Were you in my boat...

If prednisone didn't help at all then I do kind of wonder if your ongoing issues might be more associated with IBS than UC. Have you had a recent scope confirming the inflammation?

You already know what your options are: surgery or Humira. Unless someone has discovered something new we haven't heard of yet.

Not trying to be a smart aleck but I lived with much worse symptoms than yours for 10+ years, would've been thrilled to have 1 BM/day with no bleeding.

My remission through diet mod. took 2+ years with multiple twists and turns until success. Meds never helped me either except for the mes. enemas but they weren't a cure just a bandaid for bleeding.
Depression is not in my DNA but I can certainly understand how normal it would be to be depressed due to UC.

The two things I added recently that have removed the last annoying symptoms are:
this probiotic I like more than VSL#3 and it's waaay cheaper
www.amazon.com/Natures-Way-Primadophilus-Reuteri-capsules/dp/B00185OHAA
and this oregano oil capsule that (I think) has an antibiotic action
www.nationalnutrition.ca/detail.aspx?id=6464

98% of supplements I've ever tried do nothing (or negative results) for me, kinda like most RX meds.
So when something works it feels miraculous to me.

Hang on and keep figuring out what makes you better.

edit to add: No it's not psychosomatic, UC is real.

Post Edited (imagardener2) : 12/25/2013 8:43:08 PM (GMT-7)

There's nothing foolproof, but a scope would give a hint. A less invasive test that is sometimes used to distinguish IBD from IBS is fecal calprotectin -- it's a stool test for detecting intestinal inflammation.

I don't really understand the point of comparing levels of suffering... I was miserable when I had one BM per day and a lot of pain like the OP, just like I was miserable when I was totally incontinent 20+ times per day. No one wants to spend the rest of their life in pain.

If it's more IBS-like in nature, you might consider trying a low FODMAP diet. I know you've eliminated a lot of dietary stuff but there are some foods excluded from the FODMAP diet that aren't necessarily intuitive (e.g. onions and garlic are big offenders) and FODMAP can be beneficial for both IBD and IBS.

Do you know if you have any perianal problems that might be complicating the rectal discomfort, like hemorrhoids, fissure, etc?

Last but not least, it's not like it cured my UC or anything, but I feel I got a lot out of doing talk therapy. If you think your symptoms might be worsened by stress, anger, depression etc it can only help.

If you're dealing with emotional ups and downs, I would try an antidepressant if you're open to it. Have you considerd Humira? I've seen some people using xeljenz too. I guess there is a clinical trial. Cimzia is newly approved and vedolizumab should get approval soon. There is also FT as a possibility. It really just depends how far you want to go to save your diseased colon :(.

Have you considered going on a surgical consult? It's not like you're committing to have surgery, just wrapping your head around it as an option. Many people who have been through surgery mention that they wish they had done it sooner. Of course, I desire to keep my colon so I understand if you feel similarly.

I think I'd drop the supplements if you're not getting any benefit from them, they may be doing more harm than good. I've seen way more people say fish oil has made them worse than better. It's unfortunate because fish oil is overall good for you, it was very bad for my UC.

Have you tried antibiotics? steroid enemas? When was your last scope? Was there active inflammation? Are you taking oral mesalamine?

In some ways I agree with Gary, if you're going once a day (unless the discomfort is really bad), it may be chasing something unrealistic to improve upon that. I go once a day and the consistency varies. Sometimes it's perfect, other times not so great. I could chase the perfect poo every day but I don't think taking more medication would make the result worth it.

obviously gary hasn't a clue what he's talking about - I mean really, how does he consider himself to be in a "3 year flare" when the only uc symptom he has is going 2 or 3 times a day - seriously gary ? there are only a few people on this forum that are doing better than him - he just doesn't seem to get it -

wish I had something profound to offer you cb, but I don't - I just encourage you to hang in there and keep at it - it took me almost 10 years to get where I am - hopefully it won't take you that long -

Sorry if my post upset you. I didn't mean to say I was worse off, I have been in a long remission so I am not dealing with too much UC right at this moment. As I said, if you're dealing with frequent pain ad discomfort, it's not chasing something unrealistic. Everyone should be able to live life free of pain. Once a day or 20x, if you're dealing with overwhelming pain throughout the day because of this, you should definitely seek to feel better. Did you read my first post? I offered some ideas that may be helpful.

I think "no help" is a bit of a stretch, the OP just hasn't achieved complete symptomatic remission.

pluot said:
I think "no help" is a bit of a stretch, the OP just hasn't achieved complete symptomatic remission.

The OP said this:
I've been living like this for 2 straight years with no relief.

Thank you all for the replies.

First of all, I was directing my earlier comment at Gary. I must have been forming my reply when you replied, itsalwayssomething.

 Woofwoof, no hard feelings. Perhaps I should have been more explicit about how the pain I experience interferes with my life.

imagardener2, thanks for the information. I'll look into the Oregano and the probiotic you mentioned.