I wanted you'r thoughts on something if I could?

I am thinking about stopping all meds. I was wondering what you think? I have been taking something for crohn's and the tag along problems for 3or4 years now. I am very tired. I see my GI monday and I thought I would suggest it.
I asked my husband tonight if he would come in with me and he said he would. I don't know how I feel. I'm in pain on meds. so I would be in pain off meds. What would be the difference?

Any thoughts or any experiences would be appereciated. Thank you

rj

NOT a good idea, at least not in my book! Maybe some could be eliminated or doses adjusted. Depends on what the meds are. But w/Crohn's disease you NEED medications specifically for the disease itself, not necessarily for the symptoms but for the inflammation that is Crohn's disease. There is no cure for Crohns, it requires some meds or you are definitely headed for surgery w/in a short time.

Hi, its not a good idea to stop your meds. Your meds may need to be adjusted.

The difference is that without meds you could have uncontrolled inflammation, and get significantly worse. It would seem kind of dangerous if you are currently anemic or have strictures.

That being said, if you want to try going off meds, it can be done somewhat responsibly... If you monitor your situation and are willing to admit to yourself when you are getting worse. "Monitoring" would be regular blood tests and keeping a written diary of your pain, temperature, BM's, etc. If you include what you eat, then that may help you pinpoint any foods that make you worse.

I was officially diagnosed in January and am not taking meds yet. I am doing the above diary and monthly (most recently after only 3 weeks) blood tests to check CRP, ESR, white count, etc.

I'm also using EN...as in, currently "eating" only Nutren 1.5. I was doing well from Jan till last week (I started eating some food again), so now I'm back to just cans and hopefully things will settle down. My doctor says it's no way to live, but I am fine with it if it helps me to put off meds for a little while longer. There are other less drastic dietary changes, like SCD and I also am reading these books about "inflammation-free diet plans."

Oh boy, it was a loaded ? right? I'm on 150mg of immuran [azasan], dicyclomine, prevacid, there's a number of stuff I take as needed.

I think it's the immuran. I feel yucky everyday. But what seemed to work isn't right now.

Biggest complaint is I am starving.Really starving. I eat anything there is pain. There is a certain level of pain when I don't. But pain or not I am starving. I weighed in at 104 yesterday. Doc. said he wouldn't get worried till I was 90 pounds. I just feel to yucky to eat. I can't stop drinking [water and sodas]. Never get enough liquid in.

Last week the GI perscribed a pain med I had never had. I couldn't even break the name down. I was scared to try it because taking pain meds for GUT pain has backfired a number of times. I wanted what I know works. They wouldn't switch out. All I wanted was tramadol. [Works great on gut pain] Yesterday I found out what he gave me was demerol in a pill. When I did try this med it worked but I should have been monitered. I don't remember last week.

I can't live like that. What's the point if I can't remember the day before?? I need endurance. I just give out. I used to be able to gallop [fast canter] around for hours. Now I can't make it around 1 turn in the ring. I have the know how, the experience but not the body.

Riding is so important right now because it helps my joint pain. I'm no quitter. I just can't starve! I'm cracking and I'm a hard nut!

rj

I understand your frustration with pain meds...I was on them for quite a while and missed so much of my life, but without them I was a mess. it is just a crappy deal. you need to get some nurishment, that is obvious by your last post. my doc never was allarmed or interested in my wieght, but as a tiny person, going from 110-98, I went downhill fast. I am back to about 107 and am a new girl. I am so sorry things are so bleak. I am a believer in tackling symptoms and having a quality of life. IMHO, if meds are making you worse than don't take 'em.

Don't quit your meds on your own, you need to work with your GI and if you're not happy with what or how he prescribes to you then talk to him about it or even get a second/third opinion, but still, don't stop your meds on your own...you may end up causing yourself worse grief than you have now.

See what other options are available...work with your docs.

:)

Redjeep: I've met people before who have successfully come off their meds. But Anyone I know who has successfully weaned off meds, was feeling well at the time they stopped their meds. I really have never met anyone who went off their meds while they were not feeling well, who didn't live to regret it.

Imuran doesn't cause the kind of pain you are describing, unless it is associated with acute pancreatitis. Are you having regular bloodwork? Are your liver enzymes normal?

I think you know that something isn't right and unfortunately, it's probably not the drugs you are taking that are responsible. It's probably the disease. You need to have a heart to heart with your GI and consider changing your medical therapy.

I understand your frustration. You just want to be well, but turning your back on your medications is probably not the answer.

Hi Redjeep My GI has taken me off meds for now after my resection he said about 80% of people who have had one will go into remission. I am doing good with the BM's for now. I am having some body pain . I see you are drinking soda's that would give me the runs. What is the Dr. saying about this new kind of pain you are having? Where is it? I eat low residue and not sure if things are ready for you to start eating but hope you can start soon. Tell your GI your concerned about this new pain. Let us know how it goes and get back to us on this . lol gail

That would be very nice MMMNAVY. I don't think I'm getting anything. Even my thoughts and concentration is going.

How fast can food possibly go through. One bite and it's as if someone turned on the go button. I have been eating mangos since Christmas no problem. Last night I didn't get half way through till I was on the toliet [sp poop catcher] Hungrier than when I got on.

rj