Depending on my rate of healing, I may be able to have surgery for my ileostomy in June (1 year from previous surgery), if ever.
I was very discouraged, because I was under the impression that I may be ready for surgery. Every 2 weeks my sutures have been coming out and I've had to have them resutured to my abdomen and the tube. It's very uncomfortable and I've been taking pain pills to withstand the pain. It's going to be very difficult to wait through another 6 months of this.
I am so sorry honey.....I know you were hoping for better news, we all were. I cannot understand why your small intestine is so knotted? and how could he just feel this with palpation? I cant imagine having to go through the pain anf frustration and my prayers are with you. Its hard enough adjusting to a standard ileostomy. I am thinking of you. Are you not having any of these test suntil March???
Keep me posted. Love you.
If I could hug you right now I would and let out all your frustration. I can imagine it is spinning you down. Going through what you have already would have had me all in a mess. That is crazy that even the nurses had not seen an ileostomy like yours. Do they know why this happened back when you had your surgery to your small bowel. I know its so hard to play the waiting game and March probably seems like forever away, but at the same time I am glad they are being cautious with you. He, from what I have heard, is a great surgeon, and CC is where you are going to get the answers you need. He is being cautious with you for a reason. I KNOW how hard that is....but to be honest at this point where I am having be reversed...and cleared through CC only to not be able to go again its better to be sure and healed completely before you have another surgery.
I head to CC in Ohio a week from today. I remember leaving there in tears last year....your time will come sweetie and you deserve a better quality of life. It gets hard to understand why these things happen. I will be praying for you every night and day. I will pray that you can face this with all your strength. I have started talking to someone to cope with the complications and its not a cure all but it helps. I can imagine you are exhausted...you have never fully healed and having continued pain and complications with sutures just makes it all worse. Please know I am here anytime you need to talk.
I do understand you....and I understand your feelings with your husband. I hae that I have had to put mine through the last two years. I am on xanax to help with my fears. we are going through the same type issues at counseling.I am facing my What If's?? I know six mo seems forever away, but we are here for you every second of the way.
I do not know what I expect out of CC...i just want some answers and an end to this struggle. Having functional problems of the rectum and intestines like you is just so frustrating. I will pray everyday for healinf of your intestines and for the swelling to go down.
Love you honey and thinking of you daily.
I wish we lived closer as well.....I cannot imagine what you are going through and how hard each day it must be for you to not think about the negatives that have happened and to have an emmense fear for the hospital. I pass the one I have been in with each surgery on a weekly basis and it makes me cringe. I know how you feel sweetie. I agree with you that it is just as hard for the husbands to eatch us go though the trials we have and they are amazing. "In sickness and in health"...sure got work out of this vow.
It is hard in counseling, but I have found that imine, even though he doesnt understand, is open to listening and sometimes speaking the words to someone besides your husband or friends can be so beneficial. So open up....let your counselor be thre for you and guide you through these months coming ahead. My What If's drag through my mind every night, leep me up, and break me down...but with time my counselor said I will become desensitized to the worst case scenarios and be ok with what "could" happen. I wish I could be closer for you and if I had more time off and even had time to visit I would. Please know we are all here for you...every day. No one can understand you like we do and you need to get your feelings out to those who can help. We care about you so much. Let me know how this week is going....praying for your peace of mind, rest, health, and healing.