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Crohns in my tummy!!!

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Crohn's Disease
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Posted 7/29/2012 1:43 AM (GMT 0)
Yesterday I went for my first scope.....no worries, had acid reflex before ..the dr is just going to confirm that. WRONG!! The dr walked in and informed me that I have Crohns in my stomach. REALLY..tears started to flow..I have had Crohns now for 3 years....and never heard of Crohns in the stomach.
Very upset and worried.. the dr is talking about a 6MP drug...any advice ANY....or maybe just a shoulder to cry on. :(

Post Edited (willowbrook7) : 7/28/2012 7:47:10 PM (GMT-6)

Posted 7/29/2012 1:56 AM (GMT 0)
Crohn's can happen anywhere from your throat to your bum. I'm so sorry that you have gotten this in your stomach, but yes, I think you will need a systemic medicine like 6MP. Hopefully others will reply with their experience. I've simply used ppis like Prevacid for my gastritis - my GI has never said it's from Crohn's. Anyway, that med seemed to work well for me. I hope you feel better soon.
Posted 7/29/2012 2:00 AM (GMT 0)
thanks so much....I am feeling so lost....esp with this new med. being mentioned!
Posted 7/29/2012 11:05 AM (GMT 0)
Did the scoping doctor take biopsies? Have the results come back from the lab yet? Have you seen and read the reports?

Crohn's can attack anywhere from the mouth to the anus - but its not all that common in the stomach or areas other than the colon and small intestine. Certainly, reflux, GERD and ulcers are much more common. So before working yourself into too much of a "twit" get a copy of the biopsy report.

The 6MP drugs are NOT anywhere so scarey as they first sound to us. Yes, they are considered "chemo therapy" in that they were originally used for kidney transplant patients. But, really we are "just" trying to calm down an overactive immune system in the intestines and as such we require a much lower dose than transplant patients. Its not like we are trying to knock out the entire immune system.

I've been on Imuran (azathioprine) since 2003. I was started on Imuran along w/Cipro (Entocort first recommended) and Pentasa for 6 months to give the Imuran a chance to gear up to doing its intended job and after which the Cipro was dropped and I've been on Imuran and Pentasa all these years since which have kept me in symptomatic and even total remission.
Posted 7/29/2012 4:43 PM (GMT 0)
yes he did a biopsie..I'll have the results Tuesday. But I really cant imagation that he'd say that to me without knowing from what he saw if that was the case or not....he knows I'm not one to mess around. I think if he felt it might be something else he'd wait till the results where in.
and thank you so much for the inforamtion on the 6mp drug. I pray that your remission continues
Posted 7/29/2012 11:55 PM (GMT 0)
Hi, I have had crohns in my stomach and duodenum and as far as they could see into my small bowel, and at my terminal ileum, with granuloma. Dont cry, it is ok, it wont destroy your life etc. You will need drugs for acid in your gut. You probably take them anyway. Take it easy on yourself, and relax and accept, it will be ok, promise. hugs..xxx
Posted 7/30/2012 8:31 PM (GMT 0)
I'm so sorry. I felt the same way three years ago when I was diagnosed.

If I had any advise to give anyone it would be to not go with the doctor who is going to feed you a bunch of BS and say that you NEED the pills they have you. Don't worry, I was that silly too. And am
Now stuck on the pills for the rest of my life.

Last year my twin sister was diagnosed with crohns, after seeing me deal with it, she had a better idea of how she wanted to. She only sees a naturalpathic doctor and has achieved remission naturally through diet and vitamins. If you start the treatment you can not go back. You must ingest chemicals every single day multiple times a day that can cause crazy side effects like liver failure and cancer. See a natural path. Most are covered by insurance.


Something id suggest you doing right now is buying Organic Fresh Pressed Coconut Oil. Two spoonfulls a day. Tastes bad. But please, plead trust me that this is a magical cure. I don't know what it is, but I've been having a flair for months now...months and within two hours of taking my first spoonful of coconut oil, I already felt a difference. I know it's weird. But I promise it will really help, if not cure your symptoms.

I know you're scared, I know your doctor probably told you nothing about crohns and just started shoving medicin down your throat.
I've been there. I've been scared to. Find a naturalpath. They will explain everything to you. And heal the disease, not just treat your symptoms like your doctor will try to.

I really want to help as many people as I can, because I've been where you are.

Please email me if you have any questions, I'd love to help!

[email protected]
Posted 7/30/2012 8:33 PM (GMT 0)
Goodness. You must not listen to these people telling you that you NEED the medicine. Really, you don't. I've been there. Bad. Don't get sucked in to the meds, you will be stuck for the rest of your life when there are so many other ways to go about this. I've been dealing with this for three years now, truly...think twice

I'll answer any questions you have
Posted 7/31/2012 1:44 AM (GMT 0)
crohns in my stomach and duodenum--This has been in major issue with me at the past..My EGDs came out with inflammation w. bleeding in my lower stomach into the duodenum with no cancer or hpylori..I was stuck with carafate, nexium, and donnotol as the treatment..I was stuck on baby food and meal replacement as a diet too!!
Posted 7/31/2012 10:22 AM (GMT 0)
I know just how you feel. Crohns was actually diagnosed in my esophagus a year or so before my stomach, both were confirmed by biopsies. Prior to that I had no idea it could be outside my bowel. I wish there were more information out there about CD outside the bowel but it's very limited. I have found that I need "total body" drugs vs ones that only release in the intestine. I'm currently on methotrexate injections weekly and that seems to be keeping things at bay for now.

Do you get nausea alot? Just wondering as that seemed to be a huge issue for me prior to getting the CD under control a few years ago when it was DX in my stomach.
Posted 8/1/2012 2:48 PM (GMT 0)
Hi, I don't know everything about Crohn's outside the gut, but I too have been recently diagnosed with extra-intestinal Crohn's. I have had symptoms everywhere but my esophagus - even my lips. Biopsies have confirmed that it's Crohn's.

Anyhow, I am struggling with this, but I have found that Nexium seems to control my symptoms pretty well. I started on 1 Nexium and that healed my stomach ulceration substantially. Then I added the 2nd Nexium and that seems to keep the pain, nausea, and diarrhea under control.

Don't know if this is for you, etc. But I guess I am sharing that although it is rare ... as you see on this board, you are not alone and now you know people you can talk to about it. Additionally, while there are different ways to approach healing, this thing can be controlled. You just have to find what works for you. Finally, let me echo a previous post . . . it will be ok!

 

Posted 8/3/2012 7:23 PM (GMT 0)
My stomach was so bad several years ago that I had ulcerations inside of ulcerations. Also I had ulcerations covering the entire inside of my stomach, even areas where you don't usually get them. Between protonix and remicade my last couple of upper endoscopies have shown my stomach to be in good shape.

I tried 6mp but my Crohn's was too aggressive to wait for it to kick in, as it can take several months to become effective.
Posted 8/15/2012 5:32 PM (GMT 0)
thank you all so much..sorry to take so long to reply..been busy trying to have a life outside of my Crohns. I have never heard of a Natural way other than people going Gluten free..I'm going to research that....To me when I was first to I had it in my intestion I was one 2 different pills Pen something and asc something and please don't yell at me for not knowing them..I know I need to keep better track of these sch things now) However I felt bad every day...EVERY day. So I stopped taking them I rather have a few bad days then to feel sick every day........ So natural may be my best bet . Thanks again so much ..I go next week so some kind of special Crohns blood work and I quess we'll go from there..
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