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Ulcerative Colitis
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Posted 9/14/2010 9:22 AM (GMT -5)
The first 2 years of having this desease has been real easy, after being diagnosed with UC in 2007 i thought i could of been one of the lucky ones who gets away with it relatively scott free,but i was wrong, the last one year has been pure hell(with regards to UC that is)not my private life which has been fantastic,got married,had a wonderful daughter,new job,new home i really couldnt ask for more.
But all along i have had a flare that i just cant seem to get rid of and deep down i know i have changed from being a relatively happy person into a right miserable git at times,god knows how my wife puts up with me.
As for my UC i have tried almost everything,countless drugs,steroids plus IV steroids,enamas the lot all to no affect,well some did work for a bit but afetr a while it soon came back but with twice the force than the last time,and so i slipped back into the miserable me again of which for the sake of my own sanity and the love of my wife and daughter something has got to give. I personally cant go on like this,waking up all through the night bursting for the toilet,not being able to go to the shops or the park with my daughter incase i get caught short,it breaks my heart when im playing with my daughter and i literally have to leave her on the lounge floor while i scramble to the loo.There is more to life than this aint there!!!
My wife wants her loving,happy hubby back and my daughter wants to be able to play with her dad and i certainly want to be me again,i know some of you have dealt with this alot longer than me and i take my hat of to you but for me Enough is Enough,the drugs dont work so there is only one alternative for me,to have the bloody thing out.Its not a hard decision really when i look at my wonderful little family i have,i simply couldnt live without them and im scared i will drive them away if i stay being this horrible person i have become. Im seeing my consultant today,he did recommend surgery before but i opted out,but this time i may shake his hand if he recommends it again.
Well im off to see him......cheerio for now
Posted 9/14/2010 9:29 AM (GMT -5)
have you tried doing any diets to see if it helps your symtoms maybe the conultants are missing something, maybe just try to see if taking out the carbohdrates make a difference then you know the cause if it doesnt work it doesnt work then opt for the surgery
Posted 9/14/2010 9:43 AM (GMT -5)
I would say think about doing a pill camera, just to make sure there is not disease other then your colon.
Posted 9/14/2010 10:01 AM (GMT -5)
Surgery can be liberating; at least for me it has been.

Don't feel as if you haven't suffered enough. Some UCers have UC for a mere weeks before opting for surgery; some decades. It's really not about the length of time with the disease but the quality of life living with it. If your quality of life is diminished then surgery is a good option.

Sue
Posted 9/14/2010 10:04 AM (GMT -5)
Maybe you get some therapy to help you deal with the disease without being miserable or horrible to your family.
It might also help you decide if you are ready for surgery. Recovery from surgery is no fun either! You'll need to have a good attitude through that too, so therapy would help, either way.
Posted 9/14/2010 1:50 PM (GMT -5)
Hello Ring of Fire74

Now that the signitures aren't at the bottom its hard to know what your on or tried.

Have you read the book and tried the Specific Carbohydrate Diet, for many it works wonders?

Have you tried and continue to take a good quality  Probiotic?  Probiotics are soooo  important to take daily.

What about a Fibre LIke Metamucil, very important to someone with UC.

Is your diet a healthy one or does it include alot of processed and refined foods.

Daily excersise helps, it calms the gut and the mind.

You might want to ask your Doctor for a perscription for LOMOTIL it slows down the colon so after your BM"s take one and it might allow you to enjoy going out and not having to worry about running to the loo.  It has been a lifesaver for me especially running 24/7 with my 3 kids who don't really care if I make it to a toilet or not.

Don't give up you just need to find the right combination of things that work for you, it has taken me many years to figure out how to control my UC and now I have fewer flares and definately not as severe as in the past.

Posted 9/14/2010 2:05 PM (GMT -5)
Here mate I am with you in the same boat small daughter amd girlfriend no tablets working for me and sick of taking them.
I don't think this is going to go away either think some of us are just unlucky.
I think all thats going to work and eventually going to happen is surgery even though it sounds horrific I'm only 27 don't wanna live like this.
Posted 9/14/2010 2:50 PM (GMT -5)
You know, there's nothing "wrong" with opting for surgery. So many of these posts seem to say "Try this, try this...." Which I find kind of offensive. If you don't want to try anything, so be it! I personally would rather yank the colon out than live a life subisting on home-made yogurt & almond flour bread. No cake??? No ice cream? No salads? Sorry, not for me. If you've had it, you've had it- nothing more to try. And no shame whatsoever- good for you, take things into your hands, live your life, play with your daughter, make your wife happy. Please don't think of surgery as "giving up". You have a defective organ, you either choose to live with it or not. I do think certain supplements can be helpful, but the bottom line (for me) is the UC is not caused by the foods you eat, the meds you take/have taken, or your stress levels. Good luck, whatever you choose!
Posted 9/14/2010 4:54 PM (GMT -5)
Right, Eva Lou!
I think surgery is a very logical treatment for many of us.
I wish now I had thought it through and had surgery when I was young, and not suffered all those years in my twenties and thirties.
Now there is Remicade, which works well for me, fortunately. But it's not for everyone.
Posted 9/14/2010 6:59 PM (GMT -5)
There is nothing wrong with opting for surgery. Just make sure you get all your questions answered by your GI and surgeon. The most important thing, I believe, is to find the very best colo-rectal surgeon that you have access to. This is complicated surgery and there are many judgement calls that need to be made along the way. Make sure that your surgeon has done gads of these surgeries. My 18 year old son had his colon out last September, had his J pouch built in January and his take down the end of February. It was a long and very bumpy road and he had more than his fair-share of complications but he has just had his anniversary and he is doing GREAT. For him, surgery was a miracle. It has completely given him his life back. He is healthy in every way and has more energy than he can remember.

I wish you all the best and am happy to answer and questions.

Cathy (and Dillon)
Posted 9/14/2010 9:46 PM (GMT -5)
don't ever think of surgery as "giving up" or think you havent tried enough things.  If you are ready for an actual cure, then get that colon out!  it doesn't want to be there anyway, lol.  I only tried 4 different meds, i refused to try enemas or do any of the diets, i was already limited enough on what i could eat, and i didnt want to make it worse.

When my son was born and i was unable to do things with him, like you are takling about, having that poor baby play in the bathroom all day, i said, thats it, i am done!

i went to the dr and i said get this thing out!  and i had surgery, and yes recovery is really really hard, and yeah it hurts.  But the difference is, when that pain is over, you are healthy, for good.  Eat whatever, go whereever, do whatever.  Like sue said, its liberating, it frees you from the disease of from the cage it keeps you in.

And please, if you are ready for surgery don't let your GI talk you into trying other things, mine talked me into remi and i ended up just wasting 8 more months of my life while it failed.  Don't second guess yourself, go with your gut.

good luck!

Posted 9/15/2010 5:24 AM (GMT -5)
Hi guys and thanks for your replies.
I have tried alot of things i.e aloe vera,probiotics,physillium powder all to no avail and whenever i hear someone say "Try this!" i get my hopes up a bit and go and buy some,but deep down you know nothing is going to happen so its back to square one,i now dont want to wait years to find something that only does half a job only for it to come back with twice the avengence as before. I have heard about certain diets but is that really for me,id like to think that im a healthy 36 year old,i run 3-4 times a week(done a few marathons and countless half marathons) which for me is a great stress buster but now i cant even manage a mile without stopping,so my only other enjoyment in life(apart from my family) has now stopped. My whole life has been put on hold.
My consultant said yesterday that there is cycosporin or infliximab still left to try but as i cant take azathiroprine then this is unlikely to work so instead of poisoning my body with more s**t, we then talked about surgery and its something that i now want. I know it will be a tough ride but this last 15 months has also been tough.
Trust me that i dont want to be cut open and parts of me taken out but for me its simple,it doesnt work and cant be fixed, deepdown im very scared but i want my life back and be shot of this dreaded desease once and for all.
If any of you would like to share your story of surgery and how you feel now then id be very grateful to hear it.
Cheers bowiestar,its fantastic being a dad. Life has new meaning
Posted 9/15/2010 8:24 AM (GMT -5)
I feel awesome. I had surgery 9 years ago for loss of quality of life. Since then I have hiked 200 miles across England, 100 miles across Scotland and Ireland both. I have hiked in and out of the Grand Canyon, completed the John Muir trail in the Sierras (216 miles) and have traveled and hiked in Patagonia, Argentina, Turkey, Switzerland, France, etc. I'm getting ready to head out for a 4 week hiking and biking trip to SE Asia. Believe me, none of this would have been possible with UC. The unpredictability of the disease had me cancel one European trip and several backpack trips. I am so grateful that there is a good option to life on meds and on limited diets.

You can meet jpouchers at www.j-pouch.org or if you are interested in a permanent ostomy go to HW ostomy board or the jpouch board.

Sue
Posted 9/15/2010 12:24 PM (GMT -5)
i feel great! i opted for a permanent ileo, i just didnt want a jpouch.
i understand what you were saying about running, i was never much of a runner, although i did do two miles about three times a week, before UC,but i liked bike riding, and i loved dancing, but with UC i was way too sick!
I dont do any running now, the pred wrecked my knees. But i do the insanity workout every day, which is a really good workout, and i go dancing anytime someone will take me, lol. The point is i have plenty of energy now! something i never had before.
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