Need some suggestions

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New Member

Date Joined May 2008
Total Posts : 5
   Posted 5/28/2008 7:12 PM (GMT -7)   
My mom is 59 and she was diagnosed with  Crohn's disease back in October. Since then, she's been on several different medications and has had to fight to get the insurance company to even approve such medicines. As of now, I think she's on anticourt (sp?) and huminara (sp?). She's had a surgery to remove one narrowing already. Still, she's losing blood extremely fast. At least once a month, sometimes twice, she needs to get blood; usually 2 units. The highest her red blood cound has been since all of this began was 11.
I know there's no cure for Crohn's, but I'm really beginning to think my Mom isn't getting the best healthcare since they've been approaching it with great slowness.
Any suggestions would be welcomed.

Veteran Member

Date Joined Feb 2007
Total Posts : 734
   Posted 5/28/2008 7:19 PM (GMT -7)   
How long did your mom have symptoms? Did this come on suddenly?  If she's currently suffering I would suggest a trip to the ER.  Maybe you could post the area you are in and ask if someone has a good GI for her to see?  Good for you for contacting this forum to ask for help.  So what current medications is she taking what are her symptoms?  More details will help us give suggestions.  Again, how great for you to contact us. 

New Member

Date Joined May 2008
Total Posts : 5
   Posted 5/28/2008 8:04 PM (GMT -7)   
The main symtom is she has blood in her stool. Again, it depends on the week. All I know is since October, she's had to get 2 units of blood almost every month. She currently has a GI doctor, but he's starting to scratch his head.

I'm hoping she'll get a referral to go to the Mayo clinic. We're in Tucson Arizona, Mayo clinic is up in Scottsdale Az

For now, I think she's only on the entocourt and humira. She's tried several others, but it gave her stomach problems and didn't ease up the bleeding at all.

Regular Member

Date Joined Jul 2007
Total Posts : 239
   Posted 5/28/2008 8:40 PM (GMT -7)   
Entocort is a topical steroid that cuts down on inflammation, pain, and D for alot of people. I don't know if it helps with bleeding, I never had that problem. Humira is pretty heavy duty drug, its used for severe cases after other meds haven't helped, so it sounds to me like your mom is getting some intensive treatment. I hope you get your referral to Mayo and I hope they can help your mom some more. This DD is so different for everyone that the combinations of meds, therapy, foods, natural supplements, whatever, never seem to work the same way for two different people. She might just have to try and find the combination that works for her.
diagnosed w/Crohn's 11/06, solving the mystery of years of on/off abdominal pain. No more "it's just a virus". 34f with 2 boys, a lovable dog, and a wonderful husband. 150 mg Imuran, bentyl, vicodin as needed, omeprazole, fish oil, sublingual B12, metoprolol for orthostatic hypotension and heart palpitations. Bowel resection 9/07. Doc says no active disease, but flare-ups anyway. 11 year old son with IBS-C, on Bentyl.

Veteran Member

Date Joined Aug 2007
Total Posts : 1202
   Posted 5/28/2008 10:23 PM (GMT -7)   
Has your mom tried Remicade? It is similar to Humira but delivered by IV. There is also Cimzia and Tysabri (only if all else fails!!!!) that she could try. Entocort is a steroid by mouth, so systemic, but metabolized quickly. it's also more effective for inflammation in the small intestine. If she's bleeding bright red, it's more likely from the large intestine. She might want to ask the doctor about prednisone instead of the entocort. Just a different steroid, but it will help the large intestine more.

I bleed quite a bit and am frequently low on blood. I've only had transfusions once, but I just sort of run low. There are also rectal meds that your mom could look into. The enemas will deliver meds directly to the rectal region(if that's where the bleeding is occuring) and that will help too.

Hopefully the referral will offer a fresh set of MD eyes to offer suggestions to your mom. It's tough living this way. it's great that you are so supportive!
--40 year old female, dx as UC in '04 (1st symptoms in '03), switched to Crohn's in '05, 1 fistula, crohn's colitis, limited to large intestine
--rejected (reaction/didn't work): Asacol, AZA, 6-MP, MTX, Remicade, Humira, prednisone
--stuck on methylprednisolone, tried Prochymal in Phase III study (can't wait til it's approved!)
--started Tysabri 3/21/08
--single mom to 10-year-old girl

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