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Crohn's Disease
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Posted 9/3/2007 6:36 PM (GMT -8)
After a long year of fighting (what we thought was) c.difficile infection I now have Crohn's disease following a colonoscopy that revealed a very inflammed terminal ileum and valve with crpyts and prominent active inflammation in lamina propria.  I was put on pentasa and entocort but now what?  Do I need an immunmodulators?  How do I know when to suggest to the doc we need to escalate treatment?  I am concerned about 6mp and methotrexate, prednisone, dexamethasone having first hand experience with my daughter who fought leukemia for 3 1/2 years with these drugs.  I have seen what a low white blood cell count can do   How do fistulas form and why do they form --is it from undertreated crohns?? 

Hoping someone can help me answer questions and calm my nerves down.  My 4 year old is starting prek tomorrow...more germs!!

Thanks everyone!!

 

Posted 9/3/2007 6:50 PM (GMT -8)
Welcome and I'm sorry about your diagnosis but glad that you found this forum. This is a great place to get support and learn a lot about Crohn's. You should speak with your GI about your treatment options and take some time to learn about the disease. This site is a good place to start. I was just diagnosed in July so I totally empathize with your feelings and I also have an almost 4 year old starting pre-K on Wednesday so I also share your germaphobia.

I don't have fistulating disease so I'm no expert there but a lot of people have posted about that and have lots of experience/knowledge about them.

Try these links as places to start. I found them really helpful as I was just trying to learn about CD:

Crohn's and Colitis Foundation of America -- www.ccfa.org

The IBD resource center on this site is great -- https://www.healingwell.com/ibd/

Wikipedia is also a very good resource to find out more about Crohn's and the various drug treatments available -- www.wikipedia.org

Good luck.
Posted 9/4/2007 2:56 AM (GMT -8)
Hi nikki,
Welcome to Healing Well. Do you have a Gastro doctor? On here you can post questions about meds
anything about Crohn's. There are very good people here.
Posted 9/4/2007 4:39 AM (GMT -8)
Hi Nikki Welcome Fistula's form when there is a small crack in the bowel that can abbcess and then lead to a track called a fistula. Do you have any? Was wondering if that is why you asked. As for meds I think it is based on if the drugs are working for you and probably the severity of the disease. I have severe CD, DX in Jan. so I quickly went to Remicade because of the complications of CD (abbcess and fistulas).I would think that in my case it could of been from not being treated because I had the DX of IBS for 27 years .The pred worked fast for me are you on it? My Dr. suggested the Remicade for me but I did alot of reading here on the forms.Low roughage diet also helped me .Just hope you are not too upset about your DX I was pretty worried but found this forum and read alot and the help calmed me as well as the fact I feel better now I do not have pain or much D anymore used to have it every day.lol gail
Posted 9/4/2007 4:52 AM (GMT -8)

The dose of 6mp used to treat Crohn's is far lower than in leukemia, and leukopenia (white blood cell suppression) is still fairly uncommon for Crohn's patients. Even where it occurs, it almost always quickly resolves when meds are stopped. So be wary fo connections between your previous experience with 6mp and the way it is used in Crohn's therapy.

For most newly diagnosed patients, medication choices are basically trial and try again . . . a search for the right meds that will have the most positive impact on your particular case at this aprticular point in time. Experienced gastroenterologists can lay out all the choices and options.

Posted 9/4/2007 5:26 PM (GMT -8)
Hi! Welcome to HealingWell but so sorry you must be here. Yeah, getting your treatment on the right course will be Trial-and-Error at this point. Another useful thing you can/should do is start keeping a log of the foods you eat. Find out what bugs you terribly and what is harmless. We all find this very helpful.

Sincerely,
Matthew
Posted 9/4/2007 6:15 PM (GMT -8)
Welcome Nikki,

 

We are glade to have you.I'msorry that you are having problems but you have come to the right place and we will help in the best way we can.I agree with matthew it is trial and error and it take a while to find the right combo of meds.I hope that you get to feeling better soon and please know you are welcome any time.

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