What options are left after all meds have been tried?

but since I tried everything drug wise should I try diets, ldn, etc..

You have been a member here for almost 4 years so you must have seen scores of posts about alternative therapies and diets. I would first recommend rectal meds such as Rowasa but since you said you have tried everything, then I assume it didn't work for you.

The first step for diet modification might be to avoid gluten for 3-4 weeks to see if your symptoms lessen. Then try the same for dairy. A food diary is an excellent way to correlate symptoms with triggering foods.

Most supplements are individual preferences but there are some universals that apply to almost everyone. Get your blood levels of vitamin D checked. While you are at it check B12, iron, and folate.

I see that you take fish oil, I also find it very helpful. Probably the most important supplement is probiotics. There are hundreds of posts about probiotics, probably VSL#3 is the most popular. But you need to discover on your own the most effective probiotics compatible with your body chemistry.

I like to mix probiotics with a soluble fiber. Powdered psyllium seed for me, others prefer psyllium husks (Metamucil), slippery elm or Citrucel.

Some of us have found diet and supplements to be very effective. I don't take meds myself and others prefer diet because like you, meds were not 100 percent effective. Perhaps a combination of diet and meds like Rowasa will work synergistically for you.

Check out our signatures to see what meds and supplements we take and what triggering foods we try to avoid.

I would definitely try diet or alternatives if I were having symptoms and I had tried all of the available medication. Surgery is the only solution your GI may mention, although many do not... there are other things such as FT or antibiotics, diet, LDN, clinical trials, antidepressants. It's really up to you how far you want to go with it or if it's time to go under the knife.

Thanks for the info

Surgery is tough, and if it's not negatively impacting your quality of life, it's not something I would recommend. It takes a lot to get through it, and you have o really want/need it.

Definitely try diet modification, and LDN - what have you got to lose?

bananagirl said...
if you can get by with how you are doing, then I wouldn't get surgery!!

it is good to know that you can get it if need be.

the surgeons I have met with keep telling me that I am delaying the inevitable. I tend to agree with them but that's ok! I will delay it for as long as I can. they can take my colon out but can't put it back in. it's so final so even if I try the same meds again and again, I will.

this is my mindset completely. i feel like a stupid guinea pig trying all these different drugs, responding initially to only get worse after. is surgery easy? nope but to me it's starting to become more appealing because emotionally the rollercoaster that is UC has been brutal.

This is what we are really after, histological healing.

Old Mike

takes a long time to load.

http://www.wjgnet.com/1007-9327/pdf/v19/i7/968.pdf

yeah, I think it's like... it would be inevitable if we lived forever. But most people with UC die of other causes before all the available drugs lose effectiveness. It's kind of like how if people lived forever, the cancer rate would be 100%.

I'll play devil's advocate and say that if I knew surgery was inevitable within a few years, I would do it now. The longer you flare the worse your overall health gets. Being in an inflammatory state for so long makes you more at risk for extraintestinal manifestations, and your B12/iron stores can be depleted over time. You might need multiple blood transfusions and the risk of reaction increases each time you get one. The more damage your colon endures, the greater the likelihood of having it perforate or develop TMC and require emergency instead of elective surgery. Your liver and appendix are adversely affected by colitis and PSC can develop which is *no joke*. Not to mention the possibility of developing dysplasia or even cancer -- then you need surgery AND chemo. While you're trying all those drugs again and again, you probably won't get a benefit but you're putting yourself at risk for the side effects. And last of all, you're missing out on those healthy years.

For eight years i suffered tremendously. I tried so many different foods, diets and medications and eventually got fed up and removed all the bad things from my life. Its not been easy but my wife and i prepare everthing ourselves with only the simplist ingrediants. No preservatives, no poisons, no toxins, no gmo foods covered in round up. All natural stuff. After a few months my body just became normal. Whether it was my diet or not UC sometimes just stops and goes into remission. While i never thought it would happen it did. Hope is a powerful thing!