Trouble reaching remission. Is doctor going too far?

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BrianofMD
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 6/28/2008 2:39 PM (GMT -6)   
Its been a month on 40mg of Prednisone a day. I saw some improvement in the beginning but it seems to be getting worse each day. I called up my doctor yesterday and he wants me to come in for a Sigmoscopy. He says he doesnt want me to suffer long time at my age so he will see if I need remicade or Surgery. Ive only had UC for about 2 years. He was pondering imuran earlier this month but he doesn't seem to want to go there and just shoot to the strong stuff.

I also recently switched from Colazal to lialda. this might be a factor if Lialda isnt working and slowing things down. The steroids helped my bowl movements early on but recently its all night long constantly waking up. I want to get better. Im struggling with my weight and am under considerably.

On a side note. Has anyone ever experienced better healing with fast/junk food? Most the time on my last flares I would eat fatty and greasy foods to fill my colon and make my poops harder. It didnt seem to work untill earlier today when 5 taco bell tacos came out with little blood. Still diarrhea though.

pb4
Elite Member


Date Joined Feb 2004
Total Posts : 20577
   Posted 6/28/2008 4:12 PM (GMT -6)   
Surgery is generally the last resort and imuran is typically used before considering humira or remicade, it does seem like your GI is jumping the gun but then I don't know how severe your disease is and he does...you could certainly get another doctors opinion, I would if I wasn't comfortable with my GI's aproach.

Generally eating fast-foods, junk-foods, animal fat, caffiene and sugar exacerbates symptoms of IBD...I would tread cautiously eating the way you are.

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


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/28/2008 4:41 PM (GMT -6)   

Only you will know what is right to do, so follow your instincts and information you gather. And be sure to talk with family/friends about all the details, it will help give you clarity. And yes, commonly it is Imuran, then Remicade, then Humira (depending on your reaction to remicade) then surgery. That was how my medicine flow went - humira was my last chance medicine.  The thing is that this process took me about 7 years to go through all the medicines, and I was just getting sicker and older, but I was trying all the medicines so there wasn't any surgery regret. Now, in retrospect I realized the doctors were really just going through the medicines b/c I had to go through them, but I think in my case they all knew it was inevitable (4 opinions).  The other thing is that we have to be honest with ourselves when we are living predinisone dependent which for me I learned was: 40mg for a month, then a taper, then get sick again, then back on predinisone while I try the next new medicine, taper, get sick, etc......The longer you are on pred. the more tissue damage it could be doing and is probably the reason why drs. talk surgery when meds seem to be failing.

mark

http://ucstory.wordpress.com


bellski
Regular Member


Date Joined Apr 2008
Total Posts : 499
   Posted 6/28/2008 4:41 PM (GMT -6)   
If I were you, I would consider a second opinion, surgery is a last resort. If you want you can post a topic on here asking for dr. recommendations where you live. Good luck, Bellski
Lori (Bellski)-age 43 from Illinois
Diagnosed February 2008 with Ulcerative Proctitis,
Currently: mild symptoms / flare ?
Medications:  Asacol 400mg X 6, Cymbalta 20 mg X 1,         Canasax X 2 Vitamins:  Calcium 600 + D X 2, Centrum, Citrucel caplets, Probiotics
High fiber diet
"I thank God that  I found this website!"
 


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/28/2008 5:00 PM (GMT -6)   
This following webcast that was just on Colitis Health Talk, gets the doctors perspective on Whether to Wait for Surgery or Not. This may help you understand the full picture. It is really well done and objective, so they aren't saying you need surgery, just htat they explain the medicines and the process.

http://ucstory.wordpress.com/2008/06/23/discussion-on-to-wait-for-uc-surgery/

BrianofMD
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 6/28/2008 5:42 PM (GMT -6)   
I really think its too early for me surgery wise. This is the first time steroids have failed me completely. How long does imuran and/or Remicade usually take to return to normal BM's?
8:30am
-1.2 Gram Lialda x2
-40mg Prednisone
-Multivitamin, Calcium Supplement, Flora-Q Double Strength Probiotic


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/28/2008 6:14 PM (GMT -6)   
Yeah, its a long long process to decide on the "elective surgery" and if you think its too early then its likely too early. That was how I felt for many years, my doc told me at year 3 to have surgery and I waited to till year 7, so I hear you. And when we finally decided surgery was for me, it felt so right, so I do think people know (as much as we can).

Can't help you on the imuran and remi BM thing since they didn't work for me.

hang in there and clarity will come with time,
mark

neondream
Regular Member


Date Joined May 2008
Total Posts : 47
   Posted 6/28/2008 6:22 PM (GMT -6)   
I've been on 40mg of prednisone for a month as well, and I keep getting worse. Have you been on prednisone long term? I havent been without at least a small dosage for over a year and it just stopped working. It's so weird, and frustrating as you well know. I dont know if its the prednisone but I also get up every 1-2 hours every night to go the bathroom or just with terrible cramps. I havent had a good nights sleep in forever! I'm curious to know what the scope tells you because I am in a similar boat. I have a colonoscopy and endoscopy on tuesday, seems like I'll be going the remicade route as well. I dont know why your doc wouldnt offer you 6mp or Imuran, i took it for a little over a year and it really helped...I did eventually develop pancreatitis (boo), but I was in remission and it was great while it lasted. Oh and greasy foods are killer for me, I can treat myself sometimes when I'm having normal BMs, but in a flare it comes right back out.
20. Female. California.
Diagnosed left sided Ulcerative Colitis at 15, first symptoms at age 11.

Flaring! :(
40mg prednisone daily.
(reduced to 30mg, got worse. now taking 40mg going on 4 weeks )
Prevacid, Multi Vitamin, Digestive Advantage Chrons and Colitis, Iron Supplement

Allergic to- 6mp (gave me pancreatitis), Asacol


BrianofMD
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 6/28/2008 6:54 PM (GMT -6)   
My last remission was 8 months with only colazal 3x3 daily. I took a prednisone dose pack like usual to see if it worked. two failed. I have never been on pred long term and do not want to be. The highest dose i was on was for 50mgweek tapering 10mg a week. I too am praying for a good nights sleep one time. As a 17 year old in summer time, its just rough. Thank you flare-up on my graduation day...

Also is imuran a daily pill or is it like steroids where you taper off to just using a maintenance drug?
8:30am
-1.2 Gram Lialda x2
-40mg Prednisone
-Multivitamin, Calcium Supplement, Flora-Q Double Strength Probiotic


kim123
Veteran Member


Date Joined Jul 2006
Total Posts : 1201
   Posted 6/28/2008 7:50 PM (GMT -6)   
I have read of others (CrazyHarry) on the Crohn's board that were surgery-bound, only to try one more thing......... a radical diet change, The Maker's Diet, and are now living relatively symptom-free and feeling great, thoughts of surgery a thing of the past. Accordingly, they don't even miss the junk food they used to be addicted to. Others have been helped from following diets like the SCD. Have you tried anything like that yet? Now, I don't know the extent of your symptoms/disease, but for me, after skeptically changing my diet/lifestyle and beginning natural supplements like probiotics and antifungals, I am now symptom/med free. Quite obviously, I am not a doctor, don't know your condition, but speaking only for myself, I would certainly try all other avenues before heading for surgery. I'm so sorry you are sick. Don't give up hope! Everyone is different and has varying results with diet change, but you'll never know if it would work for you, unless you give it a try, I guess. Best to you...........

quincy
Elite Member


Date Joined May 2003
Total Posts : 30840
   Posted 6/29/2008 2:36 AM (GMT -6)   
uh, no mention of rectal meds....have they never been offered to you?
q
*Heather*Status: mini flare Dec 28... tapered to every 4th night
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol (6 daily) + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals/supplements 
~Probiotic 3(Natural Factors Protec) bedtime + 1 (Primadophilus Reuteri) occasionally
~multi-digestive enzymes as needed ....zymactive 3 - 5x daily
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


kb5
Veteran Member


Date Joined Jan 2007
Total Posts : 1015
   Posted 6/29/2008 9:55 AM (GMT -6)   
My GI also wanted to skip imuran and jumpt to remicade. His reason was that imuran can take 6 months to work and remicade ususally works faster. I personally think imuran is a more toxic drug than remicade. My body felt awful on it and it never made a difference. Remicade has worked really well for me.

I would still get a second opinion. A month of 40 seems like too long when it isn't working for you.
Kelly, 30

Left sided UC diagnosed 1/98 age 19, Pan colitis diagnosed 1/07
Currently on 4x3 Asacol, no more pred after two years!!!! Off imuran as remicade is working!
Prontonix once daily for acid reflux, zofran 8mg every six hours for nausea
Remicade started 3/1/08...just had 4th infusion


bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 6/29/2008 10:09 AM (GMT -6)   
Hmm, usually a GI will try Imuran or 6MP and then Remicade before thinking about surgery--or at least that's what my GI did. He didn't even bring up talking to a surgeon until my last appointment (even though I had brought it up in previous appts and he just dismissed it) when I said Remi wasn't helping much. However, if you listen to the webcast leemega posted, the doctor says to begin talking to a surgeon as a precaution when the first-line meds (I'm assuming 5-ASAs) fail.

I can't comment on how much Imuran will help b/c it only took two days of 6MP (which is similar to Imuran) for me to get side effects and have me hospitalized. I've had two Remi infusions so far--there have been a couple good days but the rest have been normal flare days. My GI says that if Remi doesn't work in a week or so (4 weeks since I started), surgery is going to become a definite option. My GI isn't willing to have me try Humira if Remi doesn't work since they're both very similar--so whether that's an option for you will depend on your GI.

I personally think your GI is jumping the gun, but it still wouldn't hurt to talk to a surgeon even if you decide on meds like Imuran and Remicade.
Female, Age 19, Dx w/ UC August 2007
9 Asacol, Rowasa1000 mg Canasa, Proctofoam, Rifaximin 2/day
Digestive Advantage (Crohn's & Colitis), 1 Florastor, 50 mg 6MP,1 Primadophilus reuteri, 1 DanActive, Remicade (2nd infusion 06/26/08), 2.4 g Lialda


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 6/29/2008 11:29 AM (GMT -6)   
the remi took about two days to kick in for me, but only lasted a few months. As for immuran/6mp, in my opinion that is some evil stuff. Not just the cancer risk it has some bad side effects, at least for me. The pred is a quick fix, but that's all it should be, is a QUICK fix, you shouldn't be on that for along time. I was on it for way to long, and gained tons of weight i had all kinds of problems.

As for the junk food thing, before surgery, when i would get really really bad, pizza from little ceasers would always help clear me up, and in fact some of the only things i could eat without making it worse were fries, pizza, fried chicken fingers. A piece of fruit or a veggie would have sent me into a full flare.

Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 6/29/2008 3:46 PM (GMT -6)   
Here is the link to the webcast that ComedyDork mentions in her above post.  The doctor does explain the point at which GIs and patients should start the "surgery conversation" - doesn't mean surgery is needed, but that while medicines are being tried coping with the possible idea of surgery should begin.  It is actually a good approach b/c it will give those who have to have surgery time to cope with the idea:
 

BrianofMD
New Member


Date Joined Jun 2008
Total Posts : 14
   Posted 6/29/2008 10:01 PM (GMT -6)   
Tomorrow is my day. I bought a ulcerative Colitis Cookbook with low fiber diets. If remicade is my only option im gonna try to change my lifestyle completely to keep. My doc says imuran can take a few months to take a full effect. Surgery is my last option. I want to try herbal remedys but I have no idea where to start...
8:30am
-1.2 Gram Lialda x2
-40mg Prednisone
-Multivitamin, Calcium Supplement, Flora-Q Double Strength Probiotic
Symptoms since 15, diagnosed 16th birthday. Currently 17
status - Flare


Mark & Megan
Regular Member


Date Joined Jun 2008
Total Posts : 89
   Posted 7/1/2008 9:54 PM (GMT -6)   
Brian,
 
How did your doctors visit go? 
 
Also, I tried all sorts of alternative medicine, I discuss all my attempts in the following post. But the post also links to an article by the Mayo Clinic, and a Video on IBD and alterative treatment.
 
Surgery Photo & Journal below: http://ucstory.wordpress.com/
We are updating regularly it isn't just the surgery photos but info all about UC, Surgery and IBD!


jamo0001
Regular Member


Date Joined Apr 2007
Total Posts : 75
   Posted 7/1/2008 10:52 PM (GMT -6)   
I don't know how sick you are, so I can't really suggest anything, but Remicade started working for me within three or four days. I have no idea if that's typical.

I also will echo the Imuran comments. It takes months for it to start working, so that might be why your GI is skipping that step. If even steroids aren't helping, he/she might not want to wait that long to find a medicine that works for you.

Hope you feel better!
James

21 yrs old, diagnosed severe ulcerative pancolitis 2 Mar 2007
Hospitalized 27 Apr-5 May 2007
Asacol (mesalamine) 400 mg x 12 daily
Remicade <--first infusion on 3 May 2007; currently once every 5 weeks
Imuran (azathioprine) 50 mg x 2 daily
Eating fruits and vegetables like there is no tomorrow...


glamourgirl
Regular Member


Date Joined Apr 2008
Total Posts : 460
   Posted 7/2/2008 5:33 AM (GMT -6)   
How are you taking the 40 mg of Prednisone?  Are you taking it all at once, one time a day or twice a day?  I found that my body almost crashed when I took it once a day because when I was within a few hours of my next dose, I would get all my symptoms back. I started taking 10 mg. 4 times a day and it worked.  It kept the Prednisone constant in my system. I did this as I tapered too.  My doctor thought I was nuts (I guess they haven't heard this from other patients).  Anyway, I would give it a shot.  It could also be the Lialda giving you issues.  I've started Prednisone and a new medication at the same time and it made the Prednisone not work.  It seems like the "typical" UC meds like Asacol, Colozal, etc make me worse. 
 
I'm not surprised that your GI has suggested surgery.  The day I was diagnosed with UC, the idiot GI brought up surgery as an option.  Every doctor I've been to since has always brought up surgery.
Female, Age 37
 
Diagnosed w/c.diff 7/02 when pregnant w/1st and only child during 2nd trimester(wasn't on antibiotics)
C.diff flare within weeks of delivering baby 1/03
Diagnosed with UC 2/03
_____________________________________________________________
Current Meds:
75mg 6-MP
Entocort
Cortenema as needed
Ferrex Forte
Acidophillus
Sacchromyces Boulardii 


slimcook
Regular Member


Date Joined Sep 2007
Total Posts : 43
   Posted 7/2/2008 7:51 AM (GMT -6)   
Let me speak for Imuran. Several of you mentioned how awful it is. It changed my life, but it did take a combination of imuran/prednisone until the imuran started working and I could taper pred. Up to this point I have not had any side effects, but am closely watched via blood testing. In most cases the order is imuran than remicade. I always assumed remicade has more of a punch overall to the body then imuran...apparently it depends on your body.
Slimcook
dx:2003 Pancolitis
current meds:
Colazol 1500 TID, Imuran 100mg, Healthy Trinity Probiotic, Grape Seed Ext. Biotin, Vit. E., Selenium, Flax Oil, Calcium, Zinc and Emergen-C


jayce
Regular Member


Date Joined Nov 2007
Total Posts : 395
   Posted 7/2/2008 8:42 AM (GMT -6)   
i 'm not very experienced here as i'm the mom not te patient or the dr, but it seems like the rectal meds may be something for you to try, along with the colazal my daughters dr was very heavy on the rectal meds also other things listed below, but for now things are quiet for her,for the most part.
i think the combination bomb worked.but another opinion dr. might be good too
Mom to 19 year old daughter diagnosed 11/07.
colazal 3 x3 daily
purinethol 6mp=50mg daily
culturelle probiotic 1 daily
chewable vitamin
xifaxan antibiotic 400mg 2x day soon to be weaned

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