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obxgal510
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/8/2010 12:23 PM (GMT -7)   
I first joined this site in 2000 when I was going through a difficult time with my crohns. I found this site (at the time was small) but very helpful particularly talking to others about problems that only those who suffer from this disease can relate to and help with dialogue of problems or issues.

I have referred many others especially those who have been recently been diagnosed with crohns after the doctors were not listening to my friends and help guide them through this process and became their advocate for healing and getting answers to their problems. I was DX with crohns on December 3rd, 1990. Back then there was very little known about the disease and the doctors were not helpful then.

After living with this disease for almost 20 years, no surgeries, gone through many doctors (some good some bad) medications like prednisone, asacol, imuran, azulfadine, and just about every other drug made for crohns- nothing every worked until I began remecaid on a every 8 week period in 2000. I got a medi-port put in during a hospitalization in 2006 bc my veins were so bad and with ongoing remecaid it was prudent and necessary (it made my life so much easier when getting infusions and being hospitalized as many of the IV pain meds blow veins so easily) going through the port - never burns or hurts only pure pain relief.

In October of 2009 I was hospitalized 3 times in 2 weeks. First was after an infusion (joint pain was so painful that I could not move) Second was again joint pain w some abdominal pain, then the 3rd was a partial bowel obstruction that passed on its own through colon prep... After many tests and specialists - crohns is in remission but the joint pain was being caused by the remecaid so GI wanted me to go on self injector Cymzia; after reading about it I REALLY DID NOT WANT TO GO THAT ROUTE ANYMORE...

I began reading and researching as much as possible on new healthier solutions for joints instead of TNF drugs... I with the help of my chiropractor, GI and primary doctor came up with a new treatment plan that has been working since december: Diet change to lean meats mostly fish and chicken only red meat 1x a month; B12 injection 1x a month; vitamin pack from GNC specific for joint relief and healing active ingredients of glucosamine and chondrotin; exercise either walking, exercise class, treadmill, bike riding outside- whatever i can do with the joints on any given day; chiropractor 3x per week and D3 (sunlight outside for 15-20 minutes or tanning bed with UVB rays only)If I have any pain will take percocet (that will not give me cancer) but have been pain free since december no need for pain meds

I am my own patient advocate along with my husband who never liked me on remecaid. We are planning on moving to florida to a year round warmer climate to help with joints, sunlight and outdoor exercise.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/8/2010 1:07 PM (GMT -7)   
Hi Obxgal510, and welcome back to Healingwell. I wish you good luck with out meds, but one thing I have learned after having had this darn disease for almost 35 years, is maintainence meds are really needed. I think everything you are doing is going to be great for your joints, but I think you might be opening up a can of worms without treating your Crohns too. I am currently in remission, but am maintained solely on Asacol. I went nearly 20 years med free, but it ended up ugly for me with an emergency resection. You already have me worried because you have already had one partial obstruction just a few short months ago, so thats telling me you have narrowing either caused by inflammation or scar tissue. So either your have active disease going on now, or you have had a fair amount of inflammation in the past that has healed and now created scar tissue and that is causing a narrowing in your intestines somewhere. Please reconsider meds for your Crohns, I don't want you to suffer like I did. Good luck!

Hugs
Gail*Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 3/8/2010 1:31 PM (GMT -7)   
I agree with Nanners 100%. Diet and exercise are both necessary to you staying healthy but can not do it alone. The problem is that even though you may be feeling great on the outside, the inside is still being attacked. Most doctors will tell you that there are not many if any nerves near the intestines so you will not always feel damage until it hits a major mark. You can end up in narrowing due to inflammation or scartissue and diet will not stop that from obstructing. The fact that you have already obstructed and your joints have acted up tells me that you still have some recent inflammation going on and a few months is not a good enough picture to choose to stop meds. I am not trying to rain on your parade because maybe you are going to be in a long term remission but I have heard this story before and it has always ended in the hosptial during emergency surgery. Keep up the diet and excercise but be smart about medications and fully listening to your doctor. If he is suggesting cimzia, there is a reason for it. To even be approved for those type of medications, you have to have active disease or extremely recent active disease. If you have reached remission, the cimzia may be the thing to keep you there.

artist guy
Veteran Member


Date Joined Jan 2010
Total Posts : 1373
   Posted 3/8/2010 1:45 PM (GMT -7)   
hey obxgal, my story is similar to yours, I had my 3 surgeries in a 7 month period. the last one they removed 8ft of disease and remission induced by surgery, and man i was on a roll, i continued my journey inlife as a horse jockey and rode pain free, for 17 years, then i had extreme trauma to my jaw, broken in 3 places, and while my jaw was wired up 10 weeks my stomach wents into total flare like it did in 1970, wires removed and i went right into surgery for another 1ft of disease, then once again surgery induced remission. now I'm going to start remicade and i'm on pred. so like the last two experienced cd'er's becarfull. narrowing is your enemy, caused by scarring and inflammation

artist guy


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 3/8/2010 3:13 PM (GMT -7)   
OBXgal, Please reconsider your plan to not use traditional medication. Twenty eight years ago before I was diagnosed with CD, I was seeing a chiropractor who although he meant well almost cost me my life. I was losing weight, in pain and going down hill fast after a had my appendix removed. Looking back now, this guy should have sent me straight back to an MD instead of treating me with supplements & adjustments. This was in the spring & early summer by August I was hospitalized & had an emergent resection because my terminal ileum was destroyed by Crohn's.

Just my 2 cents that I really wish you wouldn't turn your back on traditional meds. Take care of yourself.
 


obxgal510
New Member


Date Joined Mar 2010
Total Posts : 12
   Posted 3/8/2010 7:23 PM (GMT -7)   
Thank you all so much for the grateful insight. We (drs) have a back up plan - if things even look like a flare I will do on cimzia- I am being careful and do believe in maintenance drugs but almost all do not work on me. Thus, the TNF drug Remecaid. Therefore that will be the plan again- cimzia - I am just so afraid of the cancer risk with having 3 children. All options are open:)) Thank you all for the meaningful comments again Many Many Thanks!!!
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