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Yesterday's GI vist

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Crohn's Disease
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Posted 3/22/2011 1:07 PM (GMT 0)
Saw the GI yesterday.  Lost 5 pounds since December.  Doc says night sweats, fatigue, weight loss all point to increased inflamation.  He was annoyed that I stopped meds 10 days ago.  He wants me to take Apriso and continue taking LDN cream (been on it 4 days--switched from LDN pills).

I've read that Apriso is for UC that is in remission.  I have active Crohn's in the last 10 cm of my colon.  Doc says Apriso will help that, but I can't find anything that says that.  If anyone has any experience with Apriso, please share that with me.

I tried to get switched to Asacol or Asacol HD but doc said that would not help as much as the Apriso.  I pray he is right.

I also asked about a short dose of Entocort, but he wouldn't agree.

I am to get my blood tested in 2 weeks (CBC and ESR) and see him in 3 weeks.  If I am not starting to feel better, he is going to have me take 5 ASA enemas.

I am getting stressed because on April 20 we fly to DC for a vacation with kids and grandkids.  Aftter that, we fly north, and I'll be seeing my NY GI for the next 6 mos.  I want to feel better and enjoy the kids and grandkids.   I am hoping that the LDN cream will kick in and I will be feeling better.  

Sorry for the long whine, but I am just feeling down today.  

Posted 3/22/2011 2:00 PM (GMT 0)
Well cannynancy I will tell you that you need to stay on your meds. We have a chronic and incurable disease that really must be treated at all times.

As for the Apriso, I have Crohns in the typical TI/Cecum area. And I take Asacol which is usually use for treatment in the colon. But it has kept me in remission for more than 5 years now. Some meds take time to kick in, so I think you should try to be a little more patient. When you stop taking the med and then restart it, it has to begin its work over again.

I hope your meds kick in soon and you are feeling alot better. Hugs!
Posted 3/22/2011 2:06 PM (GMT 0)
If your inflammation is limited to the sigmoid colon, mesalamine enema seems like the most targeted approach with the fewest possible side effects. They work great for me. If you are anxious about using an enema, plenty of people here can give you tips and support and reassurance that it is no big deal.

I don't know anything about Apriso, but Entocort is meant for inflammation in the terminal ileum, so it won't really help the last 10 cm of your colon.
Posted 3/22/2011 4:05 PM (GMT 0)
My doc said the same thing when I asked him about entocort for inflammation in my sigmoid colon. He said it was a right sided drug-:) I took colazal and used the enemas. It takes a little practice with the enemas but you can probably get the hang of it. My worst problem was falling asleep before I would use them!
Posted 3/22/2011 9:56 PM (GMT 0)
Thanks for the info on Entocort.  Had no idea it was only for right sided Crohn's . My NY doc had once prescribed it for me but fortunately I started to feel better and didn't need it.

I will stay on the Apriso. I just wish I could get some info on how it has worked for others.

The enema does scare me.  I'm not sure how long I could hold it in.  I don't want to make a big mess.How long before you know it is working to calm the inflammation.

I'm so tired of feeling tired and sick.    

Thanks to those of you who responded. I always learn something new.

Posted 3/22/2011 11:25 PM (GMT 0)
If you put the enema in right before you go to sleep, hopefully you will go to sleep and not feel like you have to go. I could hold it for some reason but I also put it in very slowly. That might help. It wouldn't go in quickly for me anyway and isn't a lot of liquid. I hope it works for you.
Posted 3/23/2011 1:25 AM (GMT 0)
I've been using one kind or another enema for 10 years.  I've never had a problem holding it in, but sometimes I did feel a bit crampy.

Just last week I read a tip on how to use it without feeling crampy - on the UC forum I think.  The enemas come in little squeeze bottles.  The tip was to gently squeeze the air out of the bottle before inserting the tip into your rectum.  That way you get only medicine and not air.  I tried it and it was perfect!  I never felt gassy or crampy at all.  And I use it at bedtime - I insert it just before I go to bed, and then I lie on my left side to go to sleep.  I have even (blush) had intercourse with my DH after using an enema - not my favorite thing but not as bad as I worried either.

I usually see results from a mesalamine enema within a few days.  I haven't had any blood or mucous in a long time, so I don't know how bad your inflammation is.  I am just using my enemas now when I feel that there "might be" some inflammation in my rectum, which means maybe once a week.  Honestly, though, before last week I hadn't used an enema for months.

Give it a shot.  I get my mesalamine enemas in a generic and it costs me $5.00 for 28 enemas.  At the rate I'm using them, that will last me a few years, LOL.  That is the absolutely cheapest and most effective medicine I'm using for my Crohn's.

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