I've tried every med from remicade to humira to imuran to flag, I'm now thinking best option is surgery again(28 first surg) but having more probs managing & getting dr help with 2ndary symptoms ie: joint pain, back pain, skin infections, dry eyes, gum & tooth infections etc also had sarcodoisis at time of 1st surg, how do I get 2ndary issues dealt with without sounding whinny or like only after pain meds (Back has arthrtis like inflam. & knees now affected)
Secondary inflammation issues & other weird stuff caused by crohns?
- Posted:
- 7 weeks ago by Lucky-girl
- Topics:
- humira, imuran, remicade, rheumatoid arthritis, sarcoidosis, subcorneal pustular dermatosis, crohn's disease, crohn's disease -- acute, crohn's disease -- maintenance, surgery
Responses (1)
I have had Crohn's since I was 26 and am now 47. It sounds as though I have been through all you have with the exception that I chose Humira over Remicade as I have a needle phobia and knew I could not handle having an infusion all the time because my veins roll and infiltrate easily. However, I am lucky that the Humira seems to be working well with me. My GI doc started me on 1x every 2 wks then increased it to every wk and that caused me such severe constipation, that I quit taking it all together. He then STRONGLY suggested I stay on at least 2x month as I was increasing my risks of having a SEVERE relapse/flare of my Crohn's. So far, I am doing O K A Y - still constipated to a point but I am one that has had SEVERE diarrhea since I was diagnosed - so I am at a point that I can tolerate it. However, I have had one bowel resection and I was in my 20's when I had it. By the grace of God, I have not had a 2nd one, but that is where I am - if Humira does NOT continue to work, I will have to have another one as my Crohn's has come back with a vengence IN THE EXACT SAME PLACE it was where I had the bowel removed. My doc said that since I have gone through everything else available, this would be the only other option for me if the Humira quits being effective. I am telling you however, after recovering from the resection/surgery itself, I felt like a brand new person. It was worth every bit of "recovering pain" as in the end, again, I felt WONDERFUL....my surgeon had hoped to "buy" me 10 years with the resection and it was almost to the exact date of my resection that it started up again with a fierceness...but gratefully, medications have kept it tolerable so I haven't had to have another one - yet....
As far as the joint pain, etc. that you mentioned, I think that generally speaking, is "normal" for people with Crohn's. I have always been told that if a person has Crohn's that knee/joint problems are very common. I have back issues as well - I have a herniated disc, a bulging disc and Lord only knows what else (as I have forgotten all of the issues my doc and I last discussed). I feel most of these symptoms, for me anyway, are a direct result of either just having Crohn's and/or from steroid (Prednisone) usage for so many years. After I was on Prednisone for x amount of time, I noticed the joint pain/swelling, water weight gain, acne, excessive growth of hair on my face and arms, etc. etc. I think it is just a fact of life for us Crohn's people, unfortunately.
I feel for you and pray that whatever your next decision is to attempt to get your Crohn's under control, works out well for you...
God Bless and have a wonderful day!! If you want to have a discussion or just need a shoulder, please feel free to ask at any time!!
Kari Weaver
