Skip to main content

Reply to "Advice on pouchoscopy results?"

Toughenough,

I have been treating my cuffitis on and off for a year and now again I am on rectal meds and after a week or so I still feel irritation. My pouchitis has not subsided so I keep wondering if my pouch time is limited. I know how frustrating it is. My GI said there is always some level of inflammation in our cuff but often it can be asymptomatic as mine was prior to the scope. I was surprised he found cuffitis at the time of my scope because of this and even more surprised about the small ulcer at the anastomosis and the level of pouchitis in my pouch.

Some days I just wake up in an angry mood and I do not want to deal with people or the other pressures of raising teens etc. I too am tired of the well meaning people I know who are ignorant regarding this disease telling me to see a nutrition expert as if that will cure my disease. I no longer discuss my frustration or illness with anyone else other than those on this board as I feel it is useless. It is unfair for me to blame others for not understanding this disease. Medical science still cannot determine what causes it.

When I feel like this, where all I know is pain, it really brings me down. During those times (which have been often over the last year) I wish I could run away from myself but where would I go? I envy healthy people who abuse themselves with alcohol and cigarettes and bad food choices and appear healthy as an ox on the outside. I wonder why I cannot be one of them when I try to take such good care of myself and my body still continues to attack itself.

I guess those of us with chronic cuffiitis will probably be on rectal meds indefinitely especially is it helps keep us in remission. The thought of dysplasia showing up in my cuff and then being faced with possible pouch removal is something I prefer not to face. Because of that, I will continue to take the meds as prescribed and hope one day down the road I can be relatively pain free and my wish for you is the same.

Lately I keep thinking I will give myself a time frame where if my symptoms and my continual pouch issues do not improve, as well as my mental and physical well being, that it is time to willingly get rid of the pouch. I just hope the people who love me will still be around at that time as I know living with me over the last year has been no picnic.
Copyright © 2019 The J-Pouch Group. All rights reserved.
×
×
×
×