Thanks for you replies everyone.....
I was doing well for about a week and it was not until the Cleveland appt. did I slip back into this depression. My problem is I do not know what makes me feel good anymore....I changed my bag today, skin break down, etc and was in the bathroom for over 45 min....with a liquid yellow ouput. I just finally ate some cherrios dry for today, but I had quite a few.
Robin your words are so loving and comforting....I hope that I can get there. I believe this period of uncertainty is what is weighing do hard on my heart right now. The no answers and no definitive plans. I am so frustrated with being told "you are such a difficult case" or "you are such a big question mark and we have no idea why this has happened to you." There are parts of me, yes, that i know my ileo has made me feel better. I have color in my face and have not had that in months....it is working and stool is not stuck inside of me rotting and without a way to come out. There are then the things that I do not feel any better....horrible back pain that has not gone away and no one can tell me what it is from, but I live on a heating pad. I also am still having nausea issues seven weeks out and I am not sure if this is normal.
I have a beautiful life and I feel that I cannot find its real meaning. My husband has beeen wonderful and so supportive of my ups and downs. I guess I just need a frm conclusion to my case. Dr. Remzi is the third doctor I have seen and if he cannot figure it out I do not know who could. I feel selfish because this bag has brought so many of yo urelief you have not felt in years....and I am complaining. I think I would feel better if I just knew why? or how? and what can i do. If nothing, then maybe it will be easier to start dealing with.
I have not left the house yet today....blinds closed, dreary day so far. I may try and go for a walk.......thanks again for your support. I really need it right now and you all are the only ones who understand me.
Thanks everyone for you loving advice.....
Yesterday was not good, but I am going to try and make today better. I cannot do anything right now, but wait for the answers from CC.
Krista and Takera- we have become a very similar story......thank you for all your continued kind words and prayers, I truly appreciate it. It makes me feel good to know that at least I have helped others on this site at sometime. I never thought my case would come to the point it has....I never imagined in my wildest dreams having a bag, but it did save my life and I have to try and remember that. It makes me feel some sort of relief knowing this nausea is not made up in my head. Zofran is the only drug out of four that has worked for me....I am on ohenergan right now because my insurance will only give me 20/mo and I am supposed to get 90-120. I go through the 20 in a week. I am working on a prior authorization, but its been over two weeks and I have not heard anything. My surgeon has made a referral for a psych doctor as well, but I have not heard on that in a couple weeks either. So if Takera's problem is in her rectum why do they not think the j pouch would work for her? I am just curious what they have said becuase it will help me prepare for what I could hear. As far as I know....my small bowel has a normal transit time. I was tested in January. My latest defecography showed failure to empty rectal vault in January as well. I have not had an anal manomety since 07....so that one should be interesting. I passed some mucous and stool again yesterday......what do you all think of this?
Thanks Ohio and summerstorm and all who have replied. You have no idea how much your words mean to me.....
Oh Goodness....Thanks everyone for all your support and kind words...
I had a little better of a day today, but having horrible insomnia tonight. Its almost 3 am and here I am just sitting up thinking of my bag, the insurance approval, the appointment, the tests and how i deal with the bag during them, my future, and my ability to accept. I had a good cry today with my best friend...its so hard for any of them to possibly understand how I feel or where I am coming from. I know so many of you with ileos do not understand this disease of inertia....but its awful and completely opposite of your problems. Funny how I would have paid millions to have diarrhea or butt burn....how ironic are these horrible diseases.
Krista and Takera...I do have all of my retum and all of my small intestine. So maybe just maybe I will be a candidate for the j pouch. It my HOPE and DREAMS.....thanks you for all your continued prayers and words of encouragement. I have missed hearing from you both and pray that Takera continues to have success with her ileo....the poor thing went through so much. I love you guys and admire your strength.
Janie and Chassity- Thanks for your kind words....this has been a horrible time for me and your words mean so much. Chassity, I also admire your strength and if I do here that the bag is final I hope you will hold my hand....i will need you.
I'm praying that you have better days ahead of you. It's always hard when you don't know what is going on and you're in so much pain. I know work will help to ease the pain and take your mind off things for the moment; it will especially be nice to be doing something you love and are good at. I understand how you feel about the bag because I almost ended up with one a couple of weeks ago that wouldn't have been necessary at all so I would be feeling the same way right now but remember it saved your life and right now for some reason your rectum is starting to work and it hasn't in years so maybe, just maybe time is on your side and things are changing for you. These drs are giving you 6 wks, by then, you don't know what changes could be taking place.
Go back to work, remember that we all love and support you and try to take each day as it comes; do just one little thing to make each day brighter for you and you will see each day will get better.
Blessings, peace, and prayers,
Thanks everyone for your kind words and for following my story. I am going to call tomorrow and check on my CC appointment being approved. I have a question....being new to this ileo I am not sure what is normal. I have been having luft upper quadrant stabbing pain all day today since I was in the shower this am. I am having output but onlly emptied twice today so its definately decreased and my back pain is out of control. I have taken my meurontin three times with no relief as well as ibuprofen 2 times as well.....just curious if you had any thoughts.
Thanks again for thinking anf praying for me...I had a better day emotionally today, but physically bad...its always one or the other it seems :(
Sorry to hear of your emotional and physical plight. I also pass stool and mucus - been doing so after around 2 weeks after surgery. it is normal. could be you had problems passing stool before because of the obstruction you had before emergency op? dont no.
i havent been on here a while. I still get bloated but nothing like before and tummy ache from time to time. i still cant eat fruit or a lot. i will always have a sensitive gut.
i am having a rough time at home (facebook status). cant really post on there cause my kids will see. marital problems big time and family issues going on. i am really depressed right now.
all the best x