Cyclosporine is the last resort or bye bye colon (update)

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benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/5/2009 2:36 PM (GMT -6)   
So, the cyclosporine got me down to 10 trips to the bathroom which was much improved from 27.  I had been on that plus, zofran for naseau, protonix for reflux, probiotics, adavan for anxiety and naseau, prednisone (30) MG, folic acid, magnesium, potassium, IV fluids, 2 pints of blood needed to be transfused, bentyl for cramping, dapson (another anti inflammatory), and 1 shot of methotrexate.  This is all after being in the hospital for 3 weeks and counting.  So, things started to look like I was headed into remission.   48 hours ago I was ready to spring the joint feeling better than I had in Months.  Then it was time to disconnect the Cyclosporine.  48 hours later I am back to the bathroom 16 times so far in a 21 hour period, throwing up, naseau is back.   So, Cyclosporine did not save my colon but now I am back on it to bridge the time it will take from me to be transferred to a hospital with state of the art facilities to remove the colon entirely.  I am not sure if it will be a 1 or 2 stage surgery.  I hear that most docs do it in 2 phases 1) remove the colon and attach an ostmy.  2) Weeks later reconstructive surgery to connect small bowl and J pouch to the exit door. 
 
 
I have read many sucess stories on this forum and the thought of surgery scares the crap out of me, the result is being disease free.  I don't know what life will be like without a colon.  But I am hopeful once recoverd that I can say I am well and healthy once again.  I've got 2 young kids at home.  We missed X-mas and New Years together with me being in the hospital.  They could not come becuase I caught C-diff on top of the flare.  We UC people are at such greater risk for this.  Immune suppressed, hospitalized, being on anti-biotics, digestive flares.  Geez, talk about not gettting a break.  Since it causes all the same symptoms as UC you never know if your disease is getting better or worse and from what.  Well, I have to test negative before any colorectal surgeon would even consider operating.  I hope it comes back negative and we can move forward with the cure.
 
 
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
 


bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/5/2009 2:44 PM (GMT -6)   
Hang in there and soon you'll be rid of that nasty colon! What facilty will be doing the procedure?
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!!!


suebear
Veteran Member


Date Joined Feb 2006
Total Posts : 5698
   Posted 1/5/2009 2:49 PM (GMT -6)   
With your current health I don't believe you would be a candidate for a 1-stage surgery and possibly not a 2-step either. However, no matter whether you get a 2 or 3 step surgery you are immediately going to feel better once that colon is gone! I think your case is ideal for making a decision for surgery, you just aren't responding to meds and have no quality of life. Hang in there, the next year will be difficult but it will be made easier because you will be healthy.

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


benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/5/2009 5:15 PM (GMT -6)   
The docs came in this evening. They put me on another 48 hour IV cyclosporine then will send me home on oral cyclosporine. At that time I will be meeting wth a Colorectal surgeon at Washington Hospital Center in DC. They want me to be clear of C-diff, going 10 or less times a day and in better health than I am nutritionally before they operate. If I can go into surgery healthier they can perform it in 2 steps. 1)Remove the colon and construction the pouch with a temporary ostomy. 3 Months later back in to remove the ostomy and attach everything to a newly constructed replacement colon. I can't wait to say I am disease free and off these medications that have been also making me sick.

It will be about 4 weeks until they will schedule the operation. Now it is my job to keep myself healthy for the goal!! Living Disease Free!!
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 1/5/2009 9:01 PM (GMT -6)   
Sorry to read that you've had complications, including c-diff, but thank you for updating us. It sounds like the doctors have a reasonable plan for getting you back in fighting shape. Good luck for discharge to home & best wishes for you to regain strength ASAP. / Old Hat (nearly 30 yrs with left-sided UC ... [etc.])

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/5/2009 10:26 PM (GMT -6)   
YAY for being healthy soon! You really will be amazed that when you wake up with that nasty thing gone you feel better immediately!
I am sorry that you have to go through the surgery and all and that you are gonna have to endure all this until you can get some help.
Just keep remebering, next year you will NOT miss christmas because of UC and you can eat all the christams goodies you want!

bbc
Veteran Member


Date Joined Mar 2008
Total Posts : 1580
   Posted 1/5/2009 11:09 PM (GMT -6)   
Your liver will thank you too.

Keep us posted on your progress going forward...it will be quite interesting comparing your experiences vs. Paul who's also on the forum and just had his done.

God bless and God's speed! : )
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!!!


atlucgirl
New Member


Date Joined Oct 2007
Total Posts : 5
   Posted 1/6/2009 1:31 PM (GMT -6)   
Sorry that the cyclosporine didn't work for you.  I also spent Christmas in the hospital and my GI gave me cyclosporine after a 7-day steroid drip.  I'm currently taking oral cyclosporine and this is my 9th day and I'm down to 1-2 bm's per day.  I'm not sure of the next step but it doesn't look like I'll have to sign up for surgery at this time.  I wish you well and I know you look forwad to getting your quality of life back to normal.  I met with a Stoma nurse in the hospital and she helped ease a few of my fears.  Also, while there I saw two people that had the surgery and they waltzed out days before I did and they both looked great!  After getting out I went to the grocery store and saw a girlfriend and we talked about my issues.  A lady passed by and told me that she had just had the 2nd operation a month ago and that she felt great and I had nothing to worry about if I had to have the surgery.  It's funny how all the sudden you are surrounded by people that make you feel at ease.  Good luck!!!

benjwl123
Regular Member


Date Joined Dec 2008
Total Posts : 21
   Posted 1/6/2009 8:04 PM (GMT -6)   
Thanks for all of your support and experiences with the surgery and people you know who have had it. I can't wait for the day I can wake up and feel well again. Things are not improving as planned and it is looking like this is gonna be a three step surgery and more emergent one but I see the light at the end of the tunnel and that can't come fast enough. You have all kept my spirits and hopes up when I have felt the despair of the gut with the bathroom runs. I don't know where I would be without this forum!!
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
 


ks1905
Veteran Member


Date Joined Sep 2005
Total Posts : 5162
   Posted 1/6/2009 10:56 PM (GMT -6)   
How experienced is your GI with Cyclosporine? The GI practice that I go to actually helped pioneer the use of Cyclosporine in use for treating severe UC flares. They've been using it for a long time. I've been on Cyclosporine twice for UC flares and they said that you have to be in the hospital for at least 7 days on Cyclosporine before they will release you.... the two times that I was in for was for 14 days and 12 days. The stuff works great for my UC flares; each time I was released on Oral Cyclosporine. 48 hours IV sounds kind of short; both times that I used Cyclosporine it took about 4 days before I noticed an improvement and by the time I was being released I was probably going between 2-4 times a day. The first time I went in I was going 40+ times a day.

You need to be properly monitored (meaning lots of regular blood tests for Cyclosporine), especially when you first start taking the medication.

You are probably at the point where a 2nd opinion might be warranted.

--Keith
DX'd with Pan-Colitis June 2005
Current Status: Remission
 
Current Meds:  50 mgs 6-mp
Supplements:  Forvia multi-vitamin
 


malka
Regular Member


Date Joined Apr 2006
Total Posts : 171
   Posted 1/7/2009 9:54 AM (GMT -6)   
I went to the same doctor as Keith and was hospitalized for 12 days. I agree with him that a second opinion might be warranted. That was 11 years ago and I have had only minor flare-ups since then. I also contracted C-diff. Without the culture, I would have sworn it was a flare-up. So, wait and see how you are once the C-diff is gone. I was treated with Vancomycin for C-diff.

I wish you luck.

M
Diagnosed UC 1975. 
Azulfidine Entabs 500 mg. 4 twice a day
Azathioprine 100 mg per day
Colocort - as needed
Folic acid, vitamins C and D, multivitamin, metamucil, fish oil, turmeric 
 
Hospitalized 1997 - intravenous cyclosporine.

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