Cyclosporine is the last resort or bye bye colon

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benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/23/2008 6:19 PM (GMT -6)   
It has been a week in the hospital and after not responding to steroid therapy and other failed medications the doctor has decided to put me on cyclosporine along with a cocktail of antibacterial and antiviral and anti-inflammatory medications.  She said she is trying to save my colon from surgery.  She took a looksee and wrote in the findings "unrelenting colitis".  The cyclopsorine is a 7 day infusion and one of the most serious immunosuppressant modulator medications usually used for cancer or transplant patients.  I even have to be on the oncology floor becuase the medication is followed similarly to chemo protocol.  They took bioposies and it will be a couple of days before results are in.  She said my entire colon as far as she could see without proferating the bowel is diseased.  I can't believe I was only diagnosed 10 years ago and it has gotten this bad.  I am only 32 and the thought of living through these flares is a very frigthening forseeable future.  Needless to say, I will be in the hospital for Christmas this year.   I am a bit saddened by this but I am lucky enough that my little guys are too young to know when Christmas is.  We will have to postpone our festivities until I am home from the hospital.  I am crossing my fingers that this works.  I will be very anxious if this therapy does not kick it back into remission.  Keep your fingers crossed for me! 
Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 12/23/2008 6:57 PM (GMT -6)   
Best wishes to you for successful treatment. HW has at least 2 members posting whose colons have been saved by cyclosporine therapy at Mt. Sinai Hospital in NYC, KS1905 (Keith) & Malka. Hopefully, they will see your post & reply here. Good luck & hang in there! / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

ediekristen
Veteran Member


Date Joined Apr 2007
Total Posts : 1366
   Posted 12/23/2008 7:05 PM (GMT -6)   
Wow, that definitely doesn't sound fun :( I'm sorry to hear that. Is she watching kidney levels and whatnot? It's strange she's putting you on all of those at once but no prednisone, because if you look it up, it actually says taking cyclosporine with (specifically) sulfasalizine, anti-inflammatories, antibiotics and anti-virals, can all cause kidney damage, and that it is always to be used with adrenal corticosteroids.. It seems like a pretty aggressive course of action which could end up causing more harm than good. It also can not be used if you have any type of cancer or are on cancer drugs, so I'm wondering why she told you that as well.. I could be wrong though, I really hope it works for you!
Have you tried Remicade?? Why not try that before surgery? Or does your doctor not think it will work?

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

Current Meds:
Lexapro 10mg, Azasan 100mg

 
 


benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/23/2008 7:38 PM (GMT -6)   
ediekristen
 
The docs did not want to try remicade becuase they said that if my body does not respond to it and I stay in this unrelentless flare that it would be 6 weeks until they could consider using another immuno suppressor meds.  There is a longer life cycle of remicade.  Cyclosporine is a 24 hour life cycle out, methotrexate 3-4 days.  They wanted to have multiple options but by far the cyclosporine is the biggest gun for the current situation. They are measuring my urine output to make sure it is not damaging my kidneys.  They are doing labas around the clock.
 
Old Hat,
 
I hope it works for me like it did for them. 
 
 
Thanks for your comments
Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/23/2008 9:12 PM (GMT -6)   
I was in almost exactly your shoes: 33, had been sick for ten years, and was not looking forward to more of it. I had surgery in April. Today I ate when I felt like it and left my house whenever I felt like it and paid no attention to where the bathrooms were or whether there was anyone in them, which I was never able to do in the ten years before that. I feel completely well.

It pains me to hear about anyone feeling so hopeless and getting treatment this potentially damaging to so many other body systems for a disease that is this curable. (That is why I started thinking about surgery, actually, though my mental threshhold was crossed when I went on Prednisone.) Have you gotten a surgical consult while you've been hospitalized? Are you in a place with very experienced colorectal surgeons? That is by far the most important thing. If you've got questions about the surgery, feel free to post them. I'm thinking of you.

suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 12/23/2008 10:02 PM (GMT -6)   

I hope that the cyclosporine works for you but if not this is just to let you know that surgery is not a bad option!  I opted for it 7 years ago when 6mp was considered the last drug for UC.  It was a very difficult decision to make but I am glad that I took that route.  I am healthy, active, med-free and no longer had to worry about the next flare.  Like you I had 10 "good" years of UC, mostly in remission.  It was the last flare for me that I could never get under control.

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


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 12/23/2008 10:02 PM (GMT -6)   
God bless you and you're in my prayers...if you have to go the surgery route there's no more heavy meds and your liver will thank you I'm sure. I have no idea what the 8 Pentasa I take every day is doing to my liver. Hang in there and all will be well in time : ).
Moderate Pancolitis
Dx'd 05/2007
7 Pentasa per day (4/3)
Corti Foam p.m. 2X per week
Prebiotics and Probiotics, Bowel Soother, Fish Oil, Calcium, Multi Vitamin and Melatonin
Trying to reduce sugar in my diet but cannot tolerate artificial sweetners
I excersice daily
Did I happen to mention I HATE this disease!!!


subdued
Veteran Member


Date Joined Dec 2008
Total Posts : 3231
   Posted 12/24/2008 12:58 AM (GMT -6)   
Hi benjwl123,

I'm really sorry to hear about your situation. How bad has your Colitis been in the past? And how likely are you to have more flareups in the future?
Joy - 47 yrs and counting

Diagnosed w/ UC Dec 06

-------------------

Lexapro (for stress)
Probiotics (orally and up the but)
Vitamins (a whole bunch of them)
Anti-inflammatory foods: turmeric, seaweed, garlic...


benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 12/24/2008 6:29 PM (GMT -6)   
Subdued
 
I have been in a on and off flare for about 4 years.  This being the worst one to a close second about 3 years ago.  The doctor could not promise me that once she gets this under control how long it will be until the next flare.  If the cyclosporine works she will send me home with Methotrexate (another immune suppressant) as a maintenance medication for a long time. 
 
Charlotte and Suebear
 
I already got the surgical consult.  The GI doc agrees too that if this doesn't do the trick it is off to surgery for me.  I would love to say I am disease free and not live in fear of the next flare or what side effects or potential diseases I will contract from being on these Immuno supppressor drugs on a regular basis. 
 
 
bbc
 
Thanks for your prayers. 
 
All,
 
As for me I am in a waiting game.  I will know by Sunday if this medication kicked this flare to the curb.  I hope if it does I stay in remission for a long time.  But if I end up here agai,n I will definitly opt for the surgery.  There is only so much a body can take before your mind is made up about adding more poisions to control this trial and error disease.
Diagnosed with UC since 1999
Current Meds:
 
Sulfasalizine 500 mg tabs 2x's daily
Rowasa enema 2x's daily
Colocort Enema 1x daily
Prednisone during active flares
Imuran 6 months in 2006 (Joint Pain) Stopped
Florastor Probiotoic
Bentyl for cramping
 


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5190
   Posted 12/25/2008 6:09 PM (GMT -6)   
Hi, there! Hope you're starting to feel better. Probably you haven't heard from Keith or Malka because they're busy with normal routines, but you could likely read Keith's posts (KS1905) from his cyclosporine treatment last winter. As I recall, he took some oral cyclosporine for a while after discharge from hospital & then went back on 6MP. He always wrote very positively about his treatment. (He said that Dr. Daniel Present, his gastro's lead associate, calls cyclosporine "an A-bomb against UC".) Continuing best wishes ... / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

atlucgirl
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 12/27/2008 8:19 AM (GMT -6)   
I'm in the exact same situation. I've been in the hospital since December 16th. My GI started me off with a steroid drip for 6 days and then started cyclosporine. He told me that this is the last drug in line before surgery. Even the surgeon told me that she has never seen a patient that has taken cyclosprine before. She said that my GI was giving it everythin he had. I'm not sure what my expectation level should be as it relates to the symptoms. Bowel movements have decreased to 3-4 a day, mostly at night. My stool is very narrow-ribbony like. All the blood is gone but the GI never seems to be concerned with the blood. I experience awful cramping with my bm's. I'm worried that I'll just end up back here in a few months or years and then what. The surgery scares me but I know that it may be in my future. They are going to stop the IV drip today and switch me to oral cyclosporine and prednisone. I hope that the symptoms continue to subside and don't get worse.

nc_bri
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 12/27/2008 8:43 AM (GMT -6)   
Best wishes Benjwl123! It sounds like surgery might not be so bad if it comes to that, but I hope for the best either way!

nc_bri
Regular Member


Date Joined Dec 2008
Total Posts : 20
   Posted 12/27/2008 9:01 AM (GMT -6)   
And Charlotte, I definitely have surgery questions, as I've thought about it many times. I'm sure there's probably another thread with the answers, or a new one could be started, but I have so many questions as to what life is like after surgery. Such as- what type you had, how long it took to recover, how many bathroom trips a day afterwards, can you eat what you want, etc., etc.

Old Mike
Veteran Member


Date Joined Jan 2007
Total Posts : 3886
   Posted 12/27/2008 2:14 PM (GMT -6)   
Well good luck to all on the cyclo, my son had it back in 2000 did not work, but he is doing well with
a pouch for the last 8 years. His colon was destroyed in just 9 months after UC onset, I still have mine
28 years with UC, go figure.
Old Mike

Charlotte Gilman
Regular Member


Date Joined May 2008
Total Posts : 100
   Posted 12/27/2008 7:58 PM (GMT -6)   
nc_bri said...
And Charlotte, I definitely have surgery questions, as I've thought about it many times. I'm sure there's probably another thread with the answers, or a new one could be started, but I have so many questions as to what life is like after surgery. Such as- what type you had, how long it took to recover, how many bathroom trips a day afterwards, can you eat what you want, etc., etc.


I think it's great to start a new thread. The short answers, in case you or others return to this one, are: I had a two-stage surgery that was laparoscopic. It is by far the most important thing to find someone with extensive experience doing the procedure at all, but if your insurance covers someone who is very experienced performing it laparoscopically, there are documented reasons to choose to do it that way over and above having fewer scars (including generally reduced healing times, need for hospitalization, painkiller use, and instance of ileus, hernia, and obstruction). Those are all on average; nothing is guaranteed, but I personally felt that it was worth traveling to get the possibility of these advantages, and had both surgeries at Mayo in Minnesota (I live about a two-hour trip from there by plane).

If you need surgery to get you out of the hospital and there is no one there with adequate j-pouch experience, it might be best to have the colectomy itself only (make sure they leave enough rectal tissue to attach the j-pouch) and not get the pouch done until you're healthy enough to get near someone who does hundreds a year. (That's the scale of experience that constitutes "very experienced.")

I was out of work for 2-3 weeks each time. I took no painkillers at all. I eat whatever I want. Sometimes I use the bathroom more times because of what I eat, but I really can't say how many times, because it's never urgent and so it doesn't really interrupt my life. It's probably most like your need to use the bathroom to urinate now. If you let it go way beyond the time when you knew you could go, it will get uncomfortable, but there's plenty of warning. I can easily hold it for a couple of hours.

I take probiotics, Metamucil, and Imodium (though lately I've been able to back off the Imodium some). Frankly, the sickest I was in the entire process, including both surgeries, was getting on (and then off) prednisone. I would have done anything to have avoided it again, but "luckily" I got dysplasia and the decision was made for me. I wish I had done it sooner.
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