My GI appt. has left me a bit confused HELP!

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HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 6/26/2009 5:18 AM (GMT -7)   
Good morning all.  I went to my GI yesterday and am still trying to process everything he said to me about my desease.  He said that the pain I feel on my right side is probably always going to be there and won't go away.  He believes that it is possibly a sensitive spot that as my food digests well....hurts.  I can live with pain,  yet I was really hoping that it would not be a constant in any one area. 
 
The good news was that my CT scan shows healing in my intestines.  I was very relieved to hear that. 
 
I am going to try going off the endocort again and am a bit worried about that.  The last three times I attempted this my SED rate shot way up.
 
I guess I am confused because of the pain that won't go away and my still having quite a bit of pain.  Is there anything anyone does for this?  I have tried walking and will continue to do so--I don't make it very far, but I go.  I know that is the important thing.  Also, since I am healing why is there so much pain still?
 
Thank you for reading.

36/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Imuran 50 mg daily,Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/26/2009 6:11 AM (GMT -7)   
One thing that I do that helps the pain alot, it using a heating pad. That helps more than you would ever imagine. I am actually almost addicted to my microwaveable corn bags. Just pop it in the micro for 3 minutes and you have warm comfort for an hour or so. Sending healing thoughts your way.

Hugs
Gail *Nanners*
Gail*Nanners* Co-Moderator for Crohns Disease and 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, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

britt1449
Regular Member


Date Joined Apr 2009
Total Posts : 85
   Posted 6/26/2009 6:32 AM (GMT -7)   
I am sorry you are going through some conflicting issues.  I completely understand.  It's frustrating, because you know there's something wrong because you are in pain, but it seems that all your labs check out.  I'm in the same boat, unfortunately.  But your GI is right... you will probably always have problems in a certain area.  My "problem area" is in the LRQ as well, and I know when I eat something that is difficult to digest, because I feel it!  Also, I had an abscess in my psoas muscle (connects from the vertebrae to the front of the thigh), and I have tinges of pain from time to time in that area.  It really jars things when I'm walking as well, so you are not alone.  Like Nanners, I use a heating pad occasionally, but since I experience such lower back pain as well, I generally take a really hot bath and relax.  It helps!  From time to time, I do need some pain medication, but it isn't chronic.  I hope this helps.
Brittany
 
Currently taking: Humira 40mg/every other week, Zoloft 50 mg/day, vitamins and supplements
Have taken: Cyclosporine, Pentasa/Asacol, Aciphex, Imuran, Sulfasalizine, Cipro & Flagyl, Prednisone, various pain med's, Xanax
 
Surgeries: Appendectomy 2001, Ileocecotomy 2007


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 6/26/2009 6:44 AM (GMT -7)   
Good news that there are signs of healing. But I think your gastro is WAY off base that the pain will always be there. It sounds like he is setting his standards way too low.

How much do you weigh? Imuran is usually a weight-based dosage. 50 mg Imuran and 2000 mg of Pentasa both sound like underdosages. Pentasa dosage is usually 4000 mg a day.

Have you already started tapering the Entocort? The usual dosage is 9 mg daily. You may need a slower than usual tapering off Entocort. I was on 9 mg Entocort daily for 6 weeks, then 6 mg daily for 3 weeks, then 3 mg daily for a week and 3 mg every other day for a week.

How long have you been on the Imuran? U of M told me that it can take up to 6 months for Imuran to kick in to really doing its job.

How often does your doctor script blood work? My gastro scripts a standing blood draw every 3 months for the Imuran.
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.


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 6/26/2009 7:21 AM (GMT -7)   
I agree with "CrohnieToo". You shouldn't have pain ALL the time. When I was on Pentasa, I took 4 pills 4 times a day. I currently take 3 Imurans a day. The pain shouldn't be constant, especially if the ulcers are healing. Even when I'm in full fledge crohns mode, I'm not in pain all the time. Personally, I think you either need a new GI doc or at least get a second opinion. Hang in there, eventually the right doc will figure things out and get you back on track.
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, Levsin, Welchol 625mg, Prednisone 10mg(started weaning off, now going back up in dosing).Canesa suppositories, Calcium, Acidophilus & Potassium
Misc:  I recently joined a local crohns disease support group that meets monthly.  It has been great talking to and meeting other people who share the same disease.  I hope to continue gaining insight through this forum as well.


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 6/26/2009 7:32 AM (GMT -7)   
I am in pain all the time, but I have never been completely out of a flare. I have found that narcotics help, because trying to deal with the pain on your own is too wearing and I think can make you worse.
Forum Co-moderator - Crohn's Disease:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 6/26/2009 3:28 PM (GMT -7)   
I'm another person who's been told I'll have pain all the time...

What are you eating, HM? I am wondering if a low residue diet might put less pressure on that tender area. A properly balanced liquid diet might help too... but perhaps your doctor wants you to keep trying to eat normal food. It'd be good to have a conversation with him about that.
Co-Moderator Crohn's Forum.

New meds thread


HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 6/27/2009 4:32 AM (GMT -7)   
Thanks everyone. I weigh 230 pounds and am up from 190 when I started medication. My GI says its from the endocort, but my family dr doesn't agree. I will try the heating pads...have not went that route before:). I have been on imuran since jan 09 and bloodwork every 2 month's.

36/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with UC, then Crohn’s 2008

Current medications: Imuran 50 mg daily,Endcort 3mg 2X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 6/27/2009 6:44 AM (GMT -7)   
HM is your pain like a crampy pain? If so, you might ask for something like Bentyl. It calms the spasms your bowel is having. Another med that might help is Ultram, it helps the pain but doesn't cause the drowsiness. Good luck and big hugs!!
Gail*Nanners* Co-Moderator for Crohns Disease and 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, Calcium  w/Vit D, and Xanax as needed for my anxiety.  Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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