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I have UC, my son has Crohn's

It all started for us when my son Keith was 12. He had a per-rectal abscess that was drained in the hospital and just would not heal. He was dropping 2 - 5 pounds each week and I was panicking . I took him to several different doctors a week trying to find out what was going on. The main reaction I got was that I was simply impatient for him to heal and needed to relax. I finally saw a wound care specialist who took the time to ask for a life history. He thought it sounded like "Crohn's disease" and that I should find a Pediatric GI for Keith. "Crohn's?" I thought? WTH is Crohn's? I went home and started my research...

Keith is 17 now... his peri-rectal abscess was actually a fistula that has never fully healed despite a year on Remicade when he was 13. He's been on Asacol, 6mp, Predisone and Remicade. None of it has brought him relief. We started doing the SCD diet 4 months ago and nearly all of his symptoms have disappeared... except for the fistulas.

His GI wanted to start him on Humira for the fistulas and I have been reluctant. He offered to put Keith on IV antibiotics to dry up the fistulas (they were draining pretty heavily) but that really backfired. After 3 weeks of antibiotics he had another peri-rectal abscess that had to be drained. Because he got the abscess while on the antibiotics they admitted him. He went through 10 days of Hell. At one point there were 28 puncture marks from IV attemps, blood draws, etc. He had another full scope that showed incredible improvement in his stomach (no longer herniated!), upper and lower bowels. It all looked great except for that peri-rectal area... ugh. Biopsies showed some colitis in his bowels, but the pictures were worth 1000 words. No longer were they riddled with ulcers!

Still... his white blood count was dropping, he was having fever spikes and the abscess was starting to fill again. It turned out that he was one of those rare cases when long term antibiotics cause bone marrow to stop producing white blood cells and cause fever spikes. :ybatty: New antibiotics, a shot to encourage the bone marrow to start producing white blood cells again, another abscess drainage (this time under sedation) and we were on the right track...

Thankfully the Infectious Disease doc said no Humira for Keith until he's been infection free for 30 days, so his GI didn't start it before we left the hospital. Even better, while there one of the Ped Dr.s on call happened to know about LDN and prescribed it for Keith. He has an Integrative medicine office, so we're both getting doctors with them. I'm not sure what to do about the GI doctor... I like him personally, but we're on such different pages about how to care for Keith. He's all about Humira and I can't see why we'd do such a thing when Keith's obviously healing and improving without it. I'm hoping the LDN will help his fistulas close.

CHAPTER 2 (honestly.. this is long!)

I wasn't diagnosed with UC until Keith had been diagnosed with Crohn's for a few years. I was looking washed out and Keith's doctor asked why. I explained that my internal hemorrhoids had been bleeding non stop for a few weeks. He suggested I get rechecked for UC/Crohn's since we had a diagnosis in the family. Lo and behold... I don't have internal hemorrhoids! Lucky me, I have UC. I've been terrible at taking care of myself. I find that as long as I eat the SCD diet and don't eat the things I know I can't I'm okay... but now my kidneys aren't functioning as well as they used to. My Kidney specialist says it's probably not the cysts in my kidneys, over the last few years the growth has been minimal. (Tiny cheer!) Of course, he wants me to see someone about my UC... so I'm seeing someone in the same office as my son will be.

Right now we're in limbo, waiting to see the new doctors, hoping our decision to avoid Humira is the correct one.



Punctuation Impaired
:welcome: To the forum Rhonda and son:)

There a few people here who have gone the LDN route. I hope they can share some insight with you..
Your in a hard position as a parent and now a patient.
I'm glad your son has had so much success with the SCD diet. That diet seems to take a lot of will power to do.
Good luck to you both. Keep us updated with your progress.

My Butt Hurts

Ugh - you have an awful time girl!
Welcome to the forum - hopefully you feel a teeny bit better just getting your story out. Glad the SCD seems to be working for most symptoms, too bad it's not working on all of them.
I had one perianal fistula, and had it removed surgically. It came back (or another one started in the same spot) and since I have been on Humira which then changed to Remicade, I haven't had a problem with it at all (it's been 1 year now).
I wonder if the Remicade would help him with the fistulas now that the SCD is helping with the rest of him? Is LDN supposed to help with fistulas? I haven't heard of that side of it.
Anyways - good luck with everything.

My Butt Hurts

Peaches said:
We have several people here that are pretty knowledgeable with LDN - I'm thinking about DanB - but not sure how often he is on anymore. Maybe he will pop in and make a comment.
Yeah - DBergy is what he goes by I think? Kev has also been on LDN, and KatieSue for a bit. Might be worth searching their threads in an advanced search.
Thanks, I'll try that!

BTW, Peaches.. your avatar reminds me of a time, roughly a year ago when I ordered Chinese take-out. My name is Rhonda Roman. When I gave it to the gentleman taking my phone order he was furious! He screamed "You Wonda Woman? You telling me you Wonda Woman? I had to suppress a giggle as I slowly spelled my name out for him. Still... I like to think, "why yes, I AM Wonder Woman!"
Thanks! :ycool: He's a great son. I'm always impressed by how well he handles all of this garbage.

I'm off to find the Limerick thread... and.. yeah, it occurred to me that maybe, just maybe Farm was a Keith. Oh.. Farm boy... *smirk*
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Welcome to the forum Rhonda.

I think LDN is one of the best treatments for Crohn's, when it works. Since it works about 75% of the time, odds are good it will work for any given person.

There are many LDN posts here so I will not get into to many details, but LDN has no long term side effects, and the short term ones are insomnia and vivid dreams.

It protects you from other autoimmune diseases, and Cancer. Instead of suppressing the immune system, it boosts it or makes it more normal depending on who you ask.

I have been using it for two years, and I am happy with the results.

Thanks Dan. I'm hoping that being on the SCD diet will increase his success chances with the LDN. I did find several of your posts about LDN with the search function. It was encouraging to hear good things. I'm feeling pretty positive about it.


Captain Insaneo
Rhonda said:
Thanks! :ycool: He's a great son. I'm always impressed by how well he handles all of this garbage.

I'm off to find the Limerick thread... and.. yeah, it occurred to me that maybe, just maybe Farm was a Keith. Oh.. Farm boy... *smirk*
:) I am, but everyone calls me Farm!

You son sounds very strong and I know he will be fine soon.