anyone experience these symptoms??

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dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 5/18/2009 4:41 PM (GMT -7)   
As I am prepping for my colonoscopy tomorrow (fun) I found this website.  I was diagnosed with Crohn's 3 years ago.  I don't know if I'm in denial, but I'm not sure I have it.  Everything I've read has all these other symptoms.  Here is what I experience.....
When it is really bothering me I have alot of gas, blood and mucous with a foul smell, sometimes bright red blood and sometimes bloody brownish mucous.  When it is very bad, I feel like I am going to have diarrhea and then all I have is this and it can be every 15 minutes.  I feel achy and my rectum feels irritated during this time.  It goes away on its own.  After about 2 weeks or longer.  I eat bland when it's bad.  which helps.  I have not lost any weight.  I don't really have diarrhea.  Sometimes my stomach hurts, but not much.  I am a little anemic.  When I had a colonoscopy 3 years ago, my doctor said it was Crohn's.  Does anyone else have just these symptoms?  If so, what does my future problems look like?  What do I need to look for?  I don't want to take meds... I am using procto foam right now.  (steriod enemas)  Have used them for 2 days, feel slightly better.  I'm thinking I'll have this colonoscopy tomorrow and he'll tell me it's enternal hemmoroids.      Any advice would help.  If it is Crohn's how bad does it have to be before I take meds continuously.  I don't know what tto do for sure...
Thanks

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 5/18/2009 5:13 PM (GMT -7)   
If its Crohns you should already be on meds.  The majority of people with Crohns are on matience medications their entire life, to prevent and or slow down a flare up.  I'm suprised your doc didn't put you on any when he diagnosed you 3 years ago, seems very odd.  To me it sounds like you're in a flare right now, or about to be in one.  I'd question him tomorrow about why you're not on matience meds, if in fact the diagnosis again is Crohns.

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 5/18/2009 5:54 PM (GMT -7)   
He did prescribe meds. First one was Asacol, I got headaches so he gave me a script for Colazal.  That's the thing, I'm afraid to take the meds.  Plus it is 3 pills 3times a day the rest of my life??  I'm not sure what to do.  Is it worse to wait until the crohn's is so bad, or if I take meds now will it prolong it being very bad.?

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 5/18/2009 6:14 PM (GMT -7)   
I believe if you just keep waiting and let it go, you're going to end up having to get surgery.  Ive been on meds since diagnosed and Ive already had to have 2 surgeries.  There are other meds out there. Humira (a shot), Remicade (infusion), Imuran ect ect.  I don't know about you but I'd rather take a couple pills every day, then having to go through surgery and all the comes along with it.  I'm not a doctor, but I seriously suggest you having a long conversation with yours tomorrow.  You need to find a medication that you are comfortable with, and like my doctor says you need to put it into perspective..what will happen if you don't take the meds vs. what may happen if you do.

Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 5/18/2009 6:32 PM (GMT -7)   
So once you know you have crohn's you should go on meds? Regardless if it is mild? plus do my symptoms sound like anyone else's? Does anyone else have just these isolated symptoms? Thanks.

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 5/18/2009 6:41 PM (GMT -7)   
Your symptoms seem pretty common. Everyone is different though.  I suggest meds, talk to your doctor tomorrow and see what he says, if he says no meds I'd get a second opinon.
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/18/2009 11:29 PM (GMT -7)   
You need to find medication that works for you. Honestly, 3 pills a day is really nothing compared to what some people have to take (20+ as an example). If you wait then you will most likely have to have surgery. And headaches compared to some of the more severe symptoms you would have without medication might be worth it if you weigh which is better...I would rather have headaches than perpetual bleeding and abdominal pain.

The sad reality though is that you HAVE to find medication that works for you. Avoiding this will really hurt you and it is so not worth that...
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


LMills
Veteran Member


Date Joined Apr 2008
Total Posts : 1753
   Posted 5/18/2009 11:31 PM (GMT -7)   
And I wanted to add that it really is best to be taking some sort of maintenance med at least e.g. asacol OR if that doesn't work then something like pentasa, even if your Crohn's is mild. This disease will always be working away in your body so you do need something to combat that, and even the best diet, natural healing, enemas, etc. will not do the trick.

I hate that this is happening to you, but being on medication for the rest of your life, and some with minimal to no side effects, is much better than gradually losing your body and having no life at all.
20 years old, Diagnosed with moderate to severe Crohn's and Colitis in May of 2008.
Currently taking:
Prednisone 10 mg, pentasa 2 pills 4x a day, bentyl as needed, omeprazole in the morning, prenatal multivitamin, humira every other week, and Align probiotics given to me by my GI.
Surgery for ectopic pregnancy most likely the result of severe Crohn's inflammation in July of 2008.
Diet almost completely without refined sugars, wheat, flour, gluten, high lactose dairy, and/or junk food in general.
Learning how to live again.
"He who has a why to live for can bear with almost any how."


Wolfie40
Veteran Member


Date Joined Dec 2008
Total Posts : 947
   Posted 5/19/2009 4:15 AM (GMT -7)   
I'm with everyone else, you should be on medication. The headaches may pass with time and I'd much rather have a headache than go through surgery again. If you caught it early enough then taking medication might prevent you from ever having surgery.
Diagnosed with Crohns in 2001
First and hopefully last Ileocecectomy 2/18/2009

Medications: Asacol, Folic Acid, Multivitamin, Dbl. Calcium, Probiotics, Protonix, Monthly B-12 injections.

Living a Great life with my Wife and my two Chocolate Labs
Hunter & Hailey.
I love them dearly.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 5/19/2009 5:51 AM (GMT -7)   
What wasn't mentioned is that you said you were diagnosed 3 years ago. How were you diagnosed? If it was by biopsy, its pretty accurate. Regardless of how, you need to make sure that you find out exactly what is wrong. Since you seem to be questioning your diagnosis, but you know that something is wrong. Why are you willing to live in pain and take chances with your health. Keep fighting until either your doctor has explained things to you so that ALL of your questions are answered or find a doctor who will. And make sure that they explain all your options and all the implications of your decisions. I am also a huge believer in taking maintenance medication. While we are out in the world living our lives, Crohn's is inside working on a microscopic scale, doing damage, that eventually causes big trouble.
Suzanne

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!


Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 5/19/2009 6:27 AM (GMT -7)   
I have had this dd for over 30 years. I once enjoyed a long remission med free. Would I do it again? Heck, NO!! My remission ended with an emergency surgery because I was completely obstructed. You want to talk about pain, that was very painful and very traumatic for me. Just as Zanne said above, if you are not treating your Crohns with some type of maintainence med, your disease is in there doing microscopic damage and you can expect it to end badly. Good luck!
Gail*Nanners* Co-Moderator for Anxiety/Panic Forum
Been living with Crohn's Disease for 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, and Calcium and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia and Osteoarthritis and Anxiety. Currently my Crohns is in remission.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

eva124
Regular Member


Date Joined Sep 2007
Total Posts : 246
   Posted 5/19/2009 6:32 AM (GMT -7)   
trust me taking a few pills is worth it,wish i was dx earlier least then i wouldnt of needed surgery when i was real sick i was taking 26 pills a day,now its just 3 and some metamucil,i never lost weight until i got really sick when eating anything hurt like hell going through,im in remission now and surprised at how horribly sick i was,and i never want to be like that again,i suggest talking to your gi again and ask him any questions you have so u can fully understand whats happening.
dx 17 aug 2007
21 yrs old
13 dec 2007 resection/temp illeostomy 14 feb 2008 temp illeostomy reversed 
150mg azamun
3000mg pentasa


Kittikatt
Regular Member


Date Joined Jul 2004
Total Posts : 422
   Posted 5/19/2009 11:10 AM (GMT -7)   
How did your Colonoscopy go?  What did you find out? confused .
 
Yes, I experience all of those symptoms with my Crohn's except for the blood.  I've been lucky to not have to deal with much blood...but then again, I've been on a maintenance drug, COLAZAL, since I was diagnosed. 
 
Yes, 9 pills a day of just that drug EVERY DAY.  It overwhelmed me when I started them.  I didn't even like to take Tylenol when I had a headache so the thought of taking 9 pills a day really freaked me out.  But I went into remission after I started the Colazal...and because I started feeling better immediately AND because I never could remember to take all of the doses during the day, I decided to drop my dose of the Colazal because I couldn't stand the thought of having so many drugs in my system, particularly since I was feeling better!
 
But TIME has taught me a lot.  I had decided on my own to take only 3 pills/day instead of the prescribed 9 pills/day of the Colazal.  But within a year, I started getting sick again.  Not a "true" Crohn's flare but I just didn't feel good.  My BM's were loose & mucousy (not true D, just loose) and were coming more frequently during the day and there were a handful of other symptoms I was dealing with, too...Crohn's-related symptoms.
 
By January, 2008 I was in a full blown flare.  Iron-deficiency anemia was really kicking my butt and the prescribed iron supplement was making my intestinal problems worse.  My BM's were waking me up in the middle of the night every hour or two and I was having painful gas and abdominal pain throughout the day, every day.  My ankles were swelling.  The fatigue from the anemia and the lack-of-sleep was exhausting me.  I was put on a short taper of Prednisone and Flagyl that helped for a short-while. 
 
I knew I NEVER wanted to go through that kind of flare again.  And if that meant FORCING myself to swallow 9 maintenance pills a day, I was willing to give it my best effort.  And I have.  I'm just now starting to feel like I'm going back into remission.  But I truly believe that's because I got back on the full dose of Colazal.  Does that mean this drug will always work for me?  NO.  But I do believe STRONGLY that it will keep the inflammation in my intestines at bay for a while.
 
There is a new maintenance drug, Lialda, that has been more focused toward UC patients but has been prescribed to Crohn's patients, too.  My GI tried to put me on it back in December.  This drug is only ONE pill/day which is why my GI wanted me to try it.  I asked if it would do anything DIFFERENT than the Colazal.  He said, "No, but you wouldn't have to take so many pills each day."  I thought about it and chose to stick with the 9 pills of Colazal because a) my insurance won't cover Lialda! and b) Colazal is what allowed me to go into remission in the first place.   
 
Since you're not convinced you have Crohn's, I'm curious as to what OTHER information your doctor gave you 3 years ago other than simply telling you you have Crohn's.  Or maybe you got some confirmation either way today since your Colonoscopy?
 
For me, I have scattered ulcers throughout my large intestine.  I have many "extra-intestinal" problems that are common with Crohn's.  Plus, the blood markers came back as a 98% chance of Crohn's Disease.  So no denial for me.  I've accepted drugs are going to be a part of my life.  I DO believe diet helps a great deal, but I do not believe diet ALONE can put my Crohn's into remission or cure it. 
 
Let us know how things go for you...
Diagnosed in October, 2004 at age 32 (misdiagnosed with IBS in 2002)
37/F/SC
Current Rx's: Colazal (generic), Omeprazole, Ferrous Sulfate, Librax, One-A-Day multivitamin, Probiotic, Omega-3 Fish Oil, Vitamin D, Cranberry pills
Secondary conditions: swelling ankles, extreme fatigue, mouth ulcers, joint pain
Previous/occasional Rx's: Prednisone, Flagyl, Levaquin, Xifaxan, Carafate
4/7/09: Gall bladder removal laproscopic surgery (gall stones)


AMinNJ
Regular Member


Date Joined Feb 2009
Total Posts : 40
   Posted 5/19/2009 4:45 PM (GMT -7)   
I've read that some researchers believe that Crohn's severity varies between people but usually stays constant in an individual through a patient's life. In other words, if you have severe Crohn's, you will always have a tendency to relapse with severe symptoms. But some people only have mild/moderate symptoms for their entire life. While they experience a waxing and waning of symptoms, they never get severe. I will try to find the resource where I read that to provide the link.
 
Original poster (dinkydee), your symptoms sound almost exactly like mine... no diarrhea, only episodes of bleeding, mucous, pain and a feeling of fullness in the rectum that come and go every few months. I had those same symptoms for more than 10 years, and was just recently diagnosed with Crohn's after I had a small capsule endoscopy in December. No biopsy to confirm yet, however. I immediately went on a gluten free/dairy free diet and it really helps me. I take no medications. Aside from occasional lower right quadrant discomfort, I have no symptoms. I'm hoping and praying it stays that way.
 
One other note: After my last colonoscopy in September 2008, I sent in a stool sample and it came back postive for C. difficile. You might ask your doctor to test your stool also. My doctor is still not sure whether my symptoms were related to C.diff infection or Crohn's or a combination of the two. I am having another colonoscopy in a few months with the plan of getting a biopsy of my terminal ileum to confirm/rule out Crohn's.
 
Good luck, keep us posted!
Angela, age 43
dx Ulcerative Proctitis 2008 after colonoscopy
dx Crohn's 2009 after small capsule endoscopy
Symptoms on and off for more than 10 years
Currently taking no medications
Gluten-free, dairy-free, low sugar diet
VSL/probiotics, MorEPA, B Vitamins, Folic acid, Vit C, Vit D, Turmeric, Ginger, Selenium, Mushroom


dinkydee
Regular Member


Date Joined May 2009
Total Posts : 201
   Posted 5/19/2009 6:12 PM (GMT -7)   
I am home from my colonoscopy. It's never as bad as the prep! My MD told me today that I have Crohn's %300! I was confirmed 3 years ago with colonoscopy and biopsies. I agreed with him today to start my Colazal. I will get it filled tomorrow and continue with the steriod enemas. He has spent alot of time trying to convince me to take meds, it is just my denial, b/c my symptoms weren't like everything I've read, and I just don't want to have it. He told me the disease has progressed to other areas, mostly in my rectal area and the lower right area, beginning of the Large intestine and little ulcerations throughout.
Thank you for your responses......I do appreciate it and it has helped to convince me to accept it and deal with it. It could be so much worse, I know that. Also should I take probiotics now, or wait until I see how I respond to the med? I'll ask him with follow up appt. but wondered what you all thought.
Again, thanks for the responses!!!

Crohn'snme
Veteran Member


Date Joined Feb 2007
Total Posts : 734
   Posted 5/19/2009 6:28 PM (GMT -7)   
Good Evening, Glad to hear you went through your colonoscopy. I agree with the comments, if your feeling okay, but have crohn's symptoms you should probably treat. This disease can fester and create chaos. I take take 12 pills a day. But you can't concentrate on that, concentrate on being healthy for the long run!

MAG102886
Veteran Member


Date Joined Jul 2008
Total Posts : 674
   Posted 5/19/2009 6:44 PM (GMT -7)   
Im so happy to hear all that (Im not happy you have Crohns) but that you are going to start taking your meds!  A probiotic is always a good thing to take for anyone really, especially with crohns.  Sometimes its hard to come to terms with things like this, especially when its something you will have your whole life.  You deciding to take your meds is a good step in the right direction!  Seriously, if you have any questions, concerns, or just wanna vent about it come here, we are all going through this.  Everyone here is very supportive and caring!
Dianogsed with Crohns: At 16 years old. 22 years old now.
Surgeries:2 Bowel Resections, Gallbladder Removed.
Current Meds: Imuran 50mg, Vitamin B12 (injection), D, and C tablets. Fish Oil Tablets, Cats Claw, Slippery Elm, and Reishi.
 

dorri
Veteran Member


Date Joined Feb 2003
Total Posts : 1876
   Posted 5/19/2009 7:08 PM (GMT -7)   
I'm sure you are glad that is over with, but too bad about the prognosis, but hey maybe if it's treated it may go into remission and never return. That's what we all hope with ours.

I've had CD for several years and like you denied having it for the first several years but each test with each passing year showed it getting worse until I developed narrowing and just before my surgery a partially obstructed bowel. Ouch! did that hurt. Ever since surgery I've been given relief from the pain but lately I've been starting to feel some discomfort again but am I in denial all over again? I had some tests done again just recently and will find out tomorrow what kind of shape my bowel is in.
Hope you go into remission soon.


pillpopper
Regular Member


Date Joined Jan 2009
Total Posts : 209
   Posted 5/19/2009 7:12 PM (GMT -7)   
Maintenance drugs are not a sign of weakness.
To bad it took me years to find that out.
Wish you the best!
diagnosed 1981
remission until 2006
Remacade,resection
B-12,Pentasa,Loperamide,
Entocort, 6mp,Hydrochlorothiazide
Remission since surgery
and 8-week Remacade.
d since 1981(enjoy the look
on Dr's faces)

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