LDN and Strictures

Hi Everyone

well, I think I might be in a unique position where my doctor is willing to trial me on LDN, but I still have some questions!

My Crohn's is slightly wierd in that I dont often have the raging diarrhea that most have, but because I get strictures and narrowing, i have what feels like constipation. Basically my food goes through very painfully and slowly. I get a bulge out the left side of my abdomen and I often feel full after eating very little. Did I mention the killer indigestion! My food doesnt really get digested either, some times medication even goes through and comes out looking the same?? sorry if that's too much information.

so, Im just wondering if anyone has had any experiences with LDN and relief from strictures? It's just that I thought that strictures were scar tissue and couldnt only be helped with surgery.

Im slowly getting ready to do the SCD properly. Ive pretty much cut everything illegal out of my diet and now all I have to do is go through the stages properly, starting at the beginning, not at the end. I have a problem though in that I cant tolerate probiotics or yoghurt. Im wondering if it's becaue my motility is sooo slow (like 9 hours to get to my bad, where it should take about 4 hours at max).

Anyways, that's my question: Can LDN help with strictures/ narrowing?

Thanks heaps

Jo

Hi Jo, I expect it can only help if the narrowing is due to inflammation as opposed to scar tissue. Someone else may know more but I'd sa once you have scar tissue it cannot be healed?
Where in NZ are you by the way? I've asked my GI (Dunedin) about LDN and he basically laughed at me!

people are sayin that stem cells may have a role in preventing and even healing some scar tissue.. scar tissue? hmmm i dont know. that be awesome.

but right now... scar tissue is there for good till reoved

I would say that it may keep the stricture from being inflamed, but by looking at the photos of the one I had removed, I would have to say it is not going to reduce the thickening that occurs.

The gut gets a thick wall that I am quite sure is not going to change once it has formed that way.

Will it prevent new strictures? I sure hope so. I am kind of depending on it.

Dan

Hmm, okay, I think that helped, lol. I have had moments this year when the stricture/ narrowing was slightly better. Once when I first took milk out of my diet (but that was short lived as soon as I took some antibiotics, sigh). Then I had some relief again when I took all the carbs out of my diet in preperation for SCD. So.....Im kind of hoping that means it's not a permenant fixture on the landscape of my intestines.

I have a contrast xray coming up in a few days, so will add the info from that to the weight of my decision.

i could really do without having any more surgery, but! if it has to be, it has to be. Im guessing maybe the LDN will help prevent further inflamation at the site where the stricture gets removed.

Shazamataz: I have a few doctors. The one who is prepared to perscribe me LDN is in Wellington. She treats me for my adrenal gland problems (they kind of stopped working from all the crap the crohn's put them through). the clinic is called karanga Health and it specialises in treating people with things like hormone imbalances/ Fibromyalgia/ Chronic Fatigue/ thyroid issues with bio-identical pharmacueticals. I actually just asked her if she had heard of LDN (because id been reading about it on this site) and she said no, then asked me if it was something I wanted to try. i was SHOCKED to say the least. there I was preparing myself to go into battle on behalf of my intestines, and my doctor was offering it to me?!?! She has never perscribed it before, so asked me to email her some info about it and find out where i can get it compounded (By Pharmaceutical Compounding NZ Limited in auckland). basically, her reasoning for giving it a go is that it is prescribed at much higher doses with no major side effects, so if i am willing to try it at a fraction of 300mg, then she is prepared to prescribe it! so yeah, that's how i came to be in this situation. She's not my GI. He's in Palmerston north (I get around, lol)

You might be able to find a similar kind of doctor in the dunedin area. i know there are some Dr's in NZ who use LDN to "treat" Autism (from my hours of googling). I'll ask her if she knows of any doctors in the South Island who prescribe it.

Thanks Jo, that would be great. Even if it was someone I could get my GI to speak to. I sent him a pile of information about it and when i saw him soon after he looked at me like I was some kind of lunatic for suggesting it!

Also, what do they do for the adrenal thing? I wondered because I have been doing a very long, slow pred taper as it affects me badly when I reduce my dose. I have had Chronic Fatigue for years and expect that may be an adrenal issue. I read that that compounding place make something called DHEA - you heard of it?

I hope you get some relief soon, and hope you stick around, its nice to have a 'local' on here

O my! The things I could tell you about the adrenal thing! Well, probably the first thing I would suggest is to start googling "Adrenal Fatigue". Adrenal fatigue is a lot like chronic fatigue, except that it is usually acquired by going through chronic/ extreme stress (in my case, having Crohn's/ surgery/ steroid use!). I have a really good book I could lend you if you want, or you might be able to get a copy some how. it's called "adrenal Fatigue, the 21st Centuary Stress Syndrome, by Dr James Wilson.
apart from being on Crohns drugs, Im also on 30mg DHEA, 20mg Hydrocortisone (cortisol), 200mg Progesterone, 120mg Natural Thyroid, 0.05mg Fludrocortisone and 0.5mg Estrogen a day. I was a real mess when my adrenal glands stopped working. Basiccally Im treated the same as an Addison's person.
I would reccomend finding a doctor (GP) who believes in adrenal fatigue, who can do all the right tests and treat you with bio-identical hormones if needed. i started out with a natropath and she was helpful in diagnosing me, but her treatment plan consisted of using diet and mineral/ vitamin supplementation so my body could heal itself! Well, my body is too busy destroying itself for that, lol.
My doctor is awesome, Im so grateful i found her and I have learnt so much.

ask any questions you like. Im happy to do research even, as i find the whole endocrine system (of which the adrenal glands are part of) fascinating!

Thanks for that info Jo I have had Chronic Fatigue for many years prior to having Crohns more recently. the fatigue is worse than anything else and it is now worse. I find I stress VERY easily, I can feel my whole body tensing up and if I have a stressful day (by my standards, probably not by anyone elses standards) I really pay for it the next day.

Do your adrenals eventually heal and start working, or is it a permanent thing?

My doctor said that they will heal, they just need some support for a while. apparantly theyre not ruined, theyre just tired. I was so amazed when I started taking the DHEA. I felt like I had woken up from a coma. My blood test said my DHEA was at 0.08 (should be about 8), it's now up to 7.5. She is also treating me for low thyroid, which has also significantly helped with the fatigue and aches (oh, and the most incrediable brain fog ever!).

Having Crohnic fatigue and crohns is really hard on your body because your body;s natural response to inflamation is to make your adrenal glands pump out more cortisol. But a person with crohic fatigue usually has low cortisol anyway, so they cant deal with imflamatory bowel disease very well. Cortisol is also used to regulate your wake/ sleep cycle. If it is low you feel tired all the time and often have trouble sleeping. it's a vicious cycle. And, cortisol also regulates blood sugars. Some people with CF find they gain weight around their abdomen that they just cant shift, they also get low blood sugars very easily. Salt craving/ low blood pressure/ head rushes is another sign of adrenal fatigue, as the steriod you body makes to regulate the salt in our body is made in the adrenal glands.

Doh! did you notice how i spelt "Crohnic" lol!