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Ulcerative Colitis
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Posted 3/23/2011 12:07 AM (GMT 0)
I posted on Sunday about my progress. Sunday night I used a rowasa enema and retained it until about 2am. Monday I felt better than I had in a month. I went to the doctor who told me she honestly didn't expect me to be fully better for about 8 weeks (4 more from now). She expects me to stay on the Lialda for about 6 months and then we'll see.

She agreed to give me one more week only of the rowasa enema. Her rationale was that she wants to see if any improvements are due to the medicine or if I am truly moving into remission and the inflammation is naturally reducing.  Got more blood drawn to check on counts, sed rate, etc.

She was also concerned that I lost 10 pounds. I definitely needed to lose the weight but not that way. I could benefit from losing another 10, but the doctor told me clearly NOT to lose any more weight for the next month. She said she'd be concerned that it was the disease causing me to lose weight and she wants to see me stable first. After a month, I can diet again if needed (I lost 10 pounds before my flare on purpose then another 10 in the flare.)

She also gave me a prescription of levsin to help with my cramping especially since I decided to go on a business trip next week which will have me flying for about 7 hours (including one layover). That stuff really makes me sleepy which will be good on the plane!

Unfortunately, today was a step back. More rectal pressure and some blood returning. The blood usually shows up first in the toilet but then the stools come out without any blood. The stools are mostly solid which I suppose is good but still not very formed and having more urgency today too. Maybe I ate too much the last few days. I can't believe I'm saying this, but I am looking forward to the enema tonight because it really seems to be connected to improvements.  I really just want to be moving forward and am so so tired of the toilet!

 

Posted 3/23/2011 1:10 AM (GMT 0)
I understand that to and fro dance all too well. Hang in there and hopefully the Rowasa can get you feeling better and better every day. If they don't do what they're supposed to do, did the doc mention using steroid enemas?
Posted 3/23/2011 2:19 PM (GMT 0)
No mention of steroid enemas. I think the doctor prefers to avoid all forms of steroids if possible.

But the BEST News is that I slept all night last night!!!!!!!!!

I used the rowasa enema at around 11:30 and didn't wake up til about 5:30am when I glanced at the clock and was able to go back to sleep until 6:30 when I had to wake up to get my son ready for school. That is the first time I slept all night with no bathroom trips in over a month!!

And I feel pretty good today. A bit of cramping but no urgency so far. The rowasa is the best. Never thought I'd appreciate an enema so much!

 

Posted 3/23/2011 2:27 PM (GMT 0)
     Be careful of your diet too.  Even though the doctor doesn't want you to lose weight,  eat a low residue diet and try six little meals daily.  I used to eat Activia yogurt because my system didn't tolerate much.  I also stayed away from coffee, red meat and pasta with sauce.

     I know that feeling all too well....urgency, bleeding, cramping.  I suffered with UP for twelve years before having surgery.  Let's just hope you get into remission with the enemas and Lialda.  I became prednisone dependent over the years....you sure don't want that.  Your doctor seems very knowledgeable (think I spelled that wrong..lol).

     Best of luck to you!

Posted 3/23/2011 2:45 PM (GMT 0)
I found that a low-residue diet will put on the pounds.

Think about it, no vegetables or fruit and lots fruit and vegetable juices (calories with little effect on satisfying hunger) and lots of refined breads. I packed on the pounds when I was on this diet.
Posted 3/23/2011 2:48 PM (GMT 0)
I'm still trying to figure out the best diet for me. I don't think any particular foods upset my colon but I do think smaller meals are probably better for me. I started eating some larger meals the last week and I think that just caused too much action on my colon.

 

Posted 3/23/2011 3:36 PM (GMT 0)
I agree with you - smaller meals are much easier on my gut, too, and large meals can cause me some gut discomfort. But, in fact, I think that's true of large meals for a lot of folks, whether or not they have UC!
Posted 3/23/2011 3:42 PM (GMT 0)
Awesome news! sing the accolades of the enemas to the doc so that she's not putting you on anything else too soon.

The steroid enemas could be an option for maybe a boost if needed..

I heard a lot of "be patient" from my doc....longest nightly for me was 4 months...I even asked him about prednisone at that point and he smiled, shook his head NO and said...you're improving. It would be different if you weren't.

Thanks for the update.

Regarding putting on weight...you will...don't worry about it too much, just make sure you're eating as balanced as possible and enough calories per day.

You'll retain your weight better since you don't have the worry or constant bms.

q
Posted 3/23/2011 11:26 PM (GMT 0)
good for you!!! I dont' know why your Doc. only wants to give you a week at a time for enema's though... there is no harm in doing them at all.. it is the same med as you are taking orally, just put in a different place!!!!

When i finally got my GI to agree to enema's he gave me a script for a month's worth right off the bat! upon a follow up appointment (still some symptoms but definate improvement), he wrote a 6 month refill but explained how to cut back when the time would come!!!

I say stick with them as long as you feel you need them!!! get into a solid place before cutting back.
Posted 3/24/2011 3:20 PM (GMT 0)
If something was working I wouldn't experiment by stopping to figure out if it's REALLY working.

Interesting to hear the 4 month story, Quincy. Your doc sounds amazing. Would have loved to be a fly on the wall hearing you ask about being put on prednisone. (tee-hee).

Patience, kks. Enemas rule.
Posted 3/24/2011 7:31 PM (GMT 0)
LOL..that was before I had the internet as well.
Yes, he's a great doctor, and will be retiring sooner than later at this point.

q
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