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Crohn's Disease Forum

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Joined
Dec 22, 2010
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I feel like my story is so new, and yet so old. I've always had a "bad" stomach. I remember my dad getting mad at me when I was in elementary school because I would spend so much time in the bathroom. I wasn't fixing my hair. :(

I got my first kidney stone when I was 20. Since then I've had 13 stones with three lithotrypsies. They could never figure out why I was making them. For the past few years I've had more and more stomach trouble. I thought I was just allergic to certain vegetables. This past summer it started getting worse. I wouldn't be able to eat anything but crackers for a few days in a row and would spend a lot of time in the bathroom with very painful cramping. I mentioned this to my family practice doc. and he referred me to a GI specialist. When I mentioned some joint pain in my initial visit she automatically brought up Crohn's Disease and ordered a colonoscopy (Oct. 2010). They found some "erosions" in my terminal ileum and my bloodwork was "consistent with Crohn's Disease/IBD." Still, my GI wasn't satisfied. She kept mentioning that it could be from my occasional use of ibroprofen-which I don't take anymore. Really? Since then I have been getting sicker and sicker. I haven't been able to eat a normal meal since Thanksgiving and have dropped quite a bit of weight (for me). I'm down to 105 lb. and the pain is getting so bad I've had to take Percocet to get through it.
Last week the doc. prescribed "Entocort" and I've taken it every morning, but have only seen my symptoms get worse. I have been basically bed-ridden and my mom has taken my 2 year old daughter to her house while I sleep the days away.
I don't know anyone who has Crohn's, so I'm feeling a little lost and overwhelmed. Should I stick it out with the doctor? Am I just being impatient? I feel like I'm wasting away. My Christmas wish is to be able to eat!
Thank you for reading my long story and for understanding!
Jeri
 
Sweetie, you definately need a new doctor. You are experiencing the same problems 'ish as I have been with mine. I have the exact same Christmas wish too. I find myself sleeping many days away and just crying because of the pain. Your doctor isn't listening to you it seems (either is mine) and it is always good to get a second opinion.

I'm sorry you are as sick as I am this Holiday season. It is totally not fair!!!
I hope you nip this thing in the bud...BIG HUGS!!!!
 
Hi Jeri
and welcome

Ibuprofen has been mentioned a few times on here as a pre curser to IBD! Just don't take any more NSAIDS from now on!
Give the Entocort some more time, it's designed to bypass other organs and is nonsystemic, this means it goes straight to the terminal ileum and ascending colon, and is released there, with fewer side effects than Prednisolone. You might notice some nausea and even vomiting, but they should settle down.The usual dosage is 3 3mg tablets (9mg) for 8 weeks, then 6mg for 2 months. Once symptoms are controlled it can be used as a maintenance therapy, to remain in remission. Hopefully it will start working soon.
Glad you found us, lots of friends here for you, any questions, just shoot!
lotsa luv
Joan xxx
 
Hi Jeri, welcome, from your neighbor to the east. :) I agree with Tacy that you should start looking for a new doctor, one who takes you more seriously. I also agree with Joan that you should give Entocort more time to work - I'm on it myself, and it took about 9 days for me to feel a difference, but others on here have said it can take weeks or even up to a month. Just give it a bit more time.
 
It is your decision in the end, but I would suggest getting a second opinion. Your symptoms sound like Crohns/IBD and the evidence you explained should be enough to get a diagnosis. I am lucky because my GI doc actually refers me to pediatric GI's because their practice doesnt handle pediatric cases usually(I guess I am the exception). Your doc should have a diagnosis, so try to get another GI to look over your history and problems. Good luck and hopefully you will get a definite diagnosis and treatment.
 
Thanks for the advice and consolation! My GI did listen to me about my symptoms and switched me from Entocort to 30 mg. of Prednisone and 2.4 grams of Asacol. I thought it was starting to work- I ate a little bit of Christmas dinner- but then the pain came back and I've been just as sick. I was really hoping the Pred. would give me all the energy everyone's been talking about, but so far nothing. It's been a week, and my house is still dirty. :)

I've been a bit happier with my GI, but does anyone know of a good spot to get recommendations for GIs in their area (in case I do decide to get a second opinion)?
 
Hi Jeri,

I suggest you call the Mayo Clinic for advice -- they're in Rochester, Minnesota. They have two separate web sites: there's Mayoclinic.org, which is the medical center itself, and mayoclinic.com, which is a health information website.

I've never heard of kidney stones being a part of Crohn's. It may just be a separate problem. I've got about three or four separate health problems. If you can, drink a lot of water -- I've heard that will help with the stones.

I wish you the very best!

Sandy

Dx 1963
Now on:
Asacol
Azathioprine
Rowasa
Budesonide (sprinkled lightly in Rowasa, shaken, not stirred)
Folic acid
 

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