How will I know if my inflamation is down ? Another colonoscopy

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mom4321
Regular Member


Date Joined Aug 2008
Total Posts : 107
   Posted 8/14/2008 5:49 PM (GMT -7)   
  So how will I know if things are healingup other than not running to the bathroom ?
I assume they wont do another colonoscopy for along time right ?   Is there any way to judge how your insides are doing other than how many trips to the bathroom you make ?
My stool samples and blood work showed nothing.

Jen77
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Date Joined Mar 2006
Total Posts : 2689
   Posted 8/14/2008 5:59 PM (GMT -7)   
Well I know I wouldn't do another scope just to see if I was in remission! I go by how I'm feeling and blood work.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down again at: 1mg now, Asacol, Questran, Toprol XL (for high blood pressure).


Matthew
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Date Joined Oct 2004
Total Posts : 3932
   Posted 8/14/2008 6:01 PM (GMT -7)   
Well, your symptoms should improve at least a bit, maybe greatly. And no, I wouldn't get scoped to find out if I am in remission..

Matthew

mom4321
Regular Member


Date Joined Aug 2008
Total Posts : 107
   Posted 8/14/2008 6:01 PM (GMT -7)   
IM totally new to this so I was just wondering. Id rather not take the asocolif Im doing good and dont need it.

sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 8/14/2008 7:09 PM (GMT -7)   
Your doctor will probably do blood tests to check for infamation.
Sj

Jen77
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Date Joined Mar 2006
Total Posts : 2689
   Posted 8/14/2008 7:20 PM (GMT -7)   
Asacol is also used when your in remission, as a maintenance medication, to help keep you in remission. I've been taking it for 2 1/2 years now for that.
~Jennifer
 
Diagnosed with Crohn's Disease 2/06 after sever GI bleed. Has been suffering since 1998. History of rectal fistula and gallbladder removal. Currently taking Prednisone: tapering down again at: 1mg now, Asacol, Questran, Toprol XL (for high blood pressure).


CrohnieToo
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Date Joined May 2003
Total Posts : 9448
   Posted 8/14/2008 7:33 PM (GMT -7)   
If you are tired of putting up w/remission, go ahead and stop taking the Asacol. On the other hand, if you prefer to try to stay in remission, KEEP TAKING THE ASACOL!

There is the (Ceretec? Indium?) Nuclear White Blood Cell Scan that can detect inflammation and where it is in the small intestine.
There is the Genova Diagnostics Fecal Calprotectin test that can indicate detect inflammation in the intestines and over a series or 2-3 tests can indicate whether your level of inflammation is increasing or receding.
 
My gastro and I have utilized both when it seemed that my symptoms were increasing or we needed to know if I was responding to a change in medication or dosage.


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.


mom4321
Regular Member


Date Joined Aug 2008
Total Posts : 107
   Posted 8/14/2008 8:45 PM (GMT -7)   
I assume I am not in remmision as I only got diagnosed about 2 weeks ago but ever since the colonoscopy the diareha has stopped. Im just askign questions trying to learn about this I know nothing at this point.

NewToCD
Regular Member


Date Joined Jul 2008
Total Posts : 57
   Posted 8/15/2008 5:37 AM (GMT -7)   
My GI wanted to do another scope & i was totally against it. In my opinion if you are feeling good & your blood work doesnt show anything its a pretty safe bet you are in remission.

but that doesnt mean u should stop taking meds - consider yourself lucky that you are just taking asacol, there are much stronger, scarier drugs out there!!

CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/15/2008 6:30 AM (GMT -7)   
Mom, I'm glad to hear the diarrhea has stopped! Sometimes we have to be grateful for small favors. *weak smile* Seriously tho, it does sound like your intestines are responding well to the Asacol. Be ever so grateful for that!

There is so darn much to learn about this DD (darned disease) and no two of us are alike in our disease activity, symptoms or response to medication or type of medication. It sure can be confusing!

It is safe to assume that you are going to be on Asacol and/or other meds for the rest of your life for this DD. It really is NOT a disease you want to quit taking your meds for. There are times you may have to step up to stronger meds, and may be times you may be able to drop down to the "lesser" meds such as Asacol. But almost always going w/o any meds for it bring the disease roaring back in full force or even "angrier" than ever! THERE IS NO CURE FOR CROHN'S DISEASE. Please accept that.

Crohn's disease is a CHRONIC inflammation of the digestive tract. CHRONIC INFLAMMATION. Even when noticeable symptoms are NOT present you could well be in just "symptomatic remission" w/mild inflammation still going on in the intestines. And inflammation eventually causes scarring and scarring eventually causes strictures or narrowing of the involved area of the intestines and eventually that narrowing due to scarring becomes an actual full blown obstruction that only surgery can correct. This is why I say accept that fact that you will be on some form of medication for Crohn's disease for the rest of your life.
 
When and if you feel the NEED to know if you are in remission or if there is still active inflammation going on there are two tests MUCH EASIER  on the patient than a colonoscopy. There are the (Ceretec or Indium) Nuclear White Blood Cell Scan which can detect inflammation and where in the intestine and the Genova Diagnostics Fecal Calprotecting test which can only detect inflammation in the intestines but not where in the intestines or the cause.
 
At least they can reduce the need for the horrible preps for frequent colonoscopies and the frequency of the need for the yecky barium for the SBFT (small bowel follow thru). That in itself is a blessing!!!


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.

Post Edited (CrohnieToo) : 8/15/2008 7:37:22 AM (GMT-6)


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 8/15/2008 7:03 AM (GMT -7)   

Hi Mom and welcome to Healingwell.  I agree with all the others.  I once enjoyed a 20 year remission unmedicated.  Would I do that again?  NO WAY!!  My remission ended with a emergency surgery (resection) because I had obstructed completely.  It was a very painful experience shocked   and I will do what I can to help anyone avoid the same mistake.  I am now maintained only on Asacol.  Just as Crohnie Too said, please remember that you have a chronic illness that has no cure.  You are lucky to be able to use such a mild medication as Asacol, which has little to no side effects.  I will continue to pray that you stay with a mild case of Crohns.  But mild or severe, this disease has no cure, but can easily be managed by taking maintainence meds and watching your diet closely.  Keep posting, you will find a wonderful and supportive bunch of people here who are living with the same yucky disease as 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.


Missmissy
Regular Member


Date Joined Oct 2006
Total Posts : 237
   Posted 8/15/2008 9:13 AM (GMT -7)   
Just a note to say hello to you. Like Nanners and the others are saying, please continue the Asacol and don't even think about not taking it if you are feeling better. I say that from experience, as I just got back from the docs. I was in a remission for quite a few months and stopped my meds. I am now in a flare and am back on Prednisone AND Asacol, along with Rowasa enemas in the AM and PM. I am also going to start keeping a journal of foods I am eating so I can try to pin down the things that irritate my body. Right now I'm on a low residue diet until I get things to calm down. You can help to avoid this scenario by taking your meds. Welcome to the forum. Read lots of the entries on here, they are full of good advice and lots of support when you need it. Good luck!
Asacol 1200 mg. 3 times daily, Rowasa enema AM & PM,
probiotics, lots of hope and prayers! 50 years old, diagnosed formally 10-06. If it doesn't kill ya, it'll only make you stronger!


kimberlayn
Regular Member


Date Joined Jul 2007
Total Posts : 239
   Posted 8/15/2008 5:02 PM (GMT -7)   
I had a colonoscopy as a diagnosis of Crohn's, 5 months later another one because I was getting worse, 4 months after that a resection. I was on Imuran since the second colonoscopy but it didn't stop the inflammation from getting worse, hence the resection. 5 months after the surgery I had another colonoscopy to make sure inflammation wasn't coming back with my symptoms of D and fatigue. That scope was clear. But the d is back and some pain, so my doc has me getting another scope next week, 5 months later. 4 scopes in 19 months, they are getting to know me a little too well at the endoscopy center! After I went downhill so fast last year, my doc wants to make sure Imuran is doing its job. If its not, then I'll be on Humira or Remicade. Entocort worked before but that's too short term, and he doesn't believe in prednisone because of the side effects diminishing quality of life too much. Luckily he believes in painkillers when necessary. Anyway, my opinion is if you can find out what's going on and you want to make sure that what you are doing is working, than a scope is one of the safest ways. I've had 5 CTs of my abdomen (4 because of crohn's), 1 of my head, numerous x-rays for SBFTs, pneumonia and asthma, not to mention torn up knees, sprained ankles -- just way too much radiation. It adds up over time, and I have a lot more time left, god willing! I hope you keep feeling better. I know I don't take the good days for granted anymore, it was a lesson I've learned well, I'm sorry you've had to learn it too.
diagnosed w/Crohn's 11/06. 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 8/16/2008 8:10 AM (GMT -7)   
Ach! You are one tough cookie, Kimerlayn, to go thru 4 scopes in 19 months! Not MY cuppa tea. I like seeing what is going on in my innards but - that prep - uh, uh. I don't easily give in to going that route! More power to you that you can get thru that many preps!
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.


mom4321
Regular Member


Date Joined Aug 2008
Total Posts : 107
   Posted 8/16/2008 6:54 PM (GMT -7)   
The thing is the diarreha quite as soon as I stopped eating for the prep for the colonoscopy. i started 2 days before and totally fastred one day to see if no food would change anythign and the bathroom trips stopped.
after the colonoscopy I thought it would return since I had been running to the bathroom 5-15 times a day but amazingly it never returned. I did start the asocol because he old me to but In only 2 weeks my hair is so thin on top I can see my scalp so I stopped taking it and I seem to be fine only going to the bathroom once or twice and its not loose so I think I must be fine.

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 8/17/2008 8:20 AM (GMT -7)   
Well I'm currently pregnant and the pregnancy hormones have slowed down my bowels to usually 1-3x a day, but recent tests show active inflammation still in my terminal ileum. I still have pain in my LRQ from the active crohn's, but I'm not going to the bathroom as much, so I don't think going to the bathroom less will definitely mean less inflammation.
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