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Ulcerative Colitis
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Posted 10/30/2007 4:06 PM (GMT 0)
I'm a new member and am having a difficult time mentally right now.  I am hoping some of you may had similar experiences and can share them with me.

UC since April 2006.  First flare May 2007 (hospital for 28 days; close to having surgery).  Things brought under control with one Remicade infusion, but got MRSA infection from the PICC line.  BM's dropped from >20 to 1-3 per day.  I was not able to get the second and third doses on time because of the MRSA.  Tried second Remicade 15 weeks later, but had a severe rxn even after pretreatment with tylenol and benadryl.  GI says no more Remicade.  Currently taking prednisone (20mg, down from 40mg last month). 

At 20, I'm now seeing bright red blood in stool and on TP.  Stool is now loose versus soft and formed at higher pred dose. Still only 1-3 BMs per day.  Doctor wants to wait and see another week.  If no changes, he wants to do a colonoscopy to see what's going on.  Could be hemmorhoids, but he cannot rule out active disease.

I can physically handle the 1-3 BMs per day.  Anything is better then 20!  My problem is mentally.  Every time I have a change in BM, all I can think about is I'm having another flare and will end up in the hospital again.  Also, I am having a difficult time not letting UC be my life.  I think about it all the time, especially in the car commuting to work.  I sometimes wonder if I should just have my colon removed and be done with it.  My wife is extremely supportive and tries to lift my spirits all the time.  Will I ever be like the person I was before UC? 

thanks.

----

prednisone 20mg/day

calcium 2x per day

digestive advantage crohn's&colitis (1tablet per day)

Posted 10/30/2007 4:18 PM (GMT 0)
I think the mental aspect of this DD is probably the toughest challenge to overcome. Think about it, you have recently been told you have a chronic life altering disease so of course it would affect you mentally. We have all been there! Like any chronic illness comes the grieving process - denial, fear, anger, acceptance. It took me many years to come to terms with this illness and now that I have, I have a much calmer outlook on life and I don't let this disease rule me. What also might help is seeking professional help such as a counselor that specializes in chronic illnesses. Being able to talk out your fears might help ease your mind a little. As for colon removal, that is a truly personal choice and only you can decide what is best for YOU.

Oh and btw, welcome to Healingwell :)
Posted 10/30/2007 4:28 PM (GMT 0)
Hey Orangeman

I'm going through the same thing as you right now.  I was just diagnosed with UC a little over a month ago and it was a complete shock to my system when my doctor told me I have a chronic disease.  The way I'm trying to cope with this is by learning as much as I can about UC.  The more I know,  the better I can fight it and hopefully not let it consume my life.   Also,  seeking professional help may also help you cope as well.   It's something that I'm looking into as well.  I wish you all the best.....

Posted 10/30/2007 4:58 PM (GMT 0)

Oh boy can I relate as well.  I was diagnosed because I was having a very bad flare...ended up in the hospital on steroids IV for one month.  I did not have any time to digest what was happening to me.  I knew nothing about this disease nor the medications I was taking. I was bad for 5 very long months.  I decided to have surgery because I was so sick and all I could think about was my health, this freaked me out so much. Like you, this disease defined me...I thought little else. By the grace of God, before surgery I got better.

I am having a flare after being symptom and medication free for 5 years.  It is different this time.  Although it takes a lot of my thought, it doesn't scare me as much.  Sherry gave some good advice, find someone you can talk to even if it's a friend...talk, talk, talk.  Ask alot of questions here on this board, vent.....it's so important to feel loving arms around you at this time.  Know that you are not alone.  I bet you most people have gone through or going through what you are going through.

There is also the possibility that the Prednisone is playing a factor as well.  I was an absolute basket case (an emotional reck)

Hang in there...you won't always feel this way. I pray for eveyone on this message board, I'll pray for you as well.

Posted 10/30/2007 5:21 PM (GMT 0)
In my limited experience, I think it is too soon to be thinking about having the colon removed. It seems you are still trying to find the right combo of meds. Are you on a maintenance med such as Colazal? I had my first really bad flare last spring and within the past few months (several months later) am now feeling almost "back to normal." I would keep experimenting with the meds to find what works for you. If you are still experiencing bleeding, IMO, you might ask to increase the prednisone dose to get to a point where the bleeding subsides. I was on 40 mg for a few weeks, then down to 35 mg, then 30 etc. If the inflammation is bad you may consider slowly tapering the dose so the colon heals better. With the prednisone, I believe you also need a maintenance med like Colazal or Asacol. All of this is based on my experience as this disease seems to be personal and what works for one may not for another. Stay positive, sometimes the change will take a lot of time but with the right conditions healing should occur.

Posted 10/30/2007 6:19 PM (GMT 0)
I agree. It takes time to learn all you can about IBD and to find the right combination of drugs, supplements and dietary changes that will work for you. I know I was pretty ill for the first couple of years after my diagnosis, but gradually I learned what worked for me and was able to achieve years of remission. All I can say from the other side is "Don't give up" and educate yourself on ALL of your options.

I'd highly recommend the book Listen to Your Gut by Jini Patel Thompson. It can help you explore various treatment options and will teach you things to do to support healing so the drugs you do take will work better for you.

http://www.crohnsalternative.com/
Posted 10/31/2007 11:27 AM (GMT 0)
thanks for all the information and support. I'm sure I'll be posting again soon with an update. I feel better mentally this morning.
Posted 10/31/2007 12:34 PM (GMT 0)

orangeman, I think this is one thing we all carry the fear of all the time - relapsing into a flare. I have a theory that this is part of what causes my chronic fatigue.

I agree, finding a few key people to talk to about this can be key. In my case, my family knew right away. But it was when I told key people at work that I began to feel more free of the fear. I was afraid to tell them, because I thought they'd be repulsed or not want to be around me. What I found is that my boss, my peers and my employees were all supportive. My employees show their caring daily by asking how I'm doing, if they can help when I'm doing something physical, etc. I feel comfortable now that if one of the really bad thins I worry about (like an incontinent episode) would happen at work, they'd be there supporting me instead of recoiling in horror.

Of course I still worry about flaring. I always will. But now I worry a bit and watch for a while when something changes, but not constantly. Good luck to you, I really hope your more "up" mood continues.

Posted 10/31/2007 9:16 PM (GMT 0)
I've had it for almost 3 years now and I still can't accept it. Everyone keeps telling me to get over it and move on, but I can't. I agree that it's the hardest thing. And once you've had a really bad flare like that, it does make you on edge. I'm so sorry you weren't able to do the remicade again. Sounds like it would have been great for you. Maybe you can do the imuran though since it's an immunosuppresant too?
I agree Judy that it could be part of chronic fatigue. I really do get tired just thinking about my UC. And since it's on my mind constantly...
I wish I had more to tell you, but you are not alone. And it will come and go. Just try not to let it consume you.
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