- Location
- Midwest
Sorry its taken me a bit to update on here. We got back late Friday. Been waiting to post until we got biopsy reports back. We got them today.
I am so glad we went. It was an easy drive. 6 hrs, but felt less. I loved the GI we met with and loved his nurse. The whole place was really great. They are so professional and calm. Just what we needed. We met with the GI first thing on Tuesday. He said that even tho Brian has been dealing with this for years, he likes to start at the beginning and 'teach' us what he knows about crohns. He talked about treating 'brian' instead of treating textbook crohns. He ordered a colonoscopy and MRE. Even tho we had just had a scope in March, he said he wanted to see everything himself. Brian's area of trouble has been his rectum and this area looked still very much inflamed, but not any pus. It was white, which might be indication of healing starting to happen. In March, our other KC GI said from biopsies 'his crohns was everywhere except his esophogus'. After getting biopsy reports, Our Mayo GI said that his esophogus was good, his stomach initially showed 'streaking', but upon further study...this is minor abrasions from the NG tube. Its expected and not anything of worry. He said there was evidence of some microscopic areas in the large bowel, but that he expected this. And his terminal ileum was swollen shut again. The MRE showed nothing above the terminal ileum.(our old GI had told us in July that his small bowel was affected-all based on his growth and no MRE ordered-which bothered us...felt like a guess)
Mayo GI said the pill camera is not a good idea right now, but maybe in the future. On our first visit with him, he discussed that sometimes surgery is what a patient 'needs', but on Friday after all our tests, he doesn't feel this is necessary. He wants to take an aggressive approach with the medicine. He added mtx back in, but by injection and wanted to do Cimzia every 2 weeks instead of its usual monthly interval. We just finished loading doses every 2 weeks apart, so we'll just stay on that schedule. He upped the EN to 90% of his caloric intake. He agreed to be the lead in Brian's care and the KC doctors will report to him since that's what we'd like. We'll repeat colonoscopy after 6 months and before 12 months from now. He also will do labs every 2 weeks for 3 months. (It seemed like we had to remind old GI to do monthly labs when B was on oral mtx. )
I really really liked him. The pictures from the colonoscopy were large and were photographs! I was really impressed with Mayo. One thing I liked was when i conveyed concern over the increased amount of Cimzia...he explained it like, "It matters what Brian's body is doing with the Cimzia. If he is producing 'larger amounts of tnf...and we are giving him the usual amount, then that's only knocking off the tip. He said some people metabolize the medicines more quickly and the drug leaves their body faster...thus needing more. He said the risks don't increase with larger doses. Its either you're taking it or you're not. And he watches more for infections far more than the t cell 'C' risk. After 6 months, if Brian is doing well, then he may back off the meds a bit. I asked what he labeled Brian in regards to mild, moderate and severe. He said, His crohns is moderately active. He feels hopeful we'll get it under control. I loved his positive nature. That has been a big complaint of our current GI. He is also going to be instumental in us working with a new GI at our clinic that he knows and has come to Mayo to train. We slightly touched on the area of feeling unsure and unconfident in the care we've been receiving in the past 14 months. Also, he told us that the team of GI doctors met and discussed Brian. The "Team" approach.
Also, Mayo has a portal. We can email the 'team' and see lab results etc. Awesome!
Sorry this is so long!
I am so glad we went. It was an easy drive. 6 hrs, but felt less. I loved the GI we met with and loved his nurse. The whole place was really great. They are so professional and calm. Just what we needed. We met with the GI first thing on Tuesday. He said that even tho Brian has been dealing with this for years, he likes to start at the beginning and 'teach' us what he knows about crohns. He talked about treating 'brian' instead of treating textbook crohns. He ordered a colonoscopy and MRE. Even tho we had just had a scope in March, he said he wanted to see everything himself. Brian's area of trouble has been his rectum and this area looked still very much inflamed, but not any pus. It was white, which might be indication of healing starting to happen. In March, our other KC GI said from biopsies 'his crohns was everywhere except his esophogus'. After getting biopsy reports, Our Mayo GI said that his esophogus was good, his stomach initially showed 'streaking', but upon further study...this is minor abrasions from the NG tube. Its expected and not anything of worry. He said there was evidence of some microscopic areas in the large bowel, but that he expected this. And his terminal ileum was swollen shut again. The MRE showed nothing above the terminal ileum.(our old GI had told us in July that his small bowel was affected-all based on his growth and no MRE ordered-which bothered us...felt like a guess)
Mayo GI said the pill camera is not a good idea right now, but maybe in the future. On our first visit with him, he discussed that sometimes surgery is what a patient 'needs', but on Friday after all our tests, he doesn't feel this is necessary. He wants to take an aggressive approach with the medicine. He added mtx back in, but by injection and wanted to do Cimzia every 2 weeks instead of its usual monthly interval. We just finished loading doses every 2 weeks apart, so we'll just stay on that schedule. He upped the EN to 90% of his caloric intake. He agreed to be the lead in Brian's care and the KC doctors will report to him since that's what we'd like. We'll repeat colonoscopy after 6 months and before 12 months from now. He also will do labs every 2 weeks for 3 months. (It seemed like we had to remind old GI to do monthly labs when B was on oral mtx. )
I really really liked him. The pictures from the colonoscopy were large and were photographs! I was really impressed with Mayo. One thing I liked was when i conveyed concern over the increased amount of Cimzia...he explained it like, "It matters what Brian's body is doing with the Cimzia. If he is producing 'larger amounts of tnf...and we are giving him the usual amount, then that's only knocking off the tip. He said some people metabolize the medicines more quickly and the drug leaves their body faster...thus needing more. He said the risks don't increase with larger doses. Its either you're taking it or you're not. And he watches more for infections far more than the t cell 'C' risk. After 6 months, if Brian is doing well, then he may back off the meds a bit. I asked what he labeled Brian in regards to mild, moderate and severe. He said, His crohns is moderately active. He feels hopeful we'll get it under control. I loved his positive nature. That has been a big complaint of our current GI. He is also going to be instumental in us working with a new GI at our clinic that he knows and has come to Mayo to train. We slightly touched on the area of feeling unsure and unconfident in the care we've been receiving in the past 14 months. Also, he told us that the team of GI doctors met and discussed Brian. The "Team" approach.
Also, Mayo has a portal. We can email the 'team' and see lab results etc. Awesome!
Sorry this is so long!
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