the right diet. This is my child who would choose a banana over sweets. He hated it. Then I gave him prune juice at 2 years and told the doctor if nothing comes out, there is a problem. It didn't come out. He was in the hospital when he was 3, 4, and most of 5 years old. 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 doctor told us 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 finds some help for you. Get grumpy with them and say this isn't good enough. I don't know what you are going through, but I understand some of it that I haven't mentioned 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 you out! They are cloth but hidden cloth. Disposables 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! :)