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Ulcerative Colitis
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Posted 2/22/2011 2:33 PM (GMT 0)
I am one step closer to saying yes to do the j-pouch surgery. This is the first time since I've had the disease that I've seriously considered it. I saw my GI yesterday regarding the horrible symptoms I've been having since last Thursday (severe cramping, gas, nausea, tiredness, loss of appetite) and when he was pressing on my right side of my abdomen it was fairly uncomfortable. I normally do not have pain over there and he wanted to rule out an appendicitis since the symptoms I'm having are similar. Long story short I had to go into the ER because my insurance was closed for Presidents day and the ER requires no pre approval. I went in for a cat scan, they gave me fluids, a pain injection of dilaudid and something for nausea. The cat scan showed there was no appendicitis but there was inflammation from my colitis. My GI has put me on a short term steroid treatment again. I got a 40mg injection before I left the hospital, I continue 40 for 2 days, then bump down to 30 for 5 days. He said we'll go from there at that point. Unfortunately the steroids work as I'm 100x better today BUT last night after the hospital when I go home, I had nothing but watery diarrhea. I took a sleeping pill and woke up at 4am realizing I ended up messing myself in the middle of the night and had no clue (gross I know). I've never done that in the middle of the night and that is pushing me even closer to choosing surgery and getting this crap (no pun intended) over with. I'll probably give my next round of Remicade another shot...it works, it just does not last but 4 weeks then I go to hell again. I'll mention all this to my GI when I speak with him next. My sister had her J-Pouch done 17 years ago as has had no issues since...now if I can just be that strong and say just do it (no nike pun intended)

Gordon
Posted 2/22/2011 2:46 PM (GMT 0)
So sorry, Gordon. :-( I'm right there with you (though not as bad off as your flare seems to be). This is the first time Prednisone hasn't just knocked a flare out and it's hitting home that I can't just keep going on like I have been. I have a flex sig this morning because my GI wants to confirm the state of things so we can make a decision about what to do next (probably Remicade). Unless something really unexpected comes out of the scope, I plan to request an appointment up at Cleveland Clinic to consult and see what my options are. My husband and I have agreed that if we are comfortable after I talk to the surgeons, then I will aim for surgery this fall. I'm hoping I can do Remicade to get me out of this flare and keep me there until then so I can continue with my running and weight loss efforts and go into surgery as healthy and strong as possible.

I hope you are feeling better this morning. It's so hard to make these decisions when it seems like everyone thinks surgery is something to be avoided at all costs though they don't know how high the cost really is every day. I wish the best for you! Keep us updated on your decision and how you are doing.

Dawn
Posted 2/22/2011 2:56 PM (GMT 0)
If it makes you feel any better Gordon, no one wants surgery! I actually thought I'd rather die than have jpouch surgery but I was backed up against the wall and feared long term damage to prednisone more than I feared surgery. I've had my jpouch 10 years now and this has been the best 10 years of my life. No more medications, no more strange diets, and the freedom to make commitments to international travel and social engagements without the fear of a flare. When I awoke from surgery I could immediately tell that my UC was gone. That horrible nagging discomfort from the abdominal area was gone, I cried. This is what normal people feel like. And in the past 10 years I have felt normal.

I recommend that while you are waiting to see if Remicade improves things, that you at minimum get a consultation with a top notch CR surgeon in your state. If you need referrals to who those surgeons are ask at www.j-pouch.org

Sue
Posted 2/22/2011 4:37 PM (GMT 0)
Good luck, whatever your decision!
Posted 2/22/2011 4:44 PM (GMT 0)
Sorry to hear things are so bad. I was wondering how you were doing after your posts this weekend about the unbearable cramps. Can you try Humira? I agree with fruitgirl, "good luck, whatever your decision!" Maybe medication is just prolonging the inevitable.
Posted 2/22/2011 5:49 PM (GMT 0)

beeswax said...
Sorry to hear things are so bad. I was wondering how you were doing after your posts this weekend about the unbearable cramps. Can you try Humira? I agree with fruitgirl, "good luck, whatever your decision!" Maybe medication is just prolonging the inevitable.

I asked my nurse who administers my Remicade about Humira...she said it's not approved for me by my insurance so it's not going to be an option. She also mentioned Cimzia as well which I wouldn't be covered for. More and more I keep telling myself just to suck it up and get the dam colon removed...my parents are starting to lean towards that and my sister said she's been living many happy years since her's was removed and has had no issues what so ever.
Posted 2/22/2011 7:03 PM (GMT 0)
It really bothers me that people who need Remicade or Humira might not be covered for them if they need them in the USA. What a messed up system. I have always had insurance and/or public assistance for my medication needs in Canada and now in Israel.

If you do choose to go through with the j-pouch operation, please keep us posted. I would like to read about your story should you follow through with it. I wish you all the best, as I completely understand what you're going through. Stay strong and think positive, you will persevere.

Suebear - if you have not already done so, would you share your j-pouch story with us? I'd be interested to read about it.
Posted 3/1/2011 1:45 AM (GMT 0)
figured I'd give another lil update since my cat scan in the emergency room last Monday. I had my Remicade infusion today and the Dr. wanted to see me. Last week after the hospital we bumped up my 6MP to 75mg now and I just finished day 5 of 30mg of Prednisone. He wants me to bump down to 20mg for 5 days then down to 5mg. I've never had that big of a jump on a taper before so I'll just have to keep an eye on my symptoms. Next week he has me going for a Prometheus blood test regarding the 6MP. I've never had one before but I guess it checks the effectiveness of the 6MP and to make sure my liver isn't compromised. Right now I honestly feel great with no symptoms except for a minor gas pain here or there. I know a big portion of that is probably the steroids working so I'm anxious to see if my symptoms return as I taper down. It's good days like this that makes me not want to do the surgery but I know there will be more bad days to come that will make me consider it again.
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