From Crohns disease to a bowel transplant being a patient isn't easy 110312

First published in Blogs St Albans & Harpenden Review: Photograph of the Author by

What can I say - no changes over the last couple of days which I guess shows things aren't getting worse. Got to stay positive.

Rather than repeat the same old bowel transplant recovery stories I thought that I would use my blog today to ask for some answers to situations that I have found myself in with either my stoma or as part of my transplant recovery. I know that quite a few people who read my blog have had their own experiences and therefore might have a few solutions. Even if you haven't then some times fresh eyes can also help with something that is so obvious to others but when it stares you in the face on a daily basis you can easily overlook it. So here goes.

1. I am sick of constantly wearing trackie bottoms. However given the position of my stoma if I wore jeans or trousers especially with a belt then it would cut right across the stoma and hurt. Any suggestions? I guess braces maybe but any other thoughts?

2. I always have my stoma bag hanging outside my trousers and don't tuck it inside. If I did then the waist band would probably sit just below the site of the stoma and prevent the output from dropping in to the stoma bag. Is this the same for everyone or am I missing a trick.

3. Although I am definitely trying to do more exercise I feel constantly shattered. Any ideas other than iron tablets to increase my energy.

4. Has anyone with a stoma ever successfully drunk soup? It always seems to come out again very quickly and my dietitian said that she had heard of quite a few cases like this so I stay off of soup.

5. Most days I crave salty things, whether it be salty crackers or even a few crisps. I do use dyralite in my fluids so I wondered if there were any other suggestions?

6. At the moment I seem to constantly have that awful sicky taste in my mouth and therefore always suck mints. Any other suggestions?

7. Has anyone experienced their hair colour changing. Mine now seems to have brown flecks in it? Is this due to some form of deficiency?

8. When it is cold out my joints continually ache like crazy. I know that is quite a common complaint but does anyone take anything for this?

I think those are my main questions for now. Feel free to suggest any possible solutions.

Hopefully there will be a bit of progress to report on tomorrow but for now it's a wrap.

Bye x

Readers who submit articles must agree to our terms of use. The content is the sole responsibility of the contributor and is unmoderated. But we will react if anything that breaks the rules comes to our attention. If you wish to complain about this article, contact us here

Comments (1)

Please log in to enable comment sorting

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
  • Score: 0

Comments are closed on this article.

Our Bloggers

Send us your news, pictures and videos

Most read stories

Local Info

Enter your postcode, town or place name

About cookies

We want you to enjoy your visit to our website. That's why we use cookies to enhance your experience. By staying on our website you agree to our use of cookies. Find out more about the cookies we use.

I agree