Question...upper gi crohns

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sweetbabyray
Regular Member


Date Joined Mar 2010
Total Posts : 80
   Posted 3/23/2010 7:51 PM (GMT -7)   
I was Dx was Crohns a couple years ago.  The reason I went to a GI doc was because of sharp pain in my stomach and black diarrhea,  I was also anemic.  Once I saw the GI he did a colonoscopy and it showed that the last 4inches of my small bowel had signs of Crohns.  All of my biopsys came back great.  I went on some meds - my diarrhea and stomach pain went away but I was still anemic.  I had to have 2 iron infusions to get my hgb back up.  My GI doctor then wanted to do a EGD.  I then found out that I had signs of upper GI Crohns.  The fact that I have upper GI Crohns is why I am now on Humira.  Humira is work really well for me.  I use a push pen every 2wks.  I do get a local reaction from where the injection took place but other than that I show no signs or side-effects.  SInce I stared the new med I am no longer anemic and overall feel better.  Does anyone have or know much about upper GI crohns?  I would love to hear your story.  I feel blessed that everything is under controll but also feel anxious and almost a sence of anxiety because of everything that I have dealt with in the last 2 years.  My husband and I are trying to have a baby.  My doctors said the chances of getting preg. is okay but I do have a higher chance of having a miscarrage.  Can any of you relate?  Thank you all so much!

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/24/2010 6:58 AM (GMT -7)   
Crohns in the upper GI tract is not as common. I do not agree with your doctor about having an increase risk of miscarriage. Many women on this very forum have had healthy babies and pregnancies while on meds such as Pred, Pentasa, Imuran/6mp, Humira and Remicade. Good luck to you!

Oh, I forgot to tell you that I think they also use alot of meds such as Prilosec, Nexium etc to help with the upper Crohns sometimes. 


Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Roni
Veteran Member


Date Joined May 2003
Total Posts : 2480
   Posted 3/24/2010 11:19 AM (GMT -7)   
I've had cd in my duodenum and I often get a flare in my mouth too. It's really painful so I can relate.

Stats and research shows that women with CD do tend to have a higher risk of miscarriage. It likely depends on a number of factors, how sick u are, what meds ur on, ur activity levels, and who knows what else?

I've had two babies and both pregnancies were extremely rocky, high risk, and required bed rest because of almost certain miscarriage. I had bleeding and even hemorrhaging that required hosptialization. I also had obstructions and I was very sick with CD. I even had gestational diabetes and a heart condition that got worse while pregnant.

I had to have tonnes of medical care for both pregnancies but it worked out well!

Thank God I carried to 37 weeks both times and my babies are healthy! My first had to be delivered by emergency c-section though because he was struggling and his heart rate was dropping to dangerously low levels. My 2nd was a c-section too.

Some women with CD are like me and even though pregnancy is a struggle, it turns out ok. Others have to try again.

My advice is if you decide to get pregnant, try to get as healthy as possible first, and if you can, go on drugs that are well-documented through pregnancy and are known to be safe. You ob/gyn and GI should be well informed. I was on prednisone, pentasa, strong probiotics, and a strict natural diet during pregnancy, but I almost had to have a resection because of obstruction during the first 4 months.

If you are a praying woman, rally up your church and prayer partners. It helped me and my babies.
And be as calm and happy as possible. It'll be good for you and the baby. ;-)

Oh, and the struggle I went through was worth every second!

Best wishes!

Post Edited (Roni) : 3/24/2010 12:23:52 PM (GMT-6)


sweetbabyray
Regular Member


Date Joined Mar 2010
Total Posts : 80
   Posted 3/29/2010 11:18 AM (GMT -7)   
THank you both for your post. Im new to this site and find it so helpful to find people that can relate to me!

lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 3/29/2010 2:28 PM (GMT -7)   
Sorry I missed your original post. I was dx 28 years ago and had two uneventful pregnancies & healthy babies. My ob/gyn did put me on 2 preg multi vitamins a day instead of one because of CD, but it didn't have any other issues.

Now the upper GI crohns. My Gi keeps me on Nexium to keep the acid levels in my stomach down. I basically have CD from "beginning to end" and the only thing that really ever helped upper symptoms was when I was on Remicade. Unfortunately, other than that (for me) only paying close attention to my diet helps with upper symptoms and disease.
 


sweetbabyray
Regular Member


Date Joined Mar 2010
Total Posts : 80
   Posted 3/31/2010 4:31 AM (GMT -7)   

Thank you so much for this information.  I havent had anyone to talk to about upper GI Crohns.  Are you currently taking Remicade?  if so, will you be on Remicade forever?  Do they take you off of remicade if you dont have a flare-up for years?  What is your diet like?  I would like to start following a diet and see if that works for me.  also, if you dont mind I would love to hear your story of how you were dx?  How old were you when you found out you had upper gi crohns?  I was dx w/ cd then almost a yr later with upper gi cd.  The reason why they wanted to do an egd was because of anemia.  I get really upset and bad anxiety about the upper gi crohns.  It just seems like it is so un-common and not talked about often.  I dont know much about it.  SO, THANK YOU for your reply:)


lamb61
Veteran Member


Date Joined Jan 2005
Total Posts : 1719
   Posted 3/31/2010 6:45 AM (GMT -7)   
I had to stop Remicade because I built up antibodies & it was causing debilitating joint pain. Since then I've been on Imuran but had to stop because my white count kept dropping. Right now I'm only on sulfasalazine for the CD, old school but I'm not too symptomatic right now. I do take still take Nexium daily for GERD. I was diagnosed with CD in my esophagus about 5 years or so ago. Then confirmed in my stomach 2 years ago. If it gets bad in my esophagus they put me on a short course of prednisone and that usually helps. I really think that I had CD in my duodenum early on -- 5 th grade I think it was. I was put in hosp. for "an ulcer in my duodenum." But considering medical knowledge & testing in the late 60's I'm betting it was CD even back then. I've always had some sort of symptoms.

As for diet, I know what foods are my triggers and that's pretty much how I manage the symptoms. Not that I stay away from wine, sugary things, fatty foods, but I do try my best.

I wish I could remember what the percentage of extraintestinal manifestations is according to my GI. He spouted it to a resident that was with him one day because she didn't know CD could be out of the bowel I guess.

Let us know if you have more questions, I'm sure someone will be able to answer you.
 

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