Posted 6/28/2012 5:21 AM (GMT 0)
I'm 5'2" with an ostomy as well. Crohns for 28 years. I too was down to 85 lbs and then 78 at one time very scary. At one point, I was on TPN and told to eat 2500 calories a day. The best advice I can give you is not to worry about the number but the nutrition that you are taking in. I was fortunate that even at the age of 37 my mom came and cooked for me. My docs and I worked on protein rich and nutrient rich foods. I also got a great book called Cooking Well For the Unwell. Lots of ideas for all sorts of issues from trying to build appetite to increasing certain nutrients. Homemade chip broth, bread, pudding, jello, eggs were much help to me as was eating small, I mean really small, meals SEVERAL times a day. When things began to become stable, I ranged 105-110. That's where I was when a flare hit me in March and prednisone brought me to 120! In my basement I have clothes in sizes 2 to 12.
As for swimming, there are some covers you can look into for quick drying or you can try a two piece system--put a small puch on for swimming, throw it out, and switch back to your regular pouch. I'm with you, I hate the wet pouch after a shower. I use paper towels a d the hair dryer.
Have you looked at the UOAA website? www.ostomy.org. Very very helpful. Also, the ostomy support group in my area has been my saving grace. They can even send someone out to visit you. Wearing this pouch is certainly a huge challenge but it saved my life.
You sound like you are a fighter and an active person. That's good. Keep it up. Sometimes it can be a daily struggle for me but I keep going.
I can understand your wanting to get rid of the diseased small bowel but if your doc thinks the remicade has a chance of clearing it, it's best to try not to lose any more intestine. You've got another 80+ years ahead of you and need to keep as much of the intestine as possible while you can.
Please keep us updated. I am sending good positive and strong vibes your way!