[LordWood]

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.

[Chemar]

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

[lefthanded]

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.

[mbaugh]

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.

Originally Posted by LordWood

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.

[msdrea83]

Originally Posted by LordWood

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.

hey lordwood, i'm in the same boat. i had UC when i was very young, 16 months, and was given high doses of pred. and imm. then when those stopped helping i had a full colectomy, and was on flagyl till i was about 18. then i didn't need it anymore. i started developing fisculas when i was about 20, and now lucky me i have like 4 of them that drive me insane. i was finally dx with crohns about 4 years ago, about a year after i got rsd. i was put on remicade and it helped a lot for about 2 years, then they had to increase the dose, and i had to increase the frequency of having the infusions from every 6 weeks to every 4. after about 6 months of that it stopped working and now i'm on humera. which isn't helping at all. so i am now scheduled for an ileostomy. and i've been told that even tho that should take care of things i'll still have to take the humera shots every other week for pretty much forever to keep it from starting up again. i'm soooooooo not looking forward to this surgery but its pretty much my only shot at gettin it under control and having a normal life again. i'm just keeping my fingers crossed that my rsd doesn't spread because of the surgery. so i'm going to see if they can use ketamine to sedate me, i'm hoping since the two ketamine infusions i've had have put me into remission that having one during surgery will prevent it from spreading. i hope ur able to find some kind of treatment that'll help u and you won't have to end up with an ileostmy too!

[Summertime]

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?

[Lori Denise]

Originally Posted by LordWood

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.

I found purely by chance with a good helpful and concerned family doctor. Never was this offered by my specialist. The medication is called Lomitil. She was looking at my history and had seen that a former doctor had percibed a small dose once a day when things were realy bad,at their worst. This Dr. really increased the dose. And suggested I try it again. I take two tablets 2.5mg each four times a day. The results were instainious.I was able to function as a normal person with in 24 hours. This med. slows down you intestinal activity and in turn seeming to absorbe more bile acids and allow you to go to the washroom and have a normal or at least close to a normal bowel movement and you have more control and routine and tend to go once or twice a day rather than in my case what used to be at minimum four times a day and alway imeaditaly after eating. And almost always unpredictable. Can provide more info if you wish.

[tjack]

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.