Ok, so I'm back with more problems...

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2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 5/30/2009 11:21 AM (GMT -6)   
I thought everything was going fine and life had returned to normal.  I even started a business and it's just getting off the ground.  Then I went in last Tuesday to have my anastamosis dilated and it turns out the Doctor couldn't even do it.  It seems there is a curve or kink in my intestine making it turn at a 90 degree angle and the opening there is very miniscule.  That explains all the blockages I've been having.  So now I have to go into the doctor this Tuesday to talk about surgery again.  I can't believe it!!  She said I would be in the hospital for three to four days max....you know what happened last time so I'm scared to death!!  I don't have a date yet but should have one on Tuesday.  She said it's not a matter of IF I have surgery, just WHEN.  She said it inevitable....
 
The only upside to all this is that I've been having extreme abdominal pain due to scarring in my upper abdomen and while the surgeon is in there she said she can probably remove some of that.  Although then there will just be more scarring....does it ever end??
 
We were planning to take a cruise this summer at the end of June and I was thinking that maybe I could wait until after the cruise to have the surgery sometime in July, but then my son pointed out why that's not a good idea.  He said what if I have a blockage while on the cruise and need emergency surgery while out in the middle of the ocean?? That really got me thinking......
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
Still adjusting to life without my large intestine...
 
The whole world is at your feet; so paint your toenails Red!
 


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 5/30/2009 11:46 AM (GMT -6)   
I fogot to mention the doctor said there is a 5% chance I would have a bag again but this time would be permanent. Is that a risk I should take or just wait until I HAVE to have the surgery, like in an emergency situation?
Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
Still adjusting to life without my large intestine...
 
The whole world is at your feet; so paint your toenails Red!
 


XtremeMisery
Veteran Member


Date Joined Sep 2007
Total Posts : 687
   Posted 5/30/2009 12:25 PM (GMT -6)   

Amanda-

So sorry you have to have another surgery.....Does your surgeon know what caused the kink? I wish you the best and know you will be ok. You have been through so much this time it has to go your way right. Five percent is pretty low, yet it would still be on the back of my mind. I will be praying for you......and praying for a sucessful, and uneventful surgery. Keep me posted as to when your having it. Love ya girlie.......glad you otherwise doing so well.....i want that someday.

Lizzie


Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic May 27 for poss. K pouch with Dr. Remzzi
 
"The Greatest Healing Therapy is Friendship and Love"


Roddiesgirl
Regular Member


Date Joined Oct 2008
Total Posts : 262
   Posted 5/30/2009 1:40 PM (GMT -6)   
OH NO!!  I am so sorry to hear this Amanda!  You poor thing.  Just think though once they "unkink" the intestine, you should be good to go and there'll be no stopping you!! Hopefully this will be the last surgey for you.  In my prayers girl!...Cheryl
Hysterectomy 1998
Diagnosed IBS 2000
Vaginal Prolapse Surgery 2001
3 Hernia Repairs, 2004
Repeat Vaginal Prolapse Surgery 2006 (the mesh from previous prolapse surgery had let go and fallen into my bowels)...
Removal of mesh from bowels (it was piercing holes all through my bowels and appendix and cecum, causing 2 fistulas and heavy bleeding vaginally and rectally)...mesh was removed, two pieces of large bowel removed and resectioned with a loop ileostomy. 2008
 
I have underlying connective tissue disorder (Ehlers Danloss Syndrome) which is the reason for the two failed surgeries)
 
Ileostomy Reversal March 9/09


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 5/30/2009 7:24 PM (GMT -6)   
Amanda, I'm really sorry to hear this, especially since you've been doing so well. *hug*

I can relate to your situation, because I also had a 90 degree bend in my small intestine that was causing partial blockages.
Around 6 weeks ago, I almost died when it turned into a full blockage that caused my small intestine to perforate. I had to have
emergency surgery and luckily survived. If I were you, I would not mess around with this and get it fixed.
Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again.


Chasblah
Veteran Member


Date Joined Feb 2007
Total Posts : 788
   Posted 5/30/2009 8:50 PM (GMT -6)   
I know you've been through so much scary stuff lately. I can totally see why you're not jumping for joy at another surgery (who would be). But like Cecilia said, don't wait for an emergency, b/c it would be much MUCH riskier.

Good Luck to you. You'll be in my prayers.

Look on the bright side (if there is one). Maybe you can have your cruise in the fall or winter. Cheaper rates, and you can come back tan while the rest of us will be pasty white. :)

Chassity
Chassity
28 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
coumadin, prenatal vit.
(temporary ileostomy....maybe)

"Things turn out the best for those who make the best of the way things turn out."


2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 5/31/2009 1:05 AM (GMT -6)   

i'm so sorry you're having troubles again, i'll bet it's frustrating and having more surgery is the last thing you want right now or EVER.

did your dr say what the chances for this procedure to be successful? what is supposed to be done in this surgery? are they simply going to remove the twisted part and join the new end to your rectum? i'm just curious.

i hope things go well, you're in my prayers, dear!


Hodaya
 
06/05/2007 - STARR procedure 
colonic inertia w/ pelvic floor dysfunction


2 RIS K
Regular Member


Date Joined Aug 2008
Total Posts : 367
   Posted 5/31/2009 4:10 AM (GMT -6)   
Cecilia and Chassity, you are so right, and Cecilia I'm so sorry that happened to you! That must've been very scary and very painful!! Here it is 4am and I'm sitting here with a partial blockage and lots of pain. I can't sleep so I thought I'd put a heating pad on my stomach as I know this is what they always tell me to try first. I hope it works because right now I can tell it's a partial, but I'm afraid if it doesn't clear soon it will turn into a full blockage. Your story really scared me into thinking I want to get it done on MY time so I can determine the when and the where and the who (as far as what dr. does the surgery.) You really gave me something to think about!

Thanks Cher for your words of kindness and support, they mean so much to me!

NASCARon, I never thought of getting a second opinion and to be honest I probably won't. I trust my surgeon explicitly as she has so much experience and she's done all my previous surgeries. Honestly, even though I should probably get a second opinion, I probably won't. I'm too scared now and just want to get it done.... After seeing the pictures she gave me of how small it is and how it's kinked (at a 90 degree angle), I'm afraid to put anything in my mouth, I'm very scared to eat anything because now everything looks like a danger food. I'm so paranoid now I just want it fixed so I can resume my life. I have complete trust and confidence in my surgeon.

So Hodaya, Tuesday I will find out more about this when I go see her and ask her what the success rate is, but I know she'll tell me that with my case being so difficult it's a tough call. I guess though if she said there's a 5% chance it won't go right and I'll end up with a bag, that there's a 95% chance everything will be fine. What would you do??? You were right on with what they would do during surgery. I think they have to cut out that part and reconnect it. I'll know for sure on Tuesday.

Thanks to everyone for your support!


Amanda
35 years old
Chronic Lifetime Constipation
Diagnosed IBS - 1995
Rectal Prolapse - February 2007
Rectosigmoid Colectomy w/low anterior Anastomosis - March 13, 2007
Diagnosed with Colonic Inertia - June 08
Total Colectomy - September 22, 2008
Temporary Ileostomy due to small bowell perforation Septepmber 29, 2008
Ileostomy Reversal - December 15, 2008
Multiple Small Bowel Abscesses-December 22, 2008
Leak at original Anastamosis -December 25, 2008
JP Drain removed - January 23, 2009
Still adjusting to life without my large intestine...
 
The whole world is at your feet; so paint your toenails Red!
 

Post Edited (2 RIS K) : 5/31/2009 4:45:54 AM (GMT-6)


peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 5/31/2009 4:39 AM (GMT -6)   
Repeated partial blockages are a pretty good indication that there is something going on internally, IF, that is, you have done all of the experimenting with the food that goes into your mouth.  Me, well, I just wouldn't mess around with it any longer.  Choose your surgeon, time and you have control over your recovery a little better than if you were to wait for it to become an emergency.
 
My partials are adhesion related, topped off by foods that are quesitonable.  But nearly all of mine have happened after I go to bed 0 maybe lack of activity to "push" it on through.  So walk as much ad you can

Best of luck to you.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 

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