Crohn's Disease Forum » Ulcerative Colitis Forum » Willing to try anything

05-20-2013, 07:34 PM   #1
preciousdays28's Avatar
Join Date: May 2013
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????
05-20-2013, 09:39 PM   #2
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FrancisK7's Avatar
Join Date: Nov 2012
Location: Montreal
Has the possibility of Humira been discussed?
05-20-2013, 10:01 PM   #3
Join Date: Jun 2012
Location: St Louis, Missouri

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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!
05-21-2013, 03:31 AM   #4
Cross-stitch gal
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Location: Vancouver, Washington

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Hi and welcome to the forum I'm afraid that I don't have any ideas. But, can offer you some hugs and support in what you're going through.
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday

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05-21-2013, 06:25 AM   #5
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2thFairy's Avatar
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Location: Dallas, Texas

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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.
Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
05-22-2013, 02:58 PM   #6
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sickinlk's Avatar
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Location: Donegal, Ireland

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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.
Julie 36 y/o female.
dx'd with UC in june 2011.
intolerant to 5 asa's caused pancreatitis!!
steroid resistant
on remicade since sep'12. doubled the dose in june'13
May'13 added 6-mp. on 75mg.
CAme off remicade April '15, hoping to get back on it asap.

Last edited by sickinlk; 05-22-2013 at 02:59 PM. Reason: spelling
06-25-2013, 12:06 PM   #7
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Join Date: Sep 2009
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.
08-08-2013, 02:57 AM   #8
Join Date: Aug 2013
Location: Roma, Italy
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.
09-03-2013, 02:44 PM   #9
Cedars 01
Join Date: Sep 2013
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
12-18-2013, 08:47 PM   #10
Join Date: Dec 2013
I would try cutting out all dairy, wheat and sugar and take a high dose probiotic
12-18-2013, 08:53 PM   #11
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fozheart's Avatar
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Location: Newport News, Virginia

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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!
12-21-2013, 08:54 PM   #12
Join Date: Nov 2013
Location: Hamilton, Ontario

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!
12-21-2013, 10:28 PM   #13
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VeganOstomy's Avatar
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Location: Oshawa, Ontario

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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.
Visit my blog to find out how I live with an ostomy while maintaining a vegan lifestyle. Tips, reviews and food


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