In hospital...told I have Refractory Colitis (resistant to steroids) - looking for support/insight

Hi all,

I'm a new poster to the forum but I've been reading for a while. I've had UC with very mild symptoms for 12 years, was on Asacol off and on which kept symptoms manageable. Started getting gradually worse this fall/winter and then 2 weeks ago I was hospitalized with an acute flare - CT scan showed my entire colon was enflamed.

They put me on steroids for 5 days, then 7, now it's been 10, and I've been told that since the steroids haven't controlled the flare now I have "Refractory Colitis." (I'm writing this from my hospital bed, at 5 in the morning since the steroids won't let me sleep!)

Today I started Remicade, now we're just waiting to see if it works.....But what if it doesn't work? The docs are talking like surgery is my only option left if the Remicade doesn't do its magic.

Has this happened to anyone else? Just looking for some support/encouragement/insight I guess. It's pretty terrifying lying here feeling like my whole life has been ripped out from under me.

How do I find more information about living with the surgery?

Bostongirl, there are other options before surgery such as humira and stem cell done abroad. How old are you?

Yes, you are not alone to have refractory UC. My story is similar but I was able to maintain on prednisone for a couple of years before having surgery. Some patients just don't respond to the drugs. My body stopped responding to UC meds at the 10 year mark, and that was after 10 years of UC mostly in remission. I know it's hard to get your head wrapped around the idea of surgery so I encourage you to do some research. A great place to post your questions is at www.j-pouch.org You can meet a lot of people there who had refractory disease and they can share their experiences and offer you support.

Sue

There are more options if Remicade doesn't work. For me I have an allergic reaction to Remicade, so with that problem I was given Humira which has helped me. I've been in remission with minor yearly flares, but Humira has helped me manage my remission.

Bostongirl09:

I fee 4 U.  I was in the same boat as you are know about 3-4 year ago.  I was in the ER dept and I had surgeons circling around me.  However they were very hesitant to actually start cutting because all I had been on up until that point was Asacol/prednisone.  They said I should try 6MP/Imuran and or Remicade/Humira.  The ER staff also wanted to admit me right there and then because my bloodwork was off and my CT scan of my colon showed an inflammed colon like yours.  They quickly put me on Flagyl and Levaquin which calmed my colon down.  I asked to leave the hospital and I told them I would be seeing my GI doc.  I was then put on Imuran and rectal meds like cortifoam and then switched to Canasa.  The Imuran took about 1 month to kick in but has put me in remission.   Take home lesson, you have to weigh the pros and cons.  I wanted desperately to keep my colon.  The imuran may have taken longer but has helped me tremendously.  I could always go to Remicade if Imuran fails me but right now my colon has healed and I have a bm once every 1-2 days. 

Good luck, we are here 4 U. 

MyUC

My son went through the same thing,but that was 10 years ago,failed on IV cyclosporin and Solumedrol.  He was also on TPN to fatten him up. At some point you may have to make a decision,please try to make a educated decision go to http://www.j-pouch.org/ an join the discussion group. Do not get too upset about the problems you may see there, many have problems but many do quite well including my son with a pouch.

Oh by the way I got UC when I was 32,still here with a colon, but that was in 1980.

Old Mike

 

Thanks everyone for your thoughts, there's a lot to think about here. (And lots of research to do tonight when the steroids keep me up! Already checked out jpouch.org - what a great site!)

So today was the first day after my Remicade infusion and.....I think it worked!! I was able to try actually eating and things really do seem to be relatively "normal." (Eating my first real food in 14 days, by the way, was pretty intense - probably the best eggs and toast of my life!!) Of course now I'm waiting for the other shoe to drop, hoping that nothing explodes, praying every time I feel a stomach gurgle, but so far so good - I'm keeping my fingers crossed!

Even though it looks like Remicade might be my miracle drug, though, my GI doc sat me down and told me this: "Many people with Refractory Colitis are keeping their colons with Remicade and it is working so far. We just don't know what the future will hold. Data says that there's a 70-80% chance in the next three years that you will require a colectomy. So we'll see - now you're part of the data."

Which is pretty harsh, but I kind of love that he just put it out there. No bullcrapting around it - I might not require surgery, but it's a very real possibility, so there's no point in walking out of here and putting my head in the sand and pretending like "Remission" will be forever. I'm meeting with a surgeon before I leave the hospital, just so I know her face to face and so that the next time I see her I'll already know my options.

Not sure how I went in a day to feeling so much more powerful about my disease! (Honestly I do think the steroids are giving me minor power surges, LOL.) Knowing that I'm not the only one on here with a story like this is so helpful, thank you.......

Keep us posted! I hope you continue to feel better, whatever route you take. There are a number of options, as you've read here.

We're glad you're with us!

Don't give up hope... Keep positive I have had colitis for 11 years now and have been in hospital twice in that time for long periods of time on iv meds and prednisilone iv for 10 days at a time.. I survived but it was tough. They spoke about surgery many times but I am still intact.. Whilst in this state please drink lots of water if you can as it will help.. Stay away from coffee and tea as this may make you worse and alot of junk food will make you feeel worse. whilst in this state. I found high doses of steroids started to work but it was a slow process.. Unless you rupture your bowel please look seriously into having the surgery as it sounds like you still have a few meds. to try yet... as you may recover.. I have had flares most of the 11 years of this disease and am on max of all meds including steroids. I have not yet had any surgery in my 11 years. If I have surgery my GI wants to remove my whole large bowel and reattach my small bowel in its place so i dont have to have a j- pouch. This type of surgery will cure you for ever from colitis but is a major surgery. He describe it to me like having a transplant eg. heart, lung,kidney. But i would be free of the colitis for ever which sounds great.
So if i ever get to the stage i have to have surgery I will be getting my large bowel taken out and not getting a j pouch. I have looked into this procedure and think it is the best for me.
Good luck hope all goes well for you and you make a full recovery without the surgery..
Am looking forward to sleep aswell once the prednisilone dose i am on is reduced enough that i am able to sleep at night aswell.. Bring on a good night sleep..