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I am 28 months post whipple. Recovering from surgery has been EXTREMELY difficult. I was in hospital twice in the same year after surgery. I have not recovered well and deal with strength and stamina issues. I still cannot walk properly after surgery and have no abdominal strength.
I am still tired all the time. I have to take naps during the day. I hate that I miss out on things but I truly just don't have the energy. I take vitamins to make up for the malabsorption.
I deal with chronic diarrhea which is not controlled with meds!! This causes quite a bit of stress as may not make it in time.
I cannot eat without taking Creon. I cannot eat what I use to. I cannot eat a full meal. It's much smaller than pre-surgery.
I take a minimum of 25 pills a day in order to eat, digest and absorb nutrients. That's a lot of pills!
I cannot gain the weight back pre-surgical. I have tried everything.
We have been diagnosed with a disease that kills most people! It's like having a ticking time bomb inside of you.
We are what you call the invisible disabled. We may 'look normal' on the outside but clearly have a disabling conditions that make functioning normally difficult. One of these problems is bad enough but all of them together.
What I have found is that people want you to be better because it makes them feel better. It isn't about your needs and well being. It's about them not wanting to acknowledge your pain and suffering for what ever reason, makes them feel bad, difficulty dealing with death etc. I don't know but regardless, I am truly sorry that you are dealing with this. Please know that you are not alone. Everyone is different and every heals differently but that does not negate your experience.
Sending you positive and healing energy.
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