Meds Not Working? Natural Options/Surgery?

What did the GI's you saw suggest as treatment? I assume they wanted to do a colonoscopy if you haven't had one recently to see what is going on inside. Did they propose blood tests and/or stool tests? Anyone talk about RX rectal enemas(they come in steroid and mesalamine formulations and get right to the area where inflammation can be creating big problems).

You need professional help right now, not internet forum help.
Diet has helped me enormously but it takes a long time to sort it out and I never had your extreme pain, just extreme bleeding and urgency ("just" ha).

You need a scope from a GI you trust and get good medical help.

I'd get back on remicade. I've been on remicade 3 years without experiencing a side effect.

You can get a blood test for remicade antibodies, you might not have any. I wish natural solutions helped everyone and were a sure thing, however for the majority they are not. The natural treatments are so wildly different on what works person-to-person (what is one's miracle, does nothing for another, and even makes anothers symptons much worse). You can see from people's signatures on what works for them individually. If you've got time on your hands and your symptoms aren't bad then there's time to expirement with naturals (many are listed in the resources thread). Just have a lot of patience, try a lot of different things individually, and realise there's no universal solution. UC isn't easy.

I'm thinking remicade is known to work for you, why not try a sure fire thing?

I had surgery and life is way cheaper afterwards. I go to the bathroom more, and I probably spend a few dollars more on toilet paper, but I've eliminated all the costs associated with doctors and medications. It has been fantastic in that respect. Unfortunately, with surgery, results vary. It would be great if we were all guaranteed a fantastic result, but since we aren't, it's risky. On the other hand, there are statistics to support a very high chance of a good result, so that helps make it a little easier. If you're really against drugs, and you're not responding to anything, surgery can be a good solution. It's also the only one where you're likely to be med free for the long term. Even if you were to get things under control with drugs, how long will it last? No one knows.. I can't say surgery is all roses, but with the limitations you've put on yourself re money and drugs, I don't know of anything else that will provide relief.

Some of the non-medical routes I've seen mentioned here repeatedly are curcumin, clay, fermented foods, slippery elm, charcoal, SCD diet, probiotics, FT - but you're already doing VSL I see... just depends how long you want to spend suffering. You should try things one at a time and give them each a good amount of time to see where it's going. If you tried everything, you could spend years hoping for a result. I wanted to get on with life, so I had surgery. They always remove the whole colon in the case of UC. Collectomy is the first step. Then they build the jpouch, then they reconnect you. If you have 2 steps it's 8 weeks with an ostomy. If you have 3, it's about 20 weeks! I did 3 and it wasn't the end of the world. I needed time to heal. I live like as I did before UC. Always out and about, beach, restaurants... My quality of life is much better.

this is from our resources thread:

ALTERNATIVE

Clinical Trials:
clinicaltrials.gov/

Diets:

• Anti Candida Diet
  
• Eliminating Processed Foods
  
• FOODMAPS
  
• Gluten Free Diet
  
• Lactose Free
  
• Low Fiber Diet
  
• Low Residue Diet
  
• Paleo
  
• Raw Food Diet
  
• SCD Diet http://www.breakingtheviciouscycle.info/
  

Fecal Bacteriotherapy: http://en.wikipedia.org/wiki/Fecal_bacteriotherapy

IVIG - Intavenous Immunoglobulin: http://www.ncbi.nlm.nih.gov/pubmed/1728132

LDN - Low Dose Naltrexone: http://www.lowdosenaltrexone.org/

User InSoFL's story about LDN

Nicotine: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2014383/

Phosphatidyl Choline: Must be compounded to release properly
http://www.annals.org/content/147/9/603.abstract

Probiotics: Can be in pill form, yogurt, kombucha, kefir, fermented foods. Common oral pills/powder are Align, Culturelle, Florastar, Naturen, and VSL#3.

Supplements: Aloe Vera, Bitters Compound, Bromelain, coconut oil, Deglycrrhizinated Licorice (DGL), Digestive enzymes, Flaxseed, Folic Acid, Ginger, Grape Seed Extract, Grape Seed Extract, Nopal Water, Holy Basil, Peppermint, pineapple, Omega-3, Oregano, Psylium Husk (metamucil or Citrucel), Slippery Elm, Turmeric/Curcurmin/Boswellia, Vitamin D, and vitamin-e enemas.

Triple Antibiotic Therapy: amoxicillin 1500mg/day, tetracycline 1500mg/day, and metronidazole 750 mg/day
http://www.nature.com/ajg/journal/v105/n8/abs/ajg201084a.html

Tumeric (Curcumin) Use in UC: Research on Safety and Dosing (see links below)

NIH fact sheet: Turmeric (Curcuma longa Linn.) and Curcumin
/nccih.nih.gov/health/turmeric/ataglance.htm

Curcumin (comprehensive 'summary' of the research for the public)
Micronutrient Research for Optimum Health
Linus Pauling Institute, Oregon State University
http://lpi.oregonstate.edu/infocenter/phytochemicals/curcumin/

Curcumin Therapy in Inflammatory Bowel Disease: A Pilot Study
Digestive Diseases and Sciences, Vol. 50, No. 11 (Nov 2005), pp. 2191–93
www.curcumin.co.nz/pdf/Curcumin_Therapy_In_Inflammatory_Bowel_Disease.pdf

Wellbutrin: some studies have shown Wellbutrin to be effective as a TNF Blocker.

Worm (Helminthic) Therapy: http://en.wikipedia.org/wiki/Helminthic_therapy

Medical Marijuana

Your case sounds exactly like mine did. I woke up with pain too and was on tramadol. I had surgery.

Update: Feel a bit better today? But it might be because I went back to taking all 40mgs of the Prednisone in the morning instead of 20mgs in morning and evening. More frequency but less pain and a little less blood. I will take the less pain over everything!! If it keeps up during the night then it will definitely be some kind of improvement which means I can probably last through the appointment decently tomorrow. But we will see... Nights typically tell me if I am getting better or if it was just the Prednisone change.

Still not eating much except for an egg and lactose free yogurt with a little fruit. Have gone from 136lbs to 121lbs so far during this flare.

The doctor convinced me/persuaded me to go back on Remicade again and see how it goes. I don't really want to and am going to hate to be so reliant on an expensive med for the rest of my life but things have gotten too severe.

Now just having to deal with the fun lonely factor in all this. Lost my boyfriend, and people that I thought were my best friends during this time. Going to be hard to get my feet under me even when I do get healthy!

If you lost them because you were sick then they weren't really worth anything at all. Real friends and good significant others stay with us through the good and the bad and want to help. I hope you quickly find a remission and some good friends and wonderful bf who truly deserves you!

Madeirey said...
The doctor convinced me/persuaded me to go back on Remicade again and see how it goes. I don't really want to and am going to hate to be so reliant on an expensive med for the rest of my life but things have gotten too severe.

Now just having to deal with the fun lonely factor in all this. Lost my boyfriend, and people that I thought were my best friends during this time. Going to be hard to get my feet under me even when I do get healthy!

How much are you paying for remicade? Typically when you've tried other drugs and have an severe diagnosis like UC, then insurance companies will cover it. You may just have to call your insurance several times, file appeals and have your doc document that you tried other drugs with no effectiveness/bad reactions and respond to this one.

That's fantastic. I think it's smart that you're taking the next steps toward getting your health back on track. I know it stinks to have to be dependent on drugs, but there really aren't any other great options. Even if there is something out there that would work for you, it's a lot of trial and error and it could take months or years to get it figured out. Not to say it's not worth it to try, but some people try, and never succeed. I didn't for instance. At least with your history of having success with remicade, you have a great shot & it could work very quickly. I understand people are right for saying those weren't your friends, but I also know it doesn't help when you're feeling bad about losing them. I am sorry your friends weren't there for you. As we get older, people become more understanding - well some of them, and you will find people who will stick by you through anything and everything.