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Peritsomal hernia repair docs - Rosemary

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Posted 5/8/2012 5:00 PM (GMT 0)
Penn wants the ileoscopy first. Then we need to find out if I have the peristomal hernia, then if so there is mesh issues or MT. Sinai uses porcine sometimes which minimizes mesh complications. Then what adhesion removal technique really works on the long term. Then there is the issue of impaired motility due to nerve damage to the small bowel from all it's been through. THis whole issue would require a meeting of the best minds in the universe and some imaging techniques to see what the heck is REALLY going on. TO think this all started with what turned out to be an unneeded pelvic organ prolapse surgery of prolaspes I did not have. What the h---- who would do that to someone and set them up for all of this?
Posted 5/9/2012 11:41 AM (GMT 0)
If they're really your friends, they're not going to drop you just because you have to have surgery in order to save your life! If some do, then let them go, they were not real friends to begin with. Just my two cents...
Posted 5/9/2012 12:05 PM (GMT 0)
Agree w/Cece..... you need to focus on yourself now, not worth the energy to be thinking at all about how your friends will feel. Deal w/that after the crisis has passed.

I remember a time when some new heavy duty drugs for mental health conditions were coming out. I had a friend w/PTSD who was in a bad way, and I was opposed to her taking the drugs, based mostly on an ignorant personal philosophy that the drugs were always bad.... well, she took them and got her life back, and I saw that, admitted I was wrong, apologized, and we moved on..... it's like that sometimes.... (and now I don't make any pronouncements about other people's treatment decisions, unless asked, and then I qualify a lot....) But point being, if the surgery makes you a lot better, most people will notice that and realize they were wrong....
Posted 5/9/2012 4:25 PM (GMT 0)
Yep good input. I really need to keep the focus on me in the now and use my intellectual and emotional capacity for that. Things will bear out, HOPEFULLY for the best for me, but I don't know. NYC tomorrow.

I did talk with the radiologist who interpreted the retrograde contrast enema and the CT enterography. She said no peristomal hernia via the CT scan and that is the gold standard for eval of peristomal hernia. BUT she said there can be one that reduces when you lie down, so she was realistic and qualified by saying things like that. Also the retrograde enema xray through the stoma, she said as she did not do it she could not say if an issue at the stoma itself though I said they had to use the tiniest catheter. She said the bowel loops that did not displace easily when they tried to move them around to get the dye through means they likely had some adhesions that had them stuck together some side by side but that did not narrow the lumen. Then the dye went through. Maybe the issue is that the bowel loops cannot move freely so there is a bit of a hang up with food going through. She said the ileoscopy the best to eval for stenosis at the stoma. She seemed realistic and answered all my questions.

So tired and drained .Am doing this online consult with Cleveland CLinic. Gotta get back to that and call and ask what to do if they do not have the condition listed in their menu of options. Feel like just taking the day of from this, but if I don't do this work nobody is going to. I dreamed last night that I never went through any of this. HOw nice that would be. Rosemary
Posted 5/11/2012 2:53 AM (GMT 0)
Saw a great doc at Beth Israel NYC today. He checked me for peristomal hernia and said nothing obvious but there is obviously something up or I would not be having all these issues. So he took the DVD Of the CT scan and said he would go over it in detail on his computer. He said proceed with the ileoscopy as planned at my current hospital still on for the 22nd. He was VERY nice and totally got the point that I was in some type of difficulty. It was very nice of the person I contacted by email with my symptoms to get me seen so fast. So, long travel day but very worthwhile.

Rosemary
Posted 5/11/2012 3:32 AM (GMT 0)

Y A Y !!!

 

Huge step forward and hoping for NO steps back, this time :-)

Posted 5/11/2012 3:39 PM (GMT 0)
Thanks. I still have a LONG way to go. Have not heard back on his read of the scan but I was a squeeze in. the other hospital, Mt. Sinai, had to postpone my appt there until after the ileoscopy but maybe that is all for the better as by then I will have the ileoscopy report. Just gotta keep going til then. I am soooo pale my red blood count must be way down. Sure wish I was using all this technology for travel and fun stuff, but am using it to save my life or try, so definitely worth it.

Am doing an online consult with another hospital and sending all reports, etc. so continuing to do what I can. Hoping between everyone we can come up with a solution to get this stoma working again. Thx, Rosemary
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