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Reply to "Weight loss"

The topic of weight loss caught my eye as I too am struggling in this area. I have just passed the one year mark since my first surgery and I am still struggling for my body to adjust to this. For those of us in this group it is a disappointment to have gone through such a major surgery, 2 really and in my case I have the exact same symptoms as I did before my colon was removed!! I know my UC had reached the point where I had no other option, no medication had worked and I now had some cancer cells that had shown up on a colonoscopy. But I had been slowly losing weight while suffering with the UC, and then lost about 10 pounds while in the hospital during the colectomy. Gained a little then had the takedown and that was rough with nothing going as planned and had to have a PICC put in and was fed with TPN for about 9 weeks. That certainly helped me gained weight but at the same time my GI system was not doing well adjusting to having food go through it so when the PICC came out it has now been a slow steady decline in my weight again. Have lost all I have gained with the PICC. Yes it helped but clearly was a bandaid and did not fix the problem. I am a small women, only 5'2", but I now weigh only 82 pounds and have no energy at all and look like a chemo patient. I literally don't want anyone to see me, which is not a problem since my constant diarrhea or pain and cramping keeps me close to home. My surgeon has tried many different meds and now I am seeing a GI he referred me to. So far just had blood work, stool sample, upper GI scope and some new meds. See him again on Tuesday. I take Flagyl even though the pouchoscopy showed no bacteria; both docs said no pouchitis. But when I went off of it my diarrhea became more severe and more watery. With the Flagyl I have fewer movements, and it is thicker and a bit more controllable. This still is no life. At what point do you and/or your doctors say this has been a failure and your body is just not going to adjust to this? Will drs keep pushing different meds and trying different things and never really say that and you have to finally firmly make that decision? I know for a surgeon it is hard to consider something they did as a failure but I don't think he did anything wrong. My body is just now accepting this for some reason. Maybe it is too soon to call it quits but my husband and I are very concerned about my weight and nutrition. This new GI dr mentioned the possibility of a PICC line to my husband when I was in recovery after my upper scope if I couldn't put some weight on. I suppose we will discuss that next week as nothing has changed with the different meds he put me on. My life has been on hold for so long and I was so hopeful a year ago when I went through this surgery and I thought by now I would have a new normal and be pain free and gaining weight. If only... I am curious what kind of conversation you had with your doctor about going back to the colostomy bag? Thanks for listening.

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