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Crohn's Disease Forum

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  1. Robrich

    How much is copay on medicare for remicade without a supplemental policy?

    20%of the discounted Medicare rate. You would be smart to get the supplemental Medicare coverage plan F. That's what I have . Iam on entyvio and pay zilch nada! The book price is like 11k but the Medicare rate is 5k medicare pays 4 BS PAYS ONE I pay nothing
  2. Robrich

    Kidney Stones and Crohn's

    No sodas Take An herb called Chanca piedra literally stone breaker. I had my first and only a little over a year ago Horrific pain Good luck
  3. Robrich

    Kidney Stones

    I had one most painful thing I ever experienced next to my resection anyway Sodas are a big big no no. I take an herbal tincture called Chanca piedra, stone breaker, haven't had any since Urologist said next time before going to the er take ibuprofen and jump up and down supposed to release the...
  4. Robrich

    Entyvio (Vedolizumab) Support Group

    I too am on the 8 week interval. Trying to wean off steroids, halfway there. Slow going. The 4 week interval was only recently approved. Discussed with doc last time and think I will go to 4weeks after mt next visit. My only issue is a PA fistula I have a seton very little drainage but probably...
  5. Robrich

    Fistula just won't stop!! I hate this thing!!

    Nixie finding the right doc is crucial. If possible you want to see someone that specializes in Crohns disease at least a GI who will work with you. They told you not to bother because they had no long term solution or plan and don't understand crohns. Basically you just keep trying everything...
  6. Robrich

    Fistula just won't stop!! I hate this thing!!

    Nixie I have a fistula as well not as complicated as yours and not my first time either. This one has a seton. Antibiotics will help! A if the docs object tell them it's worth a try. What's the harm? Antibiotics are part of the standard protocol for Crohns. Flagyl, cipro combination is the...
  7. Robrich

    Can't afford meds or doctors, what herbal supplements actually produce results

    Doubt you will get the results you want from herbs. You might do better on an elemental and or GAPS diet. Have you looked into LDN? lots of info on this forum Also. Prednisone is dirt cheap as opposed to budesonide which is what they probably gave you for steroids.
  8. Robrich

    DNA studdy suggests Neanderthals suffered from Crohn's Disease and Psoriasis

    I had bad psoriasis around 11 years old c. 1960. Prednisone took care of it after trying many other things and many doctors. Several years later the Crohn's symptoms began. Never connected the 2 until recently. May have some mild symptoms again.
  9. Robrich

    Fistulizing Disease from hell

    If you could get your hands on Prochymal it is the only stem cell treatment approved anywhere and it happens to be Canada. It is approved for gvhd. It is undergoing phase 3 trials in the U.S. for crohns. Maybe you can find a way to get access to it in Canada Stem cells are the best treatment...
  10. Robrich

    Anyone had to stop due to liver/kidney issues?

    I was on 6mp and remicade. Was doing fine but they kept upping my 6 mp to get the levels into the "effective" range. High bilirubin!? no worries! I was extremely fatigued for weeks on end then I became jaundiced my skin was dry and scaley and I realized my liver was shutting down just like...
  11. Robrich

    Entyvio (Vedolizumab) Support Group

    Kate d actually it wasn't about the antibodies for me it was about needing more immune suppression as my body was overpowering the Entyvio. It's in the same thinking as combination therapy using immune suppressants with a biologic. Sometimes it helps. You don't know until you try and I am...
  12. Robrich

    Entyvio (Vedolizumab) Support Group

    I added MTX to Entyvio as the ENTYVIO alone wasn't working well. Adding the MTX has helped.
  13. Robrich

    What actually heals fistula

    Asa takes 3-6 mos to work and may or may not close the fistula Antibiotics cipro/ Flagyl can help close or minimize the fistula drainage. Remicade and Humira have the best track record healing fistulas. Serious side effects occur in less than 1 in 200 people. Your decision if the odds are worth...
  14. Robrich

    Nutrients 2015

    Fermented foods and bone broths! Both are essential healing foods esp for crohnies. I have a PA fistula and the bone broths definitely help. When I stop using it the fistula activity increases and when I make a new batch it decreases. Probiotics are very complimentary and help improve BM, more...
  15. Robrich

    Amoxicillin and probiotics balance

    I am taking augmentin same thing Advised to take probiotics either side of 2 hrs before or after taking AB. I think taking them during AB helps the good bacteria get established and not the bad guys like c diff. Works good for me. Usually take them at bedtime Make sure you get the best...
  16. Robrich

    Sticky Stem Cells for Crohn's Disease and other IBD

    At my visit with my GI yesterday at UCLA I asked her about Prochymal and she said I would be a candidate! I said what 2-3 years away at least right? She said its now "open label"! She floored me with that remark! But I don't qualify yet as I haven't officially failed everything I am now on...
  17. Robrich

    Success stories with MTX?

    Good read crohsninct thanks. I've had all 3 types, Started as inflammatory DX was UC. 20 yrs later stricture with abscess. Now mostly just fistulizing in the PA.
  18. Robrich

    Absorb plus fistulas

    For me it's augmentin and prednisone until something else works. I ve used the absorb plus but only for 3days. It's a good product. I am like you keeping that option in mind if it comes to that. Also Use their wild Oregon oil with it in place of antibiotics. The gaps diet is also very healing or...
  19. Robrich

    Trying a 3rd biologic?

    Being as you failed due to antibodies cimzia is worth a go. you might want to try a combo therapy. If 6 mp failed you could try MTX that's what I am doing now with Entyvio and it seems to be helping but ENTYVIO is slow. Good luck
  20. Robrich

    Got the flu

    Definitely selfish and insensitive on your sisters part. I don't think you should flip out if you can control yourself, But let her and her husband know you are sick Due to their selfishness. Maybe they will be more considerate next time Me I stay away from people esp kids this time of year.
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