Back again for some advice

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 3/24/2009 12:08 PM (GMT -6)   
Three months ago my GI started me on Imuran and told me to start taking 8 imodium a day to help slow the colon down, he wanted me on the imodium because my family doctor had started me on oxy cotins to help with the cramping and to slow down the colon as well ( I was up at the hospital pretty well every day because of the pain that came with the cramping and I could barely get out of bed )

Now, my GI told me the Imuran takes about 6 months to a year to gain full effect. I know it's only three months but in all honesty the only difference I've noticed is there is no longer blood in my stool but it's changed to a black color. My family doctor said I've still got the ulcers but because of the imodium it is just soaking into the stool instead of coming out (My family doctor hates the Imuran and imodium by the way) Even though I still rush to the bathroom 10-20 times a day.

I'm also still on prednisone, it's almost two years and my GI told me I may have a disease related to long term use of steroids and wrote down on my chart that gets sent to my family doctor to check me for it (I couldn't make it out) because of "steroid abuse" I felt like *****ing my GI out when I read that. I never choose to be put on prednisone, I've tried several times to get off of it and I've ended up in the hospital four times because of it. My family doctor has told me to recommend another immune surpressent steroid to help me get off the prednisone but when I told my GI he told me straight out "Who's the doctor here?" I've also grown cataracks because of it and my 20/20 vision is now around 13/15 which depresses the hell out of me every day.

I get to see my GI on friday and would really like to try remicade instead of waiting a year for a pill to kick in that I don't think is going to work. I've also started to notice a sharp pain on my left side that shoots across mid stomach. My family doctor told me it could be my pancreas from the Imuran and has written letters to my GI about it and the GI responded that it's normal to have it flare in the first few months. My GI also wants me off the oxy's as soon as possible but I don't want to be off them. My darn bones hurt like hell, every days a darn struggle to get out of bed and I feel those are the only things that make it possible to get out of the house. I recently had a bone scan done and my family doctor told me I have the bones of a sixty year old man already (I'm not even twenty yet)


I don't know what to really do, I feel as if I'm stuck between my GI and my family doctor. My family doctor is a great guy and wants to help me but is basically stuck down by the GI just cause he's above him in the "System"

Also on a side note, I learned a few weeks back I have about four kidney stones and since then I've sort of been wetting myself a little bit, not much but just dribbles. Is this normal?

Thanks for reading my long post as I go back and read it I see I sort of rambled there. But thank you for any advice guys and gals.

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/24/2009 1:19 PM (GMT -6)   
Can you find another GI? IMO, one that would let you be on prednisone that long is irresponsible. My GI said that he won't allow me to be on it for longer that 3-4 months at a time, and that if I keep having flares, he won't keep prescribing it to pull me out of them. He actually said that if I end up not staying in remission using the 5ASAs, that he'd like me to consider going straight to Remicade, as new research suggests it's better to do that than to use the immune suppressants like 6MP and azathriopine.

But, do remember that you are your own best advocate! You have every right to stand up to your doctor!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Christine1946
Veteran Member


Date Joined Aug 2008
Total Posts : 5975
   Posted 3/24/2009 1:31 PM (GMT -6)   
     I'm with Fruitgirl on this one.  I would try to find another GI doctor.  I was on prednisone last year for seven months.  My GI doctor was having hissy fits but every time I was weaned off, within two weeks I was flaring again.  He put me back on the 6MP at the end of the summer but it took till the end of October before it kicked in with the prednisone.  The last round of prednisone he advised starting at 40 mgm with a 10 mgm per week taper until the last week 5 mgm.  This finally did the trick.
     I now suffer with osteoporosis due to so much steroid use over the last ten years but the prednisone is the only drug which helps me achieve remission...unfortunately.
62 yr old granny. South Jersey
Diagnosed with ulcerative proctitis in 1998 in hospital
Hospitalized (2nd time) in May 2008
Update 11/03/08...finally in remission!!  Hope I don't jinx myself.  Off the prednisone since 11/01/08...now see if I can stay off for longer than two weeks.  Other meds: 6MP (75 mgm), colazal (6 per day), Benicar and Toprol (high blood pressure meds), Probiotic (2 per day), fish oil capsule and multi-vitamin and calcium with vitamin D.


bb224
Regular Member


Date Joined Jun 2008
Total Posts : 33
   Posted 3/24/2009 1:40 PM (GMT -6)   
This is the second GI I've seen, both my old one and my new one work together in the same office so it's really crappy for me. The nearest other GI would be a five hour travel away but it may be worth it I'm starting to think...Friday should I really press the remicade issue? I've heard some wonders about it working in the first infusion but also some negatives and I always seem to be prone to the side effects. I just am sick of this as I said earlier I'm not even twenty and it feels like my life is over :'( First on the methotrex was on that for a year to get the full effect and now imuran a year for full effect im just tired of waiting and waiting

fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 3/24/2009 1:50 PM (GMT -6)   
Uuugh, that stinks your next closest GI is five hours away...where do you live? Just curious!

At any rate, if you think you're ready to try Remicade, definitely push him on it!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Eased for ~3 weeks in December, possibly b/c of probiotic use?
Returned in January 2009 (with a vengeance), diagnosed with pancolitis on January 30.
Currently taking Asacol (400mg 4 pills 3x daily), Rowasa nightly, 40mg 30mg of Prednisone (quick taper), Culturelle probiotic, and Zoloft (25 mg).


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 3/24/2009 1:59 PM (GMT -6)   
bb224, I would definitely recommend getting a second opinion from another GI specialist, at another practice.

There are a lot of good doctors out there, and unfortunately some bad ones too, so a second opinion can give you some peace of mind about whether you're pursuing the best options; especially since your GI specialist and family doctor don't agree on some of your treatments.

I have had check-ups with 4 different GI specialists (and in different countries) and though they all offered somewhat similar basic options (asacol, canasa, cortifoam), they had significant differences of opinion on prednisone, imuran/azathioprine, remicade, supplements, diet. I was told that Imuran should have an effect in 3 months, and at the most 6 months.

I haven't heard about taking 8 imodium a day till imuran kicks in - and you're still going 10-20 times a day. From what I know, if your diet has not changed much then consistently dark/black stool can be caused by blood in the stool, so you're right that the blood just might be getting soaked into the stool instead, and that's why it's not visible.
I'm not sure about the kidney stones, but hopefully someone else can offer advice on that.

You're very young so I know it can be harder to question the authority of your doctors but I would recommend that you get a second opinion, speak openly to your GI specialist about all your concerns...and stay strong!
Rio, 33 year old male. Diagnosed with UC in 2006
100 mg Azathioprine, 4800 mg Asacol
VSL#3 x 3 times a day, Metamucil wafers
Vitamin E enema or Mesacol/Asacol enema at least once a week
Spinach & sunflower seed diet

Post Edited (Rio in Maryland) : 3/24/2009 1:02:05 PM (GMT-6)


Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 3/24/2009 2:10 PM (GMT -6)   
Eight immodium a day! That would cause me great discomfort -- pain! -- and is the craziest thing I've every heard.
Two years on steroids is equally outragious. Oxycotin?? You should not mask the pain and symptoms, you need to get healed. You need to consult with someone else.

Isn't 13/15 better than 20/20 eyesight? Sorry, your story is a bit confusing.


49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; use prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated all wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion), trying Curamin. 
Flaring, seasonal? or supplements too harsh? Back on prednisone, down to 10 mg. Waiting for insurance decison on Humira... 

Post Edited (Peety) : 3/24/2009 1:54:16 PM (GMT-6)


fargman
Regular Member


Date Joined Dec 2008
Total Posts : 74
   Posted 3/24/2009 2:24 PM (GMT -6)   
I agree with everyone, get a new doctor if you can. 5 hour trip or not, he is not doing your body any favors keeping you on prednisone for 2 years, making you take 8 Immodium a day, and giving you oxycotin. Wow.
Diagnosed '93. 
 
Asacol, Prednisone, Remicade, Imuran
 


ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 3/24/2009 3:23 PM (GMT -6)   

I'm going to go with the general consensus here and say you need to find a new GI!!!!!

First of all as you know prednisone can be extremely dangerous to stay on for that long... After being off and on every few months for 5 years, I developed the beginnings of osteoporosis at age 19, I now have to wear glasses all the time, and I have arthritis. I also had lots of troubles with my potassium and sodium levels on it as well. You should get off of it as soon as possible.

Secondly, it's dangerous to take drugs like oxycontin with Immodium because it can slow down your bowels so much that you develop a condition called Toxic Megacolon, which we are susceptible as it is with having UC. It doesn't sound like your GI really understands what he's doing and he's really putting you at risk.

I would definitely push for the Remicade as well, I was having TERRIBLE bone/joint pain but after my first infusion it went away completely and hasn't come back since


Female, 23, Ulcerative colitis (pancolitis) since 1999; GERD; gastritis; osteopenia in femur head & lumbar spine from long term prednisone use...

Current Meds:
3rd Remicade infusion 3/19/09

New Topic Post Reply Printable Version
Forum Information
Currently it is Saturday, September 22, 2018 4:22 PM (GMT -6)
There are a total of 3,005,725 posts in 329,256 threads.
View Active Threads


Who's Online
This forum has 161800 registered members. Please welcome our newest member, Envsciguy.
281 Guest(s), 8 Registered Member(s) are currently online.  Details
Mind body spirit, bobmars, Vdang2k, lotsofbites, garyi, straydog, (Seashell), WV Mike