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'm sorry to hear that you have to deal with crohns along with the RSD.

I'm lucky that I don't have that but I was just diagnosed with Motility Related Dyspepsia and Metabolic Syndrome. My PCP did some test and said that my system was shutting down so I saw a Gastro who tried me on 4 different meds and none of them worked.

My PCP just put me on Metromin and it seems to be working. My food doesn't go through me. I don't go to the bathroom like I should. I have been a mess for the past 8 months. So I am hoping this med does it for me, it seems to be.

As far as the Crohns disease, it's a hard one to get under control. I have a friend that has it and she finally is doing better.

I do hope you find something that works. You have so much going on that it's hard to get it all under control.

Feel better soon.

Ada

I have started getting bowel issues the last few years, irritable bowel, pain, problems with going to the bathroom because the colon won't cooperate in any way (as if it shuts down). I don't know if it's related to RSD or not but I am beginning to think that if RSD has been in your body for about 14 years (in my case), that it could be starting to affect internal organs as well... maybe... who knows for sure?

I'm hoping it will clear up with medication (some kind of special medicinal fiber pills) and that it's unrelated to RSD.

Yes RSD can start effecting your internal organs. All my nausea comes from it as well as more cause my RSD makes it that i have gastroparesis. And can also cause stomach pain. I think ur safe though cause one thing i do know is RSD cannot create Ulcerative Colitius or Crohns for ya so your safe in that department. Thanks again for your response.

Also for those of you keeping up with me i went to see my doctor yesterday and he added methadone to the mix. Problem was it wasnt fast enough as i have been getting paler and my eyes have been in worse pain and i knew something was going on and sure enough last night my pain levels sky rocketed higher than usual and i was up all last night and still no sleep i have also been puking and itching as well as my bathroom problem cause of the crohns so its just been such a great birthday....yes todays my birthday what a wonderful present to feel like ****. Thats another thing i wanted to say my body trys to revolt against the pain anymore but doesnt know what to do so it usually makes me itchy all over and makes me puke alot when it trys to revolt. When i told my doc he was like its cause of your meds but then i told him i have had this revolting before the meds. Do any of you have problems like this? i know i dont blame my body for doing this its tired of it all and so am i. There is a treatment i am looking into currently i wont say anything till i know i got it so i dont jinx myself but i am hoping i can get it to than tell u guys how it went and whether its worth to do for you or not.

Happy Birthday Lordwood. How old are you today, or should I say how young. I know you probably feel way older then you are due to the pain and the other problems.

I hope you get that treatment. I know you have been through way too much to be so young.

Sorry the Methadone didn't work for you. I loved it. It helped me a lot and I still keep it around for bad days.

Good luck on that treatment.

Ada

Thank you for the happy birthday. While i am still young to you my body feels that of an elderly person. Age is more of a dread to me as because i am young i will be enduring this pain for many decades to come.

Lordwood,

I too am so sorry to hear that you deal with all of this as well as the RSD! 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!

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.