Unstable recovery, with mini relapses, buy why? Any advice or suggestions?

Unfortunately, it's not as simple as eat this food, don't eat that food, take this supplement. If it was that simple we would all be doing it and telling our doctors to go take a hike.

garylouisville said...
Unfortunately, it's not as simple as eat this food, don't eat that food, take this supplement. If it was that simple we would all be doing it and telling our doctors to go take a hike.

Hi Gary,

Well let me start by saying that I am fully aware of everything you wrote. But it is a well known fact that certain foods are triggers and should be avoided, so over the years I have crafted my diet so as to illiminate these triggers.
After all I have been a sufferer for almost 30 years now, and during the last 12 years I have lived, worked and am now retired in mainland China, and for my sins I am liable to remain here for at least another 3/4 years.

This has meant that I have had to relearn about how to control my UC as conventional western medicines are either not easily available or if available are very expensive.
Also the choice is very limited so if you lash out for the medicine like I did once and it doesn't work for you, you have nowhere else to go!
For this reason I have almost always used TCM (traditional Chinese Medicine).

Nevertheless thank you for your input.

Regards

Hi Baoluo

Just wanted to chime in on the potato thing - skin on jacket potatoes is abrasive to the colon so you might be great with potatoes, just not the skins.

To get the most out of potato starch, just buy the powder, drink it with some water and down it on an empty stomach.

There's plenty you can try herb-wise to improve your symptoms. Some things that come to mind are:

Slippery elm bark powder 30 mins before a meal
Qing Dai (1g before bed and when you wake up in the morning) to act as a potent antioxidant
Grape Seed Extract (another strong antioxidant)
L-Glutamine powder (I use 10-15g with water sometimes)
Wheatgrass powder (10g in the morning and 10g in the evening)

Googling any of the above will give you more detail.

You could also ask your doctor to prescribe a quick round of prednisolone (2 week course, 30 mg with a taper). This will likely get you back to perfect form. Then you can focus on experimenting with the above to use as a part of a more permanent remission strategy.

Either way, I wish you the best of health - 30 years relatively symptom free is good going.

BAOLUO: I think you took my post the wrong way and I may have misunderstood your original post to some degree. I actually agree with you. It sounds like you have done well during your time with this disease finding out what works for you and what doesn't. I just didn't want you reading one of our posts and thinking that that was your solution because something different works in everyone. I've had tremendous success with grape seed extract and so have a few others but that doesn't mean it will work on you. You can read through our resources thread at the top of the page for more ideas. Many have success with resistant starches and many have success with Curcumin. All you can do is try and see what happens. They might work and they might not. I was just trying to say that if there was a sure fire thing that helped everyone then we would already be doing it. Everyone has to find their own way.

Kevin Watson said...
Hi Baoluo

Just wanted to chime in on the potato thing - skin on jacket potatoes is abrasive to the colon so you might be great with potatoes, just not the skins.

To get the most out of potato starch, just buy the powder, drink it with some water and down it on an empty stomach.

There's plenty you can try herb-wise to improve your symptoms. Some things that come to mind are:

Slippery elm bark powder 30 mins before a meal
Qing Dai (1g before bed and when you wake up in the morning) to act as a potent antioxidant
Grape Seed Extract (another strong antioxidant)
L-Glutamine powder (I use 10-15g with water sometimes)
Wheatgrass powder (10g in the morning and 10g in the evening)

Googling any of the above will give you more detail.

You could also ask your doctor to prescribe a quick round of prednisolone (2 week course, 30 mg with a taper). This will likely get you back to perfect form. Then you can focus on experimenting with the above to use as a part of a more permanent remission strategy.

Either way, I wish you the best of health - 30 years relatively symptom free is good going.

Hi Kevin,

Thanks for the advice.

Incidentally I do not eat the skins of jacket potatoes (wifes orders)!!
There is too much fibre in the skins of potatoes for my bowel to tolerate.

Wish I could Google, but here in China we no longer have this wonderful search engine.
The Chinese government blocked it about 9 months ago. All I can use now is Baidu which is not too bad, but nowhere near as good as Google.

Actually UC has put me in hospital twice in 30 years. The first time was when I was first diagnosed and then it was touch and go as to whether or not I needed surgery. I was put on a huge dose of I.V. prednisolone and oral sulfasalazine which pulled me back from the brink, so to speak!
The second time was some years later, but that was less serious thankfully. Once again prednisolone was used but the sulfasalazine was replaced with ulsalazine. This was done because studies had found that long term use of Sulfasalazine was not so good for your liver, ulsalazine being much more gentle with fewer side-affects.

To be honest I do not like the idea of using prednisolone as steroid drugs are extremely damaging to the body.
I will only use this as a last resort if my alternative therapy(TCM) fails to control my UC.
However at the moment it's not doing too badly. I never have more than five bowels movements per day and often it is only as much as two or three, which is quite normal. Often my faeces are formed and normal in colour, but I do have days when they are broken with small amounts of mucus. Thankfully blood doesn't often make an appearance, and then it is only spotting.

So for the time being I will check out your suggestions and hold prednisolone in reserve for an emergency.

Thanks again Kevin.

Regards

Baoluo (Paul)

Hi BAOLOU

Sounds like you are searching for the last X% of gut normalization/remission, but congrats on 30 years and success with TCM.

What you are describing sounds like what I went through which I call IBS and my doctor calls low level UC symptoms ha.

Mine are definitely related to food. Sorry your gut dislikes potatoes, it's a food that calms mine down whereas white rice does the opposite.

Two suggestions:
1) Probiotics- there are many being sold. VSL#3 is the one with clinical study backing it and it helped me greatly, don't know if it's available where you are. Others that helped me are Lactobacillus reuteri and L. plantarum. Some people have success with fermented food as probiotic but not me. Try any probiotic available but start slow (low dose) and up it if nothing bad happens. If nothing good happens drop it and try another one.

2)Look over your food list yet again. I had similar symptoms (not immediately linked to food) and when I removed a food my IBS symptoms disappeared. It is incredibly difficult to figure out what symptoms are related to what food. Maybe yours are not food/drink related but my remission improved after identifying ALL my triggers.

Seeing blood however is not IBS and when this happens (not in a long time) it is always fiber-related for me, as in my gut hates certain kinds of fiber. Cheerios would be in that category for me but can't speak for your gut. Milk is an IBS trigger for me.

I'm a believer in certain non-RX supplements that have helped my UC. Wish that good TCM was available in the US, I tried it when I lived in a other city but no positive results at that time. Diet modification gave me 90% of my remission but others here get nothing from diet mod.

Yes try grape seed extract. I use 3 grams daily 95% turmeric/curcumin as my major anti-inflammatory supplement plus a probiotic daily. People here have many paths to achieving their remission. Good luck.

Thanks to IamCurious & imagardener2,

It would appear that I am Gluten intolerant or at least my gut has trouble handling it.

So your useful comments have now confirmed my theory.

No more gluten, no more milk!

The TCM thing has taken a long time to find because there are so many remedies and not all of them are right for you, or me!

I have been pescribed everything from liquid enemas to boiling up the grass that produces the most bitter tasting drink you can imagine.

Finally though my Chinese wife found a convenient TCM remedy in a pill.

This first pill has now been replaced by something different to control damage and possible bleeding.

However my Cheerio + milk binge kind of upset my progress and heralded a couple of bowel movements that included blood.

Today I have had (so far) only one bowel movement which had blood, but since then (10 hours ago) nothing apart from dry gas, with me a good sign.
Hopefully my next delivery will be minus blood, very little mucus and formed, please God!

Regards

Baoluo