Well I am seven weeks post-op today. I guess I thought by now I would be getting more used to the bag and this possible permanent way of life. I feel like somewhere along the line I have really lost me, my confidence and the person I am so known to be....even by my poor husband. I saw my surgeon a few weeks ago now and he is referring me to a psychologist becuase of my continued weight loss and just overall affect. I am willing to go.....and see what helps. I have been on Celexa since my second admission and I just have not seen any improvement. I have days where I feel good, but then something always sets me spiriling backwards. This time it was my visit to Cleveland Clinic last Tuesday. I saw Dr. Remzi, the colorectal surgeon who is highly recommended and it was a mixed emotion visit for me and my husband. Basically, he said "i am very reluctant to do a k-pouch on someone with your history for fear of complications" but also said that he wanted me back in six weeks for further testing. Test I have had, but just not in the more recent time for him. He is setting up a co-appointment with a pelvic floor specialist and him and after the testing they are to sit me down and tell me my options. He said I basically have 1-4 options, but he is not sure which is best for me at this time. 1- live with ileostomy 2- close my stoma and risk having another life threatning obstruction/physical therapy/laxatives 3- possible j-pouch and 4- k-pouch.
The strangest things have been happening in the last week. Now remember, I have never had UC or Chohns.....I just cannot go to the bathroom. He did a rectal exam which showed definately no ability to poop, but he is not sure why. I have been getting urges to go to the bathroom for over a week and I have not felt this sensation in over 8 years. I know its normal to pass some stuff and one day I passed stool....I have also not done this without laxatives in I cannot remember. I am not sure if these are all good things. They said having this lopp lieostomy would give my body rest and things could, but most likey would not start just working again. The problem is in my rectum somewhere at this point. They ar enot sure if it is my rectum itself or the sphincter muscles. If it is my sphincter muscles then the k-pouch would be my only option, but he is very hesitant to do it, but said he would. If it is my rectum and my muscles are working then I am a great candidate for the j-pouch....I think I have basically had the first two steps.
I am just in such emotional turmoil....I feel like becuase of how the whole ileostomy came about I will never be able to fine "me" again. I am still having horrible nausea issues seven weeks out and pain in my general stomach. This has increased since Friday when I think I overdid things and lifted stuff I should not have. I am supposed to go back to work next Monday and maybe this will help me. I am an oncology nurse and my pt's have always humbled me....right now my own selfishness is all that I can think about. I have spent a lot of this week crying, the unknown is so scary and so frustrating. He said I am a very difficult case. When I return.....IF IF I can get insurance to cove rmy appointment I will be having three tests. An anal manometry, defecography, and small bowel testing. These two doctors will then overlook them and decide what is best for me. I am scared, nervous, and just trying to remain positive in what has been a negative situation for the last year. I feel like I am losing my mind.....I just needed to vent. I have everything else going for me....I have a great job, husband, family, friends, etc....but this bag consumes my life. I just needed someone to here me......
Chronic Lifetime Constipation, Dx IBS-C for 7 yrs
Diagnosed Colonic Inertia-Oct 2007
Total Colectomy with ileorectal anastamosis- Jan 28, 2008
Ileus with suspected leak- Feb 1, 2008, ended with four abdomal abscessses and 2 drains
Four abdominal abscesses- Feb 2008
Diagnosed with small bowel Fistula- March 6 2008
Drains removed- End of March 2008
Continued Constipation- biofeedback for 3 mo Aug 2008, Dx Rectal Inertia
Admitted with Small Bowel Obsruction April 4, 2009 and eremgency ileostomy 4/13
Loop ileostomy April 13, 2009 and still recovering woth abdominal abscesses out 4/24
Cleveland Clinic May 27 for poss. K pouch with Dr. Remzzi
"The Greatest Healing Therapy is Friendship and Love"