Is daily pain normal?
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I have good days and bad days, good weeks and bad weeks. It does help really knowing what upsets your system diet wise. I am still learning in that dept. Start writing down what you ate the day before and that day you feel bad. Then figure out by elimination what made you hurt. It really does matter what you eat. Make sure you take good supplements to help your system too.
nogutsnoglory
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Pain is never normal. I do experience daily pain but I know something is very wrong and we are trying for remission. It's important you work with your doctor to understand the cause of your pain and tailor an effective treatment plan.
I have daily discomfort and pain. I have never been in what I consider remission though I have had SED rates in normal range occasionally. I just thought it was to be "my normal". I've never had single daily bowel movements since the trouble started even with the "normal SED rate" times.
kiny
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Chronic daily pain isn't normal, it happens when the disease isn't treated, I wouldn't call it normal. It also tends to indicate that there's inflammation, which will eventually result in stricturing, what is merely "pain" now, will have consequences later on if left untreated.
Lots of doctors also want the patient to have a normal quality of life, are they happy, are they part of society, chronic daily pain would be mentally unbearable after a while I think. Make sure you get better.
Lots of doctors also want the patient to have a normal quality of life, are they happy, are they part of society, chronic daily pain would be mentally unbearable after a while I think. Make sure you get better.
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For many years I thought a certain level of dicomfort is just the way things are. In the last 18 months or so I've been in deep remission and that for me means basically bo symptoms and no discomfort on a daily basis.
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My son experiences no pain at all now. But it took a long time. He was diagnosed in October 2011. The pain slowly got better over 6-8months. Then he would have occasional issues after that. I would say he has only felt completely normal for about 10 months. He was declared in remission by the GI in March of 2012.
I think healing takes a while, so you could continue to improve without changing meds. My son did not have "shoot me now" pain after the first few weeks on Prednisone. So if your pain is that bad, even just occasionally and you have been on the same treatment for a while I would talk to your GI about other possible meds. You shouldn't have to live in daily pain.(((hugs))))
I think healing takes a while, so you could continue to improve without changing meds. My son did not have "shoot me now" pain after the first few weeks on Prednisone. So if your pain is that bad, even just occasionally and you have been on the same treatment for a while I would talk to your GI about other possible meds. You shouldn't have to live in daily pain.(((hugs))))
Kev
Senior Member
Is daily pain normal? I have extensive scar tissue... in my GI tract... and my GI tract has to process whatever passes thru it on a daily basis... in, thru, around and over all of my scar tissue. Take it from me... scar tissue does not react well to this sort of activity. I go thru this pain every day... it is not an indication my disease is flaring, it isn't... my disease is dormant. So, this is my new ... "normal".. I have learned to live with it. I have no choice. Despite all my pleading, no surgeon will attempt to remove my scar tissue. The thing is... with the passing of time, I have grown accustomed to it, and I've found that.. keeping busy, keeping active, engaged... takes my mind off of it.
How do you know its your scar tissue causing pain? I ask because I get this dull crampy type pain late in the afternoon after Ive eaten on my left side colon. Its not constant and its weird it moves. Today it could be over in my left by my hip more or it could be higher up left side it can be uncomfortable at times. Usually by late evening after Ive relieved myself if subsides I can normally take a couple of Tylenol and it helps I do have scar tissue and often thought it was the culprit but can never get a straight answer as to how scar tissue feels.
Cleuger - I can tell you how my scar tissue or adhesions felt. A couple of years ago I was getting a lot of pain on my right side that would get worse the more I moved around. It felt like a pulsing, stabbing type pain near my hip and sometimes it felt like a burning sensation. When they finally opened me up they found that my colon was stuck to my intestines and my hip and thought maybe my appendix had leaked causing the scar tissue. Now, years later I'm getting the same pain but all over my entire abdomen which gets worse when I eat and they now suspect Crohn's. I've never heard anyone describe the pain the same way as this though so I'm still doubtful.
I know everyone is different with their pain threshold I have zero tolerance that's all I can say. Pain does something weird to my brain. I cant tolerate it at all. SO when I say pain in the left side for me its more of a crampy type pain not stabbing I feel better getting up walking around. The pain tends to worsen after sitting for a long period of time but not always. After I go to the bathroom sometimes that relieves it also. Also the pain is never in the same spot on my left side. I have never ever had pain in the center or right side on my stomachs its total bizarre, well for me anyway. I have had this off and on for the last 4 years. Don't know Ive have scope 9 months ago. Maybe its ulcers or something? Still trying to get into my GI.
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I do have daily pain. But, the reason is because I have been flaring for a very long time. I think that once one goes into remission, the daily pain gets better. That is, after all, one of the main goals of treating IBD; to decrease inflammation and PAIN. I really do hope that one day, I will not have pain 24/7. Hang in there, I am sure things will get better.
How long have you been flaring now? how long can a person flare?
Kev
Senior Member
How can I tell if it is my scar tissue causing the pain? Essentially, I've discussed it with my doctors. They tell me it is accountable for the pain, and there are no surgical options or effective pain treatment options. I have seen the photos of my scar tissue. And, as someone was nice enough to point out when I posted them here, all kinds of nice healthy pink tissue. If someone has this disease... then it is almost certain that they have significant amounts of scar tissue... and no drug will resolve any of that. The disease may go into remission, but the scar tissue is going to remain until they cut it out (if they can). Scar tissue isn't as flexible, pliant... so it is going to continue to hurt. As for... moving... changing.. (how to put this delicately???).. Internally, I have strands of scar tissue criss-crossing my tract.. and an area where thickening on the wall changed what should be a moon shaped track to a crescent moon.. the 'consistency', 'size' or 'shape' of what is trying to pass thru this internal gauntlet is going to determine where I feel pain... how much.. OK, let me try this... ever launch a paper sailboat down a little stream as a child? It might snag on a rock, or a branch, or get caught in an eddy. Sometimes it will pass thru and not 'touch' a single obstacle... pure luck. And, if your disease is progressing, scar tissue is multiplying, increasing, spreading. Hell, I had 1 1/2 feet of the worst of it cut out at my last operation... and I only have 4 photos of my insides... just some of my scar tissue.. Since they tell me it is too much to cut out, I figure there is more.. I guess I take the daily pain from my disease with a grain of salt. With aging, I have more 'other' aches and pains that aren't connected to my disease. So it is a different perspective for me. At least I know my disease isn't getting worse daily.
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I've been flaring for two and a half years. I don't know how long someone can flare for. It sounds depressing, but I always assumed one could flare until the disease it under control, no matter how long that takes.
Are you on Cimzia? Are you flaring on Cimzia? I see on the side you belong to the Cimzia club. If i stray off topic I am so sorry I'm just asking questions
Are you on Cimzia? Are you flaring on Cimzia? I see on the side you belong to the Cimzia club. If i stray off topic I am so sorry I'm just asking questions
Kev
Senior Member
Well, not to nit pick definitions... but a stretch of 2 1/2 years where your condition has steadily worsened even while on medication... I wouldn't categorize that a flare, per se.
To me... a flare is when... although you haven't changed anything.. medications, diet, no changes in home or work settings... nothing you can point to .. and you go from being stable on your current regiment (drugs, diet, supplements, etc..) to a sudden bout where things worsen... before slowly reverting to your normal maintence levels.. To me, that is a flare (just my off the cuff definition, and I didn't write the book on the subject, hey.. I can barely manage to color between the lines). A spontaneous downturn of your condition.
A long, continious downturn... that isn't a flare. That is proof that whatever you are now doing isn't working, hasn't worked for some time, and there is no expectation that it will ever work. Hell, if I were to suggest to someone they try LDN... if it didn't work at the end of 3 months... I'd be the first to advise them to throw in the towel, and to try something else. Like that warning for Erectile Dysfunction pills state... if your erection lasts more than 4 hours, seek professional help... I mean.. medical professional help. But a 2 1/2 year flare... that is not a flare... that is a total failure of your current treatment.
To me... a flare is when... although you haven't changed anything.. medications, diet, no changes in home or work settings... nothing you can point to .. and you go from being stable on your current regiment (drugs, diet, supplements, etc..) to a sudden bout where things worsen... before slowly reverting to your normal maintence levels.. To me, that is a flare (just my off the cuff definition, and I didn't write the book on the subject, hey.. I can barely manage to color between the lines). A spontaneous downturn of your condition.
A long, continious downturn... that isn't a flare. That is proof that whatever you are now doing isn't working, hasn't worked for some time, and there is no expectation that it will ever work. Hell, if I were to suggest to someone they try LDN... if it didn't work at the end of 3 months... I'd be the first to advise them to throw in the towel, and to try something else. Like that warning for Erectile Dysfunction pills state... if your erection lasts more than 4 hours, seek professional help... I mean.. medical professional help. But a 2 1/2 year flare... that is not a flare... that is a total failure of your current treatment.
