GI appt today...good and bad news.

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80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/21/2010 5:22 PM (GMT -6)   
I met with my GI today. He's really pleased with how I'm doing. I've gained 17 lbs since my surgery 5 weeks ago, and my CDAI score went from like 150-200 to 26!!!! INSANE. I'm almost off my pred and he thinks I will be ok without a maintenance drug (good since I don't think there's one out there that I haven't tried) and I'm coming back in 3 months.
 
The bad thing: I had outpatient surgery 2 months ago for chronic urinary retention and was recovering well until my proctocolectomy. They removed my catheter after having my colon removed and peeing has been a nightmare ever since. It's as if I never had the bladder surgery. I have to pee CONSTANTLY. I'm so uncomfortable. And it's so frustrating becuase I'm doing SO WELL with my ileostomy--it's like super irony and I just want to feel well. My GI said I probably have a stricture in my urethra from having the catheter in during the surgery. I am SO MAD and I am going to call my urologist tomorrow. The treatment options for a urethral stricture are dilation or surgery. I'd rather have surgery and just get it over with and be better but I have missed SO MUCH WORK in the past 3 months with these two surgeries. Plus I live alone and my family lives 1,000 miles away and I have already had them come stay with me TWICE for my other surgeries in the past 3 months to take care of me. UGH I hate this.
 
I don't know what I want--advice, words of wisdom, I don't know...I'm just so frustrated and angry and I just want to feel better and live my life. :(
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on:7.5 mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Flomax (for urinary retention). 


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/21/2010 6:24 PM (GMT -6)   
Stephanie  Well you have just had it haven't ya?  Don't blame you one bit.  You would think that all you have been through that it would be enough......sorry that your having these issues.  My prayers and thoughts are with you, and all the others suffering today.
 
I am 2 months post-op from my total colectomy and could not be happier...yeah   Just hope that things continue on this way.  Only thing I need now is some energy...but not complaining...turn   So take care of yourself the best you can..
 
Leslie
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


Allison77
Regular Member


Date Joined Feb 2005
Total Posts : 421
   Posted 4/21/2010 8:44 PM (GMT -6)   
I need a vacation...i'll come over!!
*hugs* You'll figure out what is the best thing for you!

-Allie
RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
 
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."


honestwoman50
Veteran Member


Date Joined May 2009
Total Posts : 833
   Posted 4/22/2010 11:56 AM (GMT -6)   
ALLIE,,,WHERE DO YOU LIVE SOUNDS LIKE A GOOD TIME..
 
 
LESLIE yeah
Leslie King
 
  1984 Tubligation  1992 Diagnosed with Thyroid tumor    
1993 Gallbladder Removed  1997 Hysterectomy  1998 Carpol Tunnel 
 1999 Spinal Cord Surgery for a Anacroid Syst
2001 Lower Lumbar Fusion L4-5  
2003 Sigmoid Colon Resection
 2006 Right Knee Replacement 2005 Breast Reduction
 2008 RE-did the Lower Lumbar Fusion/ lamanoctomy
2010 DX: colonic Inertia/ Pelvic Floor Disorder
2010 Total Colectomy ABD W/O proctectomy; w/Ileosto
 
  


flchurchlady
Veteran Member


Date Joined Jul 2007
Total Posts : 2765
   Posted 4/22/2010 5:54 PM (GMT -6)   
Stephanie,

I'm glad you're doing well with the ileostomy, but am sorry to hear that you might have to have another surgery. But, you have to do something, because that sounds really uncomfortable. sad It's too bad that you don't have family closer, but hopefully, you'll bounce back quickly once you're feeling better. Please keep us posted on what your Urologist says.

Big hug,
Cece
Dx'd Crohn's in '99 at age 28. Proctocolectomy and permanent ileostomy in '06.
Disease-free and medicine-free since surgery and very thankful to be healthy again.


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 4/23/2010 4:50 AM (GMT -6)   
I TOTALLY understand your frustrations!! I'm scheduled for yet another MAJOR surgery in July.. it will be my 6th surgery in the last 14 months!! I also understand the bladder issues.. as my last surgery in December messed my bladder up again, and I'm having trouble peeing! Hopefully - this will be our last surgeries and our bladder issues will be better as well!
~Jenise~

Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(


80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/23/2010 7:34 AM (GMT -6)   
Jenise, I'm so sorry to hear about all your surgeries!! How frustrating for you. It just seems like when it rains, it pours. How did your last surgery mess up your bladder? Was it like mine--the catheter? Or something else?
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10!
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently on:7.5 mg Prednisone, Prenatal Vitamin, Vitamin B 12 Complex, Vitamin D, Calcium, Flomax (for urinary retention). 


tinkerbell2
Regular Member


Date Joined Jun 2009
Total Posts : 418
   Posted 4/23/2010 8:58 AM (GMT -6)   
Stephanie, they had the catheter in and on day 3 removed it - but nothing came out. They put it back in another 2 days, and then removed it.. but the flow was/is weak and I just never could empty it. The real issue is.. that I have had reconstructive pelvic surgery - due to a bad childbirth. My bladder was prolpased, and I had that repaired and a sling put in.. 13 months ago. Then in December, I had my colon surgery, and the colon surgeon had to cut the mesh that was holding everything in place, and apparently - he rejoined it and it didn't hold, so now my bladder is prolapsed again.. It's better then it was 4 months ago, but I have to strain/push to empty it, otherwise it just trickles out and it doesn't all come out! I guess it's raining pretty hard for both of us.. I just worry how much my body can take with all these surgeries.
~Jenise~

Chronic Constipation - last 20+ yrs.
Stage lll Pelvic Floor Prolapse ( rectocele, rectal, vaginal, bladder) Rectopexy, Sacral Colpopexy, TVT Sling - 8+ hr surgery - March 2009
Constipation increased, could not move bowels without excessive straining or laxatives - March 2009
TVT Sling Released - April 2009
Redundant, Twisted, Prolapsed colon found - causing mechanical obstruction Oct. 2009
Rectosigmoid Colectomy w/low anterior Anastomosis & Revised Rectopexy - Dec. 2009
Perineorrhaphy & Posterior Colporrhaphy (rectocele repair) - Dec. 2009
Today - using MiraLax daily,but still struggle to have a BM :(

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