Why do doctors want to give up?

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glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/1/2008 6:23 PM (GMT -6)   
I've had UC for 5 years and have been through 4 doctors.  I've been to some of the best at the Cleveland Clinic and the University of Michigan.  In the beginning the doctors try all of their bag of tricks and when I don't respond they all say SURGERY.  Well, I don't feel that I'm sick enough for surgery and I'm not ready for a permanent solution.  I really just feel like since I'm not the normal patient who responds to Asacol, they think I need surgery.  I battle c.diff as well as UC and recently had a flare with c.diff but my doctor denied up and down that it was c.diff.  He swore my symptoms were UC.  I know my body and I knew I had c.diff.  Sure enough, my results came back as c.diff.  I'm really frustrated because I don't want to find another doctor yet again but how hard is it to find someone that's more compassionate and will work with me a little harder to find the right meds for me?  I was on 6-MP for about a year and finally had no bleeding and only 2-3 bms a day when the c.diff struck and put me in a big flare.  That was back in October and I'm still struggling to get back into remission.  We tried increasing the 6-MP to 100 mg but it killed my appetite and I lost 10 lbs.  I'm now trying the steroid enemas (Rowasa and no other UC meds work) and I hope they'll help.  I stopped taking the 6-MP a few weeks ago just to let it get a little bit out of my system since it was making me feel so lousy.  I plan to start taking 75 mg again.  I hope I don't end up on Prednisone again, it's been about a year and a half since I was on it last.  I had a consult with a U of M surgeon today and I canceled.  I'm just not ready for it and I'm sick of my doctor bringing that and Remi up at every appt.  I don't want a medication that I can die from or get cancer from and I don't want my colon taken out!

Jsanders505
Regular Member


Date Joined Mar 2008
Total Posts : 94
   Posted 4/1/2008 7:55 PM (GMT -6)   
Don't give up! Have you considered trying fecal bacteriotherapy? Look it up. It cures 90% of c diff infections and has shown to cure some cases of ulcerative colitis. I was referred to the center for infectious disease in wichita, kansas where a doctor performs this for c diff. but may be willing to do it for colitis as well.

NuffinButtTrouble
Veteran Member


Date Joined Mar 2007
Total Posts : 679
   Posted 4/1/2008 8:27 PM (GMT -6)   
Have you tried diet? Diet seems to work for some of us.
 
NBT


Diagnosed with Ulcerative Colitis January 2007
Meds: Remicade, Primal Defense Ultra, Multi-vitamins (also iron, B12, Magnesium and Zinc), Flaxseed/Natures Bounty Fish Oil
Swanson Ultra Caprylic Acid (natural anti-fungal) 600mg x2 daily
Carrot & Garlic supplements (natural anti-fungal) x2 daily
Currently taking herbal meds in the search to regain full health.


pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 4/1/2008 8:31 PM (GMT -6)   
It's easy for the docs to give up because they're not the ones suffering yet they get frustrated with sick patients...go figure.

:)
My bum is broken....there's a big crack down the middle of it!  LOL  :)


julee70
Regular Member


Date Joined Oct 2007
Total Posts : 486
   Posted 4/1/2008 9:00 PM (GMT -6)   
Hi GlamourGirl. Good for you for not giving in to the surgery suggestions. Sticking to your guns when you know what you want or don't want can be very hard. I agree that doctors sometimes get frustrated and give up. I'm sure that's why so many people wind up on prednisone before they've exhausted other options.

The steroid enemas sounds like a good course of action. Can you add a different rectal med in the morning? Maybe something like Cortifoam in the morning and the steroid enema at night? I think I might be heading toward that for myself... anything to keep away from prednisone!
-------
UC for the last ten years
Current Meds: 6MP since 2006, Cortifoam
Past Meds: You name it; I've tried it. (Asacol, Colazol, Pentasa, DiPentum, Rowasa, Canasa, Cortenema, sulfasalazine)
5ASA drugs don't work for me. Canasa seems to make me worse.


Sharann
Veteran Member


Date Joined Sep 2005
Total Posts : 778
   Posted 4/1/2008 10:51 PM (GMT -6)   
I was told to see a surgeon the first time I met one of my MANY incompetent GI docs. She said you will be cured of your UC if you take your colon out. Well, 3 months later I was confirmed to have CD by a pillcam. So glad I didn't have surgery.
IF you don;t feel "sick enough" fo a colectomy, then you are right!
I didn't either and I am glad. I have never really had much luck with meds but sometimes you have to try them.
I think you should consider Remicade if the enemas and 6MP do not work. The problem with the disease is that it CAN progress and get alot worse over time. Or not. Unfortunately you don't want to wait and find out for too long.
Well, ultimately it is your choice. The docs don't always know what to do so they give up. Then you need to try another doc. It is frustrating at best but perhaps the appt you cancelled would have something new to try. You never know and do not give up!
I am a Certified Doxie Lover(Weinerdogs)


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 4/2/2008 8:00 AM (GMT -6)   
JSanders505-I have heard of fecal bactiotherapy but don't know of anyone in MI that I could go to for it. I get c.diff every year or year and a half and it's what initially started my trail down the UC path. Funny thing is that I was never on an antibiotic so I have no clue how I ended up w/c.diff to begin with. Have you done the fecal bactiotherapy?

NuffinButtTrouble-I don't really believe that diet effects me personally.

Julee70-My doctor has me doing 2 steroid enemas a day. I just started them on Monday. I'm doing one around lunch time and one before bed. Sometimes I can keep them in, sometimes I can't. I usally end up wasting one a day because I can't retain it. I keep trying though...anything to prevent surgery..lol.

Sharann-The day I was diagnosed (5 years ago) my GI told me I should have surgery. I haven't had much luck w/the meds either. It's kind of hit or miss. For the most part I usually feel really good but I know I'm not healthy when I'm bleeding for months on end. In all honesty, I'd rather have surgery over Remicade though. Oh, and the appt. I canceled was with the surgeon, not the GI so I wasn't worried about missing out on something new to try. The only thing new they'd suggest is surgey since they are the surgeon. The stress of meeting them was just too much for me and I found it in my best interest to not meet with them at this time.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 4/2/2008 8:07 AM (GMT -6)   
The problem with UC is that the drug protocol is limited and it appears you have tried all medical treatments with the exception of Remicade. It's a tough balancing act; I can understand your hesitation with taking Remicade (I wouldn't wanted to have taken it either) but on the same hand your risk for colon cancer increases dramatically if you aren't able to keep the inflammation down. So, maybe you should look at some alternative treatments to complement what you are doing?

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998

1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics

2000 lost all my B-12 stores and became anemic

2001 opted for j-pouch surgery- now living life med-free


mbx5
Regular Member


Date Joined Sep 2007
Total Posts : 365
   Posted 4/2/2008 8:15 AM (GMT -6)   
that is where i am at. i have had uc for 14 years now and have been pretty much non-responsive to most meds... i have never really experienced a full remission w/o any symptoms in that time frame....basically i have had inflammation for a long time. i am sure my colon cancer risk has multiplied exponentially although i am still hesitant to have my colon out. colons are there for a reason and i dont like the thought of having it removed at this point.

unfortunately i am at the point where i will need to have a try with remicade. i am meeting my gi next week to discuss. i am hesitant to take a drug like that but my options are remicade or surgery, or risking cancer.

i too have been through a handfull of gi docs. one recommended surgery right away. this was 10 years ago. unless faced with imminent death i will not elect for surgery.
33 yr old male. UC for 14 years. 5mg pred (tapering off), 12 pills Asacol per day, Dicyclomine (for cramps), 0.5 - 1mg Atavan per day (anxiety), Fish oil pills, Culturelle probiotics. Recent Endonasal brain surgery to remove non-cancerous hormone producing tumor on pituitary gland (And I am still more afraid of my UC!!)


me,too
Regular Member


Date Joined Mar 2007
Total Posts : 97
   Posted 4/4/2008 11:43 AM (GMT -6)   
the thing that almost killed me was something that my original doctor never considered: cytomegalovirus. it makes your symptoms worse if it gets activated in your gut. i had to get a second opinion colonoscopy months later to find this out. when i went for my second opinion consultation, my new dr said the right thing: i don't know enough about you to know how to treat you. she said before drs start recommending remicade or prednisone, they really need to rule out infections. part of my treatment involved consulting with a infectious diseases dr who managed the CMV, while the GI managed the colitis. i also consult with an alternative dr.
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