NeuroTalk Support Groups - Any one else also have Crohns?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Any one else also have Crohns? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/83760-else-crohns.html)

that is interesting too for me mrsD as my son takes extra magnesium and vitamin D and B12 related to his TS/OCD so those are likely working along with the other supps i mentioned on the autoimmune forum thread to help his Crohn's symptoms as well

HAPPY BIRTHDAY LORDWOOD:partytime2:

i dont have chrons im sorry im no help at this. but im like you my pain being really high makes me sicker than a dog to my stomach and most times makes it that i cant eat so i live off miso soup of all things LOL.. i m like you i dont feel young at all. feel like im trapped in an 80yrs old body!!!!

im sorry that the methadone hasnt worked. i know that there was someone on here that had tried a new pain med called opena or something like that maybe they can try you on that ?

hugs
carrie

Lordwood,

I too am so sorry to hear that you deal with all of this as well as the RSD!:hug: I really wish I could help you and take your pain and problems away but I know I cant unfortunately. Just know that you are in my thoughts and prayers and if you need anything, I am here for you!

I don't have Chrons disease but do have pretty bad Irritable Bowel Syndrome and Constipation. I can go up to a week sometimes without having a bowel movement and it is VERY frustrating! I'm not on any medications at the moment other than Ketamine as and when needed as none helped so i'm not sure what causes my problems - i'm assuming that it is the RSD though.

I seem to go through phases where I have hardly any bowel movements and other times, I have to go to the toilet all the time and/or have diarreah (sorry to be so graphic!). I really wish that I could get it under control but nothing has helped so far really!

I'm sorry that you have to deal with similar issues also! It's bad enough dealing with the RSD without anything else! Please know that you are in my thoughts and I hope you feel better soon!:hug:

Quote:

Originally Posted by LordWood (Post 493380)

As i have mentioned before i have Crohns disease. Started at a year and a half with ulcerative colitis and than in 2004 was diagnosed that it changed to crohns. When i was younger with the ulcerative colitis after finding i was allergic to the regular medications used to treat ulcerative colitis they put me on high doses of prednisone and immuran which lucky enough kept my ulcerative colitis under control with only the occasional flare up in the fall. After 2004 my crohns then started not being under control and started flaring up and staying flared up for way to long. This was a huge problem as i was also still in school and because my school had bomb threats we had a bathroom pass thing where if the teacher was nice they would let you go but u had to get there signature and than sign out of the class and than sign into the bathroom which because of the threats only the one bathroom near the office was open and problem is when u have crohns u dont have time for all this. After attempts of even higher doses of the meds it still wasnt working so i went on a new treatment of Humaria and terexol problem with that treatment was because of my RSD and the nausea i had become very skinny and trying to give myself the shots was hard and also the treatment itself wasnt working. I was then refered to another doctor after my current one because he didn't know what to do he gave up on me. So after getting in with the next doctor he put me on IV Remicade and it was the best treatment i had ever experienced it kept my crohns at bay and did very well. Problem is now its starting to not work again and i am going back to it messing up my life. The doctor upped my remicade and also put me on another medication to go with it. But it seems like the Remicade is starting to lose its touch. Any other RSD patients find anything to help them??

I was dx with UC when i was 16 months old. up and down on the steriods... had a full colectomy when i was 10. it was under control, well i guess it would be non existant then, till about.... 6 years ago. I was put on remicade about 3 years ago, started at the 5mg, was doing good at every 3 months or whatever... then was having flares earlier, so we went to every 6 weeks, then to every 4. then increased it to 10mg. the remicade stopped helping about 2 months ago, after 2 and a half years. i just started taking humira. its helping. but not as well as i'd like. but its workable. they're not even sure if i even had UC back then, or if it was crohns all a long. the only reason they for sure know its crohns now is because i have a fisculas.

i'm going to stanford at the end of the week to see one of my GI's about what happens when the humira stops helping.