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Crohn's Disease Forum » Your Story » My Story, Looking for Some Input Please.


06-01-2010, 07:08 PM   #1
Sekhmet2386
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My Story, Looking for Some Input Please.

Hi,
My name is Amy, I just recently went into the hospital and had a lovely 4 day visit which resulted in the diagnosis of Crohn's Disease. I never knew I could have had it since I experienced no symptoms until May 24th at 1030am. I woke up that morning at 830 and just felt wrong, couldnt tell what it was but by 1030, while at work, I experienced the worst abdominal pain I have ever experienced. I went into the hospital and was told my small intestine was inflamed to the point of complete closure. The next day my GI doc met me in the hospital room and asked me if I have ever had symptoms like diarrhea, stomach pains before this incident, have i had problems digesting dairy and other foods etc. I answered no to all but he insists I have Crohn's before any of the blood work was back. In the hospital and since he has put me on Flagyl, Pentasa, Entocort, and one other antibiotic. All I can say is i feel sick all the time, like not quite nauseaus but not quite right. I tried going back to work today and after 4 hours I was completely drained and just sick feeling. I guess what Im looking for is if anyone has had similar problems when they started all this stuff and how you coped. Maybe I am in denial of having it and trying to convince myself he is wrong, He was kind enough to tell me my life is going to be rough from here on out and going to be painful the rest of my life.
Hope someone can help I feel kinda confused at the moment and not getting straight answers. Also, if anyone has any tips on how to afford the medication that would be great, I have insurance and the Entocort and Pentasa run me $500 a month.
Thanks,
Amy
06-01-2010, 08:59 PM   #2
Crohn's 35
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Welcome Amy! Wow that is the quickest diagnosis ever! Sometimes we can get narrowed or other symptoms and it creeps up on you without warning. Most people start out with cramps, and then more pain and some with obstructions. The meds you are on can make you feel like crap, been there done that and you need to eat with these meds, or your guts will pay. I am using natural ginger pills for nausea, sure helped me today. Drink lots of water, they tend to make you feel dehydrated. I know it sucks but usually the antibiotic course is for about 2-3 weeks, the Entocort can be longer term and mild. We have all been in denial, and if you def have it you cannot ignore it . Keep a diary of your foods if you start to flare, or diahreah, and Flagyl can cause that. No alcohol with Flagyl and no dairy 6 hours before. Take care, sorry you are here but there is alot of support here, great people!
06-01-2010, 09:55 PM   #3
MisB
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Hi Amy,
I'm a newby here too, with some of the same questions, but I can help you with one of yours. As for paying for your meds, I just applied for assistance for Pentasa. Go to rxassist.org and follow the patient promps. If you meet their guidelines and follow their instructions, they will provide you with your meds. For your other meds, try doing a google search as "MED NAME - ASSISTANCE" That's how I found rxassist.

I wish you the best and hope to see you here again.
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BEVERLY

Surgery 8-2010 removed ileum, appendix, 1.5 ft of colon, 21 lymph nodes and a 5 cm tumor. All lymph nodes tested positive for cancer.

Conclusion: Crohn's is in remission, start chemo for cancer end of Sept, or beginning of Oct.

All my meds are pertaining to surgery healing and stress.

06-01-2010, 10:34 PM   #4
Entchen
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Hi, Amy, and welcome to the forum. For all of that to happen to you at once -- woah. Straight answers are hard to come by, because there aren't too many available given how (from what I've learned on this forum) people are affected by Crohn's and the meds in so many different ways. Am also still quite new and still full of questions (and yes, I share the "something's off" feeling, even when pain levels are low...which is not today!).
But -- the part of this forum that gives me the most hope is the overwhelming evidence from people that, even though the medical side of life might get rough from time to time (or lots of the time, for some), other facets of who you are can go on thriving.

Take good care.
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Dx: Moderate Crohn's in 3 locations
Doctor's orders: 200 mg Imuran
Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
06-02-2010, 07:00 AM   #5
karim
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But -- the part of this forum that gives me the most hope is the overwhelming evidence from people that, even though the medical side of life might get rough from time to time (or lots of the time, for some), other facets of who you are can go on thriving.
Kelly- couldn't have said it better, myself!

Welcome! We all share that common "something isn't right" feeling...doesn't matter if we're in pain or not. I don't have much to add from what the previous comments were, but this forum is great and full of answers and amazing people!
Best of luck to you!

Oh- there are threads regarding the medication you are on. You may want to check those out in the Treatment section...those there may be able to help you in that regard

Kari xx
06-02-2010, 07:34 AM   #6
Astra
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Hi Amy
and welcome

Quick dx!!! well done!
Everyone has pretty much said everything, but I want to add, no you wont be in pain for the rest of your life! It's all about self management.
In time you will be learn how to control and manage your Crohns, when I say control, I mean thro diet and learning what not to eat etc, to combat the D, keep a food journal, but inflammation is beyond our control, and hopefully the meds will control that. and listen to your body, it will tell you when it needs a rest!! Sleep is a great healer,
As regards to the meds, give them time, all meds make you feel sick at first, and take a while to kick in, you could ask for cyclizine for the nausea.
good luck, you've come to the right place for support, you're no longer alone
lotsa luv
Joan xxx
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Joan

Dx Crohn's in TI 2005 symptoms for 15 years prior

BEEN ON -Azathioprine, 6MP, Prednisolone, Pentasa, Budesonide, Metronidazole, Humira, Methotrexate,

NOW ON -Amitriptyline 25mg
21/02/14 Right hemicolectomy surgery




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No-one should make you feel inferior without your consent!

06-02-2010, 03:05 PM   #7
belle1999
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Welcome Amy! I still feel like a newbie on the boards too. It has been a wonderful place to come and read, learn, and meet people in the same boat as you.
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Diagnosed December 30, 2009
Current Meds: Humira, iron, vitamin d, vitamin c, b12, multivitamin
Also have anemia and anxiety disorder

http://www.facebook.com/sarahbelle99
06-04-2010, 02:13 PM   #8
CodeBrown
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Location: warner robins, Georgia
Elly...my ER doc told me he felt I had Crohn's, but I had to have it confirmed through colonoscopy and biopsy...turns out the ER doc was right. I hope you were incorrectly diagnosed, but if you were not, this is a great place for support! The medications are expensive, but thankfully most pharmaceutical companies have programs to help you cover the costs. Good luck with everything! Keep us posted on how you're doing.
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Tammy

Currently on Humira and Entocort
Multi-vitamin and B12 injection
06-06-2010, 08:16 PM   #9
Awbrey
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The same thing happened to me as well almost to a T. I was never sick before and out of the blue it came on, I was in the hospital as well and I have no insurance :-( I was diagnosed in Jan 2010. I was put on Sulphersiden, Predisone and Flagel. After a few months I thought no way I cant have this so i went off my Sulphersiden (sp) and started eating my old ways and had a few drinks, well let me tell you I was in the hospital tuesday again, Guess I learned my lesson, I wish you the best
06-07-2010, 07:10 PM   #10
ameslouise
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Hi Amy and welcome!

Your head must be spinning after such a quick diagnosis. I am still reeling a year after my diagnosis and that is after 15 years of IBD! I am sure it will take while to wrap your head around it, and don't worry if you go thru the seven stages of grief, including denial, anger, depression, etc etc.

And I agree with Joan - you will NOT be in pain the rest of your life! Things will get better with the correct meds and lots of support from us here on the forum!

- Amy
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