explain the pouch surgery to me please

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 9/26/2008 2:26 PM (GMT -6)   
a lot of people have posted that they had the pouch surgery. I am terrified that I may need surgery because I dont want a bag on the outside.  (it scares me to death)
but the pouch surgery sounds different, please explain as my GI specialist hasnt mentioned this to me in our 5-6 minute meetings.
 
i stil have another option to try first, but I will feel much less hopeless if I thought there was another option if this one fails.
Liver transplant 2004 -- liver is only healthy part of me
 
Remicade every 6 weeks - not working
pentasa 1500mg tid
palafer once daily
lomotil every day as needed
immodium every day as needed
 


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/26/2008 2:29 PM (GMT -6)   

The most thorough information about the surgery can be obtained here:

http://www.j-pouch.org/

They also have a forum for people contemplating or who have had the surgery. As with this board, be aware that those who have the most success with treatment are the ones least likely to be on the message board.


Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/26/2008 4:00 PM (GMT -6)   
jpouch.org is a good resource. You should also check out http://ucstory.wordpress.com
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


dakotagirl
Veteran Member


Date Joined Apr 2006
Total Posts : 3402
   Posted 9/26/2008 5:48 PM (GMT -6)   
I was once terrified of surgery, then I read these two books which really eased my mind: "It Takes More Than Guts" by Philip VanHooser and "bag lady" by Sandra Benitez.

The sites others have recommended above are good as well.

Things we don't understand are scary! Once you learn more about your condition and the treatment options you have, the scary goes away. Knowledge is power.
Pan-colitis and GERD diagnosed May 2003
Osteopenia (hip and spine) diagnosed Feb 2006
Status:  Remission?!?!?
Asacol 12 per day,  Azathioprine 100mg, Aciphex, Forvia, and Pro-Bio
Remicade: 1st infusion 06/17/08:  Next infusion: 10/07/08
Last Prednisone dose:  7/15/08
 
Co-Moderator UC forum:  Keep HealingWell running smoothly:  www.healingwell.com/donate


malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 9/26/2008 7:36 PM (GMT -6)   

The J-pouch site explains it fully.

Your doctor probably hasn't mentioned it because it's generally not a primary option.


neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 9/26/2008 8:46 PM (GMT -6)   
why is it not the primary option? do you mean that they try drugs first? I understand that of course if the drugs are working, they will continue with that. 
It just gives me hope when I feel like the drugs are not working anymore.  I really fear the ostomy bag.  I dont want to have to buy a wedding dress with extra room in it... you know what I mean.
Liver transplant 2004 -- liver is only healthy part of me
 
Remicade every 6 weeks - not working
pentasa 1500mg tid
palafer once daily
lomotil every day as needed
immodium every day as needed
 


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 9/26/2008 9:56 PM (GMT -6)   
Two things. One is that an educated GI treating a patient who is otherwise a good surgery risk will, given the state of the research today, absolutely consider the j-pouch the primary surgical option for UC. Some people choose permanent ostomies for reasons of their own, but surgeons who do both procedures will almost always encourage you to try the j-pouch because it works so often. The success rate for the surgery, as measured by patients reporting good or excellent quality of life, is 92.3%. That is higher than any other single medical option for treating UC. But lack of information about that is not uncommon among GIs--they are not surgeons. (And as my second opinion GI pointed out: "My j-pouch patients are so much better that I rarely see them again.") Talk to a surgeon who does the surgery all the time to get the best sense of what the options are for you.

The other is that the ostomy bag (which will probably be part of your experience of j-pouch surgery) is not nearly as bad as you are imagining. You would not need a wedding dress with extra room. I continued to wear my usual clothes and even people who knew I had the bag couldn't figure out where the heck I was stashing it.

I'm not saying it was a picnic, but it was so much better than having active UC and the constant threat of colon cancer hanging over my head that I barely know how to describe the improvement. The entire area of my brain that used to be taken up figuring out where all the bathrooms are was liberated as soon as the first surgery was over. And I knew I would not die of colon cancer (I had dysplasia) or of fulminant UC. You've had a liver transplant, so I don't have to tell you how valuable it is to dodge that bullet! But you need to be free to really live the second chance at life that you got, and either surgery is worth it if it will do that for you better than the drugs.

Post Edited (Charlotte Gilman) : 9/26/2008 9:03:10 PM (GMT-6)


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/26/2008 10:51 PM (GMT -6)   
If Remicade is not working, I'm surprised your GI hasn't said anything about surgery. When Remicade wasn't helping after my 2nd infusion, my GI told me to start talking to surgeons. I would get a second opinion from another GI as well as a surgeon or two.

Although an ostomy bag sounds really gross and weird, there are some people who actually choose to keep it and not even attempt to get a jpouch (hopefully summerstorm will comment here). Surgeries can be done in one (very rarely), two, or three steps. If you have surgery in two or three steps, you will have to wear an ostomy bag for some amount of time.

I talked to three surgeons and they were all very positive about jpouch surgery and its outcomes. The only thing they warned me about was a decreased fertility rate.
Female, Age 19
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (4 infusions), 2.4 g Lialda, 1 Forvia, 6 Colazal/day, 1 Anucort
 


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 9/27/2008 3:01 PM (GMT -6)   
Hi neednewbody...I do too..lol.
     I have been in a flare since April.  My GI doctor has never mentioned surgery to me, so I took matters into my own hands in August.  I saw a top notch colorectal surgeon and guess what?   To my surprise he said he did not recommend I have the surgery.  Now, mind you, when I saw him I was off the prednisone for two weeks, still had some bleeding and urgency.  He had a look "up there", did a tad of scraping and said it didn't look bad.  He read over my colonoscopy results which was done while I was hospitalized in May.  In his very knowledgeable opinion, he said he considered my ulcerative proctitis...mild!!!  Well, if this is mild I sure hate to see what severe is.
     about a week later, I still felt the results of his exam and started to bleed more with urgency and six or seven bm's.  Had to go back on the prednisone.  Tapered off two weeks ago and guess what....back on the prednisone again!!!  This is getting old and I am getting very annoyed.  I don't know what else to do.  My GI doctor wants to send me over to the University of Pa Hospital to see some Remicade specialist but he knows darn well I am NOT a candidate for Remicade.  You realize these doctors get kick backs from these drug companies don't you?  My neighbor has her doctorate in pharmacy and works for the company who manufactures Remicade and she didn't want to admit that is the truth..but she didn't deny it either.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Still flaring.   Afraid that I am pred dependant.  Back on Pred 40 mgm for five days, then taper.  Other meds...Colazal, 6MP, Nexium, Cort enemas, Canasa suppository, Benicar, Toprol xl, water pill.
Calcium, Probiotic, Flaxseed oil capsule, multivitamin with Iron
Also have osteoporosis and high blood pressure
Remicade NOT an option. Not a candidate for surgery yet..says surgeon.


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 9/27/2008 4:21 PM (GMT -6)   
Please remember this is not a forum for bashing or promoting political opinions. If anyone wants to debate (again) the health care system, that can be done by e-mail or IM; this is not the place for it.

I can tell you what severe proctitis or proctosigmoiditis is. It's 25-35 BM's a day, constant pressure and always feeling like you're going to have an accident any minute, leakage with coughing or sneezing, large amounts of blood and blood clots, feeling like everything you eat changes to barbed wire as it's passing through your colon, a constantly bleeding anus from the irritation, and feeling like you don't have the energy to pick your foot up off the floor and move it forward to walk. It's passing out on the toilet multiple times from pain, shock and blood loss. That was my state for several years.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


neednewbody
Regular Member


Date Joined Sep 2008
Total Posts : 59
   Posted 9/28/2008 10:42 AM (GMT -6)   
I think the doctor usually prescribes what he feels is best for you and if he gets a kick back it is a bonus.  Most doctors think of you first.  Believe me, I have heard them complain about the drug companies more than you ever will.
 
For the state of your illness and electing for surgery... I think you should try all the drug options first and then think about life threatening surgery.
 
I posted this initially because i wanted to see what other options were out there so I dont feel like a lost cause when I flare up and the remicade doesnt work.  I will try Humira next but it is nice to know that the surgery is still out there as a future future future option.
Liver transplant 2004 -- liver is only healthy part of me
 
Remicade every 6 weeks - not working
pentasa 1500mg tid
palafer once daily
lomotil every day as needed
immodium every day as needed
 


Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 9/28/2008 11:08 AM (GMT -6)   

I would suggest meeting with a colorectal surgeon. Knowledge is power and it is much better to become well-informed while not in an emergency situation.  The surgeon can explain the different surgeries, how he performs them, recovery, positives and negatives.

You mentioned that "you should try all the drug options first and then think about life threatening surgery".  In many ways I agree.  But remember, many of these drugs come with their own set of "life changing" side effects.  After surgery, my daughter is now on no medications. Her body is probably healthier now than it has been in 2 years.


--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds
Step 2 scheduled for November 10
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, September 25, 2018 2:54 AM (GMT -6)
There are a total of 3,006,342 posts in 329,331 threads.
View Active Threads


Who's Online
This forum has 161829 registered members. Please welcome our newest member, fdgdfhdff8805.
205 Guest(s), 1 Registered Member(s) are currently online.  Details
mufjem