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I have a doctor that is very questionable... Before my resection I went to my dr at least three times and told him something was wrong. At first it felt like I had a uti but my general dr confirmed that it was not I had a donar done on my female parts still nothing One day I couldnt hold my urine anymore then It started hurting for me to walk. So instead of checking the chrons he once again sent me to my reg dr. Eventually I went back into the ER and cried my eyes out I knew something was wrong but they kept sending me home. Still in Diapers but this night they kept me. Little did I know it would be a month before I could go back home. The part of my intestine that was affected by the Crohns was infected and swollen to the point that my urine could not pass through my ureter to come out In turn my urine was going back up in my kidneys which were now swollen. While putting a stent in my ureter they noticed a big mass on my liver which later turned out to an infection also Anyway after all is said and done I'm no medication for Crohns at all???? Is this weird  Mabe im bring insecure but to me if he had listened to me and checked this out mabe i could have changed medication from Humira to something else.. If i had not continued to go back and forth to different ER's I would not be here today..Sorry Im babbling but if you have been through this before feel free to give me some advise...Thanks

 Reply posted for lady7129.

I hope as this is an old post that the person will still see my reply. I haven't been on this site in years and wanted to give an answer when I saw this post. I was dx'd with crohns in Dec of 98 and had my first surgery in May 90. I had my whole large intestine removed and received an ileostomy. After my surgery I took no meds unless I had a flare. I consequently found out that meds did nothing for me that my only option for remission was surgery. I had my second surgery in March 97. The dr's said the way I was going that I would have to have surgery again probably in 7yrs again which would be my last that I would have to go on tpn the rest of my life. All I have heard since then is OMG your not on maintenance meds? NO I have not taken a thing since that last surgery in 97 and I still to this day have not had to see a gastro or anyone about the crohns. I have the occasional stomach ache but no sign of crohns. I myself do not believe you need to take meds if you don't have any symptoms. It's been 14yrs since my last surgery and I have not taken a thing and I don't plan to since this has worked so far for me.

 Reply posted for lady7129.

Sorry to hear about your ordeal.  My answer is going to differ slightly from the others, but hear me out.  I do agree with the others that you need a doctor you can trust and that you feel is listenting to you so you definitely want to fix that. However, it may be that the doctor is not explaining his reasoning to you on his path forward.  You may want to pursue that piece more.  My daughter is in the midst of a very similar treatment and issues.  She was on Pentasa, then 6MP, then  Humira since mid-Dec.  However, she was VERY sick when Humira started.  She has not gotten significantly better.  Last Friday, a CT scan showed she had abscesses, and Monday they did a resection and removal of the abscesses.  (believe the abscesses started before Humira was started.  Humira won't fix them.)  The biopsy came back and Crohn's was prominent in the middle pieces they removed; however, there were no traces in the ends of the sections.  So, they consider her "disease free".  Her Colo-rectal surgeon and her GI don't want to put her back on Humira because she is young and it carries so many negative side effects to risk on a person who has no disease.  So, that's not to say you should not be on ANY medicine, but they may feel it is overkill if the biopsy showed good success from the surgery.  All and all, it's NOT an easy decision because you worry about being the 50% who have the disease recur.  I"m still not sure how we feel about it, but do fully understand their reasoning.  Immune suppressing drugs should not be used without good reason.  We will be thinking about it more.  My only suggestion here is that there is potentially good reasoning behind it.  Good luck!

 Reply posted for lady7129.

Wow!  What an ordeal!  You are right, you need a new doctor and you need to be on maintenance medication.  Hopefully that will keep you from getting so sick again.

 Reply posted for lady7129.

I agree with all of the other members.  Please keep your head up and look for another doctor.  Just please remember that your various Doctor's should be there for you.  It took a while, but i finally found relief after i chose a good doctor who would work with me and my illness.  This includes your primary care doctor.  You should also find a hospital, Immediate Care facility, and\or ER that you are comfortable with that is close to you and your immediate family. This will greatly influence the doctor's you chose to see.  I had to change the primary care doctor i had for the past 9 years because he no longer makes visits to his patients at hospitals.  This is unfortunatly a something that is becoming too often the norm as less doctor's are looking to become family practice primary care doctors.  They can make more money becoming specialists. God bless you and keep your head up!  I know you will eventually find some relief, just don't stop fighting.  

 Reply posted for lady7129.

I'm so sorry you've had such a terrible go and such bad care from your doctor. On the front page of this website, on the lower right hand side, you can find a link to a CCFA doctor. One that you can trust to get the care you deserve.

Good luck!

Best wishes for good health!

 Reply posted for lady7129.

You need to find another physician who you can talk to and trust.