Medicine Issues, Doctor Issues, Anxiety Issues

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New Member

Date Joined May 2010
Total Posts : 16
   Posted 6/6/2010 12:07 PM (GMT -7)   
Im only 4 months into being diagnosed with Crohn's and already fed up, for those of you who have had this for years, I cant even imagine.

So my visit to my GI initially was pain in my upper left quadrant, under my ribs. When they did my colonscopy, they actually found Crohns in the opposite area, lower right quadrant, in my illeum. I had never had pain or discomfort here, so was surprised. I was put on Pentasa, then Asacol HD, and now Entocort. When I take the medicines, it makes this pain in my upper left quadrant, very much more apparent. When I stop, I get the pain now in my lower right, which would make sense, in my terminal illeum. So it is a constant struggle. Take the medicine and feel awful in one area, or not take the medicine and feel awful in the other. I feel as if the pain in my upper left is not Crohns, but rather, any of these medicines I have taken so far is irritating something along my tract. Be it my pancreas, stomach, spleen (anything else in that area?) as it doesnt feel like a typical Crohns pain. Since, Ive had a CT scan done, and they called me and said it looks normal, whatever that means. I havent had any blood tests since, and wondering if another test could offer insight (Pill cam?)

I hate my GI. It takes forever to get in to see him. When I call and complain all he does is switch my medicine. I dont want to call him again. Im currently on Entocort, my third medicine, and I feel like if I call and complain, hes going to switch me to another medicine, without seeing me, and this next medicine will do the same exact thing the first three have. Make me feel better in one area, worse in another. Has anyone else had issues similar to this? Has anyone else gone through this many medicines in as fast a time?

I am very much considering switching GI's, but have no idea who would be a good doctor to go to. Is anyone here in the Cincinnati area and can recommend a good GI?

Thanks for listening.

Elite Member

Date Joined Jan 2005
Total Posts : 24909
   Posted 6/6/2010 3:07 PM (GMT -7)   
hi there
all i know is ive gone thru 2 meds n now on entocort as well
i had problems with other meds
i did not like my gi at all
he was arrogant n snide
i told my family doc this and he sent me to another
i live in ontario so its diffeerent im sure
i think i just dont like being treated like an asket u know n i had no trouble last gi app in telling him as such lol
i hv no clue about docs there but just want to wish you the best its frustrating to say the least
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Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 6/6/2010 3:20 PM (GMT -7)   
about the meds, doctors often start their patients on low-grade medicines and then build up, gradually, to stronger meds if their patients seem to need them. That may well be what is happening with you.

However, you are a newly diagnosed patient, and I think the newly-diagnosed (and all patients, really) need good communication from their doctors, as well as understanding and sympathetic support. It sounds as if you are not getting that from your current doctor, so maybe a change would be a good idea.

I can't recommend anybody for you, as I'm in a different country, but maybe one of the other members will be able to help.

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Regular Member

Date Joined Mar 2010
Total Posts : 49
   Posted 6/6/2010 4:35 PM (GMT -7)   
You could always call up to the big hospitals (Mayo, Mass Gen, Brighams & Womens, etc.), explain your situation, and see if they could give you a name of a GI in your area that trained at their hospitals.
Diagnosed at 17, currently 23 :)  Have had 1 resection so far.  It's been an adventure!

Regular Member

Date Joined Oct 2009
Total Posts : 111
   Posted 6/6/2010 8:11 PM (GMT -7)   
I also have this upper left quadrant pain almost all the time. The worse the pain gets, I start running to the bathroom more and getting more mucus and blood.

That said, my current GI gave me a prescription for something called Neurontin, which works specifically on nerve-related pain. His theory was that I get inflammation in the turn right below the spleen that is pressing on nerves. It does help - it's not total relief, but it's better than nothing, and I really dislike taking the narcotic painkillers unless I absolutely have to.

Just a thought. :)
chronic active colitis/unspecified IBD - still awaiting a PillCam
Lialda 1.2 mg 2x/day
Prednisone 20 mg taper in progress
Remicade - 1 infusion so far
Darvocet or Lortab as needed for pain

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 6/7/2010 6:33 AM (GMT -7)   
Just fyi many of us Crohnies suffer with Acid Reflux/Gerd along with our Crohns. That might be something to discuss with your doctor. Hope you get feeling better soon. The right mix of meds can get you feeling better, sometimes though it is time consuming and miserable till we find the right mix. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & 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"*

Regular Member

Date Joined Mar 2010
Total Posts : 303
   Posted 6/7/2010 12:40 PM (GMT -7)   
Try the CCFA website to see if they have a dr in your area. It is
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Ferrous Sulfate(iron supplement)

Regular Member

Date Joined Feb 2007
Total Posts : 430
   Posted 6/7/2010 1:32 PM (GMT -7)   
When I was first diagnosed over thirty years ago all of my pain was on the left side while the problem was really on the right. It's not all that unusual to get what my GI called "referred pain". BTW, change doctors for goodness sake!
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