Am I being unreasonable

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tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 8/31/2008 7:39 AM (GMT -6)   
Am I being unreasonable, I don't know. 
 
When I am in a flare I go maybe 8 times per day with urgency, maybe once during the night. I have a lot of pain throughout the day and have very little energy.
 
When I am on pred to get me over a flare up I have one solid BM per day without pain and feel great, normal again like before I had UC.
 
After I am off the pred and in between flares I wake up in the am and the pain starts I go to the bathroom and am relieved off the pain.  I go anything between 2 - 4 times per day. Loose BM's no blood, sometimes urgency but sometimes not and I can function pretty much normally.
 
My doctor started me on Azathioprine but I haven't noticed any difference. I was thinking that taking this scary drug I would at least see some benefits and thought I would feel like I do when on pred but I am back to the 2 - 4 times per day. Should I have to just deal with this, I just don't ever feel like I am in complete remission but I get the feeling that my doctor thinks I am a drama queen and to just get on with it. I just feel that when on pred and only having to go once per day with no pain then that must be complete remission but at all other times I am not in remission. At the moment I am on 2.5mg pred, aza and steroid enemas. 
 
I know there are people out there who are worse than me my brother was one of them, he was always in a severe flare and had to have surgery. He is now 100% healthy but I feel like I am just plodding along at maybe 70% fitness & always worrying about being ill again.
32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


LondonRed
Veteran Member


Date Joined Oct 2007
Total Posts : 1190
   Posted 8/31/2008 7:42 AM (GMT -6)   
Why take the Azathioprine if you no better than before?

Diagnosis Oct 07 and then Aug 08: 2 Patches of Mild Chrohn's Colitis (unconfirmed)
Medication: 4000mg Pentasa a day, 5mg Clipper Steroid (Beclometasone dipropionate)


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 8/31/2008 7:51 AM (GMT -6)   
Because my doctor said that he thinks it is working and that I have managed to get down to a low dose of pred.  I feel he doesn't listen to me as I said to him on my last visit I am no better than I was before -  meaning - before my flare up I was going 2 - 4 times per day then flared going 8 times per day pred and aza started back down to 1 Bm per day then tapered pred and back up to 2 - 4 times per day so no better than what I was before I started aza.  But he replied with "you were going 8 time per day so you are better"!!!
And he advised to start enemas and to stay on pred 2.5mg until next visit in 7 weeks. Now been using enemas for 2 weeks and no change in symptoms. See him again in 5 weeks time and think I will challenge him on the whole aza thing.
32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


sweetmelody
Veteran Member


Date Joined Aug 2007
Total Posts : 650
   Posted 8/31/2008 9:46 AM (GMT -6)   
okay for him to justify you being better by the fact that you went 8 times a day is freakin ridiculous.

If he doesn't listen to you and isn't helping you the way he should... you need to find another GI. I honestly think 4 months is a little too long to be on a drug that isn't helping you.

You're definitely not being unreasonable and I'm sorry you're going through that with your dr.
Kara, 21F Married.
Diagnosed March, 2007, but was going through testing for a year before diagnosis.
Left Sided UC. Currently in a flare.
Medications:
Lialda - 4 pills in the morning w/ food.
Steroid Enemas


jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/31/2008 10:24 AM (GMT -6)   
The goal of Azathioprine is usually to allow you to get of Prednisone before it rots your bones, gives you cataracts and diabetes. It sounds as if you're better than you were when the flare started, but still flaring. However, remember it can take up to six months for the immunosuppressants to fully take effect. If you don't think it's helping enough, though, there are other alternatives available. Just remember, even though the Pred makes you feel better, it will do irreversible damage if you take it for too long.
Judy - Southern US 
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Sara14
Veteran Member


Date Joined Mar 2007
Total Posts : 4034
   Posted 8/31/2008 11:13 AM (GMT -6)   
I'm in a similar predicament. Before I was on any meds, my symptoms were really severe, but I can't seem to reach a full remission with the Asacol and Rowasa/Canasa, even though they've helped tremendously. I still go between 2-5 times a day with a little urgency and no blood most of the time. My GI said azathioprine would be the next step but he said he thought the risks of the med. outweighed the risks of being mildly inflamed and suffering the mild symptoms I have on a day to day basis. I guess my situation is different than yours though because I'm not on pred and never have been.
Diagnosed with UC March 2007; Asacol 4 tablets 3x/day; Rowasa nightly; Canasa weekly; Viactiv; Metamucil wafers; multivitamin


burnabygirl
Regular Member


Date Joined Jun 2008
Total Posts : 205
   Posted 8/31/2008 11:51 PM (GMT -6)   
tums,
We are in the same boat. I don't think you are unreasonable.
I started Azathioprine before I was completely off Prednisone (which I had for 3.5 months). When I was on Prednisone I felt great. It's a miracle drug for me and it's the first time I used it.

I saw blood again 2 weeks after I was off Prednisone. I have been taking Aza for 2 months now but the bleeding went on. And I think the probiotics and Metamucil tablets ease off my urgency and Ds, not the Aza.
I have told my doctor that I didn't want to start Aza but she said I should give it a try. Now I'm really lost.
When I told her over the phone last week that I was still bleeding but it wasn't worse than before, she said, "That's good. Let's wait and see."
But the fact is I want to feel better. At least, no more bleeding.

By the way, I miss the days when I was on Prednisone. I could eat anything I wanted--ice cream, nuts, fruits... Without those ice cream and nuts I would never have gained back the 8 lbs I lost during those bad days of Ds. (I weighed only 98 lbs. pre-UC.)
Ulcerative proctitis diagnosed in July 2006. Medications: Salofalk enema nightly.
Remission from Nov 2006 to Oct 2007. Then a bad cold and a bad flare till the present.
Pancolitis diagnosed in April 2008. Current medications: Salofalk enema/suppository, Salofalk tablets 500mg x 3/day, Azathioprine 75 mg. Warfarin for my Deep Vein Thrombosis which resulted from diarrheas and dehydration in Feb 2008.
Supplements: Probiotics, Calcium with Vitamin D, Vitamin B Complex, Vitamin C and psyllium capsule (Metamucil)

Post Edited (burnabygirl) : 8/31/2008 11:54:15 PM (GMT-6)


Lucky777
Regular Member


Date Joined Aug 2008
Total Posts : 128
   Posted 9/1/2008 12:09 PM (GMT -6)   
Pred was absolutely worthless for me, and I was on it for about 5 months. No change in symptoms, but Azathioprine seems to be doing 'something'.

Steroids don't work for everyone. Obviously for tums, they are a lifesaver. Wish they worked as well for me. Remicade here I come.
Sean - 31

UC Since April 2006, diagnosed 2007 (Flex-Sig)
4 x Liada (2 am 2 pm)
175mg Azathioprine
2 x Imodium
Remicade consult scheduled


beartooth
Veteran Member


Date Joined Dec 2006
Total Posts : 517
   Posted 9/2/2008 1:53 AM (GMT -6)   
The hardest thing to find is a doctor who not only takes our inllness seriously, but also listens to what we say, because it is our body that is suffering. I've had four GI docs, and I finally found a winner. If you're current doc isn't hearing what you are saying, maybe it is time to find a doctor who will listen. I know it is difficult to change docs, especially after you've gone through so much with him/her, but you are the best expert on what makes you feel better/worse, and if your doctor doesn't agree with that, move on.

You deserve better.
Brandon
 
Diagnosed w/ moderate UC in May '06, had symptoms for years prior to dx - currently flaring
Suffered from depression since I was 19
Taking Asacol, Florastor, VSL#3, Wellbutrin XL, Prozac, multi-vitamin, and fexofenadine for allergies


tums
Regular Member


Date Joined Apr 2008
Total Posts : 128
   Posted 9/2/2008 4:28 AM (GMT -6)   

My relationship with my doctor goes up and down. Mostly when I am well relationship on the up and when ill - on the down side - hmmmm!

I live in the uk and don't know how to go about changing doctors, would probably have to go to another hospital but not sure how to go about referral. And although I have ups and downs with doc, sometimes think he doesn't get me I do feel comfortable talking with him which I suppose is a bonus. Will see what the next visit holds.

Thanks all for your replies makes me feel better that I am not expecting too much. Oh and having a good day today so thats a bonus - my house has never looked so clean!!!


32 year old female
UC diagnosed 2001
Asacol 6 per day
Azathioprine 100mg started 4/08
Steroids 5mg per day


UCinGV
Regular Member


Date Joined Mar 2007
Total Posts : 394
   Posted 9/2/2008 1:31 PM (GMT -6)   
It took me around 2 months to get the full benefit of azathioprine, and it is a HUGE help for me. So give it some time before deciding you don't want it.
12 Asacol
100 mg Imuran


mh53mike
Regular Member


Date Joined Aug 2008
Total Posts : 149
   Posted 9/2/2008 7:56 PM (GMT -6)   
Like Judy said azathioprine can take up to 6 months to come into swing, so if it isnt hurting you i would stay on it...because whats your alternative? Surgery? Wouldnt you want to try to see if it can be controlled with meds first? I know i would.
26y old male med disharge veteran
 
Diagnosed with UC (lower proctitis) in 2004
Current daily treatment:
1000mg sup asacol
2400mg oral asacol
40mg prednisone
75mg azathioprine
20mg Nexum
 
Still 4-5 bloody, mucus bowel movents a day! Blah...


pupluv
Regular Member


Date Joined May 2007
Total Posts : 256
   Posted 9/2/2008 10:13 PM (GMT -6)   
i've been on Aza for over a year now. It took at least 5 mos for it to kick in. I still flare up, but not so frequent and the severity of the flare up is so much less. So, I am doing much better than I was before. Since you have already started the Aza, just hang it there and make sure you get your blood work done.
Good Luck and Health
Donna
Donna
Diagnosed with indeterminate colitis in 1992
current meds
4 asacol 3x's a day
Azathioprine
Rowasa enemas as needed
VSL3
Bunches of vitamins


marty1976
Veteran Member


Date Joined Nov 2005
Total Posts : 2045
   Posted 9/3/2008 12:52 AM (GMT -6)   
I would wait too and give it another little while before you decide what your next step is going to be.
healing vibes heading to you
Marty
                                     keep the faith 

         asacol/proctifoam/
Zoton (lansoprazole)/pred/colofac


       
                   http://www.myspace.com/martylogue

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