Cyclosporine is the last resort or bye bye colon

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! 

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?

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.

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 : ).

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.

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.

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.

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.