Questions about flares...

[Taryn]

I was only diagnosed with Crohn's this past November. I have been on Pentasa and Align only, along with lots of vitamins that I researched on my own to help with some of my issues. My GI hasn't really explained much to me as far as what to expect with this disease. I have spent the last week since being on this forum just reading and trying absorb as much info as I can but it seems everything is different for everyone. SO....I have some questions.

Since I have seemingly been in a "flare" for the past 7 years, why would my Doc not automatically give me medication for the inflammation? From what I read and a few reply posts to "my story" I need to be on Pred or something for the inflammation. Obvisously prescribing a maintainence drug isnt going to get me out of the "flare" I have been in for so long. How do I talk to my doc about this?

Also, I have read alot about pain. My question is...my pain seems different than alot of yours... I don't get pain often in my abdomen. I have hip pain and knee pain and muscle aches all over. I am in constant pain daily and playing the sport that I play makes it difficult to even want to go to practice. I do though and I feel great afterwards, especially if I can make it all the way through practice, but the next day, the pain is sometimes unbareable. I don't take any pain killers. I used to take motrin but from what I read here...I shouldn't be taking that. So I am at a loss so to speak...as to what I am suppose to be doing. Taking a break from my sport is not an option for me. I know that it would be beneficial to my body to take it easy until the flare lets up, but honestly the only reason I go to work or get up in the morning, is so I can go to practice. It is the only thing that makes me feel good, so taking a break would not be good for my soul. I live 1200 miles from my family and the girls on my team are all I have.

I guess, I am looking for advise on what I should be asking my doc. I had to cancel my appointment today due to fundages, but I rescheduled for next week and I want to be fully prepared. Diet, medications, anything specific that I should tell him.

Thanks~Taryn

 

[moogie]

How is the pain? You said you've been in a flare for seven years.... a flare is very painful and with what you have been saying it seems like you are able to function and are not in a lot of pain. Maybe that is why your doctor is not prescribing anything hard for you yet.

Maybe I did not understand you but I know for a fat I would never have lasted 7 years on a flare.

 

[Taryn]

That is the thing...I don't know what constitutes as 'flare'....For the past 7 years, I have had D every day, 5-8 times a days. My pain on a scale of 1-10 depends on what activities I did the previous day. Usually its a 5 but some days, my hips hurt so bad, its hard to walk or get out of a chair without cringing. I have been to physical therapy and nothing helps. I am constantly feeling "rundown". My vitamin levels were that of a starving ethiapion---drs words not mine...I guess if someone can tell me what a flare is then I could better answer that question. The Pentasa hasn't helped me feel better. The D isn't as bad and with the vitamins I am taking, I feel more energy becuase the Pentasa is helping me absorb more but it doesnt help with the pain I feel daily.

 

[Rebecca85]

It depends on the doctor. Some prefer to use steroids first, hit the inflammation hard. Some prefer to try things like Pentasa first, since they have little side effects. It also depends on the patient. I was in hospital having morphine injections most nights because of the abdominal pain. I was scared stiff of going home, because oral painkillers weren't strong enough. So they gave me steroids to get rid of me! Since you said your pain is not like that, the doctor probably wants to try the lower risk treatments first.

Have you been to see a rheumatologist about your body aches and pains, because it might be something like arthritis rather than the actual Crohn's. You said elsewhere that the Pentasa helped your bowels for a while, did you notice any improvement in your joints and muscles then?

 

[moogie]

For me a flare is intense pain in my gut. I would say 7to 9 and it's there all day long. On and off. Cramps, blood in the stool and lots and lots of bm. 10 tims a day on average.

Can hardly eat anything, lost of appetite and very weak. I would not be able to ;play hockey for exemple when I have a flare. It's to hard on the body and not enough energy.

Pentasa never did anything good for me.

The only way to know for usre though it's your doctor and usually they have to go and see for themselves. Meaning a coloscopy. and or x rays.

 

[Astra]

Hiya Taryn

I have diarrhea and joint pain on a daily basis and have done for donkey's years!
And this is normal for me, but I wouldn't constitute this as a flare. Apparantly I'm in remission because...
According to my gastro team, a flare is active inflammation, extreme abdo pain, nausea, fever, vomiting sometimes if there is narrowing, accompanied with diarrhea, urgency, and I have none of these! And neither have you, that's why the doc hasn't given you meds like steroids.
If you have a lot of BMs a day, have you considered a change in diet? A low residue diet?
From what you've wrote, it doesn't sound like you've been in a flare for 7 years, more like other manifestations, such as arthritis.
I would ask for a referral to a rheumy too!
good luck
xxx

 

[marcus]

From what i have read on here a flare is very personal to the individual, it seems like alot judge a flare in terms of pain, but i'm not sure if that is the whole picture, my brother Rob is classed as being in a flare at the moment by his doctors, but does not really have bad pains, he may get the odd twinge here and there, his main symptoms are frequency of going to the toilet, sometimes blood and also on occasion will get really shivery and cold, looks pale and he has lost a bit of weight, also has skin tags so i don't know if he has perianal things going on, this is something we are going to try and learn more on next time we see the docs. These symptoms are enough for the docs to put him on his second course of prenisolone and said if that doesn't help then maybe infliximab.