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Desperate in New Jersey

:sign0144: Hello All: I am acting as the voice for my 16 year old son, RJ, who was diagnosed with indeterminate colitis but docs were leaning towards UC in December 2009. As we journeyed from one medicine to the next and one hospital stay to the next which consumed a good part of the year this is what was uncovered: horrific allergic reaction to Remicade 1st dose with 105 fevers for 10 days and severe throat swelling and chest tightening with 2nd dose, Humira weekly injections, and now Cimzia with 10mg methotrexate and still on 20mg Prednisone which we have tapered down to 5mg only to be forced into going back up again. We fear we have reached the end of the rope. My doc is considering revisiting Remicade and told us to be on the look out for trials or perhaps we can get a compassion release for stem cell or some other experimental drug. Along this journey my son had very short periods of relief. He developed kidney stones, severe mouth and throat soreness and then the final piece of the puzzle was in June when he had a rectal abscess and was rushed to surgery where at the same time Prednisone did such a number to his face the docs thought he had a staff infection. The docs then formally diagnosed him with Crohn's but I guess it is possible to have both? When I was referred to the forum I was thrilled to read about the promise of stem cell transplantation. I have so many questions to ask about with regard to stem cell transplant, LDN and the benefits of the Elemental diet, SCD Diet, Maker’s diet, the whole gluten subject…. He is severely underweight and of course wants to eat like a 16 year old. I am hoping you can all shed some light on this very mysterious and tricky disease. It has taken its toll on my son as you can imagine at 16 the world is just opening up. His passion is baseball and he is quite good. He has not been back in school since November 2009 and has missed out on countless tournaments, college showcases, Sweet 16’s… life. It’s all very upsetting and frustrating. There is talk of a temporary ileostomy to help rest the colon too…I fear it won’t be temporary…and I worry that his colon might be too far gone as we had also journeyed to Boston children’s in April to discuss the use of Tacrolimus as the docs were shocked to see his colonoscopy slides and thought he was a prime candidate for it. That was when they thought it more to be UC. My family is frightened and confused…any and all input is greatly appreciated. Hoping for some insight and someone RJ might open up to and talk to… ☺ thank you:sign0085:
Stacy (RJ's mom)

Oh…one more puzzle piece. In February of 2007 RJ had viral meningitis. Later he developed vitiligo (a tiny patch on his chin) and several specialists later, a doc diagnosed him as perhaps having VKH instead (Vogt- Koyanagi Harada Syndrome), which mirrors same symptoms as viral meningitis but with definitive development of Vitiligo….docs believe this was the “environmental” piece to developing IBD…. sorry for the lengthy intro!
Dx Dec 2009: Indeterminate colitis/UC? DX June 2010: Crohns
Remicade, Humira, Cimzia, Vancomycin, Flagyl, Cipro, Unisyn
Current Meds: Cimzia, Methotrexate 10mg, Prednisone 20mg, Flagyl, Proctofoam
Supps: Vit D, Fish Oil Multi vitamin,Liquid Cal, Mag, Zinc, VSL #3, Iron, Folic Acid, B12, Calcium Gummies
hi Stacy - a big warm welcome to you (and to RJ if he feels like joining) :)

wow - it certainly has been a bumpy ride for him. life is very unfair sometimes - i guess all we can do is keep trying to fight for something to help us, and never give up hope!

i can comment on a couple of the issues you raise - i'm on LDN myself right now, i'm in around my 3rd month, although have only been on what they call the optimum dose for a number of weeks, so for me it's too soon to tell if it's helping my Crohn's symptoms (i *think* they may be a little better, not sure) but it has certainly helped in other ways so far... my energy levels have improved, i look better, feel stronger, and i've just fought off a viral throat infection in a matter of days, which i'm sure in the past would've gone into a chest infection given my history...

LDN is not easy to come by, but if your son's GI or GP is open towards giving it a go, that would make things a lot more straightforward. however if they say no - and you become convinced you want RJ to try it, don't give up - there are ways of getting it prescribed.

the other thing i can comment on with experience is life with a stoma... i have now had mine since 1986, it was supposed to be temporary but as you mention, sometimes temp becomes permanent, and i will always have it now. it isn't the horrendous prospect it seems sometimes, and i know at his young age he'll have a lot of emotional issues if he has to have one, but the appliances are so reliable and discreet these days that it is always my choice whether the people i'm with know i have one - no-one can tell. he can still do sports, swimming, whatever - with a stoma... and if it could give him some quality of life back, i would recommend you all think seriously about this option.

whichever way things go, you have our support, and there is a wealth of knowledge & experience here.
Hi Dingbat:
This is exactly the kind of info I am looking for...thank you so much for replying...so what are other ways of getting it? haha...I am going to speak with our doc today...again. Also, how come your stoma became permanent...was there too much damage? thx
depending on how things work in your area, you may need a private prescription for LDN, and then may have to seek out a pharmacist which is willing to make it up for the best price... sometimes it's a case of shopping around. but like i say, if one of your docs sanctions it, then you've bypassed a lot of the footwork... we have a LDN subforum here, which might be worth you having a read of... http://www.crohnsforum.com/forumdisplay.php?f=32

if, after you've got all the info you need, you still want to go forward in that direction, let me know and i can put you in touch with an organisation that may be able to give you advice as to how to obtain it locally.

we also have a stoma subforum - also worth lurking through - http://www.crohnsforum.com/forumdisplay.php?f=46

mine became permanent purely because i refused further surgery to have it reversed.. i'd been through enough (3 ops in 3 days, then another 3 ops in the next few years) and i was happy to keep the stoma. of course, there are times it annoys me, and i wish it wasn't there... but mostly i'm grateful to it, as it saved my life.


To save time...Ask Dusty!
Hi, Stacy. Welcome! While my sons crohns journey has been much less dramatic than RJ's, I certainly know how you are feeling! I've read enough on here to know that most with stomas find a great deal of relief with them. I work with a guy who has had one for many years like Ding. If he doesn't tell, no one knows he has it. Glad you joined us! Stick around!
Might I suggest you look in your area. You might find a kids with Crohn's support group for your son. I have heard about them everything is based around the needs of the kids they many times have field trips that are set up specifically to handle the health needs of the kids.
Hi Stacy,
Welcome and sorry to hear that your family has gone through so much.
I have a 16 year old son with Crohn's as well, but as Dexky said, a much less dramatic journey!
My son is on LDN and has been since August of last year, his Crohn's journey started with an abscess / fistula, nausea and diarrhea.
We have had success with LDN and the SCD diet, and also using hyperbaric oxygen therapy. If you have any specific questions I'll be happy to try and answer them.
All the best to you and RJ - you've come to the right place for support for yourself on this journey. (It's hard on us mom's).


Super Moderator
Hi Stacy and :welcome:

I'm so sorry to hear that RJ is going through all this. I will just list some definitions for you that may help clear up the terminology used when diagnosing IBD..........

- Colitis is a term used to describe inflammation of the bowel lining. So it can affect any part of the bowel.

- Crohns Colitis is Crohns that only affects the Large Bowel.

- Ulcerative Colitis is the other type of IBD and only affects the Large Bowel. Inflammation is usually confined to the mucosa (top layer of the bowel)

- Crohns disease can affect you anywhere along the gastrointestinal tract from mouth to anus and inflammation extends through the mucosa and muscle of the bowel.

My daughter had a very rocky and traumatic road to diagnosis with her Ileal Crohns and although she did not require an ostomy the bowel resection she did have not only saved her life but gave it back to her and she has been in remission ever since. I can't comment on the meds or diet as Roo did not need to go down that track post op. I hope you stick around as there is a wealth of information and experience on here. Any questions or concerns please don't hesitate to ask.

Welcome aboard!

All the best, :)


Hi Stacy & RJ
and welcome

I'm sorry I can't answer any of these questions, but a big welcome to our family, glad you found us, lots of friends here for you both, ask RJ to join too, lots of young people his age.
lotsa luv
Joan xxx
Hi Stacy,
I'm in Jersey too (Somerville area). If you are nearby, I have a permanent Ileostomy and if RJ ever wanted to talk to someone or see what its all about, I could show mine off.
Dingbat..thank you! I am so happy I have joined this forum...I only wish I had found it sooner...you certainly dedicate a great deal of time to helping everyone. Truly amazing. I am talking to my doc today about LDN among other things...he is looking for trials for stem cell transfer using placenta. Any ideas about this...I haven't seen it on this forum or not in what I have read as yet.



Hiya Stacy

we do have a thread on Mr Ziggy's Stem Cell Journey, type it into the search up above on blue line, it is very interesting and exciting!

Hi Joe:
Wow...you are close. My son actually goes to Immaculata. I will certainly keep that in mind...right now, as you can imagine, he doesn't even want to hear of it. He is just living in hell as he has not really been out of this situation since end of November. Who are your docs? thx for the offer
Hi Mark:
I hear this from most everyone who has it...but at 16 there is no convincing him of this easily....
thx for the welcome...I love this forum..so happy to have found it.
Hi Genio:
I have found a support group and therapy for him...the trouble is he is feeling so lousy all the time it is tough getting there and he really hasn't warmed up to the idea yet either...
thx for your help
Hi Joan
thx for the welcome...I am so happy to be hear...I followed Ziggy's journey and that is how I was introduced to the forum. Dan alias acg101 referred me. It was destiny. My son and he went to the same trainer...the trainer told him RJ's story...funny how the world works...just meant to be.
Thank you for your input...I do have questions! First I have to become familiar with the SCD Diet...but when I am ...curious as to how your son benefited? How often is the LDN administered? What areas are affected with your son's Crohns? My son still has the seton from the abcess and now a man made fistula...he is on flagyl..was on IV antibiotics for 2 weeks then on oral vancomycin...will it ever heal? Another reason we were considering Tacrolimus since nothing else seems to be working.
Hi Dusty,
Thank you for the clarification...I will be checking in often when I don't completely understand something...I so appreciate all the help and support and only hope that I can do the same for someone in the near future.
Hi Stacy,
My GI doc's are Dr Wiesen from Gastromed in Somerville. My "top gun" specialist was Dr Present in NYC. And my surgeon was Dr Bauer at Mt Sinai.

I know it would be hard for such a young guy to understand, but I'm doing more with my ostomy than I did in the years of being sick. Swimming, running, 1/2 marathon training, hiking, biking, you name it. I sure hope he can avoid it, but it's definitely not the end of the world.
Hi Stacy,

First of all i do hope that you all stay strong throughout this very trying time in your lives.

I myself have been through the mill and hope to get out of it sooner than later.

I now have a permanent ileostomy having had a temporary one and had it reversed only for the disease to explode in my rear end very aggresively so i ended up having it all out but, in hindsight it probably gave me my life back.

I wish you and in particular your son rj a speedy recovery and of course to all his and your family that are all around you.

Big Big Hugs from Ireland to you all

Hi Stacy- and welcome to our forum. I am glad our paths have crossed and hope to be of help for RJ and you through this challenging journey.
So many on this forum were instrumental with helping me through my own journey (in particular Joe CDdad who experienced the surgery few months ahead of me).

Another possible very informative resource is :