Questions for ya'll who have had Crohns for awhile

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Regular Member

Date Joined Jul 2005
Total Posts : 393
   Posted 6/3/2008 7:22 PM (GMT -6)   
do you always bleed when you have a BM? is it always D? Im just curious. I went through like maybe 6mths where I didnt have any blood I could see and no D but now Im back to the same thing every day.
In the morning I have like 5-6 episodes of D and then sometime in the afternoon I have more with noticable blood. At night I tend to distend and have alot of gas. Im not eating anything gassy or that would cause it. But my mornings are hell and my nights are too. Is this an everyday thing for a Crohn's patient?
What does remission consist of? I'd like to see the light at the end of the tunnel, due to the fact Im a optimist!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.

Veteran Member

Date Joined Sep 2005
Total Posts : 517
   Posted 6/3/2008 7:53 PM (GMT -6)   
my thots: i would say no to the bleeding unless the lining is very severe. for me it was always D, i was glad to see any times of less trips to bathroom but would hardly call it constipation. You say that your not eating anything gassy, unfortunately there are more causes of gas than just the food type. I never was that gassy, rather I think passing gas would promote the healing process by eliminating it. The distending is the issue, inflammation (thickening of bowel wall) thus narrowing of the passageway points to your bad feelings. remission is the valley between peaks, it mite be low or higher than others, also chronic=recurring. i have an illeostomy.

Jason D in MN
Regular Member

Date Joined Jun 2008
Total Posts : 54
   Posted 6/3/2008 7:57 PM (GMT -6)   
Blood in stools?
I seldom, if ever have blood in my stools. This holds true, even when I've had less than the width of a pencil for food to move through... Needless to say resections followed not long after establishing that fact.

Do I always have D?
Before my third resection in 2005 I would have said "I seldom have it if I'm in remission". I can't say that any more. I've had it nearly daily since. I've had an occasional week break here or there... My GI has shown me the lab results which say that there's no active inflammation. He suspects I have IBS on top of Crohn's. Through independent study I also suspect he's right about 90% of it... (I probably have IBS, but there is one inconsistency I'm going to raise with him...)

What is Remission?
Technically its when your CDAI score is 150 or less. These days I hover either side of remission so it depends on the week we're talking about. One week barely in remission, the next barely out of it.

My personal opinion is I'm in remission when I've been relatively symptom free. For me this means no spasming or pain of the bowels when eliminating, and no more than 1-2 BMs in a day (D or not). In addition I need to feel relatively energetic either lacking or suffering minimal arthralgia/arthritis symptoms. (Knees and hips typically for me...) My personal cut off is probably closer to 50-80 on the CDAI.

From what you're saying, I suspect you need to contact your GI doctor soon to make sure that all things considered, you aren't getting worse ... He or she may want to order blood tests to make sure you're not becoming anemic (This is a real risk if you're passing a lot of blood in your stools.) Given that you're on Remicade, if you haven't yet, you should do a "sanity check" to make sure this is an associated side effect and considered a nuisance one. (I'm not up on Remicade and its more risks outside of anaphlaxis and hives.etc)

As always if you think your doctor isn't listening to you, or is railroading you, or that plainly you and your doctor don't communicate on the same level, get another doctor. It's not you two are married or even dating. You don't even need to say why you've gone to see another GI doctor!

The key to getting good treatment is for both you and your doctor to understand your options and your situation. The only way you can be assured of that is if your doctor and you communicate on the same level. This is a 3 part equation.

Part 1) Your doctor explains things; you understand the explanation; you believe the explanation; and you can verify it. Your doctor should be willing to help you verify it.

Part 2) You explain things; your doctor listens; you feel confident your doctor is listening; the fact that he listened is reflected in how the conversation goes, including treatment options presented and recommended.

This doesn't mean your doctor won't try to influence you toward what he believes is the best option. It does mean he'll reflect your opinions back to you when presenting an option you're not in favor of, but leave the decision to you. Mine says "I know you're not really keen on TreatmentX and that you have concerns with..." and then presents a coherent understandable argument, but leaves the decision in my court.

Part 3) You're both 100% honest with each other. Without this you'll never get the best treatment possible. Having dated a doctor and having been in an ER too many times (Crohn's and other reasons) overhearing patients talk to their loved ones about why they weren't honest with the doctor leads me to believe this is less of an issue for the doctor than for the patient. Although doctors are people too.

Regular Member

Date Joined Jul 2005
Total Posts : 393
   Posted 6/3/2008 8:35 PM (GMT -6)   
thx I appreciate your feedback...I see my GI tomorrow for the first time since beginning of May and the colonscopy---I hope to really like him since this is my first time meetin him outside the hospital. I hope he really understands my issues with pain and the blood etc!

Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength

Diagnosed with severe Crohn's colitis in May 2005--spread to ileum and small intestine as of April 2008. Have taken Imuran, Remicade, TPN, Colozal, Entocort, Flagyl, PamineForte, Cipro, Dicyclomine, Prednisone, Asacol, Prevacid, and the list goes on. Currently on Remicade every 8wks, 40mg Pred, Pentasa.

Elite Member

Date Joined Feb 2004
Total Posts : 20558
   Posted 6/3/2008 9:18 PM (GMT -6)   
I never had any bleeding issues until about 9 yrs into my disease (it's been 17 yrs now), it came and went for the most part but I did have some severe bleeding issues that wouldn't quit for about 2 yrs straight until I started taking bee propolis (a natural anti-inflammatory) which also helped with many other symptoms for me, cutting back many daily BM's and stopping mostly all the mucus and no more lower back GI encourages me to continue with it every day since it's 100% non-toxic (but bee products should be avoided by those with bee allergies).

I have not always had D, in the beginning mostly D which then switched to mush-like and then finally formed but during my periods it can alternate between all 3 mentioned above.

In my opinion, remission (full remission) is being the way you were before you got sick...there are many forms of "remission" because there are many symptoms to having IBD.

My bum is broken....there's a big crack down the middle of it!  LOL  :)

Veteran Member

Date Joined Oct 2004
Total Posts : 3932
   Posted 6/3/2008 9:21 PM (GMT -6)   
I only have chronic D when in full flare. Otherwise, I just react to certain foods.
As for blood, I get plenty of rectal bleeding but actually bloody stools are uncommon.
But then, I am one of the "mild" CD cases..


Regular Member

Date Joined Jan 2006
Total Posts : 355
   Posted 6/3/2008 10:13 PM (GMT -6)   
I always had bleeding issues from day one. Always. Every day with every bowel movement. I didn't always have d, but rather more like mush and very often just blood. This went on for about 15 years. Now I am on Humira (two years now) and I feel that I am in my first and only remission. I have no blood, no d, no real pain, no mouth sores, no joint pain and no eye issues. I do still have fatigue and a very loud stomach sometimes.

Regular Member

Date Joined Feb 2008
Total Posts : 91
   Posted 6/5/2008 9:49 AM (GMT -6)   
I have never had any blood in my stool that was visable though it has shown up in tests. As for remission I agree with Jason that the CDAI is a good basis to follow. As for remission I am never in a remission seeing how my Crohn's goes from being in my bowel to Ankylosing Spondylitis to Uveitis...if it isn't one disorder then it is another one.

I would talk to your doctor and in time you will know yourself if you are in remission or not.
CD diagnosed 34 years ago
Stem Cell Transplant may be back on
Lap-assisted Ileocolic Resection- February 2008
Ankylosing Spondylitis
Back on Prednisone - I hate it
Ranitidine HCL 
Prednisone 1% (eye drops)
Maxidex  (eye ointment)
Homatropine 5% (eye drops)
B12, Folic Acid, Vitaman D, Calcium

Regular Member

Date Joined Aug 2007
Total Posts : 29
   Posted 6/8/2008 1:55 PM (GMT -6)   
I have had crohn's for 20 years.for the first 5 years it was (5-8times a day)mainly porridgy goop with D once or twice,occasional bleeding.D all the time when in a flare.For the last 5-10 years movements pretty normal (3-5 times a day),occasional bleeding and D.
I just had a relapse so i'm back on the pred for a while.
Remission for me is having as little symptoms as possible,i've never had an asymptomatic remission, so maintenance therapy must give you as best a quality of life as possible.
Take care
 Hi I'm crohnie_boy
 33yr old boy . Diagnosed @ age 14 ileocolitis crohn's.
 Taking Pentasa 1500mg twice daily
 Try to keep smiling ,but hard sometimes

Veteran Member

Date Joined May 2005
Total Posts : 511
   Posted 6/8/2008 2:06 PM (GMT -6)   
I've had Crohn's for almost 8 years now. I do get blood in my stool every once in a while. Its not a daily thing for me to see.
I get D only when I flare. I'm a very "mild" case of CD so my flares are very little. Except for this one I'm having now is a big
one which effecting all my joints. My stools are semi good I think only because I'm on pred. When I'm in remission I am pretty
much drug free and can function and eat anything and my body doesn't hurt. I haven't had a bad flare like this since I first got
sick 8 years ago.
Living with Crohn's Disease since Jan./2000
But still trying to figure out if I truely have it.
(This is such a confusing disease)
Drugs I have tried:  Just about everything
Drugs I'm on right now:  Prednisone 40mg

Veteran Member

Date Joined May 2007
Total Posts : 1284
   Posted 6/8/2008 2:20 PM (GMT -6)   
Crohn's is one of those things that just seems to vary from person to person...

I get a little bit of blood in my stool, but I think it's because I have hemmorroids. As for me, I hardly ever have diarrhea... I'm mostly constipated... *Except for right now... I'm constipated really bad, but when I do manage to have a bowel movement, it comes out either as sludge or liquid...*

As for remission, I believe it would consist of being pain-free without having to take any pain medicine, having pain-free bowel movements, having more energy, eating without ever feeling sick... not being on a lot of prednisone (if any)...
I think I am being picked on by life, sometimes. But's that okay. Life and I are good buddies... I know life doesn't mean no harm. It just is the way it is. I can accept that.

Regular Member

Date Joined Jul 2003
Total Posts : 365
   Posted 6/8/2008 4:34 PM (GMT -6)   
I have never had blood in the stool. Sometimes I have it on the TP though.

Regular Member

Date Joined Feb 2008
Total Posts : 298
   Posted 6/10/2008 12:54 AM (GMT -6)   
For me, a flare consists of bloody poo, always. I have between 6-19 episodes a day. Basically I "pee out of my butt" and my poo looks like oatmeal. Sometimes just liquid. Sometimes it is just blood and mucus. I haven't really gotten mouth sores but get a rash, etc etc. I have never had a flare that did not consist of bloody poo. I know it is different from some people. I talked to a girl when we were both getting our remicade treatments and her flares consisted of having lots of dx. Take care!!

New Member

Date Joined Jun 2008
Total Posts : 4
   Posted 6/10/2008 5:39 AM (GMT -6)   

I was diagnosed with crohn for 4 months ...
i'm pass very difficult moments ..
I am being medicated with corticosteroids (budesonido) but feel abdominal pain every day, all the time ....
Is this normal? there any medicine for the patient not have so many pains?
the symptom k worries me most is the same abdominal pain very strong ...
sincere compliments

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 6/10/2008 8:16 AM (GMT -6)   
every single day
Forum Co-moderator - Crohn's Disease
We will find a way, or make one.-Hannibal (crossing the Alps in the 15th Century on war elephants) 
Make sure your suffering has meaning...-?
All suggestions/options/opinions are caveated with please consult with your local health care provider...

Mormor Vicky
Veteran Member

Date Joined Mar 2007
Total Posts : 684
   Posted 6/10/2008 12:30 PM (GMT -6)   
I've never had observable bleeding. I'm in remission right now and for the most part I feel 100% better then before my surgery, but there are some days that the fatigue is terrible, my joints hurt, I have butt pee or I have pain. I call them my mini-flares. They usually last a day or two and I have them usually every week.
Vicky / 48 years old
DX'd with Crohn's during a resection August 2006
DX'd with Steriod induced Diabetes November 2006
Considered in Clinical remission but have minor signs of disease activity
Daughter (27) also has Crohn's since she was 12.
Currently on 4000mg of Pentasa only for Crohn's
No longer able to take 6-MP because of Bone-Marrow Suppression
Cymbalta, Metformin, Lipitor

New Member

Date Joined Jun 2008
Total Posts : 10
   Posted 6/14/2008 2:46 PM (GMT -6)   
What is CDAI and why have I never been informed to have that checked? Please explain! Thanks!!
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