Experimented with some blueberries... Flared

Pro: Give niacin and pantethine a shot.  I will buy some tonight.

This is not vitamin B5.

Old Mike

http://www.disabled-world.com/health/cancer/colorectal/colon-cancer-fiber.php

https://www.healingwell.com/community/default.aspx?f=38&m=2493261

 

Have never been tested for fructose intolerance- used to tolerate bananas in moderation fine. It just seems that no matter what I do, my condition is getting more and mire intractable. Have GI appt coming up soon- will try and get rx for xifaxin at least - who knows, maybe in combo with mutaflor (spaced apart) it might have a benefit. Even tempted to shell out for TSO again, if it could get me into remission. And even though I felt sickly and fatigued, and orone to getting bursitis, on imuran, might consider it again as last ditch too (would mean giving up on LDN though).

Will try niacin and pantethine, Mike. L-threonine having no effect at all.

My gut hasn't been been happy with blueberries for a long time, and I try them again every now and then. I don't know why. I remove skin from pears and no gut problems. I eat walnuts (lots of fiber) with no problems. So it's something about blueberries (and cranberries are worse for me including juice).

It took me a long time to figure out what my gut tolerated and my diet was very limited for a long time to no fruit, no juice, no grains, no starches including starchy veggies. Now I can eat some fruit, some juice, rice and potatoes are OK but still no blueberries. (Gluten is permanently out).

Looks like you've given everything a good try. Wishing you good luck.
People (like me and others) who have done severe diet mod. know what you have gone through. Takes a will of iron some days.

Maybe blueberry juice is better (with no sugar)

Probiotic--I am really sorry to hear about your situation. My daughter has failed most of the drugs too and they are pushing surgery but she is not flaring as badly at the moment. I hope you find something that will help you avoid the surgery for now...my sense is that the people who are happy about are those who were just completely, totally at the end of their rope, and it sounds like maybe you have a little rope left still...

Old Mike, I looked at your posts and am really intrigued. I apologize for being lazy here but I am just cross-eyed with reading dozens of these studies in the past few weeks (and I was an English major)...so what is the takeaway? How much niacin and pantethine do you take? are there dangers or interactions I should know about?

thank you!

bearmama- yeah I am almost but not quite at the end of my rope. Forgot to mention that I also tried retarded release phosphatidycholine and failed that too- it made me worse. Also tried nicotine therapy and smoking- didnt help at all. GI did mention some new variation of Entocort for UC, some topically delivered steroid- if I could get off pred completely again, and use that low dose maybe it could buy me more time to try a few other things such as xifaxin or triple antibiotic therapy. I also rationalize that if (and that's just a hypothesis- I cant be sure) it was my blueberry experiment that flared me, that a bit of a modest ored surge could get me back to where I was before i messed up, which wasnt too bad, with some possible benefit from Mutaflor. But I cant keep pushing off lines in the sand ahead all the time indefinitely.

Well I have the Pantethine and Niacin, only took 500mg niacin and going through a
real good niacin flush, when I did this before your body gets used to it and I did not flush.
But boy this is a good one.
Old Mike

Probiotic,

I am so sorry to hear it.
Have you given any thought to trying glutathione injections?

The reason L-glutamine intake is suggested is becauseofthe conversion factor to glutathione.

I have heard of immuno-compromised people getting those injections and getting better.

Lodi said...


Somedude, I love you don't stop your commentary, it keeps me grounded.

I love you too.

Probi

When you say you flare regularly what does that mean? Just curious, because in the last 3 years I have seen my number of flares increase too.

Freedyj and Joma- Tho I once had a ten year totally med free full remission (simply using pred in mostly low doses, and then bentyl and pepto at the time got me into it) for many, many years now I would say I have NOT been in 100% remission, which is to say living without any gut pain. Scopes nowadays always show at best universal mild erythmia (inflammation) throughout the colon even when I have 1-2 normal formed stools a day (that would explain some pain 24/7)- but from time to time I have spurts of up to a few months of normal stools and very little pain.

The last time was when I gave up on biologics and started LDN- had a great run of just under a year of 95% remission, ut still had some mostly mild gut pain 24/7 and the occasional mini flare that responded at the time to a few swigs of pepto that could restabilize me for weeks (now however it seems that I react to pepto- probably a salycitate allergy has developed just as I have reacted horribly to all 5ASAs all my UC life.) I define a flare as when I cannot form stool without any prednisone and when pain becomes more serious, and that frequency nowadays tends to be more and more lately, eg every few weeks, unfortunately. I still am not quite ready to throw in the towel- there is a bit of beautUC in me as far as fear of the surgery road, but if I make the jump I will have to hope for the best and move forward. The fact that amputating a huge, complex x organ is the best docs can do for many of us makes me seethe with anger, though ( and yes, anger is not therapeutic, I know, lol.)

Oh, many rescue remedies that some have posted here, eg slippery elm, also make my UC flare, so they are by and large out too. Haven't tried the Terramin clay that cureforUC suggested- has anyone else had benefit from it?

Post Edited (Probiotic) : 8/22/2012 2:17:34 AM (GMT-6)

Pro: If Pepto would take you out of a flare,it says to me sulfate reducers. Approaches that might do something for you.
Triple antibiotic thearpy, low sulfur diet,low meat,no sulfur veggies,no sulfites,get a zerowater water filter pitcher to remove sulfates from the water you might drink and cook with. Low protein/fat,low sulfur amino acids,methionine and cystine.
Check any supplements for sulfates/sulfites,no wine,no beer,which you probably do not drink.
Even with all this you still might make taurine conjugated bile,and we have sulfomusins that the bacteria can chew on.
Search for low sulfur diet,I am sure to have forgot something.
There is also the pepto enema,you could do a small amount as a test,we have talked about this in the past.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1374188/
Old Mike

Post Edited (Old Mike) : 8/22/2012 6:03:20 AM (GMT-6)