I had to have an ileostomy in September and have had so many problems with it.From living in a place where ileostomies are virtually unheard of and starting out on colostomy supplies to now having to mail order everything in order to get the right things and now it is so out of control that I cant keep enough supplies on hand because my doc wont increase my orders and the company says I cant just order and pay for the extras because of medicare issues.My biggest problems are that my ostomy is extremely overactive , nothing but liquid comes out and gas my god the gas is soooo bad and no medication slows it down (Im on 8 lomotil and 8 immodium a day at present)This past week I have awakened to find that I was in a mess because the wafer had come undone because it had overfilled with air and diahrea.It gets so full of air that it literally blows the thing off!I have taken every type of gas med available to no effect and cannot find any relations to food as I do not eat anything that could cause gas.Even when I dont eat I have it , it is constant and wont slow down for nothing.The only help I have found as of yet is tiny little packes called osto-gel that when inserted into the bag every time I empty causes it to thicken liquid stool to at least a small degree.Problem is Im only allowed 300 per 90 days and when you are emptying every hour or so they are gone within a month!And I cannot get anymore , doc wont ordr them and no place here carries them(nor anything else I use)the mailorder company I use says I cannot order more even if I pay for them myself I can only get what medicare allows unless the doc writes an order for more which I dont understand. They dont help that much but without them I end up emptying every few minutes so they at least give a little help.I cant go on waking up like this and I dont know what to do , nothing works!Any help or advice would be so appreciated.
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