Gastroduodenal Crohns

iVillage Member
Registered: 03-17-2011
Gastroduodenal Crohns
9
Thu, 03-17-2011 - 8:28pm

After nearly 5 years of pain, frustration and tests I was recently diagnosed with gastroduodenal crohn's. Apparently it only accounts for about 4% of all cases, so it is pretty rare. I can't find a Dr who has treated someone with it and certainly haven't been able to locate someone else how has my same variety. Getting really frustrated and lonely. None of the normal medications for Crohn's seem to work and my stomach is full of ulcers and scar tissue, building by the day. Been on an all liquid diet 90% of the time since September and still vomit 3-4 times per week because everything stays in my stomach. Was previously misdiagnosed with gastroparesis and peptic ulcer disease along with other things. Essentially, can't eat because of the pain, but must eat so I can live. Tough balance. Anyone else out there dealing with this

Community Leader
Registered: 07-25-2000
Thu, 03-17-2011 - 11:40pm

The frustration of dealing with rare disorder can be very overwhelming. I am sorry you are having such a hard time finding relief. I hope your doctors will find something that helps soon. Are you near a major medical center?

iVillage Member
Registered: 03-17-2011
Fri, 03-18-2011 - 12:27pm

I'm about an hour away from Oregon Health & Science University Hospital, but so far they haven't been much help either. My Dr is consulting with several people there, but he can't find a Crohn's specialist who has treated a case like mine either. Been working mostly with people who specialize in infectious disease. They told him Prednisone and surgery were my only options at this point. The Prednisone hasn't help and has started causing my annoying ulcers to go from numerous and shallow to nasty, bleeding ones, so he pulled me off cold turkey. So that leaves either treatments that probably won't work (like starting Remicade even though there is no history of treating GD Crohn's with it) or removing a good portion of my stomach (scar tissue) and cutting the nerves/muscles of my duodenal valve so food can get through.

I should say that I am lucky though that I have a Dr that is committed to getting this worked out. He has given me his private phone # for when I am having a major issue (like obstructions and drug complications) and consistently comes in on his vacation days to do procedures or meet with me in a timely manner. I am 25 and he wants me to be 26 and living a "normal life". Plus my family does their best to be supportive, taking off day after day of work for my procedures. My mom posts copies of my endoscopy and colonoscopy photos on her fridge and likes to walk people through what they are looking at. I just wish that my family wasn't an hour and a half away or that I had a friend where I live. I have been too sick the whole time to go out and meet people, I just go to work and come home and go to bed. When I am especially sick or feeling extremely weak I pay the homeless man who lives on my block to help carry my groceries home from the store and into my apartment and I pay a kid that works at a local pizza place to come help clean my apartment for a couple hours a week so I am not living in filth.

Community Leader
Registered: 07-25-2000
Fri, 03-25-2011 - 12:18am

It does sound like you have a good doctor who is committed to getting you well. That is a big plus.

iVillage Member
Registered: 03-17-2011
Sat, 03-26-2011 - 8:18pm

Yeah, life isn't all bad, it just seems like it some days.

iVillage Member
Registered: 03-28-2011
Mon, 03-28-2011 - 11:40am

My DD has Crohns. She was diagnosed last year, but she hasnt had a colonosopy, only a partial sigmoidoscopy, because her intestines were so swollen and bleeding. She did a regimen of prendisone and takes asocal

Community Leader
Registered: 07-25-2000
Mon, 03-28-2011 - 4:20pm

Well, best of luck to you. I hope some of that will help and you will be able to avoid the surgery. We will be interested to hear how it all works for you.

Community Leader
Registered: 07-25-2000
Mon, 03-28-2011 - 4:23pm

Thank you for sharing your experiences with us. How old is your daughter? Are the medications she is on working well for her right now? I hope you will check back in with us often and let us know.

iVillage Member
Registered: 06-29-2011
Wed, 06-29-2011 - 9:26am

I also have Gastroduodenal Crohns...I start Remicade next week. Have you started yet?? I previously had Crohn;s in my ileum and had a resection 5 years ago. Wrongly diagnosted this year with Gastroparesis. I guess it's really rare for Crohn's to attack another part of the GI tract. I'm hoping Remicade help - I'm desperate. Pain, vomitting, nausea all the time. How are you doing??

Community Leader
Registered: 07-25-2000
Wed, 06-29-2011 - 11:53am

Hi and welcome! I am very sorry to hear of the problems you have been having. I share your hope that Remicade will help. Please keep in touch and share your experience here. I hope some of the others who posted in this thread earlier will come back and share with us what is happening now for them.