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Help from UC Patients Who Have Been on Remicade

Hinda L fMy daughter was just diagnosed with Ulcerative Colitis.

She is the oldest of 6. Some of my other kids have Gastric issues but we were very surprised with this diagnosis. I’m currently trying to adapt to the lifestyle changes she is going thru.

She is 17 years old, and was diagnosed at the end of June this year. Pain, bloody diahrrea, tired, swelling from prednisone.

Hinda’s Daughter 17 and Just Diagnosed with Colitis

My daughter was having bad stomach pain and bloody stools for weeks. I called our family GI an they made room for her right away. After stool cultures were normal and blood work showed signs of infection, we were headed for endoscopy and colonoscopy that confirmed UC. she was prescribed asacol and prednisone. asacol was not approved by our insurance so apriso was given instead. she had horrible pains after taking it much worse than before she started, so i mentioned it to the dr and it seemed like the meds were not working well together. our gi told her to stop taking it and we increased the prednisone to 60mg and added flagel. the horrid pain subsided and her frequency to use the bathroom decreased and bleeding too but after 4 weeks we did blood work and it didnt show much improvement of her condition. she is eating very few foods she is lactose intolerant and as she is afraid of fats fiber salt sugar and sulpher etc.. bread, rice, lean fish lean chicken. life has been so rough and shes feeling so bleak., and nothing with tatse to eat. Any recipe ideas??

Anyways back to my question, the doc wants us to start remicade. We are ready, but my question is we are from NJ and have been spending the summer in florida, the atmosphere has been good for her down here. So she will travel to NJ for the remicade but how soon after her first dose would you reccommend her being able to travel back to Florida? For all of your experiences with the infusions.

Finding out about this UC site is so comforting knowing there are others here going thru similar things!! we have felt so isolated this summer. I started looking for support groups and came back with nothing in our area.

We have cut out so many foods. Dairy, Egg, oils sugars salts fruits vegetable. We see slight changes.
The prednisione is causing aches and swelling.
written by Hinda
submitted in the colitis venting area