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Appreciating times when not in pain

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Crohn's Disease
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Posted 10/23/2018 1:20 PM (GMT 0)
I don't know about y'all, but on days when my pain is only a 6 instead of a 10+, I feel like a king. Sad that it comes to this. One more Remicade to see if it really has started to fail on me. It's been a good 13 year run with the 'cade.
Posted 10/23/2018 11:52 PM (GMT 0)
snappy, you have been on Remicade for 12 yrs? How long did it take before you noticed it was helping? I just had my 2nd infusion yesterday and feel nothing. Like I didnt even have anything.. Was on prenisone and pentasa and didnt help. I am in pain every day but on some days there are several hours when i feel better. I find moving around helps more then anything.I see you are a powerlifter? 5 years ago and stopped when this started.. Do you still work out? its to painful for me and worried about bleeding or to do anything
Posted 10/24/2018 12:05 PM (GMT 0)
Hey Joejo,
Are you in the loading phase of Remicade? I remember when they started me out they initially had me going like every three weeks, and then eventually to the every 8 weeks stage where I am now. I think it took about a month to see any results, but that's because once it's working, you still have to heal. It has never 100 percent cured me, but it made my life mostly symptom free (my highest pain level was probably a 3 out of 10 for years). Yes, moving around and staying generally distracted helps a lot for the pain. Still lifting weights although I did quit for a few weeks when this new fissure broke out. I was worried I'd make things worse. But now that I've started back (and yes, I only lift when I'm not in pain), I feel like it doesn't hurt my symptoms and instead makes me feel whole again (I can still have a life!). Running is more challenging because sometimes that does aggravate my fissure, and I have to find times when I'm not hurting at all to do that, and don't have upset guts. Don't do anything that makes you hurt, but a long time ago I kind of adopted the attitude "darned if I do, darned if I don't", meaning that I'm going to hurt whether or not I lift weights, so I might as well do it. And more importantly, don't give up or lose patience with your treatment. It may take some time, and if Remicade doesn't work, there are lots of other options. Take care!
Posted 11/1/2018 3:05 AM (GMT 0)
Snappy2000, do you mean you think Remicade after working for so long has now stopped working? I was on Remicade for years and it was great then I started having a bad flare - they ran every test except the one bloodwork to see if I had developed antibodies to it (I had). After that I switched to Humira for the last 6 years or so and after a shorter flare now my new GI put me on Methotrexate short term to help make sure I don’t develop antibodies to the Humira. Have you had that blood work done? I feel like so much falls thru the cracks and drs miss things everyday. Hope you get some good news soon!

Also, with your fissure I only recently found the best numbing relief ointment, Calmoseptine - and it’s over the counter! I used prescription lidocaine for my fissure and it was never very effective but this is worth a try if you haven’t yet. Good luck!!
Posted 11/1/2018 1:59 PM (GMT 0)
Thank you! What a wealth of information. I ordered the cream you mentioned. Yes, seems that the Remicade is not working and I foolishly thought that the clinic I go to for my infusion was looking at antibodies when they do my bloodwork. They have not, so I may not have been tested in years. Thankfully, it's just not working instead of giving me lupus like symptoms, or the like. I hope they can put me on Humira. I was once on Imuran with remicade (to prevent antibodies) an it was literally killing me, so I hope there is something new out there. I feel like I have at least two painful fissures at the moment and I'm doing all I can to make it to work every day and not spoil all my family's plans.
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