I have a question

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megamax
Regular Member


Date Joined Apr 2007
Total Posts : 217
   Posted 8/30/2007 10:42 PM (GMT -7)   
Hi everyone!
 
I am not sure what to do.....every morning I wake up I have pain...I mean unbearable pain before I go to the bathroom then I am ok( exept now because I reduce my entocort I have pain most of the pain) my question is how I am suppose to know what's bothering me if I only have pain when I wake up ? do I calculate  what I had for supper last night? I am not sure what to do because my family think it's the food but I dont get pain after I eat only before going to the bathroom
 
any advice would be very apreciated
 
 
thank you in advance
 
Jackie
Megamax
 
 
35 yrs female, dx with crohn's on july 13th 07  entocort 9mg for 6 week . dx with depression in 2002 ,
 


MMMNAVY
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Date Joined Jul 2006
Total Posts : 6927
   Posted 8/31/2007 6:01 AM (GMT -7)   
Jackie,
Most of us take narc's to deal with the pain.  Keep a food record just for reference your GI might want to see it.


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JaSanne
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Date Joined Oct 2006
Total Posts : 2044
   Posted 8/31/2007 7:53 AM (GMT -7)   
I'm just guessing from my own experience, but this sounds like you have something going on in your lower colon. Prior to my colon surgery, my sigmoid area would cause me to have this type of terrible pain. Since it's the last part, it's sort of like a delayed reaction, not something that necessarily kicks in right after eating. You probably need to call your GI as you may have some narrowing due to inflammation or a stricture, or it may be severe spasming. I'm a believer in narcotics for pain since we're not supposed to take NSAIDs.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


Aimee =)
Veteran Member


Date Joined Jun 2004
Total Posts : 1020
   Posted 8/31/2007 8:09 AM (GMT -7)   
Have you asked for pain meds? It sounds to me like you have active disease that is flaring up when you digest things. Until the disease is under control and the pain subsides, you should try taking some pain medication to help stay on top of it.

gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/1/2007 6:44 AM (GMT -7)   
Hi It could be the area that is effected like suggested. Sounds like your meds aren't doing there job maybe .Following low roughage diet may eliminate the wondering about foods eaten. Let us know if you find out. lol gail

JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/1/2007 7:00 AM (GMT -7)   
Sounds like the CD, and yes, I agree with the above posters that you should ask for narcs to help control the pain, however it's even more important to talk to your doctor about why your meds aren't helping. Maybe it's time to try something else. If there's pain, it's a symptom of your disease in most cases,and you need to get the disease under control.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


megamax
Regular Member


Date Joined Apr 2007
Total Posts : 217
   Posted 9/1/2007 12:11 PM (GMT -7)   
thank you for your post.
I had a colonoscopy done in june and the only inflammtion there were was in my ileum
my GI said that he found few apthous ulcer in my left colon but the biopsy came back with no inflammation.
that's the reason why I am so frustrated its because I have no inflammtion in my rectum and I don't understand why I am in sooooo much pain when the GI says that it's a mild form of crohn's . I just can't figure out that my biggest pain is before going to the bathroom
aan now because I reduce my entocort ther's always a section in my abdoment that hurts.
 
I am sorry to vent like this...it's just that I don't understand how my body react I can't tell if I am eating certain things will bother me because the pain is the next morning so the day before and eat different things during the day....
 
also I am on jenny craig and I don't know if it's a good thing or not
 
I have to do a blood test to see my level of crp and sed rate and I will right everything down and bring it to the GI
 
any advice on what should I do next would be appreciated
 
 
thank you guys for your support and advice
 
jackie
Megamax
 
 
35 yrs female, dx with crohn's on july 13th 07  entocort 9mg for 6 week . dx with depression in 2002 ,
 


JaSanne
Veteran Member


Date Joined Oct 2006
Total Posts : 2044
   Posted 9/1/2007 1:06 PM (GMT -7)   
Pain and severity of inflammation doesn't always correlate. In other words, you can have immense pain even when the disease doesn't look that bad. If your GI doesn't order something for pain, maybe your GP would. I think if more GIs walked a day in our shoes, they wouldn't hesitate to prescribe pain medication. Chronic pain wears down the body and soul, in my opinion.

If your GI found aphthous ulcers in the left colon, then you have disease in that area regardless of what the biopsy says. The biopsy only speaks for that particular tissue sample. Crohn's skips areas, so you can have a huge ulcer in one spot, and half an inch over the tissue can be fine.
48 yr. old. Ileocolitis.  CD since early teens, misdx'd until age 36.  Hemicolectomy-left side in 2001.  Disease returned in 2003. Arthritis, episcleritis, chronic pain due to surgeries (nerve damage, adhesions) and disease.  Recently dx'd scoliosis.  History of endometriosis.


belleenstein
Veteran Member


Date Joined Feb 2007
Total Posts : 1010
   Posted 9/1/2007 5:42 PM (GMT -7)   
Where is the pain? When I have inflammation and eat foods with bulk (oatmeal, whole grain breads) or too much roughage (fruits/vegetables) I start my days with terrible cramping pain too. It goes away after the first bm but until then I suffer waves of pain. The pain is centred in the LRQ but radiates throughout the bowel. In my case it is caused by inflammation in what remains of my terminal ileum. I do not have crohn's anywhere else.

I do not take narcotics for this pain because it is transient and I do not want to live with (what are for me) awful side-effects of the narcotics. I use the pain to guide me in my diet and as a signal that maybe my medications aren't doing their job. When I have this kind of pain I know now that I also have inflammation. It is a call to action.

Hope you can figure out how to relieve your symptoms. I would certainly try reducing the fibre and residue in your diet to see if it makes any difference.
Belleenstein:

30+ years living with Crohn's.


sbcgrace
Regular Member


Date Joined Nov 2006
Total Posts : 281
   Posted 9/1/2007 6:02 PM (GMT -7)   
Mega,
I think probably most of us "feel your pain". By that I mean the pain of not having a doctor believe the amount of pain you are in due to the fact that they can't "see" any reason for you to have the pain. I have been living with that for about the last 6 months. My GI said that he could find NO signs in any tests that he had done on me that would explain the pain I am in so, therefore, he thinks I'm making it up that I am in pain. WRONG!
I decided to go with another GI for him to evaluate my case. Turns out that he has the same feelings about this disease that I do. I know that I am no expert but I have done quite a bit of reading. My mom has MS and her doctors always treat her to STOP disease progression, they don't wait for it to get worse before they decide to bring out the big guns. Getting back to my new GI, he said that he thinks I need to start Remicade. He believes that Remicade does quite a bit for at least slowing the progression of the disease. He also believes my pain. He thinks that I have a problem somewhere that they can't get to.
I have to say that I'm excited about starting the Remicade aside from the scary stories that some have shared about side effects on this forum. I'm willing to take a chance to see if this medicine will get rid of my abdominal pain, my severe joint pain and etc. that goes along with CD.
Good luck to you. By all means, don't let this disease get you down mentally though some days it gets you down physically!

Currently 3 x per day 1000mgs Pentasa, Entocort (3mgs), Prilosec, multi vitamin, biotin, Lortab, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt.

Preparing to start Remicade because I am steroid dependent now.


JudyK89
Veteran Member


Date Joined Dec 2006
Total Posts : 1986
   Posted 9/3/2007 9:41 AM (GMT -7)   
Also, I've always had more disease upon surgery than the doctors thought because of the test results. Not everything shows up. I once had 2 feet of "string" segment bowel (very, very, narrow), and no one knew it. I just kept losing weight. They eventually decided I had to have surgery and were surprised. I also had a draining fistula into my appendix (and was about to burst) which never showed up on any of the studies.

So keep pushing your doctor, or get another. You know when there's something wrong, it's your body.
Judy
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade finally off of Prednisone, hoping for a long remission from this last surgery. 
 
 


megamax
Regular Member


Date Joined Apr 2007
Total Posts : 217
   Posted 9/3/2007 5:48 PM (GMT -7)   

thatns judy

My pain now is better and I only go to the bathroom every second day BUT I still have like hunger pain that doesn't go away ,I still have pain b4 going to the bathroom during and after ....I am not sure what to make of this . my pain in around my belly button is better

I went saturday to do my sed rate and crp  but I am not sure wether I should still call the GI or leave that way....I really don't know what to do :-(
 
do you guys know what I should do?
Megamax
 
 
35 yrs female, dx with crohn's on july 13th 07  entocort 9mg for 6 week . dx with depression in 2002 ,
 


sbcgrace
Regular Member


Date Joined Nov 2006
Total Posts : 281
   Posted 9/3/2007 5:54 PM (GMT -7)   
I have to say that I have the same pain that you describe as like a hunger pain. That is really the only way to explain it. I go to my GI tomorrow morning and am going to ask about this pain and try to find out what this means. I had it REALLY badly during my last big flare which sent me to the hospital for a week. This might be something that you want to call your GI and tell him/her about. It really could be more than you think. I always call if I have any questions. That's what we pay them for, right?

Currently 3 x per day 1000mgs Pentasa, Entocort (3mgs), Prilosec, multi vitamin, biotin, Lortab, Librax (for spasms) & VSL#3 (for probiotics) or activia yogurt.

Preparing to start Remicade because I am steroid dependent now.


gachrons
Veteran Member


Date Joined Mar 2007
Total Posts : 4527
   Posted 9/4/2007 6:15 AM (GMT -7)   
Hi Jackie Could be that your ilieum is causing the pain from some foods not passing threw nuts ,seeds , white bread is easier to digest I would really go low roughage and if that doesn't work get a better medical treatment plan going for yourself even try liquids and soft for a few days might help.Ask the dietician what is the best diet for that area effected by CD.lol gail
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