Mother of son new to Crohn's and LDN

[TracieD]

Hi all - My son, 20 yrs old, was diagnosed 11/2012 with suspected Crohn's when admitted to the hospital for abscess/fistula in the TI region. They placed a drain in the abscess and he was released from the hospital a week later. On 12/5 we rushed back to ER with debilitating pain and found with a CT scan that the abscess had returned. They placed another drain and after a week of pain that was not going away on 12/12 he had to go into surgery. They removed the abscess and a little more than a foot of his small intestine and did re-section. Diagnosis confirmed: Crohn's. He was released on 12/20 and we did our best to celebrate the holidays together as a family. On 12/28, we returned to the ER with upper abdominal/chest pain. He was taking Dilaudid for the pain from surgery and I think that combined with eating WAY TOO MUCH sugar from Christmas cookies, etc....through him into a flare. Being so new to everything, we weren't sure was a "flare" even consisted of besides the infamous "D". He was admitted and released from the hospital that very same day after making about 8 trips to the toilet.

After surgery, the doctors didn't discuss options with us for treatment. They simply decided that Remicade was the treatment to be used and let us know that they would be applying for the financial assistance and insurance coverage, etc. Being 20yrs old, he was depressed and angry at the diagnosis, mad about the scar on his stomach, and now terrified at the idea of having to undergo IV infusions of a medication for which the side effects are pages long and inlcude potential risk of cancer. He had reached the ulitmate low with so many things to accept and change at the ripe age of almost 21. Saddness was unbearable. I started reading all the posts on this site and discovered LDN. I have read all the research from each website I found and every post from current members who take it and decided to talk with him about it before they tried the Remicade.

The range of emotions he was displaying were stubborness, anger, frustration, extreme saddness and a bit of denial. This newfound diagnosis was causing him to be unable to celebrate his 21st Birthday the way all his other 21yr old friends did on theirs (drinking too much alcohol). I was hesitant to let him start on the LDN right away because I was unsure of the choices he would make. He chose wisely and refrained from having any alcohol. We went out to eat instead and he olny suffered a bit from that.
He just started LDN at 1.5mg on 1/28. He took that dose for 3 nights straight and then missed a dose on 1/31 because he fell asleep too early. On 2/1, he started with 3.0mg and took it again last night.

The worst side-effect thus far is that he wakes up between 2:30am and 3am and cannot go back to sleep. I tried adding melatonin last night...didn't work. He was up at 2:36am again. He has more abdominal pain in the AM, but it has a tendency to subside after a couple trips to the bathroom. He has been eating too much sugar lately and not really being super careful with the rest of his diet. BUT, I'm very proud to say that he quit chewing tobacco, smoking cigarettes and hasn't touched any alcohol since we found out on 11/21. That in and of itself was huge, so I have a really hard time getting on him about candy and diet. He's a fantastic kid, but had developed some bad habits and is now faced with enormous changes to his lifestyle that are difficult to say the least.

The thing that concerns me most about LDN and that I could use some information about:
1) When colonoscopy is needed...do you stop the LDN for a few days so the anesthesia/pain meds can work?
2) If (God forbid) the LDN does not work for him at all and we have to switch to their choice of meds...how long does it take to leave the system entirely.
3) My worst fear is that he will wake me up in the middle of the night unable to move due to pain in his stomach and that I have helped him obtain medicine that will prevent pain meds from working. I am scared to death of this and it haunts me daily. Does anyone know exactly how long it would take for pain meds to actually work if something bad does happen? I break down bad when I have to watch him suffer...he and my daughter are my life. I hurt when he hurts and we both end up sick.

Thanks all for any advice you may have.
Tracie

 

[Kev]

Tracie

Sorry to hear we have another member of the Crohns Club. Membership does not come with any privileges. But, there is hope. I personally think (but what do I know) that you have both made a very sound choice by going with LDN. It has offered me a very 'good' life these past 5+ years. It hasn't given me the life I had before Crohns back, but there isn't any drug/treatment on Earth that I'm aware of that will.

OK, here are some thoughts. Your son, "X" (if you mentioned his name, I missed it) has been presented with a lot to deal with. There is a process he has to go through. It is similar to other life altering events. It can't be rushed, he will have to get thru the various stages himself. I recall feeling terrified, angry, frustrated, ashamed. As if I had done something wrong. Acceptance came with time, then a very strong urge to fight this disease with everything I had. That gave me the strength to get thru the bad times. I'm sure he will get there too. He has shown remarkable maturity given his age. Refraining from drinking, smoking, etc., are very mature actions. As for diet, it is vital that he adopt and adhere to a 'sensible' diet for persons with any form of IBD. This doesn't have to be a 'permanent' thing. He just needs to watch what goes in until his body is in maintenance or remission. Then, he can relax the rules a bit. In all areas. I can eat pretty much anything at this stage. I even occasionally take the odd drink. But my condition has been stable since 2007, thanks to good old LDN.

Couple of things... get to the 4.5 mg dosage and stay there, no matter what, for the next 3 months. If you do that, and things haven't done a 180 by then, then there is a chance that LDN won't work for him (if you have ruled out a Candida overgrowth). And you are 100% sure the LDN is the right type, properly and FRESHLY compounded. OK?

As for sleep disruption, I've heard others mention it. I never had any. It might be the LDN, it could be the diagnosis. Your son has a lot of stuff on his mind, enough to cost anyone a good nites sleep. Either way, if it is a side effect, is it worth tossing out what might be the best option out there? Only your son can make that call.

As for procedures, scopes, anesthetic, etc, I never discontinued my LDN for any of them and never had a problem. My understanding is that it does its thing and is gone in 4 hours. I take mine at bedtime, and have had scopes 1st thing next day.

As for pain.... the only time I've been pain free was while under anesthetic during an operation. If it isn't the disease, the passage of material thru inflamed or scarred areas, the movement of the tract itself as it moves material thru, the thickened areas from tissue buildup... well, the list of what causes the pain goes on and on. Some find medicinal marijuana helps. I don't know of anything non addictive that you could take in reasonable doses yet still function, and some pain killers do a number on the tract itself... Perhaps the only thing worse than constant diarrhea is constipation. And it can be more dangerous. So, you will need to consider what if any pain management will work. Odd thing about pain. Though mine is daily (not constantly, continuously or even consistently) I got to a point years ago where I just acclimated to it. Got so I hardly notice it. Except for the real bad ones. I think it is like exercising. The more you do it, the easier it becomes. Do you know what I mean? I don't want to give you the wrong idea... it isn't a macho thing, or anything like that. It is amazing what the body can get accustomed to, and without "chemicals".

 

[mnsun]

I would reiterate Kevin's thoughts on LDN's short term effects. I had a spell of joint pain, and I took hydrocodone about 8 hrs after LDN with no problems. I think David posted that LDN wears off its opiate antagonist effects in 3-4 hrs.

My opinion, only based purely on my experience with a milder case of crohns, is that alcohol isn't the worst thing to consume as long as it is less than probably 3/4 beers (not sure on liquor, some say clear multi-distilled stuff--like vodka--might be RELATIVELY better for Crohns as long as you don't overdo it). I stick with hoppy ales (ie., sierra nevada), not run-of-the-mill domestic lagers which cause me more problems.

Smoking/chewing definitely is bad for crohns, and that is a tremendous first step. Unfortunately, candy/sugar is the next step--in my opinion--to nearly completely eliminate, other than honey/stevia sweetened products on occasion. Rarely, I have stuff sweetened with cane sugar with no problems. I am of the opinion that sugars/refined carbs feed harmful bacteria in the long run, and it is best to COMPLETELY eliminate them for a few weeks before integrating the above alternatives on occasion.

See my nutritional/supplemental approach under: Success Stories>MY Supps for MY Dis-Ease

 

[TracieD]

Thanks so much Kev and Mnsun!

He is sleeping! All the way thru the night...two nights in a row...hallelujah!

Mnsun - thank you for your earlier message providing the name of a hollistic doctor from Indiana. We drove 3 hours to see him and it was worth the trip. He prescribed the LDN without question after hearing our story he literally spent over an hour just talking to my son and I about multiple different things. He referred us to the pharmacy near his office that actually compounds the LDN for some of his other patients. (and Kev - it's fresh...and the filler is fast-release - I asked when I got there to be sure). They have glass walls so you can see them all working to make different medicines while you wait. It was pretty cool actually - reminded me of a premie-baby nursery where you have to put your arms thru rubber sleeves to prevent germ/contamination. We have a 1 year standing Rx for the LDN and they will make and ship to us for $5 on a monthly basis.

We visited his GI doc before going to the hollistic doc in Indi. She had never heard of LDN and literally looked it up on one of her medical search engines before coming into the room. I explained to her that this was something we simply wanted to try out for 3 months before going on a medicine that comes with so many potential risks not to mention the $60K annual cost. I told her that I was not asking her to prescribe it, but simply asking if she would continue to treat him as his GI doc for local treatment, required tests and monitor progress (or God forbid, lack there of). She agreed, but it came with a speech to my son about the importance of preserving the small bowel and how important it is not to treat this as something that will simply "go away". Also that he could die if they have to remove too much due to not receiving proper treatment, etc. Also, she said the Penn State study couldn't even be considered a study because there were not enough people tested and that there was too little information available regarding LDN research for her to even consider it or give any advice. She had told him at least 10 times that he is 75% more likely to need additional surgery due to the fact that he had to have it already. I know the risks are higher for him, but can anyone concentrate on the 25% chance that he won't have to go through that again?...sigh.

I let my son (Alex) decide which form of treatment he wanted to pursue after seeing each doctor and hearing what they had to say along with all the information I had gathered about LDN from my research. My personal opinion is this; the fact that his GI doc had never even heard of LDN is so sad to me. There are so many people out there who blindly follow the path of doing/taking whatever their docs tell them and do no research. Why would anyone take a medicine that has such dangerous risks when there is something else available with essentially no risks that just might work and costs virtually nothing compared to the alternative? These are doctors, they are not God; and that is why they call it "practicing" medicine. They are not always right. I pray daily for Alex and that the LDN will do for him what it has done for many others with Auto-immune disorders. When I start to become afraid of "what might happen", I simply remind myself of all the research I did and that if there weren't promise in it's benefit; they would not be doing a third study to test it and that the 67% success rate in the previous study wasn't something that was made up. It literally helped those people and can help my son as well.

Today, I am thankful that Alex is doing a 1000 times better than 2 months ago AND that he is still asleep while I type this message

Thanks to you both in a big way!
Tracie

 

[Tesscorm]

I hope your son continues to improve with LDN. I was hoping that my son could try LDN before moving to the other meds but, unfortunately, his GI gave him the same speech and has scared him of the risks of not using the other meds. As I also have the same concerns you shared about what 'could' happen... I was not comfortable 'convincing' my son to go against his GIs recommendation. :ymad:

I am so glad he is doing so much better and I hope it continues for a long time!

 

[Johnnysmom]

This is such a difficult decision and I have the sincerest respect for anyone that has to face these issues.

I think Dr.'s aren't willing to get behind LDN is because there just isn't enough research yet. When you have a patient that has tried everything else and has run out of options it is much easier to give LDN a try because you have nothing to lose. But when you have a proven alternative I think it is hard for GI's to overlook that and try something that may or may not work.

I understand your feelings though because there have been people who have found success. I would just want my son very closely monitored and have a plan ready if LDN doesn't work. remission is more difficult to achieve if things are able to get worse and surgery will be more difficult as well if it comes to that. Getting this diagnosis is so overwhelming, it sounds like he is handling it very well so far.

Praying all goes well with LDN. Keep us updated.

((((((Hugs)))))))

 

[mnsun]

Yeah, I had a resection at the terminal ileum back in 04. At the time they told me taking Pentasa/Imuran as prescribed still kept my chances of having an additional surgery within 5 years as, something like, a 60% probability. That irked me. I mean, what kind of treatment and odds are those?

However, LDN is not a sure thing--as we all know--and I tend to view it as a supplement to a decent diet. I believe it was posted recently that the recommended dose may actually be 3.5-4mg. Whatever works. I'm sure all this is very disorienting after just being diagnosed in Nov. I know it took me months to wean myself off of soda addiction. Changes take time and eventually your taste buds do too. I hope all the best for you and your son.

 

[Kev]

Couple of thoughts. And these are just general observations/opinions, so please forgive if it feels like I'm hijacking this thread. First off, we (patients/sufferers/family) RELY on the doctors (I will omit the word professional for the moment, although most doctors consider themselves professionals... I think people need to earn that title) to be informed (if not expert) in their respective 'specialty'. Yet again and again we read in posts like this one that a GI had never heard of LDN. Dr Smiths original study was written up in the American Journal of Gastro-enterolgy in early 07. Here we are, nearly 6 years later, and GI's remain in the dark (or stuck in the dark ages) about it. Obviously, there are many out there who simply aren't doing enough to stay current in their chosen field. Talk about failure to provide due diligence. It is a warning bell that these doctors, in whose hands we are entrusting our very lives, are letting us down. OK, that covers the ones whose heads are buried in the sand. (I oh so wanted to use another 4 letter word that starts with s, but I restrained myself). Then there are those 'doctors' who we approach with the info. We have done the preliminary legwork for them. All they have to do is enough research for them to be brought up to speed, and form an unbiased opinion of all the pros N cons of LDN. Then make a recommendation. Simple, right? But time and time again what we hear is less than an unbiased response. It's more of a knee jerk reaction based on innuendo, or visibly a less than 100% grasp of all the facts. For example, Dr Jill Smiths 1st study (not funded by big pharma) was on a mere 27 (+/-) patients. That is not a lot... but there has been a 2nd study (I don't know the number of patients in that one) then a 3rd focusing on pediatric Crohns. Each subsequent study confirmed the findings of it predecessor. That LDN is a safe, effective way to treat IBD and is shown to promote mucosal healing. And with only mild, potential side effects to deal with. And a success rate that compares to any other available drug. I have always tried to be fair, impartial and unbiased in my representation of the facts behind LDN. Why? Simply because the person reading what I write may be betting their life on it. Apparently, that means more to me than it does with many doctors.

I'm not trying to pressure anyone into trying LDN. I'm merely trying to educate folks who are battling this disease to some facts that EVEN their trusty GI doesn't know. Or appear to know. LDN has been the subject of multiple studies. All consistently concluded it is a safe, effective treatment. There have been no studies refuting that or contra-indicating it. Taking any available drug to treat IBD carries with it some risk; but in a head to head comparison, it is blatantly obvious which carries the least risk. Why so many supposedly 'expert in their field' specialists remain in the dark on the subject of LDN so many years after it was introduced as a viable treatment is the $64 question. Could it be that these "professionals" relied solely on the sales folks of the big pharmaceutical companies for their 'education' in these areas? I don't think these 'reps' can add MD to their business cards. Maybe BSc (and we know what the BS stands for)? Yet those same doctors will turn a deaf ear to the information that we 'patients'... we, those folks fighting for our lives.. what stake do we have in this.. bring to them. Folks, if you are sitting on the fence, that is your right. It is your life. But if you've been placed there... intimidated there.. frightened there.. by your own doctor.. then there is something dreadfully wrong with this picture. And I urge you to take a step back... do your own homework.. make your own decision, pro or con.

OK, apologies again for the hijack, the rant, the soapboxing. But when I read of good people either being 'blackmailed' or 'neglected' (since I consider not taking the time to make oneself aware of the facts as medical negligence) by their doctors.. well it just pisses me off big time. LDN works. It works just as well as any other med. It is significantly safer than any other drug. These statements are as accurate as I can make them. Unfortunately, it really is as simple as that. Case closed.

 

[TracieD]

Thanks everyone. It's so nice to have people to talk to that understand.

I wouldn't have pursued the LDN so hard had he not already been doing well. He has gained 25lbs back since his surgery mid-December. There are days when I'm scared of what might happen, but remind myself...I would be just as scared of that very same thing regardless of the meds he was taking to treat his condition. At least with the LDN, if it doesn't work for him as it has for others...there are no substantial side effects.

He's going to 4.5mg tonight, so I'll pray (a lot), sleep a little and give you all an update soon.

 

[TracieD]

You crack me up Kev...I was mad too when I discovered LDN right here on this forum and realized if I hadn't read about it my son would be getting Remicade right now. People need to educate themselves and realize that these docs are just "practicing" medicine. They are not always right. I am not so stubborn to refuse to listen to their opinions and advice, but I'm also not so naive to think that I shouldn't do my own research to develop an opinion and/or decision based on all the facts available. Deep breaths buddy! - I know, it's hard

Greed is ugly and if LDN cost $10,000 per pill; I'm guessing it would have been FDA tested and approved a very long time ago.

 

[Jmrogers4]

I'm guessing I need to come up with a new name for Jack's GI instead of doctor as he is the one that brought up LDN and suggested giving it a try before biologics.
He had upper and lower scopes this morning and has been on LDN since July 1. Colon, Large intestine, TI, portion of small instestine past TI he could get to, stomach, esophagus all looked healthy, comment was made looks like crohn's was never present. He was severely ulcerated and inflammed 3 years ago at diagnosis. We are awaiting biopsies to come back 48-72 hours. I think they will look good (just my opinion). We are looking at doing a pill cam to check the rest of the small intestine as we can't figure out why Jack is not gaining weight. I think that will come back clear as well.
I think he needs to get more calories in him as he eats like a bird and is full very quickly but it seems at this point LDN is doing a fabulous job.

 

[TracieD]

Jacqui you are very fortunate to have a GI doc for your son that is unafraid to prescribe an off-patent med. That's awesome that he/she took the time to learn about it and suggest it when there are so many other docs out there that won't simply due to the fear of referral loss from others. Most will not prescribe it because it because it doesn't fall into the "standard care" category.
I hope lil Jack's results are flawless and that he continues to do well.

 

[Kev]

Glad to hear of his progress. If the biopsies show microscopic evidence of Crohns, don't be surprised. Mine still shows up in biopsies, which is why I prefer not to use the term 'remission'. Some kids are just picky eaters, AND it is possible that his stomach has simply shrunk because the Crohns inhibited his appetite in the past. Faced with that, he may feel 'full' after eating only small amounts. Dietary supplements might be a help, liquid nutrition, that sort of thing. At birth, my youngest suffered from a rare condition called 'failure to thrive'. He lost a great deal of his birth weight, and ended up in neo-natal intensive care. It was a very scary time. But, with an augmented diet, he bounced right back. Another possibility is that he has absorption issues stemming from accumulated scar tissue. But the pill cam should show that, and the augmented diet should help with that (I think). See if you can meet with a dietician or nutritionist to discuss what foods might pack a few extra pounds on him. In the old days, parents/grandparents would feed us milkshakes, egg nogs, etc., to fatten us up. I raised to kids solo, and held down a very demanding job.. I didn't have a lot of spare time available to deal with picky eaters, so we had a rule in our house. Very simple one. Clean your plate, you got dessert. Not finish, no problem.. but no dessert. Clean your plate, and go for 2nd helpings, if you can't finish 2nds, you still could have dessert. This way I was assured they'd eat a good meal... there was no force feeding... they got dessert, and they could eat (or try to) as much as they wanted. I didn't realize it at the time, but I was creating two eating machines. They (especially in their teen years) almost ate me out of house N home. Ooops, the train has gone off its tracks again.

 

[Jmrogers4]

Kev, only problem is I have a strange kid who doesn't like dessert.
Biopsies are back - reactive lymphoid aggregates so like you said microscopic as he still has Crohn's just not currently super active. Blood looks good - all within normal range, calprotectin normal.
So agreed to keep him on LDN, didn't see a reason to go to biologics wants to add Pentasa, I'm okay with that and I think he feels better about the LDN, apparently he was just at some conference where the other GIs were very negative about it and he wasn't seeing success with his other patients on it.
He also is putting him on 8 bottles of Peptide (supplement) a day and hubby and I told him it didn't matter what it tasted like he would get used to it but this is just like his other medicine prescribed by doctor and he has to do it. He also put him on periactin (appetite stimulate) to hopefully jump start his appetite.
I think you are probably somewhat correct and his stomach is small as he went so long associating eating with pain that he just quit eating and we just need to get his body used to food again.

 

[David]

Jacqui, one thing to also look at would be magnesium. People with Crohn's are commonly deficient and deficiency can cause lack of appetite in some people and failure to thrive in children. That your son was also on Omeprezole until recently which can ALSO cause magnesium deficiency makes me wonder doubly.

Tracie, thank you for sharing you and your son's story. Please keep us updated

 

[Kev]

OK, substitute junk food, candy, whatever he likes/wants, for dessert. Magnesium was a good point. But the basic goal is to have him not associate food with pain, rather with pleasure. You aren't trying to formulate a life long healthy diet, just kickstart his appetite. Sometimes we are so focused on the obstacle, we overlook the workaround.

 

[Jmrogers4]

Thanks Kev, so brussel sprouts :ybiggrin: he really likes brussel sprouts. I don't know if it was us or his doctor but he definitely seems more I guess for lack of a better term in tune with eating and conscious that he needs to eat more and seems to be trying - given we are only on day 2 but I will take it one day at a time