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UC 47 Years Next Step

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Ulcerative Colitis
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Posted 1/15/2012 8:39 PM (GMT 0)
New Member-Visited this site several times and decided to join great support and information. I am currently in a flare and taking 4 Lialda daily, Rowasa nightly and 60 MG Pred daily for 14 days now with some relief but no formed stools (bleeding has subsided a great deal). I was DX"d with UC in 1964 (age 17). Current DX Left sided UC. I do not want to go the biological route and am looking at trying LDN. May be time for surgery? Don't want to stay on 60 mg much longer. Any recommendations for best GI and also best Colo-rectal surgeons in the Marietta/Atlanta georgia area? Thanks for any input.
Posted 1/15/2012 8:42 PM (GMT 0)
Hi..welcome to the forum.

Are the Lialda and Rowasa just a recent addition to your meds?

When was your last c-scope?

q
Posted 1/15/2012 8:46 PM (GMT 0)
Lialda for 2 years. Rowasa maint until flare (3 x wk) for3 years. Changed to nightly when flare began. C scope yearly. Last one april 2011.
Posted 1/15/2012 8:47 PM (GMT 0)
What was the results of your last c-scope?

q
Posted 1/15/2012 8:49 PM (GMT 0)
Last scope was clean. c diff checked 2 weeks ago-negative.
Posted 1/15/2012 8:50 PM (GMT 0)
Hi and welcome to the forum. Sorry your feeling poorly. Has it been two weeks with all three of these meds? Everyone is different with how long a flare can take to respond to treatment. Having bleeding subside is a step in the right direction. Maybe something to consider is a steriod foam or suppository to use in the morning. Do you take a probiotic?
Posted 1/15/2012 8:52 PM (GMT 0)
So, still on Lialda continually, rectal meds maintenance 3x weekly, totally clear the full extent of your rectum/colon and jumped into a full blown flare 2 weeks ago?

wow.

q
Posted 1/15/2012 8:56 PM (GMT 0)
Tried the steriod foam doesn't work for me. Scheduled to talk with GI Monday will suggest suppository. Haven't tried a probiotic. the Rowasa and lialda meds are running over $1100 / month after 120 off from Lialda card. insurance doesn't cover probiotic.
Posted 1/15/2012 9:06 PM (GMT 0)
I can only offer you this: If/when you have exhausted your possiblities, just know that surgery can be a huge blessing in disguise.

If you go to Jpouch.org (or the ostomy board here on healingwell) you can ask about colo-rectal surgeons in your area. I know there are many people on that site in the Atlanta area so I am sure someone can point out some surgeons to you. All the best to you.
Posted 1/15/2012 9:11 PM (GMT 0)
Flare started 6 weeks ago mild-2 lialda and Rowasa nightly. No relief went to 4 lialda 4 weeks ago and Rowasa nightly flare got worse. 60mg pred 2 weeks ago + 4 Lialda + Rowasa. Over the 47 years have had many different meds but Pred had always gotten it in check sometimes going 3-5 years without a flare with sulfazaline as maint med. This is the second flare in 2 years.
Posted 1/15/2012 9:26 PM (GMT 0)
enjoygolf,

Welcome to the forum.

I am sorry about your recent flare.


 I do not want to go the biological route and am looking at trying LDN

I understand that. The meds I was put on didn't help me, and finally the gastro gave the choice of biologics or surgery - and I  balked at both. I had to find my own way. LDN is a great and very effective drug, which alot of folks on this forum (including myself) have had great success with.

I would urge you to try it before going the surgery route. Do you need all  the links for the info on LDN or do you have them already?

There are other things you can do as well: diet, probiotics as NSSG suggested, supplements, etc...

I have a whole of things that has worked for me, I would be glad to share if you like.

 

Posted 1/16/2012 1:06 AM (GMT 0)
Thanks for all the responses. This is a great support group. I plan to pursue the LDN route. Any opinions on whether transdermal or capsule mixed with liquid works best. Also looking for compounding pharmacy in Georgia. Next hurdle is convincing GI Dr.
Posted 1/16/2012 1:23 PM (GMT 0)
enjoygolf,

There's a LDN compounding pharmacy near you, it's called Coastal Compounding Pharmacy - you can look them up.

Some people do great with oral capsules of LDN, but filler is key to be being problematic free. My recommendation is for oral capsules to have sucrose filler.

Some people do great on transdermal LDN cream. It's a matter of how damaged your absorption is. Transdermal bypasses the gut entirely so for those with absorption issues that's great.

It would be great if you GI would prescribe it for you.

Let us know how you make out.


 

Posted 1/16/2012 7:18 PM (GMT 0)
Hi Enjoygolf,

I too live in the Marietta/Atlanta area and have had my share of GI dr. Maybe we should compare notes.
Posted 1/16/2012 10:16 PM (GMT 0)
InSoFla,

I will lookup Coastal Pharmacy. What is the appx cost of Transdermal LDN?
Posted 1/16/2012 10:18 PM (GMT 0)
BellyAche,

I hace only been to 2 in the last 40 years. One a colo-rectal surgeon for 45 years and my current GI for 2 years.
Posted 1/16/2012 11:49 PM (GMT 0)
Enjoy golf,

I think I paid around $65 for a 3 month supply of transdermal LDN.
Posted 1/17/2012 4:32 AM (GMT 0)

enjoygolf said...
Tried the steriod foam doesn't work for me. Scheduled to talk with GI Monday will suggest suppository. Haven't tried a probiotic. the Rowasa and lialda meds are running over $1100 / month after 120 off from Lialda card. insurance doesn't cover probiotic.

 

I had a similar problem with my medication librax I was paying 90 every 2 weeks for a script. My dortor contacted my insurance company and told them that it was part of my medication that was needed because of my condition and I get it for a lot less.  YOu should try and ask your dr if this is possible.

Posted 1/17/2012 5:36 PM (GMT 0)
I think if you are even considering surgery, it is a good idea to go ahead and see a surgeon, so you are a taking a step in the right direction there.
And if you want to try other things, sounds like everyone gave you some good advice on that too!
Personally I went with surgery after 8 years, and am very happy.
Good luck!
Posted 1/17/2012 5:51 PM (GMT 0)
47 years of UC....that's messed up. It's a sentence without parole. You'd think that after 40 years, the immune system would get tired of messing up the colon.
Posted 1/17/2012 6:58 PM (GMT 0)
Starting the Pred taper today. Gotten a lot of work done around the house the last 2 weeks!! Thanks for all the responses. Sure would be nice if GI DR's read this site-they would get some good tips on patient needs (LDN, etc).
Will start to look for a surgeon. Does anyone know if Medicare places restrictions on what makes surgery an option?
Posted 1/17/2012 9:18 PM (GMT 0)
If you're opting for a jpouch, I recommend you see the most experienced surgeon in the closest metro area of your state. Not all CR surgeons are qualified or experienced to do a jpouch. You can get recommendations for good surgeons in your area by visiting www.j-pouch.org and asking on the discussion thread. This is not a surgery to get a local community-type hospital surgeon to do.

Sue
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