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Autoimmune Diseases For Hashimoto’s thyroiditis (underactive thyroid), Graves’ disease (overactive thyroid), Lupus, Crohn's disease, all types of arthritis, and all other autoimmune diseases. [Multiple sclerosis (MS) and Myasthenia Gravis (MG) have their own forums below.] |
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04-09-2009, 01:07 PM | #1 | |||
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At a year and a half i was diagnosed with Ulcerative Colitius and than in 2004 diagnosed it had become Crohns. From a year and a half till 2004 i was pretty much ok with the disease on just immuran and predisone only having the occasional flare up in the fall. Reason i was on immuran and predisone and not the 5ASA compounds which were the usual treatment for colitius and crohns patients when i was first diagnosed at a year and half was because i am allergic to the 5ASA compounds. So a mixture of immuran and predisone worked to help me stay in control. Once i was five i was doing so good they even decided to take the predisone out of the picture and i was just on immuran other than when i would get a flare up i would go back on the predisone but once better would be weaned off again. Problem is once my was diagnosed as crohns my ability to be under control stopped my doctors tried higher doses of predisone and immuran as high as they could go and added flagil but all in all it didnt work so i than was put on the humeria and trexol treatment which i guess u could say worked alittle but than after my RSD added in a nausea factor and i lost alot of weight it was hard to do the self injections of the humeria. So i was than put on Remicade which to me is the best crohns treatment out there. Its worked to control my crohns and everything was going all right in the crohns department. Problem is my crohns has been flaring up alot in the last couple of months and my doctor added endocort to the mix and waited to see if it would get me back under control problem is it didnt so he upped me remicade amount well that hasnt worked either. I am fortunate that cause of my RSD and the nausea with it i only usually at one meal aday so my flare couldnt do excessive. Problem is now i am lowering my one meals amount even more cause anything i eat is just going right through. I am going to set up an appointment with my gastro specialist but i am not sure what hes going to do and wondered if anyone else out there knows of any medication i might try. I really liked remicade it was a blessing for keeping my crohns under control and now that its failing i just want to get some more ideas to be able to have when i go to see him. Thank you for your help in advance.
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"Thanks for this!" says: | Curious (04-09-2009) |
04-09-2009, 01:42 PM | #2 | |||
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Hi LordWood
so sorry to hear you are having to deal with Crohn's as well my son is 19yo too and in 2006 he was dx with crohn's (he also has Tourette syndrome) He had been misdx for a couple of years and sadly that led to the ulceration from the crohn's intensifying plus he developed anaemia from the bleeding as well as a fistula He has followed a natural treatment protocol that has been tremendously beneficial. Apart from care with his anti-inflammatory diet he also uses specific supplements. he takes boswellia/curcumin and white willow bark as anti-inflammatory agents and slippery elm and DGL liquorice root for ulcerative healing. (must be DGL. not regular liquorice root) He also has a once daily Jarrow MultiFood shake. he doesnt tolerate iron supps well and so eats food rich in iron. We also cook with anti-inflammatory turmeric, garlic, ginger etc the GI specialist warned him he would need surgery if he didnt take the meds (remicaid was also mentioned) but because of serious side effects that he seems to always suffer on rx meds...he decided to try the natural route and is so pleased that he did!! Even the fistula has healed!!! he no longer has that horrid early morning pain nor bleeding there is also an excellent book called The Maker's Diet by Dr Jordan Ruben that gave us much encouragement. Ruben was dying from advanced Crohn's and now lives a very healthy life thanks to his dietary plan. We did not follow his protocol per se but rather used the info and recipe ideas from the book to formulate the plan my son is on Dr Andrew Weill also has really good info on following an anti-inflammatory diet http://www.drweil.com/ hope this can maybe bring you relief too
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~Chemar~ * . * . These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here. |
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"Thanks for this!" says: |
04-17-2009, 03:01 PM | #3 | |||
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I, too, tried the natural way . . . right before I lost my entire colon and rectum. I would caution that Crohn's is a higly individual disease, in spite of the fact that many gastros treat it with pretty much the same Rx protocol.
I keep fistula (have had one) at bay with Cipro. I use Pentasa (asa) and live on a highly restrictive diet. I can do no whole grains nor can I do foods high in fiber or residue, but this is mostly because of my j-pouch. And now i have to severely restrict fats too. As of late I have been studying the use of LDN (low-dose naltrexone) which has had some studied effect on Crohn's. http://www.lowdosenaltrexone.org/ Unfortunately I am currently battling scar tissue/adhesions from my recent laparoscopic gall bladder removal. My most excellent surgeon described a future day's-worth of work if I were to ever have my adhesions worked on! As a result of flagyl use (among a few other Rx's) I also fight peripheral neuropathy, with feet that often contribute to a chronic pain picture that can really lay me out.
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We live in a rainbow of chaos. ~Paul Cezanne . Last edited by Chemar; 04-17-2009 at 04:44 PM. Reason: NT guidelines on forum links |
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06-23-2009, 08:59 PM | #4 | ||
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Your post was a couple of months ago. By this time, I hope you have thoroughly researched Low Dose Naltrexone. Your immune system needs to be given better direction, LDN can help that happen. For your multiple issues, including RSD and Crohns, and Colitis.
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06-24-2009, 04:33 PM | #5 | |||
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~*Andrea*~ |
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07-27-2009, 08:43 AM | #6 | ||
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Hi
I too am among the RSD forum posters who has colitis. Is there a connection to RSD & UC/Crohn's that anyone is aware of? |
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11-08-2009, 03:11 AM | #7 | ||
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11-25-2009, 01:18 AM | #8 | |||
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Hi!
My name is Tina and new to NT. I have had Chrohn's for years, and just recently diagnosed with RSD. In my searches on the internet I seem to keep running into a number of people that have both Chrohn's & RSD. Would you happen to know if there is a connection? Interested in any info you may have on this subject. |
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