Reply to "Still afraid to eat"

I'm glad you are posting and I have been wondering if, perhaps, you are not receiving sufficient post-surgery support. Surgeons and GI's can be fantastic at what they do, but can lack the time to "hear" things and provide support resources. It's so important not to get so run down that you are then digging out of a bigger hole.

I experienced this (long ago) and learned I had to have a strong voice....say what is wrong, what I need and ask for who could help provide the solutions. If I felt I was about to be sent off without some tools to start sorting things out, then the appointment was not over. Otherwise very valid problems can go unheard and dismissed, all while you deteriorate.

Could you ask to see the GI in person or their support team and explain that your condition cannot wait weeks for an appointment? Let them know very specifically what you are experiencing and how you are dealing with it as you have explained it here in your posts?

I also agree with asking for a nutritionist who is specifically experienced with IBD and j pouch patients. A nutritionist not experienced in these areas can potentially steer you wrong and make things more difficult.....just something to be aware of.....It may not be the case, but I had it happen and it left me feeling there were no answers, rather than the professional not providing good answers.

Last, based on your other posts, it seems you returned to work rather soon after your last surgery. Perhaps too soon? I was a student when my surgeries were done so I had more time to work with, but recovery took many months as I was very weak going into it all. I cannot imagine going back just weeks after these surgeries. I wonder if not having more recovery time is contributing to the difficulties you are having, including the stoma wound weeping.

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