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nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 8/23/2007 11:52 AM (GMT -7)   
Greetings All,
I had a procto-colectomy on August 1. Even though I had had UC for about 30 years, I never had really serious symptoms. I had just learned to live with it and take medications.
However, in April my yearly colonoscopy showed high grade dysplasia. That scared the dickens out of me.  My small town surgeon said I should find a colon/rectal surgeon. Before I set up an operation date, I went to another GI doctor and had another colonsocopy. The results were the same-high grade dysplasia. Of course, I wanted to live so I found a surgeon.  Because I'm over fifty, he said I wouldn't be a candidate for J-pouch.  That stinks!

I want to let you know the good news first.  There was NO CANCER found in my colon.

The surgery itself wasn't that bad, but I was treated like mud in the hospitaL. First, the surgeon was 2 hours late, I found out that later.  Then, the epidural didn't work!!!!  When I awoke in recovery, all I could do was scream. There was no excuse for that.

Now, I am home recovering.  I don't really have that many problems, except getting use to the ostomy and appliances. The support from family and friends has been wonderful. My life has changed for sure, but I think I can adjust to this way of life.  I certainly didn't want to live in fear of cancer. So many of you gave me encouragement before the surgery. I appreciate ya'll.

NeNe 205

I just added a title to your post


Post Edited By Moderator (Red_34) : 8/23/2007 6:25:08 PM (GMT-6)


quincy
Elite Member


Date Joined May 2003
Total Posts : 29859
   Posted 8/23/2007 12:12 PM (GMT -7)   
NeNe205...Awesome to hear you're recovering well from your surgery!

Why exactly were you not a candidate for the j-pouch except for being over 50? Will you be a candidate for another type of surgery except for having only the ostomy?

I can't imagine the hell after surgery when an epidural doesn't work...OMG!! Did they at least give you any pain meds once you woke up?

It's a relief to hear your family is supportive...you'll need that. Yes, I can imagine the life change effects from having the surgery..and as you said..it's better than living with the fear of cancer.

I hope you improve steadily.
quincy
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


potty girl
Veteran Member


Date Joined Dec 2006
Total Posts : 835
   Posted 8/23/2007 3:10 PM (GMT -7)   
good luck with your recovery, hope it is a speedy one.
Rona

synthroid .088 mg, lowpressor 50 mg x 2, cozaar 25mg x2, imdur 30 mg
nitroquick, proventol, plavix 75 mg, protonix 40 mg x 2, asacal 400mg x 9
carafate 1 gm x 4, zyrtec 10 mg, rhinocort aqua nose spray, fish oil,
potassium.


ledaebel
Regular Member


Date Joined Jul 2006
Total Posts : 339
   Posted 8/23/2007 3:16 PM (GMT -7)   
I am so sorry you experienced so much pain after surgery, there is no excuse for that.  I am a Recovery Room nurse and know that the nurses should do their best to get  appropriate medication orders to relieve pain.  I appologize (for all medical personnel)for all you had to endure.

  • LINDA
         
Prescriptions: Lialda (on a study) asacol, hycosamine, protonix, synthroid, zyrtec, avalide, nasocort, Miacalcin spray and Trazadone for sleep.
OTCs:  Usana multivitamins and multiminerals, Usana Procosa, Usana Mega Antioxidants, Omega 3, Vit. E,  Healthy trinity probiotics, Calcium Citrate


Jeremy "Mr. Snuts"
Regular Member


Date Joined Oct 2004
Total Posts : 162
   Posted 8/23/2007 3:23 PM (GMT -7)   
same thing happened to me in recovery. Woke up on the way TO recovery(im guessing right after my surgery) and yelled at the nurse to (ahem) quote unquote, "Make the ****ing pain stop!". lol. Not my best moment but I appologized after and she said she understood.
Diagnosed with Severe Ulcerative Colitis 1/04 -(18 at the time)
11/04 Total Colectomy
2/05 Ostomy Takedown
1/06 DVT In leg
5/06 Pulmonary Embolii
4/07 Another DVT In leg
Current Medications -
Vicodin 800mg when needed(yumyum)
Coumadin

http://www.myspace.com/mrsnuts/
http://www.livejournal.com/users/mistersnuts/


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 8/24/2007 6:50 AM (GMT -7)   
Age probably didn't have anything to do with Nene's inability to get a j-pouch, there might have been other physiological reasons for this. Plenty of people in their 50s, 60s, and 70s have had successful j-pouch surgery. For anyone considering j-pouch surgery always look for an experienced CR surgeon. Most often they are found in metropolitan areas, not small town hospitals. Big cities attract the more experienced surgeons in most specialties.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


nene205
Regular Member


Date Joined Jun 2007
Total Posts : 302
   Posted 8/24/2007 8:54 AM (GMT -7)   

Thank ya'll for the replies.  I have so much time on my hands.  The mind can cause you to worry to excess about things.  I do think I'll try another doctor about a j-pouch or something kin to one, even though life with the appliance beats cancer worries!!!

NeNe205


ucRick
Regular Member


Date Joined Jun 2007
Total Posts : 75
   Posted 8/24/2007 12:42 PM (GMT -7)   
Hi NeNe,
 
I'm glad to hear that you're recovering well from your surgery.  I'm sorry you didn't have additional options for you surgery but it sound like you have a great attitude and will do fine with the ostomy.
 
I'm scheduled for my total abdominal colectomy on September 9, so I guess I'll find out what the pain is like as well.  From what I've read in your posting as well as others I think that I'll request pain killers in my IV instead of an epidural because I sure don't want to go through what you did.  If everything goes as planned, I'll end up with the end of my small intestine attached to the top of the rectum, so I won't have to adjust to an ostomy along with everything else.  My surgeon said that only about 5% of his patients have the option of keeping the rectum so I'm counting my blessings there.  I might have to have it out later, if dysplasia shows up there, but I'll go in for "scoping" at least once a year after the surgery.
 
Again, I'm glad to see that you're feeling better and I wish you the best in your continued recovery.
 
Rick

53 yr old male, UC since 1978
800mg Asacol x 3 daily
Multivitamin
Forteo(for osteoporosis)
600mg calcium + 200 iu Vit. D x 3 daily
Advicor(for cholesterol)


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5135
   Posted 8/25/2007 1:51 PM (GMT -7)   
You poor soul-- having that rotten experience & now an ostomy. It just goes to show how treatment of IBD really sucks. The surgeons manage to profit from all this misery. I don't give a hang re dysplasia-- as UC Veteran has written-- it is speculative. Anybody can develop cancer anywhere, anytime. Best wishes for your recovery & may this be the end of your medical problems. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon, which is responding)
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