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Ulcerative Colitis
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Posted 5/30/2012 4:05 PM (GMT -5)

Hi all-

My husband was diagnosed with UC in March 2011, and was put into remission fairly quickly with Prednisone and Asacol. He started flaring again November 2011 and has been ever since. He has seen 3 different gastroenterologists, a naturopathic doctor, and several primary care physicians. He has become resistant to steroids, tried the naturopathic route, received 4 infusions of Remicade, and nothing is helping at all. We are now at a loss of what to do next and would like to hear from some people who have opted for surgery. He has another gastro appt on Friday and we are thinking surgery is going to be the next suggestion.

Thank you!!

Posted 5/30/2012 6:26 PM (GMT -5)
You might want to try www.jpouch.org - you'll find folks there that have had the surgery and may be able to offer a different perspective. Good luck!
Posted 5/30/2012 6:57 PM (GMT -5)
Welcome to the forum.

I'm sorry your husband is at this point.

Have you given any thought to LDN, low dose naltrexone?

Posted 5/30/2012 7:13 PM (GMT -5)
You should probably read some of the posts on the Ostomies forum.
Posted 5/30/2012 7:42 PM (GMT -5)
Hi, my daughter, who just turned 17, is just a year from her take-down surgery.

she tried all the medicines also. Was going to try humira but her GI doctor didn't give it very good odds for it to work for her. So within a week from her remicade not working she decided on surgery. Hers was done in 2-steps. It was the best decision she could have made. She has no regrets. Out running around
like a typical teenage girl. Good luck to you Friday.
Posted 5/30/2012 9:54 PM (GMT -5)
Surgery can be a good option but it is also risky in my opinion. I guess it may look risky to me because I read the ostomy board and see a lot of people having problems but overall, it seems to have a great outcome. I rarely see a person who regrets having had surgery. It's a difficult procedure with a long healing time but it can give you your life back and in the case of resistence to steroids and biologics, it may be the only options offered by doctors.

There are alternatives you may want to consider. A few I would try are, LDN, triple antibiotic therapy, fecal transplant, worm therapy, antidepressants... There are a lot of things you CAN try but it's also possible that you will go a year trying all of these things without success and wish you had opted for surgery and gotten it over with. It's not an easy decision. I hope he's able to get back in good health whichever route he decides to go.

You should view the resources thread on the top of the UC forum main page, there are a post in there with a lot of medical and alternative options. You can also opt to try other mainstream drugs such as, Apriso, Colazal, Flagyl, Imuran, 6mp, methotrexate...
Posted 5/30/2012 10:43 PM (GMT -5)
Hi there,
Sorry to hear about your Husband's misery with UC (and it can't be much fun for you either!).

I know you've come for advice on surgery especially when there are no obvious signs of meds working. I myself am fortunately not at that stage yet and have a few options to exhaust before I get to the decision you and your husband are facing. You didn't mention whether you'd tried modified diets like the Specific Carbohydrate Diet or GAPS Diets. I guess you will have, but I just wanted to check. I'm having some decent improvement (not healed yet though) after 3-4 months on the GAPS diet, the first month of that the first month is also used rectal steroids.
Also have you tried rectal meds?

I am of the belief that Diet makes a big difference to UCers if they can implement it long enough and in the correct manner to see improvement and via elimination work out what does and doesn't work. A couple of weeks is not usually long enough but a couple of months should give you an indication. I know everyone is different and there will be just as many saying diet makes no difference. My view is that I had nothing to lose and plenty to gain by altering my diet for few months.

If diet hasn't helped your husband then LDN is the worth trialling too. I haven't used it yet but it will be my next option to add into my regime if I can't get full relief of symptoms from diet alone.

You'll get a lot of good advice and options to weigh up from knowledgeable people on this site. Good luck to you and your husband :)
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