FDA GI Committee Gives Thumbs Up to Solesta

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Pinky
Dec 04, 2010 4:00 pm
December 2 the GI committee of the FDA gave the "thumbs up" to Solesta, a series of 4 injections into the rectum that reduces the incidence of fecal incontinence (aka "pooping your pants") by 50% in clinical trials.

http://www.medpagetoday.com/Gastroenterology/GeneralGastroenterology/23708

Now, some docs "pooh-poohed" (groan) this as not a big deal; however when I had my reversal I would have been ecstatic with half as many accidents!  And while my permanent colostomy was done for pain and irreversible radiation damage, I've read many a post on this site by colostomates trying to decide whether to try a reversal.   The clinical trial was done on 50-60 year old "intact" women, so we'll have to see whether the 1) the FDA takes the GI committee's advice and approves Solesta; and 2) whether it can be generalized to a larger population.  Whatever happens, I still thought it was worthwhile to pass on.     



My life was hard with the reversal, and accidents was one of the main reasons: for example, I felt an accident coming on in grad school class, excused myself, realized I needed to go home to clean up, told the professor, was publicly humiliated by her, and dropped the class.  That was rough.  I would have preferred to NOT have that happen  

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I've also had embarassing incidents in class with my colostomy - gas, groaning, dumping, whatever.  So it's a toss-up and preference - as for me, if Solesta would have been available back when a reversal was possible for me - you're damn right I would have tried it!     

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gutenberg
Dec 05, 2010 9:53 pm

Hi Pinky, after reading your post, I'm sitting here still burning under the collar. It's not bad enough to be an ostomate, but to be humiliated by a supposedly professional goes beyond the pale, makes one want to slap the person with a half-full pouch. I know I'd lose it and let loose with my finest vocabulary, Ed

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Pinky
Dec 05, 2010 11:10 pm
Thank you, Ed!     

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      And since her own mother had died of colorectal cancer, you'd think she would have been a bit more perceptive and sympathetic!
WOUNDED DOE
Dec 06, 2010 2:37 am
I agree Ed.....made me angry reading that too.........sorry that happened to you dear Pinky, humiliation comes easy enough just having the ostomy in certain situations, we certainly don't need some lunk-head insulting us under any condition

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     ....and Pinky, oh do I ever understand how embarassing it can be trying to get through ANY school or like-environments with an osty when it comes to uncontrollable grumbles or gas and such.....having this ileo since I was ten years old, it was quite the emotional chore getting through Grade School, High School, College courses etc and quiet work environments in Offices....argh.....and sitting in church as a small child when all is quiet and something osty-related happens beyond ones control, only to get that human humiliation by people who can scold and punish you for "letting" those sorts of things happen :/    I bet most of us on this site have our stories about this sort of thing..... ((sigh)) .....  I love your posts Pinky, always so informative and so very kind

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  hugs to you from your Doe

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beyondpar
Dec 06, 2010 5:32 pm
I feel everyones anger and pain,  and it saddens me too as I too have found myself in the most emabarassing of situations,  and in truth society does not accept #2 incontinence in any way shape and form and sometimes even looks at us as if we are the problem...Talk about insult on injury...............Looking back and living through it still baffles my mind.  " Why doesnt anybody understand"  would go through mymind like and endless reel of film......24/7/365.....The fact that i am somewhat sane today is a miracle.



How I have come to put everyone at bay is to take away any ammunition ( verbal barbs or slurs or negative comments) from any situation that might arise,  because in truth, having the ostomy will and should allow more control with regard to every situation, whether its gas, or output or even accidents.  I therefore inform everyone of my medical history and softly tell them all my innards have been removed and i wear a tiny pouch in my front..........that pretty much silences the masses....Problem solved as nothing will ever be said to make me feel awkward or even embarassed.



In my opinon the act of losing control of ones bowels , through the anus, is and was the most debillitating thing to ever happen to me and it had been happening for  7 years.   Needless to say I lost my mind........Literally.........I too have had an accident or two with regard to my clip or pouch unrolling and that too while not the most pleasant,  was nothing close to the debillitating effect of my prior life, and remember all those people who now know of my innards story.  the became empathetic and not slanderous if you will .........



A good ending to a very unhappy loss of bowels life........So therefore I have come to embrace my ostomy for  all that it gives and never a second thought at what life could have been like without it, because my life without it would be over

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Carolw
Dec 08, 2010 2:31 pm
A year on and find it very hard to trust people ,people I thought who where my friends had asked me out to a concert , on the way home in the car I had an explosion with winnie .The so called friends where nurses that I worked with, knew of my past long history( having 11 trips to theater in 2yrs) took it upon themselfs to tell others in the staff room the next day.Its hard enough trying to exept this bag that I have to have for the rest of my life through damage that was done from a small operation for piles,let alone worry about who I can trust.At the moment my head is so mixed up I just cant wait for me to get out of this dark place Im in .
lottagelady
Dec 08, 2010 5:34 pm
How awful Carole and Pinky .... I can honestly say no-one has ever made any nasty comment or anything about mine - not in front of me anyway, and nothing has ever got back to me either ....

I wonder if maybe it's the fact that I am not particularly bothered one way or another - I usually tell people anyway and generally tell them the 'funny' stories about the damned thing and have a laugh about it ...not that they were funny at the time mind!  



It does seem that if I do ever go out for the day/evening, my bag seems to know and bloody explodes so I am covered - happened the other night at my daughters' performance of Evita at their school - no disabled loo or a loo suitable for changing in (was offered ther staff toilet but it just wasn't conducive, and it had gone beyond that anyhow by the time I had found it had burst ..... so, I stuffed my knickers and trousers with plastic bags and hand towels and went for a boogie with my girls! Nearly killed me, but I enjoyed it! It was another 2 hours before we got back home so you can imagine what state I was in by then .......(and my 15yr old daughter helped me peel it all off, bless her!)



Reading everyones stories about reversals and accidents afterwards etc etc is giving me the thought that I will keep my plastic friend, as I would far rather go through the above than loose control of my bowels whilst out - I have had 10 lots of surgery to my anus and pelvic floor and I just do not know if I will be able to 'hold it in'? It is likely that as I have Fibromyalgia as well then I will have IBS as one of the symptoms ..... really not sure .... suspect my surgeons think that I have completely lost it now!



Chins up all ..... (not that mine has been - sorry to have been missing for a while ....)



Rach xxx
Pinky
Dec 13, 2010 8:33 pm
Thank you ALL for your wonderfully supportive posts.  What can I say except that professor was a complete bitch to me anyway - I have to assume it was due to my age - and who did I think I was going back to school AT MY AGE!!!  Also - if truth be told, she was always after the young male students and maybe saw me as competition  

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I know the above was quite "snarky" of me but who cares?



Beyondpar - your eloquence in describing your experiences amazes me always!



ALL OF YOU are why I love this site.     

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