Crohn's Disease Forum » Your Story » Never known anybody else with Crohn's for the last 13 years...

11-23-2012, 11:38 PM   #1
Calypso's Avatar
Join Date: Nov 2012
Location: Los Angeles, California
Never known anybody else with Crohn's for the last 13 years...

I am new here and it's my first time reaching out to others who suffer from Crohn's. I have had it for 13 years, but was not officially diagnosed until 2005. I take Nexium and Lialda and seem to do pretty well on it. For the past year I have had reoccurring bacteria infections and the antibiotic that works perfectly for me is Amoxicillin. My GI recently said she thinks these bacteria overgrowths are due partly to my diet (i eat a lot of sugar and starchy foods) and the fact that my digestive system is not timed to function/empty properly. This is not too surprising to me...many times I eat I find that the food is still sitting in my stomach 5 hours later (undigested).

I think one of the worst things I deal with is anxiety. I am hoping that interacting with other people who can understand my life will help me deal with my disease.
11-23-2012, 11:46 PM   #2
SarahBear's Avatar
Join Date: May 2012
Location: Charleston, West Virginia

My Support Groups:
Welcome, Calypso!

I'm glad you're doing well with your Crohn's. Have you tried to alter your diet and see if the bacteria infections stop?

For anxiety issues, you might want to check out the Mental Health Support subforum. A lot of people here deal with similar issues; you're not alone!

Diagnosed with Crohn's disease 12/6/08.
Have taken: Prednisone, 6mp, methotrexate, Pentasa.
Currently waiting for a new medication!

Check out the Crohn's forum chat!

11-24-2012, 12:39 AM   #3
Super Moderator
afidz's Avatar
Join Date: Jun 2012
Location: Mckinney, Texas

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Hi and welcome!
You are never alone here, as sarahbear mentioned check out the mental health support sub forum and browse around at all of the other sub forums as well. Have you thought about taking probiotics for the bacteria over growth? There is a powder that you can add into your drinks or if you like yogurt, some yogurts have a lot of probiotics in them. I eat Actvia and I know it helps me, but everyone is different. There is usually a bunch of people in the chat room if you ever want to talk ( I am always there )
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Asacol HD
11-24-2012, 01:02 AM   #4
Join Date: Nov 2012
What type of infections are you having? I'm just asking, because I have recurring staph infections in my skin, and its a separate disease called hidradenitis suppurativa. After finally getting diagnosed with that a year ago (I've had Crohn's for 13-14 years and been diagnosed with that since 2001 and had skin problems for about 11 years but just got diagnosed with the hidradenitis suppurativa a year ago) I am starting to undergo treatments for that. If its skin problems you are having, I would recommend you do some research on that condition and find a good dermatologist. It's highly underdiagnosed, and unfortunately very difficult to treat.
11-24-2012, 01:13 AM   #5
Calypso's Avatar
Join Date: Nov 2012
Location: Los Angeles, California
SarahBear - I altered my diet slightly before to see if it helped and it did not, so now I will have to alter it even more. Thank you for the link to the Mental Health support forum!

afidz - I have tried several probiotics for the bacteria issue and none of them worked I did not know about the chat room at all, thank you for pointing it out to me!

CatherineLyn - I get bacteria overgrowth in my stomach and intestines, but thank you for the info on that disease - I had never heard of it before!
11-24-2012, 02:33 AM   #6
Forum Monitor
acheallova's Avatar
Join Date: Sep 2012
Location: Clark, Wyoming
Hi there n welcome. There are a lot of outstanding, supportive people on here, so its great to see you have decided to join us. I've had crohns for 30 years they say, which makes sense in hindsight, but was only recently diagnosed in May of this year. Probiotics are a great option, a combo of them is ok to take. This way you can ensure you get acidophilus, lactobacilus ( found in yogart) and bifantis (bifidobacterium infantis) found in Aliugn®. Also, as a prescrition, nystatin 100000 IU swish n swallow may help as well. Bacteria overgrowth can turn into "thrush" internally as well as external for some as a technical term, nystatin or Diflucan® ( fluconazole) can help with this. It may be worth a shot to ask your doctor about them. Good luck, hope this may provide some options for you to consider. Keep your head up and spirits high.
Keep us posted. - hugs-
Meds: Entocort® Protonix®
Zithromax ® Cymbalta®
Clofazamine Divigel®
Rifampin Nystatin
Vitamin B complex
Vitamin D
Been on: Cipro® Vancomycin® Phenergan®(allergy)
Flagyl® Dilaudid® Biaxin®(allergy)

Crohn's Disease Forum » Your Story » Never known anybody else with Crohn's for the last 13 years...
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