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Replies to "Thank you Kari, I just want to say you are such a wonderful person to take..."
hi @kariulrich I haven't written in awhile because my computer would not load up. I am just going to send this as a test since I have tried writing so many times and it not working.
hi @kariulrich, well my computer is working now, thank God, I need it. I really think it is so important and helpful to talk to otherw with the same things going on and understand what it is like to live this everyday. Also I totally agree that even with the stenosis fixed, damage has been done. I feel my stomach is just so messed up I am just going to have to deal with it,....... So I tried writing and I had a question for you. What is pharmacogenetic testing? I never heard of it. I know you have mentioned some of your meds before, but did any help you? My GI dr. said she wouldn't give me anything since I am taking similar meds already. I take the pantropazole everyday, but other stuff is as needed for nausea. I have meds for my chronic fatigue that I have been on for years. I wonder if I am 'immune' to them now and this testing may help???
As far as the low fodmap, that is interesting. It is a diet so I wonder if the testing is to see which foods to avoid. I haven't started yet because I have to do it 100% and it is difficult with checking ingredients in everything and so on. Plus I do feel some relief since my procedure.
Well I hope you get back some answers from your testing. I'll be interested to hear what they have to say. I will keep my fingers crossed for you!
I have my appointment on Thursday, I will know a lot more than and can share with you my results, what they mean etc. @kanaazpereira do you know of any videos or information on Pharmocogenic testing? We need to have something explaining what it is.
@jmmb Thank you for kind words. I do not know how I would get through some days without people such as yourself! I am so glad to hear that your doctor a intraoperative ultrasound, that seems to be the best way they can look at your arteries and what is happening. I think it was good he did not mess around too much, sometimes that can make things worse. I know MALS pain is multidimensional so it makes it difficult for the patient to articulate symptoms. Despite my surgeries I have always had bowel problems, I believe it is the second part of mals that needs to be addressed. This disease affects the vascular system, and when we correct the stenosis we a correcting the medium sized arteries, however I believe damage has been done to the smaller arteries that supply our gut so some of the symptoms remain, diarrhea, constipation, urgency and cramping of the gut. I have tried so many different medications to help my quality of life, but it is hit and miss and it takes so much out of you. I just got pharmacogenetic testing done and will get the results in a couple of weeks. I am hoping this will help figure out what medications work the best for me. There is another mentor, @kdubois, who has been awesome advocating for patients going through pharmacogenetic testing.
I also saw on facebook a company that does some kind of low fodmap home testing... I thought I had saved it now I cant find it! Grrrr I will keep my eye out for it again, it was unique and I thought it looked interesting, hopefully it will pop up on my facebook ads again!