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Crohn's Disease
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Posted 5/31/2011 9:44 PM (GMT 0)
Hi so I am new to this forum and would really like to pick everyones brains! I was diagnosed with Crohn's disease in oct. of 2007 and since then have had 4 major flare ups.  My most recent was last week. I found out I was pregnant and then a couple of days later started the flare.  I end up bleeding pretty badly my blood count went from 12 to about a 8.9.  I then preceeded to have a misscarriage! confused   a bad week! Anyways, my real question is what do I do next? I am on Humira injections every two weeks and pentasa 16 pills a day and obviously they are not working!  I really don't want to have surgery and I was just wondering if there was anyone out there who has used natural remedies to help with the symptoms.  Also, I know my bleeding is a little rare, does anyone else have rectal bleeding as their main symptom?  I have always been afraid to ask that question because I am scared that  I might have something worse, I don't know. I hope this made sense! Probably not! But I could really use some advice! Thanks!
Posted 5/31/2011 9:56 PM (GMT 0)
That's a crazy and sad story! Have you ever taken prednisone to stop a flare? If you are bleeding so much, it seems like a change in medication is in order.

My first visit to a GI was because of rectal bleeding following the birth of my 1st child. So yes, many of us pass blood on a regular basis. There's also low iron due to poor nutritional absorption.

I'm so sorry about your miscarriage!
Posted 5/31/2011 10:05 PM (GMT 0)
Thank you so much for responding! I am actually on prednisone right now for the bleeding! I hate it so much though and really I never want to take it again! I see you are taking Sulfazine what is that if you don't mind me asking?
Posted 5/31/2011 10:16 PM (GMT 0)
Sulfazine is an older medication, originally intended for treating rheumatoid arthritis. It has come back into favor with GIs for treating inflammatory bowel disease related joint pain. It is a 5-ASA medication, similar to Pentasa, Asacol and others. I started taking it a couple of years ago - for a long time my primary complaint was pain in my hands, and sulfasalazine took care of that really well.

Sorry you hate prednisone. I happen to really enjoy it. Have you ever taken Entocort? It is also a steroid, but has much less of a systemic effect, and will treat the terminal ileum pretty well. Where exactly is your inflammation?
Posted 5/31/2011 11:21 PM (GMT 0)
Hi there and welcome to Healingwell. First off this is not a disease that really can be treated "naturally". There are things that will help out, but you really do need to take some type of maintenance med or you are just going to continue to flare and then eventually require surgery.

Maybe adding a different med in with the Humira will help it to work for you. I too am so sorry to hear of your miscarriage. I hope the doc can get you feeling better soon. Hugs!
Posted 6/1/2011 12:12 AM (GMT 0)
So sorry about the miscarriage. That's hard and I'm sure contributes to your stress.

I just wanted to chime in about the bleeding. I'm a regular bleeder myself. When I first started bleeding, I was terrified of the worst case (cancer). I stay on top of colonoscopies, so I don't have to worry. But, bleeding can be a typical symptom, especially if your disease is in your rectal area.

Hang in there!
Posted 6/1/2011 1:08 AM (GMT 0)
OOH, that's a good point sr5599! Heatherheat if you do have inflammation in the rectum, perhaps you should talk to your GI about a suppository or enema medication.
Posted 6/1/2011 2:07 AM (GMT 0)
I am sorry about the miscarriage. My first thought when you mentioned rectal bleeding was an abcess.
Posted 6/1/2011 2:18 AM (GMT 0)
If you are interested in dietary changes, you might want to check out the SCD diet, which has helped some people.

You can find out more info about it at www.breakingtheviciouscycle.info.

 

Posted 6/1/2011 2:41 AM (GMT 0)
Thanks everyone for the responses. My Crohn's is actually in my small intestines and I think that is why my bleeding is more rare. I pretty much hemorrhage. It has been that way since my diagnoses, no fun! I haven't had a colonoscopie since my diagnoses but I don't think it is in my large intestine since the pain hasn't changed and everything else is pretty much the same as it was back then. I will look at the SCD diet and see if that helps. I know i will always have to be on meds I was just wondering if anyone one has tried a diet to help with the drugs as well. Thanks again for the advice!
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