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St Albans & Harpenden Review: Photograph of the Author

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10:17am Sat 17 Mar 12

gutlessjustin says...

Hi Michael, I have Crohn's, am on TPN with a stoma, and am in the frame for a transplant. Re your questions:
1. I always use braces except when playing sport - got nice baggy elasticated wear for that. There is a sports belt designed to protect the stoma - it incorporates a sort of cup thing which covers the stoma. Ask your stoma nurse / supplier about this. Else get back to me.
2. I never do this. My stoma is at waist band level, the braces work well. Get some trendy ones if you feel a bit weird about braces.
3. I had a series of ops which led to needing TPN about 5 years ago. I was totally knackered for a long time (years I'm afraid). But plugged away at exercise and now I'm more or less able to stay awake all day.
4. Soup makes a very quick trip through my system. I avoid soup unless it's REALLY good and there are facilities nearby.
5. I haven't had this problem. In hospital I had crisps on prescription but could barely eat them (and I love crisps).
6. Same. But be careful with mints (and other sweets). Check the ingredients (of everything) - sorbitol is a diuretic (anything ending in 'tol' should be avoided), I don't trust aspartame either.
7. My hair all fell out but most of it came back the same colour.
8.No experience of this.
Check out my website, gutlesskayaking.com for more info re my story etc.
Justin
Hi Michael, I have Crohn's, am on TPN with a stoma, and am in the frame for a transplant. Re your questions: 1. I always use braces except when playing sport - got nice baggy elasticated wear for that. There is a sports belt designed to protect the stoma - it incorporates a sort of cup thing which covers the stoma. Ask your stoma nurse / supplier about this. Else get back to me. 2. I never do this. My stoma is at waist band level, the braces work well. Get some trendy ones if you feel a bit weird about braces. 3. I had a series of ops which led to needing TPN about 5 years ago. I was totally knackered for a long time (years I'm afraid). But plugged away at exercise and now I'm more or less able to stay awake all day. 4. Soup makes a very quick trip through my system. I avoid soup unless it's REALLY good and there are facilities nearby. 5. I haven't had this problem. In hospital I had crisps on prescription but could barely eat them (and I love crisps). 6. Same. But be careful with mints (and other sweets). Check the ingredients (of everything) - sorbitol is a diuretic (anything ending in 'tol' should be avoided), I don't trust aspartame either. 7. My hair all fell out but most of it came back the same colour. 8.No experience of this. Check out my website, gutlesskayaking.com for more info re my story etc. Justin gutlessjustin
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