Surgery .....?

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Qvist
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Date Joined Jan 2009
Total Posts : 145
   Posted 1/10/2009 4:16 AM (GMT -6)   
"Just" a question that is probably an expression of my fear of what the future brings. So excuse me for trying to control my anxiety.
Why do we keep trying to battle this illness? Why don't "we" just get the surgery and get on with our lives ........?
 
Not that I'm no where near ready for that or even recommended it a my present condition, but sometimes it just seems apealling.....

Red_34
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Date Joined Apr 2004
Total Posts : 23551
   Posted 1/10/2009 7:39 AM (GMT -6)   
It can definately have it's appeal for sure; to be be free of this horrible disease. But you have to remember that having surgery to remove your colon is a major surgery. There are no guarantees. There are some people that have surgery and do great while the other half have even worse problems then before when they had Uc.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
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bbc
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Date Joined Mar 2008
Total Posts : 1580
   Posted 1/10/2009 10:47 AM (GMT -6)   
Red, what are some of the complications that can make one worse than before?

Thanks
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!
01/03/09 Trying a few new things...I'll report back after 90 days


bookworm21
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Date Joined Mar 2008
Total Posts : 1766
   Posted 1/10/2009 11:16 AM (GMT -6)   
I thought that about 90% of patients were happy with surgery compared to UC. But either way, surgery is kinda taking a jump into the unknown.
Female, Age 20
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis)1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, Remicade (5 infusions), 2.4 g Lialda, Forvia, 6 Colazal, 1 Anucort, Culturelle, Fish Oil, Calcium/Vit D supplement, 10 mg Prozac, VSL #3
 


Qvist
Regular Member


Date Joined Jan 2009
Total Posts : 145
   Posted 1/10/2009 11:24 AM (GMT -6)   

Definitly is !!

But if the alternative is massive doses of medicine and no remission ??

I talked to my mother yesterday. The have several friends who have Stomi (is it called that in English??). You know a bag on the skin for s**t. She said they seem to be doing excellent.

I choose to believe that. If potential future "worst case" isn't that bad it makes my present much easier ..........


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 1/10/2009 11:30 AM (GMT -6)   
There is a small percentage who get surgery end up with pouchitis or obstructions. In some, they can get chronic pouchitis. I dunno but for me personally, I would love to have the surgery myself regardless of the possible complications.
 @--->--SHERRY--<---@
Moderator for Allergies/Asthma and Co-moderator for UC
~Left sided Uc-'92-Colazal(9 daily),6mp(50-100mgs),Bentyl, Prilosec,Biotin,Forvia,Pro-Bio**Unable to tolerate Asacol, Rowasa or Canasa**~Year-round allergies-Singulair, Zyrtec~Secondary Reynauds Syndrome-'04-Norvasc~Sacroiliitis-epidural injections~bulging and herniated discs C5/C6 & C6/C7~3 epidural injections-worked great!, OA in my fingers 
To help Healingwell - click here: DONATE
 
 
 
 

 
 


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 1/10/2009 11:33 AM (GMT -6)   
It's called a "stoma" in english, you were close, lol.

Some people have complications like skin irriation if they have ileos and some have mental problems dealing with it. You can also get blockages, which are painful but solved fairly easily.
People who choose the j-pouch still go 4-8 times a day, some still have some urgency, also there is a chance of something called pouchitis, seems that most people get over that fairly easily too.

But to me, when i chose surgery, i looked at it this way.
I KNEW i HATED my life the way it was stuck in the house, takignall kinds of meds, not really living. And i read about people and i did see some people who were unhappy but most weren't. So i thought, Ok i KNOW i hate this, and if i have surgery i MIGHT hate it too, but then i am still in the same place just hating something different. And it was worth it to me, to take a leap of faith to see. So i did, second hardest decision i ever made in my life and i am sooo glad i made it.


Now, i think back to being sick and how horrible i felt and how much life i missed, especially when i am doing something fun, or eating something that i couldnt have before, and i think WHY did i think it was a good idea to just keep going sick, when i could have just had the thing out, it was attacking me, it didnt' wanna be there, lol, and been healthy for those 8 years.

subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 1/10/2009 11:34 AM (GMT -6)   
I guess I have hope that I will be able to get my condition under control--that through diet, Probiotics, ..., I'll be able to clear up any future flareups without the need for medication or surgery. I don't want to have an external bag, a J-pouch, bad kidneys, bad bones, ... I want my health.
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06
Currently in remission

-------------------

Lexapro (for stress)
Probiotics
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...
Avoid: anything with high-fructose corn syrup, foods high in fructose


Qvist
Regular Member


Date Joined Jan 2009
Total Posts : 145
   Posted 1/10/2009 12:03 PM (GMT -6)   
Wouldn't mind an external bag if I can just still kitesurf :-)

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/10/2009 4:26 PM (GMT -6)   
you could still kite surf i am sure I dont know what that is, but hey you can puddign wrestle with one, surely you can kite surf!!!
Actually there is a guy who is a pro surfer (regular one) that has an ostomy, no idea what his name is though, he also is a photographer, if you wanna look him up.

Qvist
Regular Member


Date Joined Jan 2009
Total Posts : 145
   Posted 1/12/2009 2:35 AM (GMT -6)   
summerstorm said...
you could still kite surf i am sure I dont know what that is, ........
 
Well summerstorm, we can't have that. Greatest sport of all.
 
A video to enligthen you smilewinkgrin
 
 
Crazyest kiteboarder in the world
 
 
Sorry if I went off topic here confused

Post Edited (Qvist) : 1/12/2009 1:39:16 AM (GMT-7)


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/12/2009 11:04 AM (GMT -6)   
OMG!!! that looks like the funnest thing EVER!!! i so wanna do that! like right now!!!
if i ever go to the beach again, i am gonna look into that.
And i think it's on topic you were showing me so i could tell you if i thought you could do that. And yes i see NO reason why you cant' do that! Just tape it on really tight and go for it!

Jeremy "Mr. Snuts"
Regular Member


Date Joined Oct 2004
Total Posts : 162
   Posted 1/12/2009 1:31 PM (GMT -6)   
Red_34 said...
There is a small percentage who get surgery end up with pouchitis or obstructions. In some, they can get chronic pouchitis. I dunno but for me personally, I would love to have the surgery myself regardless of the possible complications.


I have Chronic Pouchitis and its worlds easier then dealing with UC. Although I do have to go to the bathroom a bit, I can hold it if I need to, i've had not one accident, the cramping is 1/20th of the pain of the cramping with UC, less fatigue...all in all, it was worth it. :)
Diagnosed with Severe Ulcerative Colitis 1/04 -(18 at the time)
11/04 Total Colectomy
2/05 Ostomy Takedown
5/06 Pulmonary Embolii
Current Medications -
Vicodin 800mg when needed(yumyum)
Coumadin
http://www.livejournal.com/users/mistersnuts/

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