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tardofit
Regular Member


Date Joined Jul 2008
Total Posts : 28
   Posted 9/8/2008 9:22 AM (GMT -6)   
Just had a complete colectomy and now have an ileostomy after 12 years of diagnosed UC and a life long history of bad bowls.
 
I kind of moped about if at first.............and now............I have asked myself a thousand times..............why did I wait so long.
 
No offence to all of you wonderfull people, but I no longer sob over taking meds and side affects or the pain from crap moving through my colon. And I no longer have to worry about where a "clean" bathroom is.........I pack it with me.
 
If you have thought about a surgery to overcome UC, stop thinking! And do it!
 
I feel like I have been reborn a new life.
29 year old male
 
12th year suffering UC


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 9/8/2008 5:10 PM (GMT 0)   
I am very happy for you...it doesn't make sense suffering day in day out for years, when surgery can give you your life back. I have found a way to suppress UC symptoms through diet, but at the sacrifice of the foods I like most, which really sucks...LOL

I'm assuming there are specific supplements minerals, etc. that you must take daily?

All the best,

NBT
Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/10/2008 4:27 AM (GMT -6)   
tardofit, can you explain why u didn't go for the j-pouch? i was headed for an ileostomy but then read somewhere that j-pouch operations were the norm! i have to admit that i was worried about my self image running around with a stoma.
Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


Fairbr
New Member


Date Joined Feb 2008
Total Posts : 5
   Posted 9/10/2008 7:17 AM (GMT -6)   
Hi, What a refreshing letter.I have battled with Ulcerative Colitis for over 10 years.Ive been on Asacol, Colazzo,steroids, rowassa enemas,foam enemas, etc.Then lately in Hosp. 5 times for IV steroids, Then Remicade, Humira and now he wants o try cimzia.Has anyone tried this?Im freaked about putting more drugs in by body.I feel ready to have the surgery, I just hope surgeon agrees.I want quality of life back and it sounds like you have quality of life.I cant wait to learn more about the surgery.Take Care Fairbr

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 9/10/2008 1:07 PM (GMT -6)   
Fairbr,

YOu can opt for surgery anytime for quality of life issues. You don't need to wait for a medical emergency.

Tardofit,

Congratulations on your success!

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


Gargamel
Regular Member


Date Joined Apr 2006
Total Posts : 172
   Posted 9/10/2008 2:38 PM (GMT -6)   
I am still not convinced about surgery...

My GI has been nagging me about this for nearly a year now, after failing most medicines including Remicade and the Adacolumn, he says I have no other choices.

I still find it difficult to give up my colon for the unpredictable and scary J-Pouch surgery.

How would I know if my life would be better off after the surgery?

What if I go for a J-Pouch surgery and come out with a permanent Ileostomy?

What if I still need to go to the toilet 8 times a day???

G

slim18996
Regular Member


Date Joined Apr 2008
Total Posts : 99
   Posted 9/10/2008 6:35 PM (GMT -6)   
Gargamel said...
I am still not convinced about surgery...

My GI has been nagging me about this for nearly a year now, after failing most medicines including Remicade and the Adacolumn, he says I have no other choices.
 
If you have failed all other medicines then right now about the only options are to deal with the symptoms or opt for surgery.

I still find it difficult to give up my colon for the unpredictable and scary J-Pouch surgery.
 
That is a normal reaction and understandable.  Surgery is permanent so the key is research all the options and for each person to decide if they feel it will give them the quality of life they are looking for.

How would I know if my life would be better off after the surgery?
 
Since we don't know what symptoms you are going through only you can decide if what surgery has to offer is better than what you are facing now.  Research it, ask questions from people who have been there, talk with your GI and possibly a surgeon then decide if it offers you a better life then what you face now.

What if I go for a J-Pouch surgery and come out with a permanent Ileostomy?
 
I have a permanent ileostomy and I can tell you it is a million times better than what I went through with UC.  I use the restroom when it is convenient for me.  I don't have an issue with incontinence or urgency anymore and the pouch is descretely hidden under my clothes so there is no obvious sign that I have an ileostomy.  An ileostomy is not the end of the world, in fact it has actually been the begining of a new life for me without UC.

What if I still need to go to the toilet 8 times a day???
 
From what I understand people with the j-pouch go on average 6 to 8 times a day.  The difference is no issue with urgency.  Most of them say that they empty their j-pouch when they urinate.  Another plus to it is that it only takes a minute or two instead of being locked up in the restroom for hours.  I almost opted for the j-pouch but was pleased with the quality of life my ileostomy gives me so I made it pemanent.  Again, each person has to make the decision based on their needs and what they are currently facing for symptoms.
 

 

Total Colectomy with End Ileostomy May 27th, 2008


Y2K Bug
Regular Member


Date Joined Jul 2008
Total Posts : 114
   Posted 9/11/2008 12:22 AM (GMT -6)   
After trying all that "Western Medicine" has to offer there is still :-
 
dietary options - many detailed in posts on this site.
osteopathy
chiropractic
acupuncture
traditional chinese medicine
naturapathy
 
i think you need to be happy that you have tried all the options that you think are viable before going for surgery. some of the surgery issues are discussed in the surgery thread if you haven't read it already .....
 
 
a GI i was seeing told me i might eventually need surgery 14 years ago - so its taken me a long time to come around. you probably aren't going to be as slow as me - lol.
 
after the op my CR surgeon told me you have to train your new plumbing to expand its storage capacity and i guess the number of BMs will depend on how that goes. so you might start out at 8 or so a day but then reduce to 5 or so. the number of meals and the type of food you eat will also be a factor.
 
its good to hear all the posative comments regarding surgery as i am booked to have the op in late Oct.
 
turn

Peter
 
49yo single dad 
dx 1985
mesalazine 1.5g, prednisolone 15mg
tried infliximab (remicade), humira, salofalk (5-asa enema), entocort, Azathioprine, steroid emenas, abadacept


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 9/13/2008 8:17 PM (GMT -6)   
just gotta tell you, surgery rocks!!! LOL!!!
I know it's scary, it's really scary and it's one of the hardest decisions you will ever make, but it is also one you will not regret. 
this ileo has given me my life back compeltly!  And the majority of the time i forget it's there, i am far too busy doing all the fun things i couldnt' do before, like going to the beach, and hanging with friends and going to waterparks and taking my son bowlign and stuff like that.  And way to busy eating ice cream, lol!
I am not gonna say it's always puppy dogs and fluffy clouds, there are a few down sides, but those are far outweighed by the good sides!
As for taking meds and supplements, i take a daily vitamin, that's about it. 

TNCrystal
New Member


Date Joined Feb 2006
Total Posts : 15
   Posted 9/16/2008 8:48 PM (GMT -6)   
Surgery was the best decision I ever made and I wish I had done it sooner, but I tried all of the medications first. The surgery is a very hard one, I am not going to lie - but in the end it is defintely worth it. I have been able to do so many things since having my colon removed. I even had my illeostomy for a year inbetween my two surgeries (I suffered a major blood clot as a result of my first one). The illeostomy was really a relief to not worry about where bathrooms are all of the time and whether or not I will make it. Living life after surgery is so much better than my quality of life with UC. It is scary but if you can deal with chronic UC, then you can make it through the surgeries to the brighter side at the other side of the tunnel.
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