Fecal odor - other people out there?

Trimethylaminuria
#1

Hello! I am new here. I have been suffering from fecal body odor since I was 12 years old (or at least thats when i first noticed it… and so did everyone else) I am 26 now and I am tired of fighting this losing battle. I have been to so many dr’s that have no clue!!! I was falsely diagnosed with IBS and put on many meds that are useless!

I never thought that I may have TMAU because I thought it was exclusively fishy body odor and mine has always been a fecal odor but I have done alot of research on tmau and realized that many people with the disease have reported smelling like garbage, feces, or fish. I would really like to be tested. It is so expensive though. Has anyone on here been tested positive that has fecal body odor?

Any replies will be greatly appreciated!

#2

I was test and it came back negative, Not sure if it was b/c mine was not the fish odor. At this point I am fresh out of idea or what to do. Many people say it is all in my head, it really hurt that people would think that I would use this to get attention. I wouldn’t wish this on my enemies. Hang in there. I go tested at the University of Colorado.
It was about $250

PN

1 Like
#3

often I notice that people cough and sneeze around you and some people will make commits about the odor and if you have had that happen then you know it is not in your head and if you smell it yourself then its not in your head

#4

Hi ,
I’ve had that to happen to me.But what can you do take your probiotics drink lots of water and eat right and you’ll be o.k. Don’t let this disorder ruin your life.You have to keep living life as you know life has it’s ups and downs.Try to enjoy life and live life to it’s fullest because tomorrow isn’t promised to us.

Enjoy life while you can because if you look down the street someone is worse off than you think that you’re. Then you re think my life isn’t as bad as I thought it was.Take a deep breath relax and keep it moving. Smile it could be worse. Laugh a little and live a little. Just smile and continue what you’re doing because you didn’t do anything wrong don’t be sad get glad invest in yourself I promise myself that I’ll be happy no matter what . I promise myself that I would do something to make someone happy besides myself. I promise to get out of the house and have fun with my girlfriends. Most of all I promise to give God all the Glory.

Take Care,
Brown Sugar

#5

Yes, it is expensive but there is someone cheaper than University of Colorado. McGill University in Montreal does the test for $130. I went to Johns Hopkins Hospital Genetics lab in Baltimore, Maryland and gave a fresh urine specimen that they sent to Childrens Hospital Genetics Clinic at McGill. You can get a sterile specimen cup with a lid from any pharmacy yourself. You need to pack it in a larger plastic jar or bubble wrap or something, label with name and address and seal tight, then pack in a box with DRY ICE and send to McGill yourself if you are not near Baltimore.

Just Google Johns Hopkins Hospital Genetics lab and then ask for Amanda Berger. Get her e-mail address and ask her to send you the requisition order for McGill (a special form for this service) and send it yourself. You need the very first urine of the morning and add a teaspoon of vinegar to acidify it. All the instructions are on the form.

I also have the fecal odor. My test has been at Mc Gill about 6 weeks and hasn’t come back yet but just keep persevering. If you e-mail me again in a couple of weeks I will let you know if I got a positive. Good luck.

Stinky

#6

If possible could you contact me. I need someone to be able to e-mail information. Because sometimes I feel like given up…

#7

Thanks to you all for your comments & support. I think I will be tested… I have had every other test so might as well add another to the list. I may do the blood test instead of urine. I dont know which would be more accurate…

I am also a member at http://www.ibsgroup.org/ this is a great group of people who also suffer from fecal body odor.

#8

Please don’t give up if you have not been tested do so so that you will know what you are dealing with in my case I just force myself to go out and I try to ignore the comments of others. If you could do something out your condition I’m sure you would as would I. so hang in there please for all of us.

#9

Thanks for the information I’m going to try it, is there anyone out there that is holding down jobs please let me know how you are coping with being around others. I tried but the fishy odor was strong and foul so I quite my customers service job the entire building had a odor.

#10

Thanks for that It was what I needed to hear I love church but I have stop going because of the odor and I don’t want to offend people in church I tried to not eat meats but I still had the odor i do however drink lot of water. probiotics didn’t do to much for me is there a certain brand that you use

#11

Good morning, just checking to see if you are ok

#12

I am but I’m also not working at the moment which has been peaceful compared to what I face at work. At the moment I’m doing some administrative work for a client but not sure it this will cut it. I current make well over 85,000 a I’m not sure I can make this type of $$ without going back into the workforce. Anyway, I’m enjoying my time while I have it and focusing on other things like school which I will be completing in May of 2009 and on to the master program. Trying to stay positive and pray a lot that God will continue to help me and other to hold on until our change come.

Peace
Penelope

#13

Wow, penelope I think you really have it going on a masters degree that’s great did you check out that
work from home alphine access call center position the pay around 10.00 or more and hour to take calls
for company’s like office depo AT& t and others but you seem to be doing pretty good what about starting
your own business

#15

The blood test is for genetic purposes only,you should get the urine test to see if you have it,I believe Cashman does both. University of Colorado does urine only and Preti I believe does urine only.

Shania

#16

Just wanted to say I learned something new. Drop coffee. It has oil that leaks out of your behind and your pores. Makes a big difference in how you smell. Butt oil gradually leaks out of your rectum all day to lubricate your tissue area. Coffee seems to increase this odor. That does not mean stop cold turkey at once, just do it gradually as you will have withdrawal symptoms.

I found through research this butt oil thing happens to a lot of people. Sodas should also be crossed off you list because the gas you consume may have a tendency to cause your skin pores to open up and release the gas mingling with your odor.

Back to the other end. After going to the bathroom you should consider wiping your but with baby wipes. The oil has a tendency to linger. Also after five minutes go to the bathroom and wipe again. The oil will leak out again in a small amount. The baby wipes have something on them that cuts through that oil and makes you smell fresher.

Also on the urine smell and armpit. Try the baby wipes. Just tuck a little pack in your backpack. I have noticed a big difference since I started this regiment in peoples reaction.

Oh, do not eat pepperoni-Lots of bad smelling oil. Order the Vegetarian pizza instead.

P.S. Continue to post. Hope who ever is responsible for this site compiles all these tips and publishes it in the form of a self help pamphlet for those suffering.

May Gods love beam upon you. He does his greatest work when we do our greatest suffering.

Fellow sufferer.

#17

I found out that taking probiotics like acidolhilus makes my condition worst. Can you say why is this so? I think I have a severe case and I’m out of idea on what to do because dieting has not been fruitful and the doctors are all saying im healthy.

#18

I too used to work in customer service, i worked afternoon when was less busy and tried to sit to myself. When we weren’t busy i would put my head down so people would think i was tired and not looking so lonely. People didnt want to be around me. I hated it because you so close to alot of people. And these people were so ridiculous before another one of them walk around they would talk about them. And they especially loved to talk about me. I heard a guy say once that she needs like a a timer that says “Its time to take a bath now.” I wish it was just a timer, i wish there was a bath i could sit in that would wash me clean but there isnt. However, i do wish there was a timer that could tell him when to shut up.

#19

I have a fecal odor and I have had this since I was around 10. I am now 26. I must go to work because I have to support myself but sometimes I want to cry because I hear people whispering/coughing/sneezing and I know its because of me, but theres not anything I can do about it. Sometimes I get so down and out because I just want something that to others is so simple. If anyone knows anything that can help me please respond. I have lived with this for so long. I try to be upbeat and enjoy life but sometimes I think how can I when others get sick from being around me. Will I ever have a normal life?