BOAT, WHAT IS THE LATEST WITH YOU?

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esoR
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   Posted 6/27/2011 8:40 PM (GMT -6)   
Hi Boat,

Thinking of you. What was decided? Are they going to do the ileo for you?

Rosemary

boatnerj
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   Posted 7/13/2011 3:57 PM (GMT -6)   
No decisions made yet. Still doing physical therapy and waiting to go to johns hopkins (appointment isnt until the 15th of august). I have tried to find someone nearby who uses botox but have had zero luck :(

I got a another year deferall though which is a relief.

esoR
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   Posted 7/13/2011 5:49 PM (GMT -6)   
Boat, Good for you getting another year deferall that must be such a relief. Keep us posted. Tracy finally got home! YEAH!!! Rosemary

good luck Aug. 15. The shot did me no good but I was a complete mass of scar tissue. You likely are not so the shot is definitely worth a shot.

boatnerj
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   Posted 7/14/2011 5:51 PM (GMT -6)   
I feel like it should work. I am not really constipated, as everything goes through me fast, I just cant get it out. Also, whenever I sit in the sitz bath or just my tub, it will relax stuff in my bum and I will go a bit but then stuff tightens back up. If we can just keep it relaxing I am sure it would be fine.

esoR
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   Posted 7/14/2011 8:48 PM (GMT -6)   
Boat, this sounds promising. sure hope it works for you. Rosemary

boatnerj
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   Posted 7/17/2011 9:45 AM (GMT -6)   
I met with my surgeon and it turns out I have a pretty nasty anal fissure. He says I could have had it for a while and it could have been gradually getting worse making it harder to go/causing my internal sphincter to spasm. I am going in Tuesday to go under anesthesia so he can look around. If he sees what he thinks he will we are doing a sphincterotomy to allow the internal sphincter to relax and let me go easier.

It makes sense as most of the time when I sit in the sitz baths the warm water will cause things to very briefly relax and some stool would come out (but things would tighten up again fast).

esoR
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   Posted 7/17/2011 9:57 AM (GMT -6)   
WOW! Boat, that sure is a revelation. But why did it take so long for this to be diagnosed? Glad they found it now and are dealing with it for you. Best of luck.. Thanks for update. Rosemary

boatnerj
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   Posted 7/18/2011 5:53 PM (GMT -6)   
Say some prayers for me tonight. Surgery will be tommorow at 12 30 or so.

esoR
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   Posted 7/18/2011 8:01 PM (GMT -6)   
PRAYERS YES! Boat all the best tomorrow. Rosemary

2b ColonFree
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   Posted 7/19/2011 12:33 AM (GMT -6)   
GOOD LUCK Boat!!! thinking of you!!
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

boatnerj
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Date Joined Jan 2011
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   Posted 7/19/2011 3:00 PM (GMT -6)   
Well, the doctor didnt end up doing the sphincterotomy. When he was inside me he didnt think it would be needed, but I did have a sever stricture at my anastomosis. I am getting a ct scan done tommorow and see him friday and well go from there. I may need surgery to fix it...

2b ColonFree
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   Posted 7/19/2011 3:45 PM (GMT -6)   
my gosh boat, i hope he figures out soon what exactly needs to be done. best wishes!
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
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   Posted 7/19/2011 8:39 PM (GMT -6)   
Boat,

Remember that was my first guess as to what was wrong, a stricture? Didn't he scope you way back and tell you all was fine? What happened there?

A gastrograffin enema is done with normal xray and can visualize the stool backed up above the stricture. My stricture narrowed my anastomosis to 4 mm diameter, half the diameter of a pencil. I had to drink a half gallon of bowel prep to melt the stool down and get it to come down through the stricture.

How have you been managing taking nothing? Good thing your surgeon put you out and went exploring. Am surprised this was not noticed when he scoped you long ago. You must be suffering awfully.

Keep us posted. Thinking of you. Even if they dilate the stricture, sometimes the scarring of the anastomosed area loses it's mucularity and the anastomosis needs redoing. Maybe he will at least try a dilation. Would be worth a try. Or sometimes 2 dilations is the protocol. If they do, make sure the balloon is left inflated for 3-5 minutes, not just 1-2 that I learned from a very smart surgeon.

Rosemary

boatnerj
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   Posted 8/4/2011 12:04 PM (GMT -6)   
my stricture is a about 5 mm. I am meeting a guy who is head of the advanced endoscopy something or other center at my hospital. He will be doing the dialtions. I will also be getting botox into my internal sphincter and puborectalis august 26th so I am hoping that will help.

esoR
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   Posted 8/4/2011 12:20 PM (GMT -6)   
WHEW! Boat, how are you passing any stool (effluent)? Do you have to take a LOT of laxatives or without the colon, does the effluent pass through such a narrowed area? Mine was narrowed to 4 mm and I had to drink LOTS of Colyte bowel prep to go. But I had my colon.

Glad you have the appt. Be sure they leave the balloon inflated for 3-5 minutes not just a quick dilation (DO check with your doc on this as mine was colon to colon stricture, not rectum to small bowel connection stricture. Might be a different issue with you, but if he is head of advance endoscopy that sounds like you are getting the best that can be gotten. Seems like they left you waiting for way long time here though. Hope nobody told you it was all in your head :-) Does not sound like they did, but delay, you got that for sure.

Good luck and let us know how it goes. Ask if they plan 2 dilations a few weeks apart. That is the usual protocol. IF 2 or 3 at the most don't work, I was told it won't. Wishing you all the best that it works. Remember if ileo does have to happen for you, it is not the end of the world, and you will get to go to medical school and be a super doc due to all you have been through. Rosemary

2b ColonFree
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Date Joined Nov 2008
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   Posted 8/4/2011 1:34 PM (GMT -6)   
best of luck boat! hope it works out!
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

boatnerj
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Date Joined Jan 2011
Total Posts : 155
   Posted 8/5/2011 10:11 AM (GMT -6)   
Yes it will be aseries of progressive dilations up to a max of 15-18 mm if it doesnt shrink back. I dont know how to feel about that as it was 30 mm after surgery. Well have to see though, as this and the botox are my last shots before an ileo is considered.

esoR
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   Posted 8/5/2011 12:37 PM (GMT -6)   
Boat, my original diameter was 25 mm which would make sense as you are a guy and likely just a bigger person than I. So 30 mm would make sense. If you are in to 5 mm they can't stretch it too much the first time. It will shrink in some over a week or so. Then they do the next one.

Here were my diameters:

25 mm originally

anastomosis after sigmoid colon removed shrank to 4 mm. They dilated out to 20 mm first dilation, anastomosis shrank into 8 mm in a week

Dilated out to 25 mm second dilation.

Stayed at 20 mm for 4 months

Then shrank to 15 mm and by then the length of the stricture has gone from 1 cm long to 10 cm long and that whole 10 cm of my colon was nonperistaltic.

Best wishes, sure worth a try, but end ileo may be coming your way. I do not know what it is about these hookups but many don't work that I have heard of people who are not on this forum that I know personally, then mine too so, you are not alone.

My dilations again were done rectum to colon not rectum to small bowel, that is why your dilations are being done to a smaller degree.

Will hope the best for you.

My current issue of dizziness may be due to acoustic neuroma. CT scan of my head showed wide auditory canal where it enters the brain. Doc said some people just have this as an anomoly but there could be something causing this. So MRI with contrast of my brain on Sunday. I looked this widened canal up on google and it said acoustic neuroma (brain tumor) often shows this way on a CT then the MRI with contrast confirms it. Am praying this is not so, esp after all the gut stuff I have battled. But time marches on and other things can set in. I am 55. I will pray for you and you pray for me that I don't have this brain tumor. I do not think I could deal with one more physical issue. I am literally spent with medical stuff.

Best of luck. Keep me posted. Rosemary

boatnerj
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   Posted 8/5/2011 5:24 PM (GMT -6)   
could the stricture be causing the bloating/distension. I will get it but only temporarily (and the bulge is right at my scar site) and as I have small bms it passes. it also seems like water makes its way through first, then the solid/mushy stuff. I am only really able to eat meat, spinach cooked really well, and lots of fat (butter, oil, etc).Oh and any kind of liquid carb.

esoR
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Date Joined Jan 2007
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   Posted 8/5/2011 9:32 PM (GMT -6)   
Yes boat. What is happening is that poop (effluent in your case) is building up above the stricture and bloating you until it comes out. Trust me with a colon anastomosis stricture as bad as yours, I REALLY experienced bloat!!!!!!! You should have seen the amount of poop stacked up above my stricture on the gastrograffin xray. I was really surprised my colon did not rupture. My colon was stretched to about 4 times it's normal width. So when my defendant surgeon (original surgeon who removed my sigmoid which in the end through my case was found not to need removing anyway) when he put in writing to me 5 times "I will do nothing about your stricture" the guy basically wrote his own ticket to a law suit.) Hey, I just followed his lead :-) :-) :-)

Anyway, the fact that you CAN defecate through such a narrow stricture means that though your stricture is as severe and narrow as mine was, the fact that you can poop through it means that it is not as tight as mine was. There are narrow loose strictures and narrow tight strictures. Yours is loser than mine was.

Logically, what this translates into is that the dilations on you MIGHT work. Mine being so narrow and tight meant that the scarring was severely within the walls of my colon and in time did spread length wise. Where as yours is pliable enough to let poop through, maybe your dilations will work. Glad you added this info.

Rosemary

boatnerj
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Date Joined Jan 2011
Total Posts : 155
   Posted 8/7/2011 10:22 AM (GMT -6)   
Yeah, I wouldnt describe it as typical gassy bloating, it just distends out near my scar and there is a fullness there until I defecate it out bit by bit. Oh well, going in tommorow for the first dilation. I think they will try to dilate it from 5 mm to around 8 mm or so, and then take it 2-3 mm at a time/at each dilation.

esoR
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   Posted 8/7/2011 8:45 PM (GMT -6)   
Good luck boat. Hope it works.

I had my brain MRI today and the doc cancelled the contrast injection. I was not allergic to the stuff and was ready for it, but Oh, well, maybe what this doc was searching for would show better without the contrast?

Am new at all this neuro stuff. My honorary MD is in gut issues :-)

Best wishes, Rosemary

esoR
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   Posted 8/9/2011 8:43 PM (GMT -6)   
On Monday, I get a call "come back for brain MRI WITH contrast" WHEW!! Oh, well, back I go. Not highjacking this thread, just in my own land of fear with all this brain dizzy stuff.

Sure wish you could get your dilation before Aug. 26th that is still a ways away. Rosemary

boatnerj
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Date Joined Jan 2011
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   Posted 8/18/2011 4:37 PM (GMT -6)   
Well, the first dilation we got it to 15 mm, and it only shrunk back to 13 mm (which he expected and siad thats good). This time he dilated to 18mm. Bad news is he is saying there is definitely some prolapse going on which he thinks is con tributing to the "ffunctional obstruction" when I try to go. So I will most likely have to have surgery for that and my surgeon will just go ahead and make a brand spanking new anastomosis. Botox is set for next friday, and we will have to pick a date for the surgery.

esoR
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Date Joined Jan 2007
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   Posted 8/18/2011 10:39 PM (GMT -6)   
Oh,, Boat, am so sorry to hear this. I hope all your surgeries are done lap to avoid adhesions.

Also what caused the prolapse as you did not have one before?

Good news on my brain MRI no MS, no acoustic neuroma, and no other brain lesions. Balance testing this week to rule out inner ear issues as cause of dizziness. So we are closing in on the cause and hopefully cure.

Gut stuff is soooo much more less cut and dried than other fields of medicine so to speak.

Best wishes Boat. Let us know. Rosemary
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