This is going way too fast! Totally disoriented!

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PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/5/2009 8:37 AM (GMT -6)   
 I am currently having solumedrol injections twice daily while starting imuran (started 5 days ago) (still on mezavant too) and the cortisone is not really helping , I still have diarrhea +- 15 x daily and some blood. Got my blood tests results this morning and my inflammation level is 3x higher than normal. My GI decided to admit me to the hospital so I can have Remicade infusions... So it means I'm gonna be on Mezavant, Imuran AND Remicade , plus Solumedrol injections... He wants to try Remicade and if it doesn't work i'm being shipped to Montreal for a colectomy!!! I think this is going way too fast!!! I have been diagnosed in March!!! I don't know what to think , can't I decide to have the operation or not or it's all in my GI's hands??? I am feeling like a guinea pig... Is it just me or this is way too much stuff at the same time???


Diagnosed with severe pancolitis 03/09
Solumedrol infusions twice daily, Mezavant 4.6g, Imuran 100mg
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg, Zopiclone 5 mg for anxiety (since 2003)
 


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 5/5/2009 9:02 AM (GMT -6)   
Hey Pink

I am extremely distressed to hear about your pain and falling health. Why don't you take a second opinion. I have heard that Cleveland Clinic is supposed to be the best for Gastro Intestinal Diseases. In case you have access to the same, you must take second opinion without any delay.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


Eva Lou
Veteran Member


Date Joined Sep 2006
Total Posts : 3442
   Posted 5/5/2009 9:03 AM (GMT -6)   
of course the final choice is yours- it sounds as if he's being quite aggressive. The thing is, if the Remicade doesn't help you, there really isn't any other medical option for you- possibly Humira. The fact that you are on IV steroids & seeing no improvement doesn't bode well. The Remicade may do wonders- give it a try. But in the end, you have the final say as to whether or not you choose surgery- I'd just make sure you tell your GI your fears & reservations now.

diagnosed with UC '02
meds-
Asacol- 8 tabs/day
Remicade-10mgs/kg- since 4/07
Imuran- 150mgs/day
various probiotics
Fiber supplement
 
 
 


suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 5/5/2009 9:08 AM (GMT -6)   
My best jpouch friend only had UC for 3 weeks before she had surgery. There are hundreds of folks in the same position. The point is that 30% of UC patients will lose their colon and there is no time frame on that. I have met UCers who had the disease for 25+ years who lost their colons and UCers who have had the disease as little as a week and lost their colon. You probably don't find that too reassuring but I want you to know that your situation is not unique. Some cases are just virulent.

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


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 5/5/2009 9:14 AM (GMT -6)   
I'm sorry that you are having such a struggle getting your UC under control. I hope that Remicade works for you, but if it doesn't, and you have to have surgery, just remember that there are lots of people like Sue who are living life normally with a jpouch!
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, Culturelle probiotic, and Zoloft (25 mg).


kops2da
Veteran Member


Date Joined Jun 2008
Total Posts : 2865
   Posted 5/5/2009 9:29 AM (GMT -6)   

Second opinion for sure!  Be sure what can and can't be done to help you.  Surgery is not the end of the world or life but you need to be sure it is necessary and you can handle everything that goes along with it.

ElaineNY


 
Senior - New diagnosed with proctosigmoiditis - 6/2008   Tried, Colozal, steroid enemas, etc. - started working but severe side effects occurred. No mesalamines!!
Started on prednisone Feb.7, 2009 - tapering to 20 mg. - upped prenisone to 25mg. on my own (bleeding returned) - 6MP - 50 mg. 2/28/2009 
75mg. 6 MP added on 4/8/2009 - waiting for CBC and Prometheus tests
Probiotic Align, Prilosec for GERD, Gas-X, vitamins, Calcium/D
Tylenol for knees and arthritis.
 
 
 


PinkPaperclip
Regular Member


Date Joined Mar 2009
Total Posts : 108
   Posted 5/5/2009 9:32 AM (GMT -6)   
Thanks a lot for you support it does make me feel better. I don't really have the energy or the ressources to get a second opinion around here. I trust my GI and he's got a lot of experience in the field, plus he's the type of person who won't tolerate to see you suffer for a long period of time, maybe that's why he's acting fast.

It's reassuring to know that I am not the only one in this situation.. I thought that normality was to try treatments for at least a year before thinking of a colectomy! The Jpouch sounds like a good solution for me, Just the fact that I would not have to take anti inflammatory meds or immunosuppressants everyday is very appealing...
I will have more time with my GI later today , when I get my room at the hospital I will tell him how I feel.

Maybe Remicade will work, but again do I want to use Remicade for the rest of my life..? I am not used to make big decisions like this...
Diagnosed with severe pancolitis 03/09
Solumedrol infusions twice daily, Mezavant 4.6g, Imuran 100mg
Mulitivitamin, calcium supplements, probiotics
Seroquel 12.5mg, Paxil 10 mg, Zopiclone 5 mg for anxiety (since 2003)
 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1914
   Posted 5/5/2009 9:45 AM (GMT -6)   
Bless your heart, it sounds like you feel pretty bad right now. I hope they give the medicine some time to work and it does take time to heal. The decision is yours. God bless, sounds like you have a lot of people on this board thinking and praying for you.
diagnosed 1/09 with colitis,54 yo, colazal, fish oil, synthroid, cymbalta


mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/5/2009 12:50 PM (GMT -6)   
My son was diagnosed 10 months ago and we are already looking at surgery - he has failed with steroids, 6mp and after 4 Remicade treatments, that is failing, too. We have tried diet, acupuncture, etc, etc.  It sounds like you, too,  have what they call a runaway case. My son is now at Mt Sinai in NYC and the care has been great - they really understand the disease. We are consulting with surgeons because the only thing left for him is cyclosporin, which is a miserable drug that at best (if it works) will only give him 6 to 8 months. I only share this with you to let you know that you are not the only one out there who is having this experience. Many get this disease totally out of nowhere and not everyone can get it under control no matter how hard they try.  Get at least one other opinion and make sure you are with docs you feel confident about. There are many places that know nothing about treating this illness even though they might be great at treating other diseases. As I said, we are at Mt sinai right now and I have also heard that the cleveland clinic is great. Good luck - having watched my son these past 10 months, I really do feel your pain. I hope you get better soon.

AnnaG
Regular Member


Date Joined Apr 2008
Total Posts : 191
   Posted 5/5/2009 4:32 PM (GMT -6)   
I totally understand where you both are,I was in exactly the same place,after only nine months with uc,I'm wishing you all,the best if you go ahead with the surgery I opted for cyclosporin even though they told me it only had a small chance of working and that it would delay surgery for six months at best,well its been nearly two years now and although I have not acheived full remmission,it has not been bad enough to force the decision of surgery either which has consequently left me in a sort of no-mans land knowing that I will probably have too have surgery at some point,it has given me more time to make a decision, and come to some understanding,but I still can't decide.
Go for the cyclosporin if you want more time,to think and your feeling everything is moving too fast.
goodluck if you go for the surgery,at least you've made the decision then and you can get on with the rest of your life wden its done.

mamaluke
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/5/2009 4:38 PM (GMT -6)   
my son is getting the cyclosporin as i write this post - i hope it does some miracle work on him just to give him time to think - i'm glad that you were given the same opportunity. i really do wish you the very best and i will certainly get posting once my son has had the surgery if it helps others make a decision or just answers questions! got my fingers crossed for him right now.

Peety
Veteran Member


Date Joined Mar 2008
Total Posts : 2855
   Posted 5/5/2009 8:57 PM (GMT -6)   
How are you feeling? Are you in pain? Are your labs showing some special distress? It does seem aggressive.

I've had periods of going 15 times a day with much blood and not even called my doctor. about 8 times a day for me was normal and good, 20 or more was probably a flare. I would just start up some prednisone, rowasa, and hang in until it subsided.

But I'm happy about Remicade, it's working for me. Now I have to learn to behave normal.
49 year old female attorney, diagnosed UC/pancolitis 1985, no surgery but much suffering. Asacol/5ASA 6x400 mg maintenance for 20+ years; used prednisone & Rowasa for flares. 
August 2008 sought care of naturopathic doctor. Food sensitivity test showed wheat/gluten, other intolerances; eliminated wheat/gluten from my diet. Probiotics (Ultimate Flora, 50 billion). 
Bad flare in March, used prednisone. Humira denied, started Remicade 4/12 and doing great~ 


PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 5/5/2009 11:46 PM (GMT -6)   
I used to have 35 BMs a day, for almost 15 years, still I used to manage. But frankly speaking, it used to be a bit painful and miserable. At times I wish, I had opted for surgery a little earlier. May be it would have worked as the body was not infested with steroids. Good luck to you.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 

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