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Yafit
Regular Member


Date Joined Apr 2008
Total Posts : 53
   Posted 4/23/2008 6:52 AM (GMT -6)   
My son (29) was diagnosed with UC few years ago, he had 4-5 flare up, every time it gets worse. The last flare up started about 5 months ago and the asacol does not help(he takes them anyway 4 pills 3x daily with food).
This time he developed strong pain in the joints.

He is a workaholic which explains why I am here and not him.
It seems that every time he gets a new job, it is more stressful that the previous one, he gets a flare up.
He lost 25 lbs and food is limited to cooked veg and chicken.

bloody watery stool, very bad abdominal pain, gas etc.

is there a holistic approach ?

Dr wants to start with immune system suppressive pills - he is reluctant do do that...

Any suggestions?

julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/23/2008 7:11 AM (GMT -6)   
Sorry to hear that your son is not doing well. You can find lots of info on this board as well as on the Chrohns and Colitis foundation of American website. (www.ccfa.com)

Off the top of my head, just as someone with UC for 10 years here are some ideas to look into:

1) Many people don't respond to Asacol. There are lots of similar drugs that wind up working for those same people. If you read my signature, you'll see that I tried a whole bunch of them over the course of 8 years. Some would work for a while.

2) It's worth trying more of the Asacol-type drugs before going to the immunosupressing drugs. When I started taking 6MP, I was confident that nothing else had worked and that it was the best option for me.

3) Everyone here will quote our great community member Quincy/Heather who says: Treat from both ends! Rectal meds will be the best way to help stop the bleeding. See recent posts on steroid enemas or google: cortifoam, cortenema, entocort, rowasa, canasa. Those are the rectal drug names in the US.

4) We all experiment with different holistic approaches like you mention. Diet changes work for some, not others. I've had great success with acupuncture. I know people who swear by yoga.

5) Stress plays a big factor for most people. Your son may need to take some time off from work to get out of his flare. Remind him that he can always ask him employer about short-term disability and/or FMLA leave. He'll have job protection and should be able to get at least partial pay. Sometimes just taking a rest and breaking the cycle of stress can be great. But then he needs to take care of himself! :)

You're a great mom to look into this for him. It can be such a help to have someone else do the legwork and research on different options.

Are you sure that his doctor is good?

Keep us posted.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 4/23/2008 7:28 AM (GMT -6)   

That is all great advice.  you should look into probiotics as well.  I also take bee propolis, seems to help.  I do the acupuncture too, and that is showing to be a great thing for my uc.  He could take a cours of prednisone just to get the flare under control.  For me, it gives me immediate relief of symptoms, but it is something you don't want to stay on too long.  I am always on the the oral 5ASA drugs and rectal meds.....can't live without them.  Good luck and I hope he feels better soon.


diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female


munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 4/23/2008 7:28 AM (GMT -6)   
Has he tried azulfadine (generic is sulfasalazine). Asacol did nothing for me. Azulfadine is working great. Worth a try before going on the immuno suppresants, which is what my GI was ready to put me on. But the Azulfidine has gotten me back into remission. Rectal meds definitly help soooooooooo much too.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 4th night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............


Yafit
Regular Member


Date Joined Apr 2008
Total Posts : 53
   Posted 4/23/2008 7:33 AM (GMT -6)   
Dear Julee, Thank you very much for your quick answer!
He takes an enema every night and that does not help. He is on the west coast and I am on the east coast, I am going to be with him next week for 2 weeks.
He was treated in Cedar Sinai in LA 2-3 years ago, now he moved to LV and got a Dr that was recommended by Cedar Sinai.

The bleeding does not stop, I have an aunt who say that Chinese herb called Yunnan Paiyao help stop the bleeding - have you heard of it?

I also read on this site that calcium help with watery stool, I will recommend that to him. I see that almost everyone takes a multi vitamin, I told him, but he is so afraid to take anything, he takes fibers, probiotic - once a day. Now I saw people were helped with Digestive advantage, from any pharmacy, I just do not want to bombard his fragile system with all these pills, I only pray that God will transfer his problems to me.

Yafit
Regular Member


Date Joined Apr 2008
Total Posts : 53
   Posted 4/23/2008 7:42 AM (GMT -6)   
Dear Lemonhear and Munchkindd, Thank you so much for the advices I wrote all down and will let him know.
I wonder, if the asacol does not do anything, I think I should tell him to get off them.

munchkindd
Regular Member


Date Joined Oct 2007
Total Posts : 348
   Posted 4/23/2008 8:04 AM (GMT -6)   
I'm sure you have seen through all the post here that there is no magic medicine for all UCer's. Different things work for different people. I was taking Asacol for 2 years with absolutely no improvement. It did take almost 2 months of being on the Azulfidine to get into remission, but I probably noticed an improvement after a month or so............Good Luck to him, I hope he can find what works for him.
*******Donna*******
 
diagnosed with uc 27 years ago.  Enojoyed 10 - 12 year remission (approximately 10 of those years without any meds)
 
currently on Sulfasalazine 2 tabs 3x day. Folic acid, mesalamine enema every 4th night, will try to spread it out more. Omega 3, Probiotics, multi vitamin, cacium supplement, Biotin....
 
In remission since Jan 2008, can't believe it.............


NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 4/23/2008 11:26 AM (GMT -6)   
 
your son needs to find a way to reduce stress in his life...stress is bad for healthy people and it's worse for those of us who have colitis. Until then, I really don't know what will work for him...looks like he's already trying the diet approach...is he avoiding sugar, milk and starches?
 
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.


Yafit
Regular Member


Date Joined Apr 2008
Total Posts : 53
   Posted 4/23/2008 11:50 AM (GMT -6)   
Dear NuffinButtTrouble, Thank You for your support, yes, he is avoiding all dairy products, sugar, coffee, etc... he tried to avoid protein but could not, very hungry and tired. He eat cooked chicken and veg.
Asacol does not help. I just read about vitamin E enema I will tell him about that, he takes a medicated enema but no change.
I wish someone would know about a Chinese herb called yunnan paiyao to stop bleeding, have you heard? I might post a new post about that to see if someone knows.

princesa
Veteran Member


Date Joined Aug 2007
Total Posts : 2204
   Posted 4/23/2008 12:51 PM (GMT -6)   
I'd highly recommend you (and he) read Jini Patel Thompson's book Listen to Your Gut. This is the most comprehensive book - really a reference manual - I've found detailing all types of alternative and natural treatments for IBD, including dietary recommendations to address varying levels of symptoms. It discusses probiotic supplementation and natural supplements that are healing for an inflamed gut.
 
 
I do agree with the other posts that stress reduction is vital... even if it means taking a different job or taking a sabbatical. I went from a stressful ad agency job with a horrendous boss to a laid-back state job, working with great people. It makes a huge difference.
Diagnosed with ulcerative colitis spring 1999.
 
Maintenance dose sulfasalazine.
Probiotics, l-glutamine and fish oil caps. George's aloe vera juice. Oregano oil antibiotic, antiviral, antifungal.
 
 


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/24/2008 7:21 AM (GMT -6)   
Yafit,

What enema is your son using? I assume it's Rowasa, the most common. I never had fantastic results with Rowasa. I use Cortifoam instead to get bleeding under control. Maybe he should try a different rectal med. There are a few (with steroids and without) and perhaps he just hasn't found the one that works for him.

I don't know anything about that chinese herb, but my belief is that Chinese medicine can treat UC extremely well. I was in remission for a year with regular acupuncture. He may be able to get some advice about alternative medicine from Cedars Sinai. I bet there are neurologists there who refer to acupuncturists or who know who the best ones are. If you find a good one, s/he might know about the herb you mentioned.
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.
Alternative treatments I have had success with: Acupuncture, Hypnotherapy


puffed rice
Regular Member


Date Joined Feb 2008
Total Posts : 495
   Posted 4/24/2008 7:49 AM (GMT -6)   
Yafit, I agree with julee on the enemas I used salofalk enemas but It took a long time to get things under control plus they are hard to retain when your flaring.  Cortifoam worked great, it stopped my bleeding and I was able to use it many times troughout the day with no problems, its easy to retain, and it has a little steroid in it to calm the inflammation faster than the asa's but I still use the salofalk suppositories for maintenance while in remssion nightly.  They are also easier to keep in if its proctitis your treating.

Diagnosed with Ulcerative Colitis 1995
Salofalk Tablets and suppositories daily
Bio-K Probiotic daily
multivitamin
metamucil nightly


Yafit
Regular Member


Date Joined Apr 2008
Total Posts : 53
   Posted 4/24/2008 10:12 AM (GMT -6)   
Just finished to text my son, no blood today but he has joints pain all over the body, this is going on for about 2-3 weeks,
he says now he knows how "old" people feel...
I read that this will go when the flare will go, but now, anyone knows any approach to the pain?

This is the 1st time I had ever join a forum, I have to say that this is a warm family of strangers!

I love you all!!

Thank You!!

puffed rice
Regular Member


Date Joined Feb 2008
Total Posts : 495
   Posted 4/24/2008 7:46 PM (GMT -6)   
Yafit, the joint pain definately comes with a flare.  I always found that a good warm bath with epsoms salt soothing especially before bed.  It helps to relax and soothe the whole body.  Excercise definately helps also to relax the body, I aways excersise first thing in the morning with a good power walk and I swear that the colon relaxes and therefore less trips to the bathroom.

Diagnosed with Ulcerative Colitis 1995
Salofalk Tablets and suppositories daily
Bio-K Probiotic daily
multivitamin
metamucil nightly


lemonhead
Veteran Member


Date Joined Dec 2007
Total Posts : 1028
   Posted 4/25/2008 7:52 AM (GMT -6)   
Yoga, stretching, and low-impact exercise helps me when my joints hurt. Also, stay away from advil, aleve any non-steroid anti-inflammatories. I only use Tylenol. Hope he feels better soon.
diagnosed with left-sided UC in 1997. (45cm)
Currently on 10mg Prednisone
12 caps of colazal    9 caps Colazal
2 rowasa enemas nightly
35, female

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