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Ulcerative Colitis
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Posted 6/7/2012 12:21 PM (GMT 0)
In a terrible flare...not sure what to do ...I am taking Steroid Enemas nightly, 3 asacol hd twice a day, bifra rx iron, and 2 VSL 3DS....I feel terrible, stomach pains, gas, lots of blood, weak....its really terrible and not sure what to do...i feel like i am at the end of my rope
Posted 6/7/2012 1:28 PM (GMT 0)
Call your GI. You may not be taking enough Asacol or it might not be working anymore (I think I took 9 a day). There are lots of other drugs you can take to get back into remission. So sorry you feel at the end of your rope. I remember those feelings, but there are a lot of things that your GI can have you take so you'll be feeling better. You may have to take the dreaded prednisone, but at least you'll feel better.

Good luck!
Posted 6/7/2012 1:34 PM (GMT 0)
Hang in there. I sucks.

It could be the Rx Iron that is causing a lot of the stomach pain and gas. If your iron is really low, you might be better with infusions for now.
Posted 6/7/2012 1:49 PM (GMT 0)
Did you have the gas before VSL#3DS? If gas came after then stop VSL#3 and see what happens. Not everyone responds positively to VSL#3.

Have you tried eliminating gluten for a week or two and seeing results?

I agree about calling your GI but if it were me I'd try the 2 suggestions above for just 1 week first because your doctor will likely put you on oral prednisone which is needed in bad situations but I've always tried to avoid it unless desperate.

My best wishes in hopes you feel better. Been there.
Posted 6/7/2012 2:02 PM (GMT 0)
Sometimes probiotics can make you feel sick, back off a day or two and see how you do. I hope you feel better!!
Posted 6/7/2012 2:03 PM (GMT 0)
Have you tried taking some natural antiobiotic/antifungals? I been taking this thing called Garlicin and beleive it or not I am about to post how good I am doing since..I am on my first week and yesterday I had just about a perfect bowel movement with no blood at all. I even forgot to take my asacol on the very night prior to getting my first no blood near perfect srtool that next am. I know one thing for sure this product is designed to release in the gut and not the stomach so that the chemical from the garlic called allicin is released properly in the right places to kill off bad bacteria and fungus. I dont have any side effects from it in the way of garlic breath of burping. I will be reporting this in a thread in a few more days if my poo keeps a consistant perfect with no blood..I also been eating turmeric which also maybe be helping with the inflamation..I started the garlicin a week before the Turmeric..

Personally if that gas and the pain and the symptoms are bacterially related the Galicin can only help. I also forgot to mention I take Oregano oil time to time as it is also a natural antibiotic. I know that it has helped me with my energy and my sinus issues although I dont think it has the staying power to get to the gut where it needs to be to be as effective as the Garlicin which is a special time release tablet designed to get in the gut. Once again if any of your symptoms are caused my an infection these products in some time may help in my experience with them.


Good luck.

Steve
--------

Male 46 DX'd Mild Lower left UC 4cm section Feb 2 2012
Currently taking Asacol 800 HD 2 pills 2x a day.
Canasa as needed 1x day
Natures Made Muiltivitamin
2 teaspoons of turmeric cooked in rice daily added 6/4/12
Garlicin 1 a day as of 5/31/12
Oregano oil 1 a day as of 6/5/12-6/6/12 (On Hold)
Psyllium seed powder ( started 3/8/12) (On Hold)
Currently flairing since 5/20/12 - had a normal bowel movement on 6/6/12 and 6/7/12 with no blood at all.
Will be starting Vitmain E enemas soon.

Post Edited (twiggs) : 6/7/2012 10:24:05 AM (GMT-6)

Posted 6/7/2012 6:36 PM (GMT 0)
Can you just take garlic tablets? Is that what Garlicin is?
Posted 6/7/2012 7:32 PM (GMT 0)
When did you start this medication? Sometimes it takes a few days.
Posted 6/7/2012 7:55 PM (GMT 0)
No Michelejc, Garlicin is not like your normal garlic pills that most of them dont have that enteric coating to let it get into the colon. Garlicin has "smart release technology". I have taken other garlic with no help but alot of gas and belching..These do work much differently as I can tell already inonly one week oif use. Either way you cant lose in my opinion to try it..They are not expensive at all... Read below an excerpt..

----

The antibiotic qualities of garlic appear to be a direct result of the allicin produced from raw, crushed garlic. This is destroyed by age and cooking - cooked garlic has virtually no antibiotic value although it still retains other benefits.

-------

Garlicin has 3200mcg's of the component Allicin in it

Cholesterol meds might be a concern for some if they are on them and take this per the label on my Garlicin.

Here is a link to it..

Main product site:
http://www.naturesway.com/Products/Herbs/6791-Garlicin.aspx

I ordered form Walgreens online:

http://www.walgreens.com/store/c/productlist/nature's-way-garlic/N=361681-354084

10 bucks for 90 count..

I would recommend that if you take probiotics that you take them at least 2 hours after taking this product but imo the longer after the better..maybe take this in am then probiotics at night before bedtime..9am and 9pm
 
Good luck,

Steve

Post Edited (twiggs) : 6/7/2012 2:39:22 PM (GMT-6)

Posted 6/8/2012 12:42 AM (GMT 0)
     STill suffering huh?  I thought you were considering surgery.  What happened?  Don't procrastinate.  I walked in your shoes but finally had reached my limit of suffering and taking all those poisonous meds especially that prednisone.
Posted 6/8/2012 1:12 AM (GMT 0)
Be careful of the blood loss. Make sure your are getting your levels checked. I was in a grave situation at one point when my hemoglobin dropped to 3.9. Quite frankly that Asocol is useless when you are flaring that bad. Sounds like you need something else fast. Best wishes.
Posted 6/8/2012 2:04 AM (GMT 0)
How long have you been dealing with unbearable symptoms? I was very sick a couple weeks ago and now I am fine. I am on 6mp and although I have ups and downs, I have managed to be more consistent for quie some time - I am thankful for that. Have you tried adding a rectal in the morning?
Posted 6/8/2012 2:10 AM (GMT 0)
Turn:
You sound terrible and miserable, please,
Either call your GI or go to the ER.
Anyone dealing with this for this long, since May right? should be on a different medication
or some stronger doses of your current meds.

CALL YOUR DOCTOR. Maybe a few days in the hospital might get you some needed fluids and help you get the bleeding
under control and get your iron levels back up?

Take care.
Posted 6/8/2012 2:25 AM (GMT 0)
ASACAL etc never worked for me. I would drop the iron tabs because a researcher posted on here that it encouraged the bad bacteria to multiple and killed of the good bacteria.

Get an infusion to your blood if its really bad.

List everything you eat, could be one of them holding you back.

Psyllium seed powder, salmon, spinach ( iron in there ), apple pectin, glutamine, turmeric/curcumin, clay and lots of water and no other liquids but perhaps sugar-free chicken soup.

I also switched to sulfasalazine and Librax and a terrible bloody flare that would not respond to 100 mg prednisone, one in which I could not turn my truck fast nor ride my motorcycle at all ( bumpy ) stopped bleeding within hours. This had gone on for over a month, it was bad bad bad. Dr knew I was going back to hospital so after his schpeal i said I want to try sulfa and librax ( mebeverine is canada only ).

He agreed. I got off all meds, been 2 years come next month no flare.

Post Edited (aguywithuc) : 6/7/2012 8:29:01 PM (GMT-6)

Posted 6/8/2012 12:48 PM (GMT 0)
     Not to be a pooo poooer but I really don't think any medicine works on this disease.   The disease itself decides whether it wants to go into remission and except for prednisone (which does work on inflammation BUT causes a myriad of other horrible side effects) I don't think anything works.
Posted 6/8/2012 12:55 PM (GMT 0)
I want to agree with you Christine. The problem is that since the cause is unknown, all we have is drugs that impair the immune system which are used for other diseases also. There's no medication SPECIFICALLY designed to target the cause.
Posted 6/8/2012 1:01 PM (GMT 0)
     Somedude....I think a lot of diseases today fall into that "autoimmune" catagory, which, in my opinion, is another word for..."I dunno what the cause is, but autoimmune seems to fit" disease.  My daughter's friend is celebrating her 40th birthday today and has been suffering with RA since the birth of her child, 14 yrs ago.  She, too, has an "autoimmune" disease and that poor girl has been through the mill.   She has been on at least three biologics which had no effect whatsoever on her condition.  I just feel by pushing these biologics a LOT of people are getting rich at others expense.  Just my personal feelings.
Posted 6/8/2012 1:06 PM (GMT 0)
Your opinion is vaild and has merit. Nobody can tell you the drugs work when they didn't. Some people do well on 5ASA/immo suppr./biologics, it's all individual unfortunately.
Posted 6/8/2012 3:12 PM (GMT 0)

Christine1946 said...
Somedude....I think a lot of diseases today fall into that "autoimmune" catagory, which, in my opinion, is another word for..."I dunno what the cause is, but autoimmune seems to fit" disease. My daughter's friend is celebrating her 40th birthday today and has been suffering with RA since the birth of her child, 14 yrs ago. She, too, has an "autoimmune" disease and that poor girl has been through the mill. She has been on at least three biologics which had no effect whatsoever on her condition. I just feel by pushing these biologics a LOT of people are getting rich at others expense. Just my personal feelings.

And the problem with the biologics is they stop working after a while. My mom has RA and and Remicade worked for a while but now it's not working anymore. I hear that over and over again.
Posted 6/8/2012 7:58 PM (GMT 0)
I hear the same thing as well....actually, from my GI regarding some biologics. But, it could be that they kick start the healing process and maybe the other topicals/meds can control it from there. I think they're trying to figure out how/why the work well for some and not for others.

Somedude...the problem with some of the success/failure is that many docs don't start with the basics of 5ASA oral/rectal from the start. They start with prednisone. Same old. But in defense of that, many patients don't like using specific meds and want quick remedy of the symptoms. But they can end up paying bigtime regarding other health issues caused by the meds.

It's all about quality of life...some have no side effects from meds, others put up with them/suffer through them. Surgery is still a valid option...at least we can live without a colon, and we don't have the worry of some medication side effects that can last a lifetime.

q
Posted 6/9/2012 1:33 AM (GMT 0)
Turn,

So sorry you are feeling so down and are suffering so much. We all have been there when the disease seems to take control over our bodies. If you are so weak and tired it is time to check in to the hospital. Is there someone who can take you and/or stay with you? Not a good idea to be alone when you are so sick.

Please keep us posted on how you are feeling.
Posted 6/9/2012 6:38 AM (GMT 0)
It can take a while for the meds to kick in....for me I have found that the longer I let my proctitis issue go before treating with rectal meds (cortifoam) the longer it can take before the cortifoam kicks in and does it's job....I know it's really hard but try to be patient with the meds and hopefully they'll all kick in for you sooner rather than later.

Hang in there!
Posted 6/9/2012 7:33 AM (GMT 0)
Candida Albicans...that was my culprit...did a 3-week CandiGone cleanse and eliminated all carbs...just ate proteins and steamed green veggies, especially spinach. Brought me back from the pouchitis brink. Probiotic and Glutamine also helped but not without the cleanse/detox. Now I'm off all meds and just keep my carb input to a minimum. A couple of times per year, I repeat the detox to reset things. Wish I had tried it when I still had a colon. Good luck!
Posted 6/9/2012 2:19 PM (GMT 0)
first time I had UC was in 1987.
now I m taking asacol 800 , 3 times daily and when I feel weak with too much bleeding I m using colifoam .
Now since 3 weeks I feel so bad and nothing helps , don know why ? too much gas and 7 to 10 times going to toilet , pain all over the body , diarrhea with little blood .
4 days ago I start taking vitamins supplements and probiotics and iron. still the same specially gas ?
anyone can help pls?
Thanks ,

TONY
Posted 6/9/2012 2:20 PM (GMT 0)
Hmmm, I was going to give the Garlicin a try after reading here but it has warnings specifically towards IBS and gut infections.

Well that was regular garlic anyway, maybe the Garlicin releases later and doesn't cause that.
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