BOAT, HOW ARE THINGS GOING?

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esoR
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Date Joined Jan 2007
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   Posted 6/4/2011 10:21 AM (GMT -6)   
Hi Boat,
 
On my way home across the Atlantic and thinking of you.  Is the PT helping any?  Or does it look like an ileostomy is in your future?  Did you ask the doc about referral to one to tries Botox shots?
 
I don't even have a theory about what happened to you, as prior to your colectomy, your pelvic studies came back great.  Then in surgery your resection was not done too low.  But somethings have no explanation.  Best wishes with however things go for you.
 
Thinking of you.  Rosemary

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 6/6/2011 3:11 PM (GMT -6)   
PT hasnt been helping. Its been about 6 weeks now but I will keep going. I have another appointment with my surgeon this monday. My parents are coming as well because we want to know what is/isnt a possibility in the future. I am having to ask for another deferal to med school and if they say no I will have to give up my seat :(

Last time he said they dont do botox for the puborectalis, and I dont know if he meant his practice or what, and every time I ask him about "what if physical therapy doesnt work" he avoids answering it saying that is negative thinking. I just want to know that he would consider something like an ileostomy another 3-6 months down the road if there is no improvement. I also dont know of any local doctors that do botox for obstructed defecation.

I really hate having to live like this :( Just looking forward to a day when all this is over with and I can feel good for once and start life again lol. Thanks for caring so much to keep asking about me ladies :)

2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 6/7/2011 3:22 AM (GMT -6)   
so sad for you that things are not working boat :( my defecography was also normal before my colectomy AND after, and still, things just weren't working. but the difference b/w me and you was that you were able to expel the baloon in the manometry test and i wasn't (had this test twice, the second about 1 yr far from the first and couldn't expel it both times). that's why i thought you had better chances than me it will work. also, my small intestine is soooooo abnormally slow, like i have inertia there too.

many girls here also couldn't expel the baloon, but they manage with miralax now. their small bowel motility is fine and if they don't take miralax, the stools will just sit in their rectum and they can't expel it and it causes them horrible pain. but miralax has been their miracle drug. have you tried it? i know laxatives sound like a dirty word for you right now, cuz naturally, like the rest of us, you hoped you'd never have to hear that word again, but we have to understand that the colectomy for CI is not always a miracle fix and some of us still need help of laxatives. the only difference is that now they work great and don't lose their effect.

for me, i started with laxatives 2 mons after the colecotmy, but they stopped working. every laxative i tried stoped working within 3 weeks. and having a slow small intestine wasn't helping also, so i had to do an ileostomy. with the ileostomy prune juice is working fine and it's been almost a yr since my ileo op and it's still working. hope it never stops. but maybe you can manage with miralax like Janie and Marisa and i don't remember who else. Janie had her surgery more than 3 yrs ago and miralax still works as good for her. try it. best wishes to you!

p.s. Rosemary is still on her cruise, but she asked me to update her about you. yeah, she's worried and really wants things to work out for you. me too!
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 6/7/2011 8:27 AM (GMT -6)   
Hi Boat,
 
Hodaya alerted me to your reply.  Am still on a ship and only check email every few days.  I THINK what is going on is that something either went wrong in surgery OR you have some scar tissue in one of your pelvic structures.  THe reason I think this is because prior to your having your colon removed all your pelvic studies came back just fine.  Scar tissue of a pelvic muscle no matter how well the surgery was done is a possibility.  i THINK that is why your doc may be going MUM.  Also the timing of your post-op difficulties (2 weeks post surgery) is the timing for scar tissue to set in.
 
So in your discussion with him, acknowledge that you realize scar tissue may be an outcome of the best done surgery and that you are in no way criticizing his work, you simply want to move forward and get the problem solved.  (THis technique lets the doc off the hook in terms of less than desired outcome and puts you in the forward-moving problem-solving mode.)  Tell him you would like him to be part of your forward-moving team of helpers and ask what HIS plans are for you.  If he does not HAVE a plan, this is not a good thing.  IN this case, cast around your area for a fresh look at the situation.  I really don't get why he is not into finding a puborectalis muscle botox shot trial for you.  It does exist, I had one and they put you under general for it.  They inject both end plates of the puborectalis muscle as well as the levator ani muscle to which the puborectalis is attached.  I know Lahey clinic does them if you are near Massachusetts.  My issue turned out to be scar tissue and it did not work, but what the heck is the big deal about at least trying one?  You could even ask that (but in more politically correct terms), you know what I mean.
 
Re:  Med School.  Take it from me.  YOUR HEALTH comes first, YOUR CAREER comes second.  WITHOUT YOU, YOU cannot have a career.  I have traveled this road and it know.  Don't get discouraged.  Get you fixed up the best that can be done, reapply to school.  If med school accepted you once, they will accept you again.  You could even strengthen your application by citing the road you traveled as a patient since your first application and that your experience will make you a better doctor as you will have first hand experience as a patient, not a quality all docs possess.
 
Also, tell your doc that you realize with an ileo that it takes 6-9 months before the fast output slows down and that if this is in your future you need to take steps to rule out other possibilities (ie: trying the shot), then gettting the ileo.  The holding pattern you are in is not moving forward.  Glad your parents are going with you.
 
These are just ideas based on my experience; take what you think are good ideas and leave the rest.  Keep in touch.  We care.  I was talking to a young man on the cruise who is about your age.  I am old enough to be your mom, in fact your mom is likely younger than I.  You deserve all the best treatment both medically, politically, psychologically, and spiritually while going through this time.  Good luck, Rosemary

esoR
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Date Joined Jan 2007
Total Posts : 4147
   Posted 6/7/2011 8:30 AM (GMT -6)   
Hi Boat, I was just reading over Hodaya's reply and she makes a good point about small bowel motility. BUT I think in your case your small bowel motility was normal, but do look up your original results and take them with you to your appointment. As I remember your colon was the only slow part of you. But I've been out to sea a long time. ROsemary

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/7/2011 11:42 AM (GMT -6)   
I personally think the colonic inertia affects the rectum when the colon is removed....Just my opinion.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia.
June 20, 2011-I will have a total colectomy, hernia repair, tummy tuck, and end ileostomy. I will keep my rectum since it is healthy.

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 6/7/2011 2:53 PM (GMT -6)   
I know my small colon is fine because, lets say I have really well cooked spinach (the vegetable that hurts th least coming out) for lunch. Anywhere from 1-2 hours later I will see spinach in the toilet when I go and have the little tiny squirts I can muster. :(

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 6/7/2011 3:19 PM (GMT -6)   
How can I locate a doc that does botox for this?

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/10/2011 4:55 PM (GMT -6)   
Hi Boat,

At this point I would say, just call around to hospitals in your area, ask to speak with the patient advocate (all hospitals have one and they are a well-kept secret) explain your situation, then have them find out for you which docs do the shots. The patient advocates are great and you DO hear back from them.

Rosemary

boatnerj
Regular Member


Date Joined Jan 2011
Total Posts : 155
   Posted 6/13/2011 5:05 PM (GMT -6)   
Well I had another meeting with my surgeon. He is kind of at a loss to what caused this to happen as well. I am continuing the biofeedback and he is sending me up to Johns Hopkins GI/motility center for a consult. Hopefully they will have some ideas of other things we can do (possibly trying botox or something else, etc). My surgeon also said if it comes to it he would be willing to do an ileostomy, however I think he said it would be a loop ileostomy, as he said he would leave the connection and just take a loop of my small bowel. I didnt ask him why because I still have not given up hope of things turning around somehow, and we are a long way from an ileostomy still.

IS there anything wrong with loop compared to end ileostomies? I know it would be farther up but would I sitll et problems with my rectum/poor pelvic floor function? If so, and if it came to an ileostomy I would definitely have to ask him to go for an end ileo as opposed to a loop.

My doctor luckily is happy to write me a letter for another deferall from med school, which I will be contacting the admissions office about this week, so cross your fingers and wish me luck ladies.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 6/13/2011 5:52 PM (GMT -6)   
I had botox and it did not help me, but some have had good luck with it.

I have a loop ileo because I insisted on a loop because I was scared I would absolutely just HATE having a bag and since I still have most of my colon, my doctor was worried about a mucous perforation???? Since he is going in to remove the remaining colon, he will convert the loop to and end, but I will keep my rectum, therefor if my rectum decided to work one day, then I could always have the stoma taken down.

Since you do not have your colon, I would push for the end ileo with you retaining your rectum because end ileo's are supposed to be easier to take care of with pouching and less chance of a hernia since it is smaller than a loop. Also, you could always have the stoma taken down one day if there were any medical advances with pelvic floor dysfunctions.

This is how I think about it anyway. If I could go back to last year and knew what I know now, I would have insisted on a total colectomy with end ileostomy. But, hindsight is 20/20, right?
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia.
June 20, 2011-I will have a total colectomy, hernia repair, tummy tuck, and end ileostomy. I will keep my rectum since it is healthy.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 6/13/2011 8:42 PM (GMT -6)   
Hey Boat,

Glad you are going to John Hopkins. Glad your doc will write the med school deferral. If you get the ileostomy go for the end ileo. They are less apt to get a peristomal hernia and are MUCH easier to bag than are loops. Plus with loop ileos there is a danger that poop can slide back down the wrong end of the loop and end up in your rectum in which case you would not be able to expel that poop. So you do not want a loop ileo. End ileo's can be put back if there are any advances further down the road regarding pelvic floor disorders. If your doc said that he did not know what happened to your pelvic floor after your surgery, you are dealing with a good, honest doc who is not afraid to be human and let you know that he is human. The fact that he can just say the words "I don't know" means he is real and not defensive nor does he feel the need to know all. So this is a positive thing. I would think John Hopkins could try a botox shot. It's worth a shot, no pun intended. Many of the side effects of any surgery are unknown. It may forever remain a mystery of why your pelvic floor tested fine before surgery and not after. These unknowns are often hard to accept, but unfortunately they are as they are. Sounds like your doc resected high up enough so as not to compromise any pelvic nerves, but who knows. Keep us posted. Good luck. Rosemary
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