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crohns of the duodenum

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Posted 1/12/2009 4:40 PM (GMT 0)
Hi

I am new to this site and I am looking to hear from anyone else who has crohns of the duodenum. I have been diagonised with Crohns for the last 2 yrs

I have fistulating Crohns in my lower bowel and am currently on Asacol 400mg 6 tablets a day and Azithioprine 150mg aday and nexium 40 mg tablets once a day. I also take Motilium 10 mg tablets PRN to aid the acid reflux that I get.

I have been told by my specialist that it is very rare to get Crohns in the duodenum and cant say what may happen if it gets really bad. I suffer from bad acid reflux due to this and it has been quite hard going recently.

Has any one out there with the same condition. If so can you let me know what helps and what to expect

Thanks

 

Posted 1/12/2009 8:56 PM (GMT 0)
I had cd in my duodenum for years. It was excruciating, especially after eating. After my TI resection, the cd in duodenum settled down. My GI said sometimes after surgery of largest CD area in intestines, the other cd areas settle down on their own. Thankfully, I haven't had a prob. with duodenum since.

I highly suggest you start a strong multi probiotic. It will help with the inflammation and ulceration in the duodenum.

Best wishes.
Posted 1/13/2009 2:35 PM (GMT 0)
Thanks for sharing that with me. I am mostly sick late a night at the moment and have constant what I call the "gases" bubbling away all day in my throat.. Will give the multi probiotic ago as the other drugs are not working to control the inflammation and ulceration. Been on omaprozole for 2 yrs but that doesn't help any more. The nexium worked for a week but then the symtoms came back.

Thanks again
Posted 1/13/2009 2:39 PM (GMT 0)
Sometimes I have had to change my proton pump inhibitors or increase them when they have quit working. You might want to talk to your doc about upping or changing your meds. Good luck!
Posted 1/13/2009 3:01 PM (GMT 0)
thanks for that. Seeming my specialist next week and having an endoscopy to see what is happening in the duodenum.
Posted 1/13/2009 5:29 PM (GMT 0)
My doctor thinks I have crohn's in my stomach area... ulcers. I have had vomiting & horrendous pain after eating. He put me on the prilosec script too, but vomiting happened again & pain continued. He then put me on sucralfate & that has helped immensely. You may want to suggest that. It coats the stomach before you eat. I couldn't eat without it.
Posted 1/13/2009 9:17 PM (GMT 0)
Hi. Thanks for your input as well. Will ask about this next week when I see doctor.
Posted 1/14/2009 3:02 AM (GMT 0)
Have it in the duodenum as well. Mine seemed to settle down after the resection too. However, I still take my nexium and added ginger to my diet when it is NOT acting up. I never had the vomiting, nausea, reflux...just an internal fire pit 24/7. Even Ketchup would burn! You would think I had guzzled wasabi or texas pete! Also, cut my sugar intake wayyyyy back. Hope you feel better soon.
Posted 1/14/2009 10:06 AM (GMT 0)
Thanks for that info. Will give ginger a try. The vomitting I get is bile only. Never food. Even if I have just eaten. Its mad. Wish I had been a member of this site a long time ago. felt so lonely some times living with CD. My wife is so supportive but hearing from you guys and girls, has helped me no end. Thanks
Posted 1/14/2009 11:39 AM (GMT 0)
I actually vomit, so I am a bit different than you Yoda. Has your GI considered bile reflux?

I still have not actually been diagnosed. My PCP thinks I have crohn's, I go back to my GI today. Let's hope she has some ideas about what is causing all my problems. ; )
Posted 1/14/2009 1:34 PM (GMT 0)
Good luck for today. I will let you know what happens next week when I have another endoscopy to see what is happening.I was diagonised with CD of the duodenum after my last endoscopy when they took a biopsy. Hope you get good news turn
Posted 1/14/2009 3:17 PM (GMT 0)
i have crohn's in my duodenum and jejunum as well as my proximal ileum. no terminal ileum. that is supposed to be weird as well. my symptoms are frequent thin yellow stools and intractible pain. so much so that i am trying to have a celiac plexus blocked because even narcotics do not work.
good luck
Posted 1/14/2009 3:47 PM (GMT 0)
this is sooo weird because I was just talking to my mom the other day about how she read crohn's in the duodenum is very rare..and i of course have it lol..but what was scary was that our doctor never told me this! he didn't even mention it or act nervous about it! and what is even more strange is that you mention Yoda, how you are sick late at night...i go to bed and wake up in the middle of the night sooooo sick to my stomach i almost throw up every time! my GI put me on nexium and it worked for a few weeks, just like u said it did for u, and now I'm having the nausea again...i didn't know it had anything to do with my duodenitis! i think i should get another GI or atleast a second opinion! thanks for posting this!!!!
Posted 1/14/2009 9:53 PM (GMT 0)
That's funny.... when the vomiting started for me, it would wake me up at like 2 in the morning. Bam! Wake up & run to the toilet. No reflux or anything like that. I haven't noticed reflux. Then it started to happen right after eating. I would eat, and up it would come. One day, sorry to be gross, each time I vomited, it was a different meal. I know that's weird & I don't even know how to explain it. I just remember puking as a kid & when it would come up it would be all mixed together with what I had eaten for the last while, but this time each time I got sick, I could see the food & it went back to dinner the night before. Crazy.

The GI appt. went okay today. She's confused & so am I. I am still having blood & mucus in my stool. LOTS of abdominal pain. Upper center ("epigastric" as my doctor would call it) pain after eating. Also directly on the left side, but I also have a rib problem so who knows what's causing that. But it does seem to happen a lot after eating like the center pain. I also get a cramping (like someone reaching in my stomach, just above my belly button, and just squeezes). It's horrible. More pelvic pain, but am confused as to the cause of that pain as well. My PCP thinks that could be bowel pain as well, but it's also right near my ovaries & I have had lots of problems with ovarian cysts (although I am now on BCP so I am not supposed to get any).

My PCP put me on prilosec in the AM & then sucralfate before eating. Prilosec didn't do much, but the sucralfate helped, I think. Has anyone else been on that?

Anyway, I have an EGD tomorrow. They are going to do the promethsius (sp?) test as well. She said if it comes back negative, then I do NOT have crohn's disease. If it comes back positive either way, UC or CD, then they are onto something. She still is not thinking IBD, although my PCP does. I am confused. Still. Again.

I am having an endoscopic ultrasound soon as well, (since my brother & grandmother passed from pancreatic cancer, nothing to do with checking anything other than cancer screening). That was recommended by a geneticist I saw, yearly endoscopic ultrasounds. I wish they could do them both at the same time, for crying out loud. Ah, well.

So, now I am again confused, without answers, & heading for more tests. Lovely. I am about ready to quit all this crap. I say that & then I get really sick & puke my guts out & change my mind......
Posted 1/15/2009 8:08 PM (GMT 0)

Hi both. Can you tell me what GI stands for and PCP abreviation is. I am new to the site and don't know what they mean. I keep thinking of american soldiers for GI.

I am searching for answers to.. I would like to know what can be done and what research there is. Be good to have a light at the end of the tunnel not just darkness and un answered questions. I must say that my specialist has said that she will be sending for a second opinion if she is unsure of how to treat the CD in my duodenum.

What I have learnt so far is that you have to push people all the time to be able to get answers. My treatment to begin with, when I first had suspected CD made me complain to the NHS about my treatment. Things are better now but I nearly complained again recently when I was seen by a locom instead of my specialist.

Hope things work out for you both and you get some answers or know what direction you need to take

smilewinkgrin
Posted 1/15/2009 11:12 PM (GMT 0)
GI=Gastro-intestinal (gastroenterologist)
PCP=Primary Care Physician

I just got home from my scope. Not sure exactly yet about the results or what they mean if anything at all. I have inflammation & a large pre-ulcer (I thought it might be more like "post"-ulcer though since I have been one 2 meds used to treat them.). Either way they found that, not much else. Hiatal hernia. She didn't say much about it or whether it could caused by crohn's or not. It seems she has slightly different opinions of what I have. The GI is now mentioning maybe gallbladder. But my PCP thinks I have crohn's.

Who knows.

Now it's just waiting on biopsies. AGAIN.
Posted 1/16/2009 5:11 AM (GMT 0)
My doctor never specified if I had Crohn's in the duodenum, but I suspect I do/did. I used to get pain just underneath my ribcage, in both my chest and back. I also was anemic for years, and iron is absorbed in the duodenum. After I was on Humira for a month or two, the pain went away and my iron levels shot up to the normal range for the first time since I was a kid. I've also been able to reduce my Protonix by half.

I hope all of you find something that helps you too!
Posted 1/16/2009 11:19 AM (GMT 0)
I have CD from my "former" terminal ileum up through my throat, so it's strange for me to hear that CD in the duodenum is rare. None of my docs have ever said that and I was diagnosed 26+ years ago. I'm on minimal meds right now, but the one I can't do without is Nexium. I have a hiatal hernia, CD in my stomach and reflux.........yuck! You might want to try adding Zantac or something similar, my PCP recommened this when the nexium just isn't enough and it seems to help since it neutralizes acid.

Let us know what the results of your scope are.
Posted 1/24/2009 10:32 PM (GMT 0)
I did finally get the results of my biopsies. I don't have the actual results in my hands, just what the nurse told me over the phone. I think they are still waiting for the IBD serology test results, which haven't come in.

Negative=celiac sprue (tested before, not sure why AGAIN)
Negative=cancer
Negative=h.pylori

Gastritis & inflammation was found.

That's all I was told. I want to know why? What could cause ulcers & inflammation if everything is negative & I am NOT taking any NSAIDs? I still don't have any answers....

Would the biopsies from the stomach actually say crohn's disease? Or is inflammation a normal crohn's finding?
Posted 1/25/2009 5:31 AM (GMT 0)
I've been told that taking enzymes can help with acid reflux, just in case any of you might want to experiment with them.
Posted 1/25/2009 5:41 AM (GMT 0)
um.. ulcer in duodenum have i... bled much it did.... healed with laser it was....

ok enough yoda talk.. never been told its rare either. maybe your dr just hasn't seen much? have you tried taking the anti acid pills late at night? i take mine just before bed so that they are theoretically working best while lying down.
Posted 1/25/2009 12:34 PM (GMT 0)
I was told prilosec in am before the karafate before I eat. It's a ritual & I am tired of it. I am hoping I can quit taking them soon. I don't have reflux, by the way.
Posted 1/25/2013 11:08 PM (GMT 0)
Hi, I am also new to this forum but I would like to share my experience in the hopes that it might help someone else struggling with Crohn's of the duodenum.

History:

-No family history of Crohn's or UC

-15 years old, scoped and treated for stomach ulcers, doctors thought maybe I had high anxiety

-23 years old, became very ill, could not keep any food down, very painful, lived on pedialite and baby rice cereal, hair started to fall out due to lack of nutrution

-23 years old (5 months later), scoped again, blood test, and finally diagnosed with Crohn's disease of the duodenum. Doctor said it is very hard to diagnose since it is so rare.

-23-25 years old, struggled with flaring disease, very painful, medication: prenisone 10-60mg/day, azathiaprine 100 mg/day, dexilant. I was still in school at this point and working almost FT hours, so stress was causing the constant flares.

Now at 26 years old, I am doing very well with azathiaprine 100 mg/day and dexilant. I know that I cannot eat certain vegetables (cooked or raw); carrots, broccoli, cauliflower, white onions. I am also careful to listen to my body so I do not eat too much raw fruit and vegetable, but I still eat them. I have found that I tolerate any fruit/vegetable if it is juiced (raw, no pulp).

If I flare; I have found that if I catch the flare-up early enough (before any vomiting) and treat with prednisone (usually 40mg), I recover quickly and I am able to function the next day. Also, if I treat soon enough, I am able to do a fast ween off the prednisone (less than two weeks). If I wait too long to treat, I am usually vomiting and in intense pain for 3-4 days and it takes months in order to get off the prednisone without flaring right backup. (please note that I have only flared once in the past year and it was right after I switched jobs - stress again)

My doctor wants to up the azathioprine to prevent even the occasional flare to prevent surgery. I have concerns for my liver with the higher dose so he ordered a test to see how my liver is functioning and if I am in the medicine "sweet spot" for my disease.

I hope this helps anyone struggling to gain control of their disease. I would love to chat with another person who has it in their duodenum.

 

Posted 1/25/2013 11:20 PM (GMT 0)
I apologize for writing a book, but I noticed a lot of you saying you had acid issues. The only antiacids that have worked for me are Kapidex/Dexilant. I used to have heartburn so bad that I slept sitting up. With the dexilant, I am almost heartburn-free. It is more expensive but their website offers a prescription savings card so you never have to pay more than $20.
https://www.dexilant.com/Savings.aspx
Posted 1/26/2013 12:09 AM (GMT 0)
Crohns in duedenum not so rare but if it is attacking your pancreas, that is a rare complication that I was "lucky" enough to have happen. I also had the severe pain and I found that Prevacid helped me more than the prilosec but the pain never really completely subsided until the flare calmed itself over time. Crohns in the duedenum is very painful and I never want to go thru that pain again.
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