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14 replies

Antibiotics.. Does this mean

B BodaMember
Hello
I have posted in the past about my daughter who has been struggling for a long time. Our latest struggle started in January when she was hospitalized again. She was still bleeding and so they decided to hook her up to IV Flagyl , MRI, scope and dilation. Flagyl made her very sick to her stomach. The pouch showed mild inflammation for the first time, cuffitis, and stricture. We were sent home with Canasa and protctofoam. She continued to have bleeding so they dilated again and this time the pouch was more inflamed. So we decided to try Tacrolimus  suppositories and Canasa , another balloon dialation and home dilation. She continued to bleed the Tacro didn't help at all. We finally tried Cipro and after four days she stopped bleeding, her frequency was down and she could sleep. She stayed on it for two weeks and then stopped. Four days later blood. The doctor said to go back on it. Blood stopped the next day. She started feeling bad after another four days on it ..nausea and muscle pain.
We didn't know if it was the Cipro or a virus. So doc said to go off and see if she felt better. She felt better but after four days she had blood. She switched to Alinia yesterday and hasn't had blood yet today.  Does this mean she is dependant on antibiotics now? What about the cuffitis? Has anyone used Alinia?
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Jan DollarJan DollarModerator, RN, retired

Sure, IBD related arthritis is common. I have it and have taken a variety of biologics for it (Currently Cimzia). Generally, what works for the IBD should help with the arthritis. I still get pouchitis though, and need periodic antibiotics. The bleeding is troubling though. Most bleeding is from cuffitis and treatment of the IBD should help with that. But bleeding could also mean a C. difficile infection. Has she been tested for this? If not, I'd ask about it.

 

Jan

Last edited by Jan Dollar
B BodaMember
She was tested awhile ago and it was negative. She has bled on and off since takedown. They would scope and find nothing but mild cuffitis and a slight stricture. They always attributed the blood to that. The pouchitis came on in the last couple of months. They thought it might be caused by the stricture. But the Cipro made the blood disappear. That is what I don't understand. Can Cipro cause back pain? And wouldn't the arthritis get better if her pouch was healing? I am so afraid for her. She is so young to have so many health issues.
B BodaMember
I have asked about Crohns and they keep saying there aren't any signs of Crohns. She has probably had 8 biopsies in the last year. Would they see any of those things on a MRI? She had a MRI with contrast and they said everything looked good. That was in January. But she had a endoscopy and had some duodenitis. That was in March. Thank you for responding to my questions.
Jan DollarJan DollarModerator, RN, retired

It is tricky because not finding signs of Crohn's does not completely rule it out. They could do IBD serologies (helpful, but not conclusive). You could also do small bowel imaging, like CT enterography to look for lesions. Maybe a second opinion from someone else Is in order? It could be that anything that could be done is being done, but sometimes a fresh look with new eyes is useful.

 

Jan

B BodaMember
I have thought about it. We go to Children's hospital and she has seen several IBD doctors. I wonder though if they will go against each other if they disagree.
We have only seen a group of doctors there. She hasn't had a CT scan. They seem to want to only do a CT scan if absolutely necessary because she is a child.
But I will ask about those possibilities. It has been two years of questions. She has had 4 surgeries, 9 procedures, numerous meds, numerous X-rays, dozens of blood draws and many tests, 4 dialation and months in th hospital. She has been under anesthesia 13 times in two years! We are hoping for some sort of answer.

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