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Crohn's Disease Forum » Support Forum » Undiagnosed Club » Confused and frustrated!!


07-18-2011, 06:51 AM   #1
netnetroberts
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confused and frustrated!!

Hi everyone,

I am 43 and have not been officially diagnosed with Crohn's yet. In January, 2011 I was diagnosed with Gastroperisis. For those who do not know what that is, it is delayed emptying of the stomach. It can take me days to digest my food. With that said, here is my story!

I have had bowel issues all of my life. Diarrhea and constipation... never realized how much i used Immodium till I stopped and thought about it last year. A few years back I was having severe symptoms and my stomach kept bloating and I looked as though I was 10 months pregnant. I even went to the ER and they told me I was just constipated. I went to a GI Dr and he said I needed to eat fiber. So that's what I did.

Last year I started with diarrhea that just wouldn't go away. It was interfering with every aspect of my life. I didn't want to leave the house. So I finally told my family Dr I needed answers and was at my wit's end! So he sent me to another GI Dr. She started doing testing... Colonoscopy, Endoscopy, (which showed nothing really but some scarring at the top of my stomach probably from acid reflux) a breath test, and then an Egg Test which came back positive for Gastroperisis. So they stopped looking for anything else.

My mother and my sister have both had issues the same as me with diarrhea and constipation but they have just learned to deal with it the same as me for soo many years! Then about a year and a half ago, my sister's daughter was diagnosed with Crohn's. My GI Dr has told me that it isn't close enough of a family member to think I have it to. I don't understand that at all!!

Since being diagnosed in January, I have been trying to follow the proper diet to keep my symptoms away. Low fiber and low fat. And I do a really good job of it. But lately my symptoms have become worse again. My stomach extends soo far that I am in pain and looks as though I am very pregnant. People look at me as if I am pregnant quite often, which is awkward as I do not have a uterus or ovaries any longer and there is no possible way. But i waddle and look as if I am pregnant! I also get sores in my mouth all the time! I went to the family Dr's again the weekend of the 4th. They did xrays and said that I am constipated in spots through out my entire digestive track. (which I didn't know was possible when you are experiencing diarrhea.. but you can apparently have both!) I have been eating soft foods since then and am still having problems. My family Dr got me an immediate appt with the GI Dr and I thankfully go for an appt today!

If one more person says, "you are just constipated!" I swear I'm gonna scream! I am hoping they finish testing me for Crohn's and give me more of a diagnosis than they have. I don't wanna eat mashed potatoes and tomato soup the rest of my life! but it is looking like that is a real possibility at least for the time being!

The only nice thing is that I have lost about 20 lbs since January! Does anyone else have problems with Gastroperisis and Crohn's and if so, what are your symptoms like?

Thanks for listening!
Jeannette
07-18-2011, 01:30 PM   #2
glum chump
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Hi Jeannette

Welcome to the forum!

I haven't experienced Gastroperisis, but wanted to welcome you to the forum, and hopefully, someone who has had experience with gastroperisis will chime in at some point.

The distended, bloated belly is so hard to live with, isn't it? I found it to be emotionally hard to cope with at times, along with the physical discomfort that comes with bloating. It's too bad that all these tests haven't revealed anything definitive for you---that must be frustrating given your symptoms. But just because these tests haven't found anything doesn't in any way mean that you don't have *something*, including Crohn's.

If you look in the "Support" section of the forum, you will find a really great thread titled "Undiagnosed Club". You might want to peruse that thread and write in; I'm sure you'll find tons of great support.

Again, welcome.

Cheers,

Kismet
07-18-2011, 01:54 PM   #3
netnetroberts
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Thank you Kismet. I have posted on that thread and am glad for the support!
07-18-2011, 02:29 PM   #4
Crohn's Mom
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HI Jeannette and welcome

I'm glad you found the undiagnosed club already...there's a great bunch of supportive one's over there
I sure hope you get some answers soon !
I think IMO that your doctor is wrong about the relative connection. My brother has CD, and one of his daughters, which is then of course my daughter's (who has CD also) uncle and cousin, and all of her GI doctors have found this significant. So, please don't let them discourage you with that.

best of luck!
~T~
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07-23-2011, 12:02 PM   #5
David
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I've moved your thread to the new Undiagnosed Club. If you would prefer I move it back to Your Story, please let me know
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07-23-2011, 08:15 PM   #6
mayhavecrohn's
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hey Jeannette you sound like your going through what i am i am still undiagnosed to it sucks i know its waitng thats the worst i think
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07-23-2011, 08:18 PM   #7
mayhavecrohn's
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i am at my wit's end to
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