SCD no longer effective?

The SCD never worked for me so I can't comment on that but I would venture to guess that as meds fail us, diet can too.
Maintaining remission is not a given by using meds, using no meds, or following a diet, unfortunately. It may be time for you to research surgery so you at least are prepared in the event you have to go down that path. I ran out of options in 2001 and had surgery. Best decision of my life. No more meds, no more funky diets, no urgency, and no compromising my life. Good luck to you and I hope you can achieve remission.

Sue

Just a thought...Could your lowered immune system from the cold have increased the chance of a C. Diff infection?

It seems the whole concept of the SCD is that it creates a 'better' environment for 'good' bacteria. However, if C.diff got a foothold somehow, you may have to take care of that infection before your 'good' bacteria can recover.

Perhaps just testing for C. diff could at least satisfy you that that is not what's going on.

best of luck to you.

Thank you so much for the responses.

My only symptoms are that I have diarrhea about 15x a day with some blood and a decreased appetite.. and that this leaves me too exhausted to do most things. I don't have any pain, cramping, fever, etc. I really feel fine except for the diarrhea and exhaustion, but unfortunately the combo is quite debilitating. I can barely get off the couch.

My doctor's first guess was that C Diff might be the culprit, so he put me on vancomycin one week ago. The C Diff test came back negative, but i have remained on vancomycin just in case it was a false negative. But since I haven't felt any benefit from it after a week, I doubt that I will. (My next doc appt is thursday afternoon where we'll discuss where to go from here.)

(Oh, I forgot to mention... when I got that cold 3 weeks ago, my primary care doc put me on Amoxicillin. The diarrhea had already started by that point, but may have made it worse. Amoxicillin can stir up C Diff into action, so that's one reason my gastro doc suspected it could be the problem.)

I have not tried cutting out dairy completely; I will give that a shot. And I'll make some chicken broth. I did increase my S. Boulardii and acidophilus intake when the flare started.

As for other treatment options, I have tried mesalamine enemas before to no avail. And I'm not sure how I feel about trying more of the biologics like Humira... I'm afraid there might be side effects that we don't yet know about.

I have never heard of worm therapy. What is that?

I have seen LDN mentioned a few times in this forum, but it sounds like it's more of a maintenance drug and not something that is likely to pull me out of a bad flare. Is this characterization correct?

My optimal solution to this problem would like to find some way to get remission so that I could continue the SCD. I just need to find a way of doing that without Prednisone!

thanks,
Jonathan

Post Edited (diver47) : 5/31/2011 3:42:05 PM (GMT-6)

I have tried several times to make homemade SCD yogurt part of my food intake and it just does not work for me longer term. No idea what the problem is, casein? there's little lactose in it. My gut says "no dairy" even though my taste buds and brain say YES. Had the lactose test and it said I'm not intolerant. (I've tried the farmers cheese but it's "no" for me too).

I'm only suggesting you remove dairy for a week and see if anything changes for the better. For you it could be just a short term correction. I've had reversals of previous "no" food like (for me) fruit and juice. For a year my gut said no fruit or juices and now some fruits are OK and I'm soooo happy.

And I meant to ask
Are you on any Rx meds currently?

diver47,

Welcome to this forum. Sorry you have to be a part of this UC club :(

But you'll find it a great source for advice and support - all of which is invaluable.

Regarding:
I have seen LDN mentioned a few times in this forum, but it sounds like it's more of a maintenance drug and not something that is likely to pull me out of a bad flare. Is this characterization correct?

No, this is not correct. I think you will greatly benefit from the LDN; it will boost your immune system greatly.

And it sounds like your immune system certainly needs boosting - you've been on quite a few antibiotics.

As someone who has been greatly helped by LDN, I would recommend to anyone suffering with UC or Crohn's to try it.

Here is the link for the study done by Dr. Jill Smith of Penn State with Crohn's patients going into remission after 12 weeks on LDN.

http://www.ncbi.nlm.nih.gov/pubmed/21380937

 

If you need more info on LDN, and are interested, let me know and I'll post the info for you.

 

InSoFla,

Yes, I am interested to know more about LDN. Is everyone a good candidate to use LDN? Are there any bad side effects?

diver47,

Yes, I am interested to know more about LDN. Is everyone a good candidate to use LDN? Are there any bad side effects?

The only contra-indications to LDN use are: alcohol and opiate use (many painkillers are opiates).

Side effects - some are from reactions to the fillers used, the way to get around that is to use Transdermal LDN. Side effects initially are some sleep disturbances and/or vivid dreaming - that's for the first 2 weeks and then eventually wears off in most  people.

Here's the info on LDN:

Here's the Penn State research done by Dr. Jill Smith with LDN and Crohns Patients.
http://www.ncbi.nlm.nih.gov/pubmed/21380937

I am one of those that has been greatly helped by Transdermal LDN, and would urge you to try it. Here's the info on it from another post:

www.healingwell.com/community/default.aspx?f=38&m=2079694

I was diagnosed with UC and was bleeding pretty badly for close to 1 year, tried various regular meds which didn't work, they wanted me to take Remicade and I refused. Then I got the remicade or colon removal talk, and I said NO. I did lots of research and found LDN. It saved my colon, and in the process I started getting my life back. Bottom line is it works!

Please do your research on it. To me, it should be the drug of first choice, rather than of last resort, because it has almost no side effects, is cheap. But don't be fooled: most doctors will NOT prescribe it for you. You'll probably need to go to an alternative doc to get it prescribed. If you do decide to go for it, make sure you get the Transdermal LDN prescribed.

Here's the full info on LDN, so that you can do your own research.

I started on 4.5mg of oral LDN on 2/7/2011, and saw no change - still continuing to bleed at a 10.

When I spoke with the compounding pharmacist, she mentioned that I may not be absorping the LDN properly, and suggested I switch to a transdermal LDN formula, which would be a cream applied to the bottom of the forearm. She told me a lot of her pediatric patients do much better with the Transdermal LDN, and in some patients with absorption issues it helps too.

LDN - low dose naltrexone is very cheap - it costs around $25-30 a month (for pills or the transdermal cream). Gastro doctors usually don't prescribe it because they say "it isn't the standard of care". My gastro refused to prescribe it, so I found a local osteopath who did. I did ALOT of research, and the bottom line is: it works!

Once you get the script for it, you'll need to get it from a compounding pharmacy, who'll make it up for you, and ship it to you. The best compounding pharmacy in the country for LDN is Skip's Pharmacy in Boca Raton, FL.

They ship all over the world - they have 20,000 patients with various conditions on LDN. That's where I get my transdermal LDN. If you contact them, they'll tell you who locally to you will prescribe it to you.

You can reach them at: 800-553-7429

www.skipspharmacy.com

Please, go to www.youtube.com write: Low dose Naltrexone in the search field and you will find a pharmacist explaining where in the U.S you can buy your medicine. You can also read these pages to find more info to bring to your doctor:
www.ldninfo.org

www.lowdosenaltrexone.org
www.ldnscience.org
www.ldnresearchtrust.org

and if you want to find what other Crohns patients have experienced when used LDN, choose Crohns Disease at:
www.ldndatabase.com

Hope this helps. Good luck to you.

Please let me know how it works out for you.

XtraOrdinaryGuy and Alinus,

Thank you for the suggestions about what I could try cutting out of my diet. I'm curious though-- did you have prior success eating certain foods while on the SCD, and then all of a sudden have them start to bother you?

I've had success using the regular SCD guidelines for the past 1.5 years... is it possible/likely that my food sensitivities (for instance fruits/fructose) could have changed suddenly with this most recent (likely amoxicillin-induced) flare up?

thanks,
Jonathan

diver47 said...
(Oh, I forgot to mention... when I got that cold 3 weeks ago, my primary care doc put me on Amoxicillin. The diarrhea had already started by that point, but may have made it worse. Amoxicillin can stir up C Diff into action, so that's one reason my gastro doc suspected it could be the problem.)

Why would your Dr. have given you antibiotics for a cold???? That seems quite incorrect. I'm sorry to hear it may have contributed to a flare . I agree with others that trying some form of probiotics, be it yogurt or trusted pills, would be the best thing to do at this point. Oh, and perhaps start looking for a new primary care doc...

diver47 said...
XtraOrdinaryGuy and Alinus,

Thank you for the suggestions about what I could try cutting out of my diet. I'm curious though-- did you have prior success eating certain foods while on the SCD, and then all of a sudden have them start to bother you?

I've had success using the regular SCD guidelines for the past 1.5 years... is it possible/likely that my food sensitivities (for instance fruits/fructose) could have changed suddenly with this most recent (likely amoxicillin-induced) flare up?

thanks,
Jonathan

Jonathan, i was not as lucky as you - you can see my daily diet in my signature. Unfortunately i must handle my ankylosing spondylitis through diet also, so it took 1 year to get into remission.

to answer your questions:
yes, there were foods that started to bother after some time, like tomatoes, almonds, fruits, dry cottage cheese, honey, coconut flour and probably others.

yes, possible - to the seccond question. also you must know that fructose is an inflammatory sugar - not only for UC, but generaly speaking. There are some theories that advice maximum 1-2 fruits / day for healthy people to avoid those inflammatory effects. Consider your UC state, and make the calculations for yourself :)

Glad to hear you're feeling better !