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
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