Can anyone describe a flare?

[fish]

I've been diagnosed with Crohn's for about 3 years now. Very atypical as mine is pretty much exclusively extraintestinal manifestations - I even argued with the doctors (3 different GI's all agreed I have Crohn's) for a while that it didn't seem possible that I had Crohn's because my symptoms weren't "standard". I'm on Remicade . Started with the standard every 8 week protocol and about 1 1/2 years in started sliding backwards (or maybe just wasn't progressing any further towards feeling better) and my GI and I decided to change my protocol to every 6 weeks. Started getting progressively better for about a year. Now I'm wondering what is going on. 2 weeks after my last infusion I started feeling lousy. Increased pain in various body parts, old symptoms rearing their head - rash on legs, eyes somewhat bleary, arthritis in feet, ribs and back hurting, etc. Bloodwork a few months ago showed no antibodies to Remicade and appropriate levels in my body which is exactly same situation before I went from every 8 weeks to every 6 weeks. I really really really don't want to increase my dosage or move to every 4 weeks but that said....what exactly is a flare? Can you get out of a flare without actually doing anything other than letting it run its course? How do you tell you are in a flare versus something else? I know folks who say they can cause themselves to have a flare because of something they ate. Once that gets out of their system do they "get over" the flare? I eat pretty healthy and aside from Gluten am able to eat pretty much everything...yes, that means raw veggies and cheese along with other no no's for many typical crohnies.

Any and all insights you can provide to flares will be very welcome!

 

[Scipio]

A flare isn't really any special thing apart from Crohn's disease in general. A flare ususally just refers to a worsening of Crohn's symptoms, especially if it occurs after a period of remission or reduced symptoms.

Untreated Crohn's often waxes and wanes on it's own to some degree, and a worsening of the disease in that context can be called a flare. And for treated Crohn's, when the treatment starts to fail and symptoms return or worsen that can also be thought of as a flare. In both cases the flare may or may not get better on its own, but it ususallly won't. So in general, a flare is simply a spell of active disease that is damaging your gut.

The cure for a flare is to start or change treatment in such a way that the symptoms are knocked back down and you go back into remission. There is no one-size-fits-all response to a flare. It's just a question of working with your doc to start a new treatment or improve the current treatment to get the disease back under control.

 

[Jo-mom]

My son didn't exhibit crohn's symptoms first although he had crohn's and we didn't know it. Arthritis was what was apparent at first. Eventually crohn's did catch up with all the symptoms that go with it. He also is on Remicade and he is at a higher dose at every 4 weeks. Not sure where you're from but you can still go every 6 weeks at a higher dose that you have if that is needed. Don't be afraid of increasing the dosages if it is working for you.

When my son first had a flare, we didn't even know what it was but it was increase of BM - blood - loss of appetite, loss of weight - nausea - and night sweats - typical symptoms for a flare.

Good luck.

 

[kiltubrid]

Hi, Fish, I have lived with Crohn's for 38 years, going through long periods of remission, and then having flares now and then. I think everyone might experience flares a bit differently but for me, it's been increased joint pain (this can also be caused by a sudden change in barometric pressure, I've found, so if it goes away in a day or two it's not a flare), joints swollen and/or hot to the touch, hives, and then diarrhea and abdominal cramping. Often these are brought on by going through a stressful time (and who isn't stressed right now?) and they get better on their own, so I just switch to a bland diet and live with it for a while. Sometimes I take a sick day from work and rest. Don't underestimate the power of rest!

But, on rare occasions, I start to run a low grade fever and then start to vomit. If I have those symptoms for 48 hours, those are the times I consult my GI doctor. He once told me the warning signs (e.g. when to call him immediately) are if I ever have black or really foul-smelling stools, or a fever over 101, especially a spiking fever (think night sweats), or if I vomit repeatedly and can't keep anything down.

One of the realities of living with Crohns is that there are a lot of other illnesses that have the same initial symptoms, especially flu, but you never know for sure what it is for sure while it's happening. That's why I always look for a combination of symptoms, a progression, and the warning signs my doctor told me to watch for. It gets so you know your Crohns body really well and you'll start to know when things feel different from Crohns. For example a few years ago, I had a lot of the Crohnsy symptoms, but nothing helped, not even Prednisone. My doctor did some more testing and found out I also have (in addition to Crohn's -- yippee!) microscopic colitis.

I am on Remicade, too, for a long time and it works well for me. You may need a change in dosage or frequency, and it's worth it if it keeps the Crohn's at bay. And as a side benefit, it also helps arthritis, which sometimes is worse than Crohn's for me. Or you may need a round of Prednisone to get it back under control. If you don't tolerate Prednisone, Budesonide sometimes does the trick. But it will be up to your doctor to decide on the best course of treatment.

By the way, I see you have mostly extra-intestinal manifestations, and have been diagnosed three years. For me, the first few years I had Crohns, all I had were awful hives, joint pain, and bad swelling in my joints, especially by hands and feet. None of the doctors could figure out what was causing it. This was back in 1979-82, so no one recognized it as Crohn's. They didn't figure it out till I got the intestinal part of Crohn's, and only then because there was a young doctor, fresh out of med school, on duty when I went into Urgent Care. I weighed only 84 pounds and I was so sick, I was near death. He suspected Crohn's and hospitalized me for two weeks. And probably saved my life. Anyway, all this is to say that you are lucky to have had early intervention. Good luck with your treatment!

 

[Amandakmk]

I too have joint pain and that was my main concern going to the dr but they had no clue what was causing it, I also ran random fevers and felt like I had the flu and the next morning wake up fine?it was weird and people thought I would make it up. Work was grueling for two to three days then I was fine. Diarrhea nausea and vomiting I had lived with for years because I had pancreatitis 10 years ago and it messed up my digestive system completely. I was sent to the hospital last year and was septic due to an obstruction that’s when they diagnosed me with crohns. I have had more “flare ups” since January and just started Humira last week I have hopes it can take this joint pain away . I asked the dr if I did t get treatment how would I do and she said I would end up on disability if I chose no treatment . They have told me it’s progressing fast now

 

[fish]

Hi, Fish, I have lived with Crohn's for 38 years, going through long periods of remission, and then having flares now and then. I think everyone might experience flares a bit differently but for me, it's been increased joint pain (this can also be caused by a sudden change in barometric pressure, I've found, so if it goes away in a day or two it's not a flare), joints swollen and/or hot to the touch, hives, and then diarrhea and abdominal cramping. Often these are brought on by going through a stressful time (and who isn't stressed right now?) and they get better on their own, so I just switch to a bland diet and live with it for a while. Sometimes I take a sick day from work and rest. Don't underestimate the power of rest!

But, on rare occasions, I start to run a low grade fever and then start to vomit. If I have those symptoms for 48 hours, those are the times I consult my GI doctor. He once told me the warning signs (e.g. when to call him immediately) are if I ever have black or really foul-smelling stools, or a fever over 101, especially a spiking fever (think night sweats), or if I vomit repeatedly and can't keep anything down.

One of the realities of living with Crohns is that there are a lot of other illnesses that have the same initial symptoms, especially flu, but you never know for sure what it is for sure while it's happening. That's why I always look for a combination of symptoms, a progression, and the warning signs my doctor told me to watch for. It gets so you know your Crohns body really well and you'll start to know when things feel different from Crohns. For example a few years ago, I had a lot of the Crohnsy symptoms, but nothing helped, not even Prednisone. My doctor did some more testing and found out I also have (in addition to Crohn's -- yippee!) microscopic colitis.

I am on Remicade, too, for a long time and it works well for me. You may need a change in dosage or frequency, and it's worth it if it keeps the Crohn's at bay. And as a side benefit, it also helps arthritis, which sometimes is worse than Crohn's for me. Or you may need a round of Prednisone to get it back under control. If you don't tolerate Prednisone, Budesonide sometimes does the trick. But it will be up to your doctor to decide on the best course of treatment.

By the way, I see you have mostly extra-intestinal manifestations, and have been diagnosed three years. For me, the first few years I had Crohns, all I had were awful hives, joint pain, and bad swelling in my joints, especially by hands and feet. None of the doctors could figure out what was causing it. This was back in 1979-82, so no one recognized it as Crohn's. They didn't figure it out till I got the intestinal part of Crohn's, and only then because there was a young doctor, fresh out of med school, on duty when I went into Urgent Care. I weighed only 84 pounds and I was so sick, I was near death. He suspected Crohn's and hospitalized me for two weeks. And probably saved my life. Anyway, all this is to say that you are lucky to have had early intervention. Good luck with your treatment!

Kiltubrid - thanks for the insights. I have not found many individuals who say they only have or had extraintestinal symptoms. This makes it difficult to compare or research/find solutions with other crohnies as typically when I describe what I'm going through those in my Crohn's support group (off-line) look at me sort of weird. I have even suggested to my GI and Rhuemy that perhaps I DON"T have Crohn's but maybe Ankylosing Spondylitis as my original symptoms prior to Remicade were almost completely pain in joints and skeleton (hips, back, ribs, hands, feet). I did have horrible nausea but even that one of my first GI's suggested was due to the debilitating pain and would go away once that pain was under control. And it did. My issues continue to be almost exclusively extraintestinal but since I have no radiographic evidence that anything is going on with my spine they poo poo the idea....even though I know things like NON-RADIOGRAPHIC AXIAL SPONDYLOARTHRITIS do exist. Basically my Rhuemy said more or less "well the treatment for both Crohn's and Ankylosing Spondylitis are the same so I don't see a problem." It's been very frustrating.

 

[fish]

I too have joint pain and that was my main concern going to the dr but they had no clue what was causing it, I also ran random fevers and felt like I had the flu and the next morning wake up fine?it was weird and people thought I would make it up. Work was grueling for two to three days then I was fine. Diarrhea nausea and vomiting I had lived with for years because I had pancreatitis 10 years ago and it messed up my digestive system completely. I was sent to the hospital last year and was septic due to an obstruction that’s when they diagnosed me with crohns. I have had more “flare ups” since January and just started Humira last week I have hopes it can take this joint pain away . I asked the dr if I did t get treatment how would I do and she said I would end up on disability if I chose no treatment . They have told me it’s progressing fast now

It is sad that it seems we have to get so bad (i.e. end up in ER) before someone will take us seriously. I'm sorry the disease is wrecking such havoc on you. I hope the Humira helps.

 

[fish]

Hi, Fish, I have lived with Crohn's for 38 years, going through long periods of remission, and then having flares now and then. I think everyone might experience flares a bit differently but for me, it's been increased joint pain (this can also be caused by a sudden change in barometric pressure, I've found, so if it goes away in a day or two it's not a flare), joints swollen and/or hot to the touch, hives, and then diarrhea and abdominal cramping. Often these are brought on by going through a stressful time (and who isn't stressed right now?) and they get better on their own, so I just switch to a bland diet and live with it for a while. Sometimes I take a sick day from work and rest. Don't underestimate the power of rest!

But, on rare occasions, I start to run a low grade fever and then start to vomit. If I have those symptoms for 48 hours, those are the times I consult my GI doctor. He once told me the warning signs (e.g. when to call him immediately) are if I ever have black or really foul-smelling stools, or a fever over 101, especially a spiking fever (think night sweats), or if I vomit repeatedly and can't keep anything down.

One of the realities of living with Crohns is that there are a lot of other illnesses that have the same initial symptoms, especially flu, but you never know for sure what it is for sure while it's happening. That's why I always look for a combination of symptoms, a progression, and the warning signs my doctor told me to watch for. It gets so you know your Crohns body really well and you'll start to know when things feel different from Crohns. For example a few years ago, I had a lot of the Crohnsy symptoms, but nothing helped, not even Prednisone. My doctor did some more testing and found out I also have (in addition to Crohn's -- yippee!) microscopic colitis.

I am on Remicade, too, for a long time and it works well for me. You may need a change in dosage or frequency, and it's worth it if it keeps the Crohn's at bay. And as a side benefit, it also helps arthritis, which sometimes is worse than Crohn's for me. Or you may need a round of Prednisone to get it back under control. If you don't tolerate Prednisone, Budesonide sometimes does the trick. But it will be up to your doctor to decide on the best course of treatment.

By the way, I see you have mostly extra-intestinal manifestations, and have been diagnosed three years. For me, the first few years I had Crohns, all I had were awful hives, joint pain, and bad swelling in my joints, especially by hands and feet. None of the doctors could figure out what was causing it. This was back in 1979-82, so no one recognized it as Crohn's. They didn't figure it out till I got the intestinal part of Crohn's, and only then because there was a young doctor, fresh out of med school, on duty when I went into Urgent Care. I weighed only 84 pounds and I was so sick, I was near death. He suspected Crohn's and hospitalized me for two weeks. And probably saved my life. Anyway, all this is to say that you are lucky to have had early intervention. Good luck with your treatment!

Thanks for the insights. I'm not sure that I have ever been in remission since being diagnosed as I almost always have some level of pain somewhere in my body - almost always ribs. But good to know that I'm not completely an odd ball with my extra-intestinal manifestations.