anyone here with crohn's disease

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survivor49
Regular Member


Date Joined Oct 2007
Total Posts : 241
   Posted 12/15/2008 12:44 PM (GMT -7)   
if so, what works for you?

Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23427
   Posted 12/17/2008 5:10 AM (GMT -7)   
I don't have Crohns but Uc and unfortunately I am still trying to figure this question out myself. I can't take any of the narcotic pain relievers nor the Nsaids but when the pain gets too bad I do sometimes take Darvocet. It constipates me severely so that is why I reserve it for when the pain is bad. But mostly I rely on Tylonel Arthritis and heat..........lots and lots of heat!
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straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13478
   Posted 12/17/2008 1:01 PM (GMT -7)   

Survivor yes I have crohns and in 96 was dx'd with UC as well. Lovely huh, the odds are less than 5% having both, just my luck. Do you have crohns too?

I had an emergency small bowel resectiob 7-4-02, I ws really a frecracker that day. I had developed a complete blockage and abscess, never want that to happen again. I have never been so sick and let me tell you, I suffer with chronic pain, but its nothing compared to that pain. I prayed nonstop 3 days straight 24 hrs a day for God to let me die. We were on vacation in Mexico at a villa when this happened. We were 90 miles out of Cancun in a small town called Akumal. I was taken by mabulance into Cancun and they thought it was my appendix so they took them out only to find they were fine. My surgeon had the sense not to stop and opened me up lower and found the mess.

After surgery it of course saved my life but, it also left me with chronic diarhea. I got really ill afterwards and could not eat or drink anything it went out the other end. All the gi's I saw here wanted to put me on Prednisone but I cannot tolerate steroids I go into congestive heart failure. So, because of that they would not help me except to tell me to come back in 2 weeks!!! I found my current gi six yrs ago and he is a true blessing. He immediately put me on Remicade infusions since that was about all that was left for me and I did very well for about 3 yrs on it every 4 weeks. I also took Imuran, tons of Lomotil and Bentyl for the cramping. The Remicade even helped with some of my joint pain. It lost its effectiveness after 3 yrs so we stopped the infusions.

I went on Entocort EC which I am still on, Lialda for the UC, Imuran and just did my loading dose of Humira almost 2 weeks ago. I developed an abdominal fistula in March and had to resume Remicade infusions every 4 weeks until Oct. This time around the Remicade really made me sick. I would run a temp of 101 for several days, joint pain from hell and felt like I had the flu. Remicade does wonders in healing fistulas along with good ole Flagyl that I hate.

One year ago I was dx'd w/Lupus, too darn many autoimmune diseases in my book. I just saw a new rheumy last week that I really like. He says I may have Lupus induced by my crohns meds, I am to have a ton of blood work done tomorrow. It is not in remission like the last rheumy told me. I am to start Plaquenil after I see the opthamologist on the 23rd. My eyes have to be checked by one before starting the drug. Apparently there is a remote chance of some sort of eye problem that can happen when on this drug and you have to go see an eye dr every so often.

I am having some hopes with the Humira. But, I am also afraid to get my hopes up because I have gone thru all the ups and downs of hoping maybe this med will do the trick. If you have crohns you know what the rollercoaster ride is all about. I just had an EGD done, I am losing too much weight from not eating. I do not have an appetite, but my dr is very much aware it may all be mental from dealing with the diarhea for so long. I know where every bathroom is in all the stores I go to which are just a few. Going out is not easy for me at all. I cannot tell you what crohns has done to my life there is not enough time to sit and write it down. My gi dr insisted that I retire and get on SS in early 03 and he retires no one. He feels everyone should work. I am his 2nd patient in all of his yrs of practice that he has retired. I did apply for SSD and received my benefits shortly after.

Of course I also have chronic pain and have a pain pump implanted. I have dealt with it over 20yrs. Its not a picnic either by a long shot. I just hope there are no more diseases I can get stricken with any time soon cause right now my plate is full.

I have a 3 yr old grandson and he is why I keep going. He is my reason to get up every day. If I did not have him, I do not know what would happen.

If there is anything I can help you with please let me know. Hugs, Susie



heatmiser
Veteran Member


Date Joined May 2003
Total Posts : 1671
   Posted 12/23/2008 1:33 PM (GMT -7)   
I have cd and cd-related arthritis. I take darvocet for the arthritis. It helps me function but doesn't completely eliminate my pain. Some days are worse than others, but when I try going without it, I really hurt too much. When my cd pain is the problem, I usually end up needing prednisone. I do that as a last resort though. I also have plantar fasciitis so being on my feet too much aggravates it badly. Nothing seems to help and the dr said surgery may be my only option. So for now, I just suffer through it and hope it will heal without the surgery.
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