Question about flare-ups

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abl
Regular Member


Date Joined Apr 2008
Total Posts : 30
   Posted 5/1/2008 10:27 PM (GMT -7)   
When I was first diagnosed, the crohn's was in my colon and small bowel. I don't think much of my small bowel was affected but from what the dr. could see with the scope,that part was. I am now having a flare-up for the first time in 8 years and it is all in my small bowel. My colon is clear. Will the Crohn's flare up in different spots each time? I have been having a lot of pain and D and the pictures from my small bowel camera endoscopy were "grossly abnormal" as the dr. put it. I honestly have been in denial for a few years about this but now that I am really sick I would like to understand this disease better. I am pretty uninformed and appreciate all the wisdom from this board!
 
~Anna
 
30 years old~ Diagnosed in 2000 with Crohn's~ Currently taking 3000 mg Pentasa, Prednisone, and Bentyl.

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 5/2/2008 4:01 AM (GMT -7)   
Anna, I don't think many of us "understand" this darned disease very well. It is such an individualized disease that what bothers one might be therapeutic for another, what works for one might be pure poison for another.

Crohn's favorite area to strike is at the end of the small intestine and beginning of the colon (the cecum). But there are those of us who have had it begin elsewhere. Crohn's USUALLY move UP the digestive tract rather than down. But there are those of us wherein it has struck higher up the small intestine and then moved down.

about the ONLY consistency to Crohn's is that it is chronic inflammation of the digestive tract. And that, unlike ulcerative colitis, Crohn's likes to dig and bury deeper into the lining of the digestive tract, and sometimes even thru it, usually but not limited to the intestines. And Crohn's often likes to throw in extra intestinal symptoms like joint pain, etc.

The first thing I would do if I were you would be to get on an immune modulator such as Imuran or 6MP along w/that Pentasa w/the goal of getting off and hopefully being able to stay off of prednisone - and even off Entocort - ASAP and for as long a period as possible.

We need to grasp and accept that even when we are symptom free this DD could still be perking away doing its damage and to keep taking our meds despite how good we might feel even for prolonged periods of time.

I am a prime example of preaching to the choir. I enjoyed a 20 year true remission after a resection. And when the Crohn's returned I was FAITHFUL about getting on and STAYING on my meds. For the first 8 years - the next 2 I got a little lax. "They" were saying Pentasa really does nothing and wasn't effective. I don't think any of us enjoy popping 16 capsules a day plus our other meds. I got sloppy and despite my common sense telling me to keep taking those Pentasa ..... sometimes I'd take only 8, then more and more I started taking less or none at all. When minor symptoms would start up I'd go back on the Pentasa faithfully - for a month or two.

I'm now facing a resection in the near future. I've let "it" get past inflammation and now have some pretty severe narrowing due to scarring.

Don't let minor or no symptoms lull you into a false sense of security. TAKE YOUR MEDS FAITHFULLY! There is no cure for Crohn's disease, only treatment. Be faithful w/your treatment no matter how good you feel. THAT is the HARD part to wrap your mind around and accept. There is NO CURE except continued treatment and medication for the rest of your life.
Some people are like Slinkies... Not really good for anything, but they still bring a smile to your face when you push them down a flight of stairs.


abl
Regular Member


Date Joined Apr 2008
Total Posts : 30
   Posted 5/2/2008 5:33 AM (GMT -7)   
Thank you so much for your reply! You have some great advice and I appreciate you taking time to help me understand more about Crohn's. I am so sorry you are looking at surgery again. I do hope that it will help you have another 20 years of remission, though! That is wonderful that you were symptom free for so long!
~Anna
 
30 years old~ Diagnosed in 2000 with Crohn's~ Currently taking 3000 mg Pentasa, Prednisone, and Bentyl.


BillyLitt
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 5/2/2008 5:52 AM (GMT -7)   
My wife's crohn is active in the same areas, and for her it is always consistent in those areas.
 
Even after her first surgery, where they attached the cut section, it became active in that same area several years down the road.
 
With crohn's, as some mentioned, it is very different among individuals.  But, the disease is pretty consistent with each person.  Just learn your own body and do the things that is suggested by your doctor.
 
Learn what food you can tolerate, learn the difference between a bad day and a possible flare.  It's a part of your life now and you must except it and adjust your lifestyle to help the disease.
 
When I first met my wife, she was in complete denial.  She would not call her doctor until she couldn't stand straight because of the pain.  Part of it was embarassment, the other part was she felt like she was an inconvenience to everyone.
 
We got married, we had two kids, she is a Team lead in one of the larger companies in the area.  She's living her life.  At times, she is down for whatever reason, but she knows she'll be back on her feet shortly.
 
Don't let this disease control you, you control it.  You'll adjust, it sounds like you took the hardest step and that is excepting what it is you have.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 5/2/2008 6:16 AM (GMT -7)   
Hi abl Hope your meds kick in and help you threw this time. I had resection in Jan. and am doing better now no pain since that time my surgery was necessary because the meds weren't opening things up. I had some problems also with meds and perhaps now things are working better I can get better treatment. Was on Imuran and developed a rash ,pred. for over a year,sometimes some people find it a bit difficult to even find a med that will work for them without many side effects. I also had the fistula problem that makes things a bit harder to cope with. I learned alot from those that are here ,read alot of post and although it can be hard to cope at times seems easier with some friends that are also struggling to cope. lol gail

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/2/2008 6:47 AM (GMT -7)   
Hi abl and welcome to Healingwell. As you can see from above we have some great people on this board who all share your pain. You have been given some great advice above. The one thing I really agree with is if you find some type of medication that works stick with it and continue to take it, don't stop it just cuz you are feeling better. I learned that the hard way and paid for it with a emergency resection.

I hope your docs get you back to feeling good again and look forward to hearing more from you.

God Bless,
Gail *Nanners*
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.

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