Tacrolomis

I'm sorry you are still not in remission. That must be very hard. I'm on month 4 and can't imagine 4 more.

I hope something gets figured out soon!

Deema and Katie,

Welcome to the forum.

How about trying supplements, diet, etc...

This is what's worked for me.
As a newbie to the forum, I think it's important for you to know that you have options, which your doc probably won't tell you about. So let me share with you what's worked for me.

Some meds work for some and not for others.

For me, the traditional meds failed me and the mesalamines I became intolerant of.
And when the doc gave me a choice of surgery or remicade, I balked and had to find my own way.

He also told me diet has nothing to do with UC, but I found that it has a great deal to do with exacerbating its symptoms!

I found that by doing these things it helped control my symptoms by 75%:
1) adequate high intake of vitamin d3 ( need to get your levels checked first)
2) probiotics are key, are you on any?
3) slippery elm powder to coate the intestinal tract helped greatly
4) l-glutamine amino acid powder for long term colonic repair
5) food combining
6) diet modification as in gluten and dairy free, Paleo diet
7) rectal meds help lots of folks out

Despite the decrease in symptoms, I was still BLEEDING very heavily at every BM. The Last 25% was taken care of by LDN, low dose naltrexone, which put me in remission. Within a week of starting LDN, the heavy bleeding ( too many times to count with blood clots and mucuous) which I had had for 1 1/2 years straight, went down to ZERO. And that is all thanks to LDN!

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

IMO, it isn't one size fits all, and you have to find what works for you, and it may be a combination of things like diet, meds, supplements, etc...

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Deema,

Glad you found the info helpful.
You could ask your doc to prescribe LDN, but I doubt he would.
There are other ways to get it.

How much vitamin d3 are you?
What were your blood levels at?

Probiotics are definitely key.
If you have decent insurance coverage, have your doc prescribe for you: VSL #3DS, and you may only have a small copay.

As far as gluten free, you don't have to buy expensive gluten free foods ( of which many are filled with junk). Look up PALEO diet - it's made up of lots of good quality grass-fed animal products, veggies, salads, fruits, but no grains or legumes.
It certainly has its learning curve, but the results are certainly worth it IMO.

Let me know how else I can help you.

Wow - 11.5 that is indeed very, very low.

When I first got tested my levels were in the low 20's, now with adequate supplementation my levels are around 68-69, which IMO is right in the ballpark.

Probiotics are important for anyone who has an immune system - and that means all of us!

And yes, even though it's just proctitus and not UC, I do believe the probiotics will make a difference.

Yes I'm taking the suppository version not the enema or oral, it had to be made in the medicine shop because it's compounded. It just burns really badly and I felt the flare up got worse. I talked to my doctor and he said to stay on it for at least a week to see if things get better. At this point I'll try anything. I will definitely buy the probiotic since it's helped you and from the reviews it seems it's helped others as well. My doctor said it was over the counter and he didn't give me a prescription but it's okay I'll buy it myself. He said it probably won't help but I won't know until I try. Sometimes talking to people with the condition helps more than talking to a million doctors.

Deema,

Glad the VSL#3 is helping you.

You said: Where can I get LDN?

Shoot me an email and I'll help you out.