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

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Redjeep
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Date Joined Nov 2005
Total Posts : 1024
   Posted 5/2/2008 10:28 PM (GMT -7)   
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

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 5/3/2008 2:04 AM (GMT -7)   
What meds are you on, rj?
Co-Moderator Crohn's Forum.


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 5/3/2008 4:10 AM (GMT -7)   
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.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


FallColors
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Date Joined May 2007
Total Posts : 1220
   Posted 5/3/2008 4:37 AM (GMT -7)   
Hello Redjeep,

I think the meds for CD are a challenge. CD makes you tired and gives you D, etc., but so do the meds! So while the meds may reduce the inflammation so the D can stop, the meds cause D. So it appears the meds aren't doing anything. BUT in controlling inflammation, the meds are slowing down or stopping the disease process and the damage it causes. SO in the end, the meds really are necessary. Some damage just can't be repaired.

I suggest you ask your Doc if different meds or supplements would help you. Let us know how it goes!!

teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 5/3/2008 5:38 AM (GMT -7)   
Hi, its not a good idea to stop your meds. Your meds may need to be adjusted.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on Asacol, Dicyclomine,Imuran,Celebrex and Remicade. B-12 injection once a month.
Also diagnosed with Osteoarthritis and Rheumatoid Arthritis


Ne Ne
Regular Member


Date Joined Apr 2008
Total Posts : 243
   Posted 5/3/2008 6:24 AM (GMT -7)   
I've thought that so many times but then I remember what it was like with out the drugs and the thought leaves my head.... besides I went through stupid and I did go off all my drugs, it was not pretty.... I was back to 10-15 D's a day in less than 3 days..... So unless your doctor has something else I'd just keep doing what your doing.......




Ne Ne

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 5/3/2008 6:46 AM (GMT -7)   
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."
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, SCD, Omega-3 (Fish and Flax Oil), Folic Acid, Probiotics, Vitamin E, Psyllium


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/3/2008 7:13 AM (GMT -7)   
what are you on, Redjeep? I think it makes sense to ask the doc--why not? are you trying any of the dietary changes that have helped some of us? I am shocked daily by how great I feel now that I am off gluten...you never know what could do the trick! also, I have met several people who have been diagnosed with CD on no meds (and me, too) and are doing well. however, if there is active disease, I say take all you can to try to keep from getting worse. sorry, I am blabbering, it is early here! yp
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


Redjeep
Veteran Member


Date Joined Nov 2005
Total Posts : 1024
   Posted 5/3/2008 8:18 AM (GMT -7)   
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

sr5599
Veteran Member


Date Joined Aug 2007
Total Posts : 1202
   Posted 5/3/2008 8:19 AM (GMT -7)   
I've gone off meds in the past to "clean out" for a couple clinical trials. Obviously I was bad enough on the meds to seek a trial. But, as soon as I went off, I went downhill very quickly. Of course, this is just what happened to me. Your doctor would be able to best help you understand the consequences or appropriateness.
--39 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl


yogaprof
Veteran Member


Date Joined Apr 2006
Total Posts : 1665
   Posted 5/3/2008 9:14 AM (GMT -7)   
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.
48 y/o woman.  Diagnosed 4/06 after colonscopy, SBFT, CT-scan all showed crohns. 3 months later, after pred and remicade, all tests showed no crohns. December '06 had adhesions cut through a laparoscopy. Now taking Glycolax, Ultra Fiber Plus, Florastor, and DHEA. Have become gluten-free diet per naturopath's tests.


dunny2
Veteran Member


Date Joined Jan 2007
Total Posts : 3200
   Posted 5/3/2008 9:16 AM (GMT -7)   
Rj, I've thought about the exact same thing as you, and as it happens, my body isn't allowing assistance from any meds,
like Imuran, 6mp, Remi or Humira. So all I'm left with is steroids and pain meds. But now I feel very vunerable, I didn't
like the reactions from drugs, but I don't like this feeling either, it's kinda scary, that now my options are down to surgery,
when necessary!!

Maybe, you should talk to your doctor about Humira, to replace the Imuran. It might make you feel a little better!
Vicky

Too many years with CD
Two bowel resections, several obstructions.
Fibromyalgia and recently diagnosed with pancreatitis

Laughter is the brush that sweeps the cobwebs from our hearts


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20576
   Posted 5/3/2008 9:56 AM (GMT -7)   
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.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


Redjeep
Veteran Member


Date Joined Nov 2005
Total Posts : 1024
   Posted 5/3/2008 12:06 PM (GMT -7)   
I agree going off meds. without telling the GI would be disasterous. I think he'll have some ideas. He is quite proud of his work with me. When we first met I was in such bad shape and this disease is tricky. He doesn't like me messing with his work.

I thought to go down maybe from 150mg to 75mg. The immuran works. But I have something going on and I can't put my finger on it.
I'm used to pain to be moving. What I feel like is that the pain is in one place. It stays. Feels like a splinter working it's way out.

any ideas?
rj

belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 5/3/2008 6:07 PM (GMT -7)   
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.
Belleenstein:

30+ years living with Crohn's.


Redjeep
Veteran Member


Date Joined Nov 2005
Total Posts : 1024
   Posted 5/4/2008 7:11 AM (GMT -7)   
I don't want to turn my back on meds. I just feel frustrated. I can usually work a problem through. This time however I come up blank.

I am so hungry, but afraid to eat. My weight can't go down anymore that is for certain. B12 shot is probably due. I can get that tomorrow.

It's more than just how I feel. It's how I look. The meds are aging me in a bad way. I feel bad, look bad and emotionally drained. I need a pick me up. A get up and go kind of thing. Even if it's silly. I walk around with a piece of peppermint in my pocket. I call it being the KEEPER OF THE PEPPERMINT. You never know when a piece is needed for you'r self or others. Confidence in you'r pocket. My horse will follow me to the end of the earth over peppermint.

I need to build muscle but how to get the calories in?

rj

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/4/2008 4:39 PM (GMT -7)   
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

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/5/2008 5:30 AM (GMT -7)   
I was wondering if you are at all digesting the immuran? While it did not work for me, I wonder if oral meds might be part of the problem. (I have use MTX shots with some success) With your food issues have you thought about a food mill/masher for tots (I will look it up to get the name for you if you want me too)?
Forum Co-moderator
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....
All suggestions/options/opinions are caveated with please consult with your local health care provider...


Redjeep
Veteran Member


Date Joined Nov 2005
Total Posts : 1024
   Posted 5/5/2008 5:40 AM (GMT -7)   
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

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 5/5/2008 6:34 AM (GMT -7)   
I am concerned about this Red Jeep. I think talking to your doc about changing meds would be great. The food mill is the KidCo Babysteps food mill (I am sure there are other brands, but this is the one I use). I have the same thing happening. While I have found high fat foods do slow intestinal motility a bit (ice cream and creamy peanut butter milkshakes...love those) it is a run to the bathroom within the hour of eating.
Forum Co-moderator
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants)
Praise in public, chew in private.
Make sure your suffering has meaning....
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Post Edited (MMMNAVY) : 5/5/2008 7:37:02 AM (GMT-6)

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