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Willing to try anything

My husband was diagnosed with Pan UC in Oct 11'. He has never been in remission and we are now looking at surgery. He has had 2 hospital stays and was on prednisone for almost a year. He is finally weaned off but is no better. He goes probably 20 times a day, mostly bloodly and loose. He is constantly tired and all of his joints hurt. He is on Calcium 2000mg daily, Vitamin 2000iu daily, Imuran 100mg (anything more and he feels ill) and that is it. He was on Remicade they were giving him double doses every 4-6 weeks and it would help for maybe 2 weeks but that was it. They want him to start the predinsone again but we are both scared. While on it he balloon up, was moody and was always sweating. He recently had a bone density test and it came back on the low normal side. Whenever he eats he is in the bathroom within a few minutes, sometimes he doesn't even make it through the meal. The only other thing that was tried for him was Pentasa 8 tabs daily. That was only for a short period of time because of no improvement. I am at my whits end!!! I don't even know if he is getting the proper nutrition anymore. What else can we try????
 
Hi, I don't know if LDN (low dose naltrexone) helps those with UC but it's been a blessing for my daughters crohns, especially getting off predisone.
Hugs to you!
 
He sounds very similar to what I went through. In the end, nothing was working and I agreed to colectomy. Best freakin' decision I ever made. If he is not ready for surgery, however, Humira might be worth a try. It works similarly to Remicade but may be just the thing to help.
 
hi and welcome to the forum.
has he ever smoked. nicotine is a treatment for UC and ive been told this by different medical personnel this past year. if he never smoked would he consider using nicotine patches or an e cigg. I think if he's an ex-smoker the real thing will only do as I found out for myself.
I also suggest humira, LDN, fecal transplant and SCD. that's all I can think of at the moment.
ju
 
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try a fecal transplant. they have been shown to cure ulcerative colitis in small trials, and there are now 7 larger studies in the next 1.5 years. its also more frequently used to cure c difficle another gi condition that occasionaly leads to a form of colitis called psuedomembraneous colitis.


here is my post about it on this site.
http://www.crohnsforum.com/showthread.php?t=52400
 
I think Humira is the last resort here, but since Remicade wasn't helpful, I'm not sure it's worth trying. However, you can discuss it with your doctor. It won't get worse anyway. As for predinsone, I won't recommend taking it again. C'mon, he had been taking it for a YEAR with a zero effect. The point is they don't know how to treat UC and keep prescribing inefficient pills because they merely have no other options left. I know the side effects and they are awful.
 
My 27 year old daughter has pancolitis...pentasa stopped working after 1 year and she was put back on steroids in January. She started remicade in April. She continued bleeding and 20 trips to bathroom at night. Her doctor admitted her in Early JUne fir I've Steroid 60. He ordered her off work and talked about surgery. She came home to rest and she started the Specifc Carb Diet a week later. Her inflammatory numbers were over900. She has had miraculous results with this very strict diet. Her latest inflammatory number was .4!! She returned to work today...she will stay on remicade and is almost off steroids. The diet needs to 100 percent and you need to make your own yogurt it could be worth a try. good luck
 
I would definitely try a different medication other than going on prednisone again. The long term use is so dangerous, and weakens the colon tissue, which for me, caused a rupture. Best of luck to him!
 
Hi,

My husband has had UC for 20 years. Two things that work for him:

1) Cigarettes - smoking fixes a flareup within 48 hours every time. I know it is not the best solution, but I think it is better than the nightmare of UC flareups.

2) Aloe vera gel - it tastes awful but my husband swears that it works. It takes about 2 months so keep at it! And make sure it is pure aloe vera, not papaya flavor or the like.

My husband has been on steriods etc and once the doctor told him her would need surgery.... but aloe vera and cigarettes worked for him and he still has his colon. Good luck!
 
I'll echo what 2thFairy said - if his disease has done enough damage, a colectomy will likely change his life for the better.

Pan UC is quite severe and his risk for colon cancer is higher because of that - add in the drugs (esp. imuran and remicade) and there's more problems (as you confirmed with the bone density test).

People have offered a lot of advice, but those suggestions usually only help with mild to moderate disease.

I'm so sorry to hear of his struggle (and yours). Don't rule out surgery; I'm sure his doctor would agree that it's likely the best thing for him moving forward.
 
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