too many questions, not enough answers

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New Member

Date Joined Nov 2009
Total Posts : 2
   Posted 11/25/2009 3:42 PM (GMT -7)   
I am not new to Crohn's, I am actually scheduled for my 45th remicade treatment in december.  For the most part it is doing the job.  The issues I am having now is my Thyroid gland stopped functioning, i gained weight without eating, I never have an appetitie, im pretty sure my metabolism is completely screwed up, I am always tired, and always in joint pain all over.  I am seeing a really great GI, good family practice doc too.  I take oral pain medicine sometimes to just allow me to do my job.  When I am taking these, I feel great.  I can eat and not hurt, I sleep better, I have had rehab evaluation done, with the conclustion that there is no problem because I am following the doctors orders to a T.  I can tall that my tolerance is building.  I have been on oral pain meds for 10 years with real no significant increase.  I want to loose some weight, or a least begin working out again hoping to improve my overall life struggles.  I work full time.  I dont know what to say or ask the dr. I need something that will help with pain, increase appetite and energy.  I am taking synthroid which was extremely hard to get used too.  I refuse prednisone.  I am taking no other orals. and affraid of methotrexate.  i have concidered pain management, but unsure about it.  I refuse to obtain prescriptions except from my general practioner: dont want any mix ups.  I have also considered alternative routes.  Any suggestions, or anyone feeling the same.  I put on a good mask with my family to not worry them, but I am often in wreathing pain.  What can I do?

Veteran Member

Date Joined May 2006
Total Posts : 1177
   Posted 11/25/2009 6:04 PM (GMT -7)   
Hi. I think a lot of this could be because of the hypothyroidism. My mother suffers from hypothyroidism, and she before she was diagnosed, she suffered from extreme fatigue, weight gain without eating a whole lot, and very hoarse voice sometimes. Also, the undiagnosed thyroid problems lead to some arthritis as well. It may not be related to the remicade or crohn's at all - it could be because of your thyroid gland not functioning. If your crohn's symptoms are not flaring, then, I'd try fixing the hormone imbalance caused by the malfunctioning thyroid gland, and see if that makes things better.

If getting the thyroid hormone in balance does not fix these issues, then get your blood tested for inflammation (CRP and ESR), and for anemia, B-12 deficiency and Vitamin D deficiency. If all those are fine, I'd move on to a rheumatologist, and check for lupus (ANA test), drug-inudced lupus (anti-histone antibody test), RF factor (for RA), anti-CCP (for RA) to try and get to the bottom of it.

I am not sure about the pain medication issues. If the pain is manageable, before upping the pain medication, I'd see if you can ID the cause of the pain and fatigue.

I hope you can get to the bottom of this. I hope you have a good thanksgiving tomorrow!

Husband with Crohn's
Diagnosed March 2003 Ulcerative Proctitis
Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
Canasa, Lialda, Remicade, VSL#3, Florastor
In Remission since June 2008
Stopped vancomycin for c-diff Jan 1 2009
C-diff free, until Sep 2, 2009
Fighting c-diff, I guess for life

Regular Member

Date Joined Sep 2006
Total Posts : 171
   Posted 11/26/2009 1:04 AM (GMT -7)   
Hi medicboles, I can't advise you on the other problems your having as I have not experienced them, but I can address the pain meds. I have been taking morphine for 20 years and I can assure you that the last thing you want to do is increase your pain meds if you can avoid it. Narcotics are guaranteed to cause constipation and it sounds like you really don't need that with your bowel problems.

It sounds like PV gave you some good advice on actions you can take that might negate the need to increase your meds, but if you really need more relief, I would recommend that you talk to your family dr about possibly switching to a different pain med if you really are developing a tolerance for what you're taking.

Unfortunately the goal of pain meds is not to be pain free, but to bring the pain down to a tolerable level. Attempting to be pain free will lead to higher and higher doses until overdose occurs. Since you've been on pain meds for 10 years you probably know that but I just wanted to remind you and offer an alternative to increasing the dose.

I hope you get to the bottom of your problems and get relief very soon.

I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 11/26/2009 8:54 AM (GMT -7)   
I agree you need to get your Thyroid under control and there are meds that will help that. When I was having thyroid issues I had to see a Endoncrinologist. I suggest you see one soon. Thyroid whether too low or too high can really make you feel like crap. The Thyroid is like the bodies barameter, when out of whack it effects your whole body. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*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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