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hydrocortisone impede healing?

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Ulcerative Colitis
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Posted 2/29/2012 10:10 PM (GMT 0)
I was on oral prednisone from Sept to early Jan.  A few weeks after weaning I started to gradually get blood again.  I'm currently having one or 2 bms a day.  Mostly formed.  But I pass blood with them.  Blood pink or red on tp and next to stool.  After dinner or righ before I can pass some bloody mucous about 4x until bed.  I'm on 1 hydrocortisone enema a night and added suppositories in the Am like 4 days ago.

Do you think taking them for a couple months has backfired and made it harder to heal.  At first they seemed to help but now I'm not so sure. 

I am on oral LDn and awaiting transdermal to arrive any day.  I've heard a few people say they did great and stopped bleeding on the transdermal. 

Also my GI has hesitated on putting me back on Pred.  I'd like to try that or budesonide but she won't do it.  I think I've only been on about 3x since diagnoisis in 1999.  I'm hoping to get things under control and then see where the LDN takes me.  I think she's frustrated that I haven't done 6mp yet. 

Oh and I got my blood test back she wanted and I am NOT anemic.  So that is good. 

So hard not to get down.

Posted 3/1/2012 4:24 PM (GMT 0)
Seasons, have you considered seeing another GI? It sounds like yours wants you to go a certain route and she isn't open to experimentation with LDN or other more natural treatment paths. Who prescribed LDN? My GI wouldn't prescribe it for me and I ended up going on 6mp. To be honest, while it's not ideal to be on an immune supressent, I haven't had too many side effects and I haven't had any serious flare ups either so it has done its job as far as I can tell.

You're not supposed to use the cortisone enemas ongoing. I believe after you use them for a longer period of time, they can actually weaked the tissue in the rectum. Have you tried switching to Rowasa enemas or Canasa suppositories?

What kind of medication are you taking besides LDN?
Posted 3/1/2012 4:41 PM (GMT 0)
Thank you for the reply, I so appreciate it.

My integrative doc has prescribed the LDN. She is an MD and open to alternative. Has her own alternative practice as well that treats kids with autism.

That is my concern. I hope all this hydrocortisone is not backfiring on me. I took it at the end of my Prednisone round and then added them back at the end of Jan and havent' stopped.

I have an appt with another GI at the end of March. My integrative doc says he's compassionate and will "work with me". But that is far off.

I cannot wait for this transdermal LDN to arrive. If that doesn't work, I'd like to do another round of Pred or budesporine (if I can get it). If that is still not the ticket then I have to be open to 6mp. I am so uncomfortable with it adn it will be depressing for me. But I know I can't keep bleeding either.

Thanks
Posted 3/1/2012 4:42 PM (GMT 0)
Oh and no mesalmine for me...I wish I could but I have a terrible reaction to all of them
Posted 3/1/2012 6:06 PM (GMT 0)
How long have you been on the oral LDN? Has it helped at all?
Posted 3/1/2012 8:11 PM (GMT 0)
@Gonk

Since Jan 9. No so far I do not see it helping. But I've spoken to Skip at Skip's pharmacy and he said if I'm very inflamed and bleeding that I might need something to help me get things under control. He suggested the Budesonide but so far my GI is saying no. I have a call into her right now to ask again for that or Prednisone. She is "not convinced" by LDN so as far as she is concerned....I'm not on any maintenance.

Today has been better but we'll see how tonight goes. Late afternoon and dinner time I usually start passing blood and mucous. I did my cort enema last night and then this morning I used a cort suppository. I had 2 bms close together so I used another suppository and so far today I've had not other urges to go to the toilet.

Tomorrow I should have the transdermal and I hope that helps. However Skip said I might still need something stronger to get things under control.

I am very nervous about how many months I"ve had bleeding and I'm super nervous about talking to the GI. She is so intimidating to me.
Posted 3/1/2012 8:42 PM (GMT 0)
I don't understand why she's giving you so much trouble about Entocort but she's willing to prescribe Prednisone? As far as I know, pred is the best steroid for treating a UC flare up but Entocort can work very well too and has much less side effects. I think it's crazy that she's making such a big deal about it. I am happy you're going to see someone else. I think it's important that your GI will work with you and take your desires and opinions into consideration. It sounds like your GI has a plan and wants you to follow it. I tried to go againts my GI's plan and avoid 6mp and eventually I ended up on it but she at least let me try a few of the things I mentioned and listened to me.
Posted 3/1/2012 11:58 PM (GMT 0)
Sorry but I hate hate hate the "my way or the highway" GI's. Hope you will be seeing someone else soon. I had one of those and dumped him. This is a chronic problem and you def. need a partner. That being said, I hope you will be feeling better soon. InSoFla has had great success w/the transdermal LDN and it seems very promising. Keep us posted on how you are doing.
B
Posted 3/2/2012 12:07 AM (GMT 0)
Thank you for your support everyone :) I really appreciate it. It's so hard not to get down about all this. It's also so hard to manage all this stress. I know that is not good for me but just dealing with the docs and meds is so frustrating. I am finding it a big challenge to take care of myself and manage my crazy life with two busy kids. I am praying that LDN will be helpful. I would love a break from this sometime soon.
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