New here. DS . Aug. 2011 . Dr K. in California.

[Lamburger]

Hello Everyone!

I’m excited to have been introduced to this forum. I hope to learn as much as I can from you all. What brought me to this site is rather embarrassing but Ihave been told by several people that I have a very bad body order . I can’t smell it , but too many people have mentioned this for me to believe it’s not true. It’s becoming an issue socially and at work.
My family said it’s smells like something is burning. A sulfur order.

I was told by my DS surgen to take Devrom , it’s not working.
Currently I’m trying Keto to see if cutting out the carbs will help.

Any advice you have is greatly appreciated. This is causing me extreme anxiety.

I have also switch to vitamin patches to help with the stomach pain and swelling that also occurs.

 

[DianaCox]

The first thing to check is the most obvious, and I’m pretty sure you would have already dismissed this, but just to be sure: are you certain that the odor is from your skin, and not from your butt? Our gas can be very potent and lingering. And (not to be gross, but ...), are you certain that you are getting ALL the poop wiped from your nether region after a bowel movement? Even a tiny bit left in the inner creases, especially if you have hemorrhoids, can be detected by our “nosy” neighbors. I am a huge fan of bidets/washlets to really clean after a poop, and there are portable versions to take with you when not at home.

Have you been checked for a systemic infection, e.g., yeast?

What are you eating? Anything like a lot of garlic or curry?

I might try a round of Flagyl followed by high quality probiotics to repopulate your gut bacteria to see if that helps might be worth it.

Another possibility is to try oral chlorophyll.

 

[Larra]

Hi and welcome.
I agree with DianaCox 's suggestions, and would only add - knowing you may already have thought of this - that could it be possible that the odor issue is unrelated to your DS? It's so easy for all of us who have had this procedure to relate almost every subsequent issue to our surgery, but in reality we can have any problem that anyone else can have. And of course, discuss with your surgeon (yes, I know you have probably done that already, but I just had to say it).

 

[hilary1617]

Hi and welcome Lamburger!

I'd echo the sentiments above and add that unfortunately a true ketogenic diet will often CAUSE an odor (google "keto body odor").

Some people have success for various olfactory eminations with Lume deodorant, which can be used on private parts.

 

[Spiky Bugger]

Just curious…and don’t feel insulted…but how good is your sense of smell? Because mine is so non-existent, I was at Jazzercise class and everyone was staring at me and I had NO IDEA why. Turned out, I had stepped into “doggy surprise” in the grass on the way into class and was the only one there who couldn’t smell it. Mind you, it was on MY shoes, I couldn’t smell it but ladies way across the room COULD smell it.

I guess what I wonder is…could it be that the smell is something that most everyone can and should notice, except folks who have “anosmia,” like I do. And maybe, to some degree, you? So just for shits and giggles, you can have your olfactory acuity tested. It‘s 40 cute little scratch and sniff cards. I can’t tell the difference between roses and kerosene, or dog shit on my shoe. And others had to tell me why my baby had that satisfied smile on her face...lol.

BUT…“the stomach pain and swelling?” In MY world, that issue goes to my gastroenterologist, who knows Keshishian, understands the DS, and whose new office is where Keshishian used to be, in Glendale, Are you dealing with diarrhea? If so, my first hunch…way before the anosmia…would be c diff. Has that been tested?

 

[Lamburger]

Thank you for your responses . It’s greatly appreciated. My C-Diff has not be tested. I have Kaiser insurance. I will speak with them and get an appointment. I do not eat garlic or curry. This also happens on days where I have not been eating . When I have to go into work I do not eat until I get home.
I have a Toto Washlet and make sure I stay clean and use wipes after each restroom visit.

 

[Spiky Bugger]

Thank you for your responses . It’s greatly appreciated. My C-Diff has not be tested. I have Kaiser insurance. I will speak with them and get an appointment. I do not eat garlic or curry. This also happens on days where I have not been eating . When I have to go into work I do not eat until I get home.
I have a Toto Washlet and make sure I stay clean and use wipes after each restroom visit.

Your DS was a long time ago. So,
-when do you think the odor began?
-what happened right before that? Did the problem start shortly after some other health issue? Did you treat that problem with antibiotics or some other kind of drug?
(Just trying to trace it back to its roots.)

 

[southernlady]

Cutting carbs can lead to ketosis. And welcome Lamburger

 

[JackieOnLine]

welcome Lamburger

 

[Webmommy]

Welcome!

Would you say the odor is coming from your pores or from areas where you have a lot of sweat glands? Every so often I use a little baking soda with soap on my armpits because it seems like my antiperspirant builds up there and just regular soap and a washcloth doesn’t scrub it off. Also I have been using Yes to Tomatoes Charcoal soap every where too.

Nobody told me I smelled though but I have a picky nose because I had the DS 1.5 years after having my baby and was still having hormonal changes from it. So my antiperspirant stopped working and seemed like I was extra stinky to myself as though my body chemistry was changing. Also I was and still am breastfeeding and that frequently makes us more sensitive to smells for a biological and evolutionary purpose. So could you be having major hormonal changes?

Chlorophyll does help with all kinds of odors and have done it before but I feel like I should warn you that the patches haven’t been found to be very effective at maintaining vitamin levels in DS patients. Anyways, good luck!

 

[Spiky Bugger]

Any progress on this mystery, Lamburger?

 

[Munchkin]

Welcome let us know what happens when you try Diana's suggestions. Have you always had this issue or is it new?