Avoiding my doctor

So I'm in a bit of a conundrum with how to proceed with my illness. I am a 34 year old female who was hospitalized and diagnosed with severe-pan colitis in Fall of 2008 and have not yet gone into remission. I've done several courses of prednisone but always start flaring when I get down to about 20 mg leading me to believe that I'm steroid resistant, not to mention the fact that the stuff makes me feel rotten in so many ways. I've been taking Imuran (100mg) and Asacol (3 tabs 3x/day) for about 8 months. My symptoms currently are lots of blood/mucus in the stool. Urgency only in the mornings for about 4-5 trips to the loo.

The last time I saw my GI was about 6 months ago and I was supposed to call him back if I was ready to start Remicade. I have never called him back as my symptoms seem 'manageable' to me compared to how I was previously. I really don't want to do remicade for some reason...maybe cancer risks, time commitment to treatment, possibility that it will fail...general anxiety about starting another med. It seems like Remicade is my only 'next' option. My question is should I go ahead an do the remicade. Is the bleeding that's been going on for so long doing irreparable harm to my poor colon? I know I probably need to have my blood tested for liver enzymes with the Imuran. I just feel so hopeless about going into remission that I don't even want to face my doctor. I don't know how to guide the conversation with him as I'm pretty sure he'll say that remicade is the only logical next step. Maybe I'm just in denial. Heck, I know I'm in denial! LOL Any words of advice from those who have been through all these treatments? I sure could use some perspective.

Although your symptoms might seem manageable, if you are in a chronic flare the inflammation can lead to changes in the cells resulting in at some point being dx with colon cancer. You really need a treatment plan that will get you in remission and stay there. I can understand your fears about Remicade but you need to ask yourself what you are willing to do. Continue doing nothing and have symptoms? Take Remicade and maybe go into a long remission? Or opt for surgery and be done with all of it?

I bled continuously for over 2 years. It resulted in chronic illness anemia and a loss of B-12 stores. But it was near the end of those 2 years that both losses were identified. UC is a disease of denial. I bet you rationalize how you feel to. I bet your quality of life is lower than you wish.

Sue

Hi -
I think "steroid dependent" might be the phrase you're looking for.

I think you ought to be able to call your GI and tell him you are pleased enough with your quality of life and refuse the Remicade. After all, it's your life, you should call the shots.

But I do think you should call your GI asap because it is my understanding that it's VERY important to have your liver enzymes tested on a regular basis. I've not been on Imuran (yet, anyway) but from reading what other folks on here have gone through, if your liver enzymes go whacky, your colon is not going to be your only problem!

Please call your GI. If you feel he wouldn't be open to your refusal of Remicade, maybe you need to find another GI - but I believe it's important that you need be tested while taking Imuran.

     I was on 6MP for over seven years.  While on it my doctor ordered monthly CBC's as this could cause a severe drop in the white count.  He also ordered liver and pancreatic enzyme level tests every other month.  My white count dropped to 1.6 after he increased my dosage from 50 to 100 mgm last summer.  My bilirubin was double the normal limit.  The doctor took me off the 6MP two weeks prior to starting Remicade.  After my 3rd infusion Remicade stopped working for me and I start Humira next week.

     I would not be afraid to go on Remicade.  The cancer risk is slight.  Heck, I know several people who suffer with Lymphoma and not one of them had taken an immunosuppressant before being diagnosed.

     I, too, am prednisone dependent and it is horrible!!  If Humira fails, and I am soooo hoping it will not, surgery will be my choice. 

     Please, please, call your GI doctor.  When I am flaring, my GI doctor sees me almost every week and is always in contact with me. 

     Good luck to you.

I'd suggest you ask for mesalamine enemas. He might suggest the suppositories, but they don't reach as high as the enemas do. There are also steroid-based enemas, but I'd try mesalamine first.

OK,
I'll call this afternoon and set up the blood work as well. I've been convinced! I told you I just needed some perspective. Sometimes I just feel like I'm in such a mental haze with this illness.

I totally agree for you to call your doctor and ask for the Rowasa enemas....NOT suppositories.

If you can use them successfully...it'd be a nice way to avoid the bigger gun meds..
Besides, it's believed that 5ASA meds help to prevent cancer in the colon.

q

Crazybug,  I think we are in the same boat.  I'm a 28 year old female diagonsed with severe pan-colitis in Feb 2009, hospitalized for 2 days and also have never been in remission :(  I'm on 6-MP kinda like Imuran and I would for sure have them check your liver.  They were wanting to bump me up to 100mg and when my doc ordered a prometheus test finding that dosage to be toxic to my liver.  I'm on 50mg of 6MP now.  I'm also on Remi and have had no response to it after 5 infusions and now they are wanting to start Humira.  I also seem to be steriod dependent, after completely coming off the roids I can't seem to eat anything without pain and bleeding. 

I came completely off the roids in Nov 2009 and couldn't eat because it was to painful. My doc did a flex sig and then put me on 60mg of pred. because the inflammation was so bad.  My second lengthy round of roids :(

What you might consider asking your doc about......I asked my doc about going into the hospital and putting me on bowel rest he said he had not had luck with UC patients who had tried it but I told him I really wanted to do it before I start talking surgery.  I now I'm sitting here in the hospital and after 3 days of IV fluids, and steroids and drinking water and some juice when my blood sugar was to low. I have been pain free for almost 4 days.  I did develop a C Diff infection and have been having D but NO pain and very very little bleeding.  I know the true test will come when I'm totally off the steriods. 

My diet I'm totally changing after talking to an alternative doctor.  He suggested I go to a liquid diet and any food I have should be the consistency of baby food for two to three weeks.  This doctor also did a blood sensitivity test and I'm going to avoid the foods on that list,(corn, gluten, dairy, etc)  I find it very tricky talking to medical doctors about this kind of thing because they can be easily offended and I am NO doctor. 

I wish I would have tried the bowel rest before beginning Remi but personally I would try the Remi before surgery.

I hope you find some answers.  I'm praying for you!!  Have them check your liver!  A great book to read The Great Physician by Jordin Rubin.