Hi Kymberly -
Just wanted to check in and see how you were feeling? I also had some thoughts for you regarding why your output might not be that much. For me, at least for the first week, it was just liquid stuff that was yellow, not that much. i k ept asking why, and i was told it was because i wasn't consuming anything to really make more or anything with more substance come out. Maybe that could be it? Have you had any nausea/vomitting? I have faith that things will get better for you, i just think it will take time. Not only did you have your colon removed, but things now have to go through a different opening and become adjusted to that for a time until it is reversed. The reason i think my surgeon did not opt to move to a temporary ilestomy was that 1) I wanted to avoid that at all costs, 2) i cannot take off any time from grad school as it would set me back substantially due to the internship and field work experience, and 3) i just wanted to get this over and done with. He felt because my anal mamometry tests came back okay, even with some pelvic floor dysfunction, it was worth it to go with the ileo-anamosis. Now, if things, like the incomplete emptying that i have which was continued even after surgery, continue and i am miserable, then i will need to get another surgery for a permanent ilestomy...i just really want to try to avoid this because i am 28 and would ideally like to live a normal life at some point. But, if it is going to be the best thing, and if i get miserable and get to my wits end, i know there is an outlet...just one i am not ready for at this point in time.
As far as why my surgeon opted for the TPN - i have a past history of anorexia and malnutrition, which may or may not have contributed to my overall problem because i was anorexic from 12 to 22. While i have been in recovery for the past 5, almost 6 years, my surgeon was well-informed of all of that, especially before my first surgery as i thought it was my fault for having rectal prolapse from the malnutrition and anorexia. After all of the tests however and finding out it was colonic inertia and slow transit constipation, he told me to stop blaming myself. Regardless, when i went into the hospital for this surgery, i weighed about 100 (i'm tiny, 5'0). Now, my weight is dwindling in the 90s. My heart rate was very rapid when i was in the hospital, my blood pressure very low, and my blood tests were not coming back good in terms of electrolyte and potassium balances...so that was another push for him to push me on the TPN. He also said that after a week, if his patient isn't eating or keeping food down (mind you, he made it explicit that my case was complicated because of my extreme nausea and stubborn system) that he begged me to get on it because he was afraid that the lack of nutrition was substantially push back my ability to heal, my bowels ability to start working (and he feared they wouldn't work because, as he said, i am not out of hte woods for permanent ilestomy). So I think all of that paired together made him beg me to get it started. I was totally against it...i hated the idea of liquid nutrition because it brought back bad memories from when i finally got help on my own for my anorexia, and the threats of needing that and a feeding tube...so needless to say, i was freaking out a bit, even if it wasn't the same thing at all. I just wanted to be able to give my body the nutrition it needed and my body was not cooperating!
As far as me and how i am doing now - the foods, even though it is the same thing basically every single day lol, is going okay. I do get awful pains, especially at night, when i standup. Sometimes it relieved after going ot teh bathroom, but not completely. It gets hard to standup straight. Don't know what this is, if it is some reaction to something i am eating, or what, but something i will likely discuss with my surgeon when i have my followup appointment January 17, or if it gets worse ,via email before then. I am dealing with a ton of utter exhaustion, lack of energy, and feeling short of breath a lot, especially when walking up stairs or exerting myself, or even walking, in general. My cold night sweats are also starting up again...and so is tightness and pain in my chest. I am going to keep a close eye on this and if it continues for the next two days, figure it would be worth an email to the surgeon to be sure there is no reason for concern, particularly because i am at risk for developing penumonia after the plueral effusions and fluid in my right lung. Anyone ever experience this before?
At any rate, I wish everyone a happy, healthy start to 2014. May this be a good year for us all