Time to get a 2nd opinion?

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Matty G
New Member


Date Joined Dec 2007
Total Posts : 19
   Posted 1/8/2008 6:31 AM (GMT -7)   
Last wednesday I had another (as the er doctors called it) a "mild to moderate obstruction". This is the 4th flare I've had since august. I've been hospitalized once in august and also in november. This time they released me because I able to keep down some water that they gave me. I'm going for a blood test today to see if the mg of Imuran (currently taking 100mg) is enough for me. My doctor wanted me last time to start Humira, but I was denied because I have RA. I am sure he is going to push Remecade tomorrow when I go for my appointment (I saw his PA last thursday).

I've been the sickest I've been since august. I'm just thinking that it maybe time for a second opinion on the course of treatment for my crohns. Urgh, its just discouraging. I take all my meds, get 8 hours of sleep everynight, try to stay away from stress. And I just cant win for losing.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 1/8/2008 7:31 AM (GMT -7)   
Sorry you are feeling so bad. Any reason you don't want to try Remicade? I know alot of folks on this board have had great success with it. Hope you get some answers and help soon.
Been living with Crohn's Disease for 32 years.  Currently on Asacol, Prilosec 60 mg, Estrace, Prinivil, Diltiazem, Percoset prn for pain and Calcium.  Resections in 2002 and 2005.  Recently diagnosed with Fibromyalgia and doing tests to see if I have Inflammatory Arthritis or AS.


frank j
Regular Member


Date Joined Jun 2006
Total Posts : 341
   Posted 1/8/2008 8:31 AM (GMT -7)   
Sometimes a second opinion can confirm a doctor's course and make you feel more comfortable that you're being treated appropriately. Any decent doctor will be fine with a second opinion. It can even help the doctor patient relationship by building trust going forward after the second opinion. If you explain that it's your LIFE and you're scared and that you need this reassurance. He/she should be find with that. If not, then it's probably time for a new doc anyway.

Good luck.

Skjura
Regular Member


Date Joined Jun 2007
Total Posts : 210
   Posted 1/8/2008 12:42 PM (GMT -7)   
Hi,
the (partial) obstructions are from a stricture. Even if medication keeps your intestine free from inflammation, you have to be careful what you eat. I have the same problem myself. I haven't been to the ER, but I have been close to go a lot of times. (Was there the first and second time, but not later).

Inflammation results from the production of prostaglandin and other materials are produced keeping the intestines inflammated. A stricture is not flexible as the intestines or the bowel, and when you eat food that has hard pieces such as bits of nuts, seeds of fruit, or even coarse, undigested brans from cereal, this can irritate the intestines and make the stricture pull the opposite way than the normal movements in the intestines. Your vegetables should be cooked to death, and should never be fried, and apples, potatoes and similiar food should be peeled. Even meat has to be soft and with no hard parts or slices.
All persons with IBD needs to have good food selection, sensible supplementation and ongoing stress control.
I.
 
Diagnosed CD June 2007. Have only used prednisone. Did make a difference while max dosed. Got my problems back when tapering.
 
Using Low Dose Naltrexone from sept. 2007. LDN is super! I am now in remission ;-)


CrohnieToo
Veteran Member


Date Joined May 2003
Total Posts : 9448
   Posted 1/8/2008 5:50 PM (GMT -7)   
Any time I am in doubt or just want confirmation of my treatment or suspicions I get that second opinion. And I get it from a TOTALLY INDEPENDENT doctor. I don't provide dictated results or office notes. I provide ONLY raw data. Films, labs, etc.

Once bitten, twice shy. When my husband was facing a second back surgery, the orthopedic surgeon was the doctor who admitted him, w/a neurosurgeon called in to consult and assist. Thru our family doctor we learned the neursurgeon didn't agree w/the surgery. When I approached him about it he said he wouldn't discuss it because he was ONLY the consulting physician, NOT the attending physician. Needless to say, we insisted on discharge and took off for Mayo Clinic. No surgery and 3 months later playing golf!!! You can NOT rely on a second opinion from two physicians who know each other or work w/each other!!!
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.


Zanne
Veteran Member


Date Joined Apr 2005
Total Posts : 3763
   Posted 1/8/2008 6:02 PM (GMT -7)   
Is it possible the stricture is from scar tissue and that is why the Imuran isn't helping? Have you had any scopes to take a look at where the obstuctions are happening? I had one stricture from scar tissue. I spent months having to live on full liquids while the doctors tried to decide if it was active disease or scar tissue. I would go for a second opinion and I would want to have some testing to see if they can find out what is really going on. If it is scar tissue, no medicine is going to make it better. It will continue to obstuct if you eat things it doesn't like, or until it is removed. I do hope that they can figure out what is going on and try to get you some relief.
Suzanne

CD 19 years offically, 29 unofficially. 3 resections '93, '95 '97
Symptoms constantly but all tests show only minor ulcerations. Currently having multiple episodes of gastritis with no known cause.


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


Blue Velvyt
Regular Member


Date Joined Sep 2006
Total Posts : 194
   Posted 1/8/2008 6:07 PM (GMT -7)   
There is absolutely no reason you should not feel comfortable gettting a second oppinion, I hope doctors dont make you feel that way, be honest, let your doctor know how important your feelings are about matters and hopefully all will go well, it did for me.

I tried remicade 3 times, each 6 weeks, worked for the week I had it, but not beyond that, switching to humira this month, keeping my fingers crossed.

I went through 3 gi's till they got it right, and I have to think the wrong answers at first helped the third gi get it right perhaps, so something to be said for multiple oppinions

and for me it really is about DIET DIET DIET

If I cheat sometimes even a little, I PAY in pain

Wish yout he best of luck, communication has been an important key with my doctors

mcleaver1969
Regular Member


Date Joined Jun 2006
Total Posts : 267
   Posted 1/9/2008 9:50 AM (GMT -7)   
When was the last time you had a scope to see what's going on in your intestines? In my opinion, a second opinion from another GI might just start you over at square one...they may want to try the same Rx you've already tried, run same blood tests, etc.
I agree with frankj, this is your body-your life, you need to tell you GI how much pain you are in, voice your frustrations until he takes you very seriously. If you have been in the hospital several times because of obstructions it's time to try something drastic. I alot of CD sufferers have had great success with Remicade, it might just be your saving grace. If nothing else is working it just might be worth a try...maybe the Remicade with a low dosage of steroids might control the inflammation enough to give you relief.
Talk openly with your GI, it's their job to help you, make sure they do.
Please take care and know we are all here for you!
Marci, 38 years young, Rockledge, FL
Dx with Crohn's disease March 2006
Currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor,
plus 3x per day heavy iron supplements for anemia,
calcium supplement, daily multi-vitamin,
Lasix as needed for ankle/feet swelling
Self-proclaimed "recluse"  do to CD  ;)

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