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Back in hospital

Well, my son Alex was doing pretty good with the LDN. Started at 1.5 on 1/28 for 5 days and then went to 3mg for 3 days and then 4.5 since that time. He has gained 30 lbs since his resection surgery in December and returned to work a couple weeks ago.

HOWEVER, we had to run to ER last night due to #10+ pain in upper abdomen/chest. Lots of vomiting and unable to eat/drink. After CTscan and blood work, they discovered his white cells are up as well as billyruben (sp?). They think he has gall stones as the scan showed inflamation in gall bladder, bile duct and he has pancreatitis. They are unsure if this is related to his Crohn's, but did say that he is more likely to have this happen becuase of the small bowel resection surgery in December. I was afraid of blockage, stricturing or abscess but I'm not sure this is any less painful; in fact it may be a bit more painful...only he knows the answer to that.

I wanted to let everyone know that the pain meds did work...even though he is taking LDN. They gave him a lot of dilaudid, but it did cut the pain level from agony and feeling like he was dying to a #8. My worst fear when starting LDN is that he would end up in the ER and pain meds would not work at all due to the opiod block. I have had to explain to every doctor what LDN is and why we are using it in the low dose. None of them have heard of Naltrexone used in the low dose form and a couple have asked (before I had a chance to explain) whether he was using for "abuse" (heroin use). Then i explain the reason for low-dose and use for auto-immune diseases. Some still look at me as though they are confused, or maybe it's because I'm just a Mom explaining the use of a drug in a way they have never heard. I'm not sure if it's because they just don't know about it or if they think I'm crazy.

I now have a new dilema. He didn't take the LDN last night and will be here a few more days without it. Then he will have to have gall bladder removed in a couple weeks if there are stones. I'm afraid of what may happen by missing that many doses...but he can't take it now because of the need for pain meds and the potential for a surgical procedure. Has anyone ever missed a couple weeks doses and then started right back on the LDN afterward?

GI doc just left room and told us that the CTscan showed a thickened loop in small bowel and cautioned us against this experimental medicine. She says that the MRI is to see if he has a different disease realted to the bile duct...doesn't sound good at all and she told me not to read about it until we knew for sure if that was something more to worry about. My anxiety level is at MAX level right now. No one should have to go thru this at any age, but especially not a 21yo young man.

I guess we have to take it piece by piece as they give us new information and make decisions based on everything they find. This is just awful...the wait...the worry...the fear of what they may find out, etc. If you pray, please say one for my Alex.

Thanks everyone.
I don't have any advice about the LDN as I am only on day 3 of starting this drug but wanted to let you know that it is quite commom for Crohn's sufferes to had issues with their gallbladder. I had mine out and then a year later my apendix was removed as well, luckily I have avoided bowel resection but know that is in my near future due to stricturing. I know this is easier said than done(my 3 year old also has Crohn's) but try not to stress too much and just be there for your son. You sound like an amazing mother and he will aprreciate your help and support. I am sure others will be along regarding your question with LDN. I will have your son in my thoughts and wish him a speedy recovery.:hug:
I wish I had more to offer, other than prayers, but I ran out of LDN for a couple weeks and no aggravation of symptoms was experienced. However, this is probably a very subjective experience depending on how active the Crohn's is otherwise.

If he's been on it for just over a month, it is possible it hasn't began to take effect, one way or the other; maybe it's too early for him to react negatively? Though, I haven't heard of anyone, personally, that has had problems quitting LDN. I don't think the doctor can blame the LDN for any increase of symptoms. Maybe he needs something stronger in the meantime? LDN can always be tried again, even as an adjunct to most other medicines.
Tracie, My prayers are with you and your son!
I have to agree with mnsun in regards to the LDN, we just barely started to see results after a month so it may not be a long enough time with the LDN. Right now we are in the situation wondering if the LDN is doing enough.
Maybe another drug in the meantime to get him through all the surgery and feeling better. You can always revisit LDN.
I can only imagine the look on the doctors faces as you are explaining to them how LDN works and why he is taking it. I've gotten the same reaction from a few in the medical field asking what is that?
Just got back from running home to grab necessities for our stay here. I hope and pray that this is his gall bladder and stones. The GI doc said the ultrasound was to look for stones from gall bladder and the MRI was to look for a possible additional auto-immune disease that affects the bile ducts/liver called PCS. She told me not to read about it until it was something to worry about, but I had to know so I read a bit about it anyhow. Just based on the minimal amount I read...he would need a liver transplant if that is the real cause of his current symptoms. Not good! So for now we await results and pray that it's just the gall bladder. The GI doc did say that due to the resection, it is somewhat common for someone to develop gall stones. Nothing worse than waiting to find out what's actually wrong and recommended course of treatment.

Thanks to all who have replied. I very much apprecite your insight and support. It means a lot to be able to have people who understand to talk to when you're down.
They found stricturing in my bile ducts in my liver while they were looking at my gallbladder. They say it could be early stages of PSC too. I did have a liver biopsy a few years ago and my bloodwork so far looks good for my liver so my doc doesn't think I need another MRI to see if it has gotten worse since the only treatment is a liver transplant. most people get about 10 years before they need the transplant. I will cross that bridge if it comes. For right now I am not seeing any symptoms so I will not let it get me down. I do hope that with the gallbladdrer being taken care of that your son will start to feel better very soon.
Update: the MRI was clear (Thank God!). But the ultrasound of the gall bladder and duct showed no stones. He has thickening of the walls on his gall bladder, but no stones. The residents came in this morning and shared that info with us and told us they were going to talk to the GI doc about "what next"? The pancreatitis and high enzyme counts are frightening especially since we now know that there are no stones blocking the duct or a sufficient reason for these other things. The pain is still pretty bad, but at least he is not on the floor, hands and knees screaming like he was when we got here. His chest hurts and he is short of breath becuase of the close proximity of those inflammed organs. He is not circulating air in the bottom part of his lungs because the pain is making him take short breaths. The docs allowed clear liquids this morning, but he wants nothing except ice chips. We are waiting to hear from GI doc and surgeons to know more about what they plan to do. Giving him clear liquids is an indicator to me that they do not plan to do any kind of surgery soon....so now we sit and wait.
Glad the MRI was clear. Hope you get answers quickly. Saying prayers for you that everything gets taken care of and he is back home soon.
Alright folks; GI doc just left and said that the numbers from liver and pancreas enzymes are going down which is good. AND she said that there IS inflammation of the gall bladder with evidence of stones and/or sludge and that they will be removing it once the pancreatitis is under control and infection resolved. This will probably happen in a couple weeks.

I feel better hearing all of that, but Alex is still depressed BIGTIME. He is tired and still in pain. I just don't think you can sleep in the hospital. If it's not the noise in the hall, it's the "vampires" coming to suck his blood for testing or PCA getting vitals, nurse, doctors, housekeeping, nutrition and the list goes on. He has a bad back too on top of everything else and the beds in here don't help. Says he feels like he's 90 years old...poor kid. He has been through the ringer and has dealt with it all much better than most 21yo could in my opinion.

Now we just have to get the pain and nausea to go away so he can go home until it's time for the gall bladder to come out.