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Crohns of the Duodenum- help

We are new to Crohns and to this forum. I am amazed by the tremendous support and information available . Well done!!
My son who is 18 was recently diagnosed with Crohns disease. It has been quite a journey until he was finally diagnosed.
I was wondering if anyone else has had crohns of the duodenum and what treatment protocol was used. It seems that this area is rare with almost no studies available to steer you in the right direction re treatment.
Any help would be appreciated.
My son's worst area was his duodenum. He was put on Prednisone (40mg) and started on 6mp a week later. He was also given a PPI (proton pump inhibitor) that mainly targeted the crohn's in his stomach and duodenum. It also helped protect his stomach against the prednisone. The PPI helped a lot with the nausea, and heart burn like pain. He was on it for probably about 6 months and then was able to go off of it and has not been on it since. He is in full remission and doing very well.

We got zofran (when needed) for nausea. He also needed iron pills because he was anemic. It was a lot of pills in the beginning but once things stabilize, you are able to get rid of most of them.

What really surprised me is that it took a while for things to get totally better. I was never sure if we should even expect him to ever feel normal again. He does, for the most part;) but it took the healing a long time. He slowly got better we had ups and downs but he never got worse than what he was at diagnosis.

New diagnosis is very overwhelming. Sounds like you are on the right path. Let us know how your son is doing. ((((hugs)))))
HI Mom of Johnny!
I am so happy for you that your son is doing well and in remission!! How long was he on the prednisone ( 6 months?) Are you saying that he is no longer on pred, but still on the 6MP. We were given the choice of Remicade or 6MP. Why did you choose 6MP? were there any side effects of the pred? Thanks for your help!!! I am happy to hear that remission is possible.
(((( Hugs back)))))


Hi Pink!

According to the test I had during my last flare it seemed like I had manifestation of crohn in my duodenum even though it was not where the disease was the most severe. The protocol in my case was the same that is applied for crohn management. Had I been a candidate for immunosuppressant (AZA, 6-MP) I assume this would have been the first step into managing the disease. I was instead put on anti-tnf (Humira in my case) and the disease resolved with that and careful diet.

What may make a difference in the way the disease is managed is if there is the presence of stricture (narrowing of the digestive tract) at that level. I'm not an expert on that aspect unfortunately but, as far as I know, if it reaches the point where it leads to chronic obstructive symptoms, then, there might be a need for surgical treatment.
So it's the general classes of medication for crohn that are likely to be prescribed. The ASA is not advised to treat that area so if ever that was suggested... Also, sometimes it will be suggested to use PPI (proton pump inhibitors) to reduce the acid levels but their does not seem to be a consensus regarding it being the best approach as ppi can contribute to collateral side effects (increased risk of c.diff and osteoporosis and fracture). Are you aware if they tested your son for H.Pylori?

As you said, it's not the most common site of affection for the disease so even the surgical management is not so "standardize" if I may say it that way. But there is an array of surgical methods that can be employed if need is too.
My son also has Crohn's in duodenum and like Johnny's mom he was given a PPI (omprezole/prilosec) and started on Imuran (sister drug to 6MP) He was also on the PPI for about 6 months and has not had to take it since.
Pred can have side effects and is generally not a long term drug but used in order to bring inflammation down quickly. We experienced mood swings and moon face but it has been several years since he had a full course of pred. You are generally given pred for and then would need to wean off it (never just quit taking with out the doctors okay) which could take a while If I remember correctly it was 5-6 months before we were completely off Pred.
We switched to another medication LDN and are now back on Imuran (2 days) as inflammation has been creeping back up last few months.
Thank you @ PsychoJane for that info... it seems that my son will be starting with Remicade, and I hope we get good results in 6 months. My son was not tested for H pylori... is this an easy standard test that can be done anywhere? He is supposed to start Remicade in January.. Are you suggesting that this could have contributed to his CD? Thanks!!
@JMrogers4- my son has been on a PPI for the past year and although it helped with nausea it did not reduce the inflammation. Thanks for the info- much appreciated. Is your son leading generally a normal life despite battling chronic illness?
He absolutely is. Plays sports, hangs out with friends and really is a normal teenage boy. There have been a couple of times where he has not felt well enough to participate in something but they have not been many. He has great plans for the future and talks about what college he wants to go to and I don't believe he thinks of too many things are out of his reach just because he has Crohn's.


I guess his GI most likely have ruled it out without even mentioning it.
I don't know if it is directly included in the diagnosis process per say but it would seem logical that it would. I know I was tested for that through the process.
The only reason I mentioned is that it that H.Pylori can be present along with crohn and it can be causing duodenal ulcers. I have to say I don't know how the ulcers from h.pylori and crohn disease will differ in appearance in the digestive tract. Maybe the difference is obvious and what is seen with upper-endoscopy or pill cam allows to them to rule one from the other. My guess is that if he had upper-endoscopy he most likely had biopsies done and that allows to rule out the h.pylori. My guess would be it has been checked otherwise, if it's present, along with crohn, it needs to be treated either way.
Thanks for all your information and support. Very helpful to me especially during this time of so much uncertainty. Hope you and yours will continue to heal...
My son was on Prednisone from October 13-December 31, that includes the taper. So about 2 and a half months. The Dr used the Prednisone to treat the inflammation until the 6mp kicked in. It can take 6mp 3-4 months to start to have an effect. I believe that Remicade starts to work immediately so I don't think that Prednisone needs to be used.

I am not sure why our Dr chose to start with 6mp and not with Remicade. It can have something to do with severity of disease, location, or personal philosophy or experience of the GI. I know another mom (MLP) mentioned that she was at a seminar recently that found if Remicade is used within the first three months of diagnosis it has shown to change the disease course. So it may not be a bad thing to start with Remicade.

There are no easy decisions. ((((Hugs))))) Let us know how things are going. :)