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9 week update on LDN

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Crohn's Disease
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Posted 7/31/2011 2:15 PM (GMT 0)
Sorry about the delay in updates. So, I wish I came here bearing news about an amazing recovery after more than two months on LDN. However, that is not the case. It's been 9 weeks on LDN and I feel like I'm back at square one. My abscess is hurting and another one formed (or got larger if it was there already). I have blood almost every time I go. My stools aren't very formed. A lot of the time when I go it's just blood and mucous. It's been like this for over a week now. It's really discouraging. I mean I'm still not giving up on it because I want to give it the full 12 weeks before losing hope. I'm hoping that this is jut a little set back now. My 21st birthday is August 20th and all I want for it is to be able to have a beer with my friends without regretting it the next day. At the moment, it doesn't look like that's going to happen.
Posted 7/31/2011 2:38 PM (GMT 0)
Sorry to hear that LDN is not working for you! Have you tried combining it with SCD?

What about rectal medications? Is your disease is in the lower colon? Many have had good luck with the rectal meds.

I hope you are feeling better soon!
Posted 7/31/2011 2:43 PM (GMT 0)
Oh poop sorry to hear its not working for you. I agree with Pmedic that maybe if you combine it with something like SCD diet, maybe the two will get you feeling better. I know most who are on LDN and SCD Diet are having alot of healing with their abcesses and fistulas. Good luck!
Posted 7/31/2011 2:52 PM (GMT 0)
I've tried the SCD diet but it's really hard being at college you know. I really have to try and fully commit to it. Thanks for the advice guys.
Posted 7/31/2011 4:16 PM (GMT 0)
Hi bosnianboy12,
I have to tell you something: LDN is often not enough, you need a maintanance medicine, either a mild one, prescribed for Crohns, or one of the hard guns.

I echo Nanners, many people are changing their diet when using LDN, and this method is also great for many. I don't use other medications than LDN, my LDN keeps my symptoms at a low level, have one - two bathrooms visits every day. No other symptoms.

Also that got better, from 2 visits with loose stools to one every other day with normal poops when I stopped eating starches. There are starches in all kind of bread, in pastas, in rice and in potatoes. There are also starches in processed food. Eat meat, fish, and later, have sallads when you can do so.

LDN is a super medicine, but it still needs time as I also told you in an earlier post, you have only used it for 9 weeks, at least use it with Asacol, or Pentasa or Rowasa (the mild meds) for 3 - 6 more months, don't give in so soon! :-)) // sending a (((((hug))))) all the way from Norway! :-)

http://www.ldn-for-ms.com/

more to make you go on: (read the one from the newspaper)
http://online.ccfa.org/site/TR/Walk/General?pg=informational&fr_id=2608&type=fr_informational&sid=3003
Posted 7/31/2011 7:21 PM (GMT 0)
 Hi, bosnianboy12

 I am sorry to hear of your problems, do not loose hope ! I am also on LDN, for about 5 weeks now, and I have not seen the light at the end of the tunnel yet. I am feeling a little better, but still have to run to the bathroom few times at day, and be careful with my diet. Food is my enemy ! I am an old woman, and have had CD for over 25 yrs. I know what you are suffering.

Have you tried Slippery elm bark, it is helpful for our condition, and may bring you some relief.  Good luck, and give us good news!

_______________________________________________________________________________________________

CD for 25 + yrs. No surgery, but close to it several times. I have many other medical problems, as result of CD. Used Remicade, Humira, 6MP,  but stopped due to severe side effects.

Now taking LDN, vit. D, cod liver oil, calcium, folic acid, 5 mg predn. multivit. & slippery elm bark  ( have an intolerance for mesalamine medication )

Posted 7/31/2011 7:37 PM (GMT 0)
I was so sorry to read this update as your last one was so promising and I had hopped your silence was because you were doing so well.  Will think of you on the 20th having a beer with your mates :)  If it was me I would just go mad for one day and suffer the consequences!  Keep us posted.

hugs

Lesley in NZ

Posted 7/31/2011 8:34 PM (GMT 0)
Thanks everyone for the support. It really means a lot to me. I'm currently on Sulfasalazine as well as a maintenance drug but I don't think it's doing diddly squat. However today I did start the SCD diet again so hopefully that will help. Also, I'm going to see if my doctor will prescribe another maintenance drug. I had an allergic reaction to asacol and colozal didn't work for me. So we shall see I suppose. I believe I did try slippery elm before. I'm not sure if it did much for me. Gah I want to scream right now, but I can't give up. I won't give up. I'll beat this darned disease.
Posted 8/1/2011 8:17 AM (GMT 0)
good on you for not giving up BB - just keep perservering and hopefully you will hit the right combo to put you into remission. I often want to scream -have been known to do just that in the closet with the door closed ;P
Posted 8/1/2011 9:26 PM (GMT 0)
bosnianboy12, you could also go to the yahoo groups and register and look for the group LDN and IBD. There you'll find may ppl that are using LDN and have changed their diet, either to a gluten free diet, or to a starch free diet. (as SCD).
Have you, by the way, got any symptom changes to the worse on LDN? If you have got increased pain or increased diarrhea, you may need to consider if you're having a candida issue. As candida often turns to an overgrowth on LDN as a reaction to a shift in the immune system, I have learned that you need to treat the candida problem before LDN starts to work.

Here's a blogger on LDN and recipes that may suit a SCD'er:
http://www.ldn-for-crohns.com/
Posted 8/1/2011 9:41 PM (GMT 0)
I have been on LDN for quite some time now and it does nothing. 
Posted 8/7/2011 4:18 AM (GMT 0)
My daughter flared when she went off LDN, so we know it has an effect, but it didn't seem to put her into full remission...her symptoms were gone, but her labs were not normal. So she added Pentasa to the LDN and that resulted in completely normal labs. She did have a mild reaction to Asacol years ago  -- extremely bad taste in her mouth. But no problems with Pentasa. So maybe because Pentasa is designed to release differently, you might not react badly to it?

If you are considering changing your diet, it might help to talk to the on campus dietician at the campus cafeteria. My daughter talked to her school's dietician, who invited her to check out all the labels on cans and packaging to make sure there wasn't anything in the food she couldn't eat. Also, they kept a frying pan on hand just for her, so she could ask to have a chicken breast or burger cooked and not have to worry about it being contaminated with gluten or anything else.  

Yet another possibility is to try taking 3 mg of LDN twice a day. There's a lot docs don't know about what should be the proper dosage because it is still being studied. I've seen some posters on LDN sites talk about varying the dosage - taking split doses or higher or lower doses.

Am sorry to hear about the sulfasalazine, because SCD people seem to think it usually works better than Pentasa and Asacol. Are you on a high enough dosage: the following post from an SCDer suggests working up to about 4 grams daily: http://www.scdiet.org/4faq/azulfidine.html   

      

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