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Not a good feeling

Tony H

Well-known member
Hey Ron , may tomorrow be a better day than today , I know how you feel , hoping for better health for you soon .
 
Hi Ron, so sorry it is making you feel bad. It can be such a bummer. I hope today you are feeling better and good things swing your way. Hang tough * God bless
 
Better thanks. Yesterday my wife said she could smell the odor from the bathroom and it made her nauseous. What does that mean in relation to my disease?
 
I don't know what it means, maybe just that Crohns is stinky and horrible, but I know it's embarrassing for us sufferers and unpleasant for others who have to put up with it. Not a glamorous ailment! I hope your wife is more understanding than my mother was of my father's disease - she used to get really angry with him for making the toilet so smelly, poor man. I'm sorry you're feeling a bit low, I hope you feel brighter soon.
 

cmack

Moderator
Staff member
Better thanks. Yesterday my wife said she could smell the odor from the bathroom and it made her nauseous. What does that mean in relation to my disease?
My son had a rotavirus when he was really little. May be something similar. It was quite a distinct aroma. :stinks:

The nurse knew right away just from the smell.

Maybe something you ate? Really dunno.

Hope it gets better.


cmack
 

Tony H

Well-known member
Better thanks. Yesterday my wife said she could smell the odor from the bathroom and it made her nauseous. What does that mean in relation to my disease?


Hey Ron the output from my bag was at its worst when I had c-diff infection but even my normal output can be nasty , I'm using peppermint essential oil in the bag and it helps a lot with the smell
I know you are in a different situation but a few drops in the loo might help

I grew up with my mother suffering from crohns and you do get used to going into a toilet thats less than fragrant
Really hope you feel better soon and if you are concerned get tour stool checked out for infection s , it takes roughly two weeks
I know because im waiting at the moment for results from my samples
 

cmack

Moderator
Staff member
Hey ronroush,

How are ya today bud? I think I have a bug too. You know the old 2am run to the pot.

I didn't know which end it was gonna come out of or BOTH! Took some more Amitriptyline after that and slept in.

hoping you are OK,

cmack
 

Cat-a-Tonic

Super Moderator
Sometimes I feel like you can be feeling halfway decent and a few minutes later you can be feeling bad again.
That's definitely been how my day has gone too. I've been trying to taper my pred. Well, a couple hours ago I was feeling okay and eating my oatmeal, but halfway through, I got hit with nausea and cramps and had to stop eating and run for the bathroom. Taper fail. :( It's not a good day.

As for the odor, have you been checked for c-diff? A friend of mine who works in a hospital said that c-diff has a very distinct smell, he described it as being like sweet & sour chicken that's gone rancid.
 

cmack

Moderator
Staff member
Hey Cat,

I sure hope you are able to taper off soon. I hear Pred sucks.


Ronroush,

Man i sure hope you don't get c diff. That's a really nasty one.



Wishing you both the best,

cmack
 

Cat-a-Tonic

Super Moderator
Cmack, I have a love-hate relationship with pred. It's definitely helped me a lot, in July I started flaring and a month later I had lost 17 lbs and couldn't digest anything (even one banana sent me running to the bathroom 10+ times). So I was hospitalized at that point and put on a liquid elemental diet and pred. Both helped a lot. But now I'm having so much trouble getting off of pred! I had started at 40 mg and now I'm down to 6 mg, so I'm close, but I currently can't seem to get below 6 mg without flaring. I had tried going from 6 to 5 mg but nope, my body hated that. Ugh. So yeah, it's a great med but it also sucks a lot.

Ron, good luck with the c diff test. If it is positive, ask about a fecal microbiota transplant, as those have very good success rates without side effects. The other option for treating c diff is harsh antibiotics, if it were me I'd way rather do the FMT than the antibiotics.
 
I have 2 really good drs. one a gp ,the other an internist specializing in GI stuff. I still feel that they don't get it tho'. I'm sliding down the weight scale,after a prolonged adverse reaction to entyvio-I'm running(limping) around with my hair on fire, but NOBODY is helping me. I understand that ony I can eat more, rest more etc. but come on, why are you letting me go like this????Quite scared. I don't want to be like this any more, but if I tell anyone I'm suicidal, they'll dose me up and put me into the hospital which would be worse.
 
I have 2 really good drs. one a gp ,the other an internist specializing in GI stuff. I still feel that they don't get it tho'. I'm sliding down the weight scale,after a prolonged adverse reaction to entyvio-I'm running(limping) around with my hair on fire, but NOBODY is helping me. I understand that ony I can eat more, rest more etc. but come on, why are you letting me go like this????Quite scared. I don't want to be like this any more, but if I tell anyone I'm suicidal, they'll dose me up and put me into the hospital which would be worse.
Look for a second opinion
 

cmack

Moderator
Staff member
Hey dodo,

Hang in there. Go to a different doctor/ER and tell them how miserable you feel. I agree with Ron you need to seek help elsewhere. You sound desperate and desperate times call for desperate measures.

Do whatever you have to do to get the medical professionals to listen. The only chance you have is to keep trying till somebody listens. I have been there before.


Wishing you all the luck in the world,

cmack
 

cmack

Moderator
Staff member
Ronroush,

I am praying it isn't the c diff. I guess you better do it. Better to find out now than die doing nothing. Man oh man. I'm praying for you buddy. I'm here for you too. Please let it be something simple and goes away easily.


You are my strongman,

cmack
 
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Honey

Moderator
Staff member
Hi Ron. Thinking of you and sending you my prayers and best wishes. I hope you feel better soon. You are so good at helping others on this forum. Yes, having Crohns is rubbish !!!!!!!!!
:rosette1::panda-wave-t:
 

Honey

Moderator
Staff member
Ron, I am now in the situation where my Consultant does not know what to do about me! I have agreed to Humira injections but they are holding off as I reacted. He says they have a problem with me, that is true, as I react to everything. I remain on Steroids for another problem. So I understand it can make you feel very low at times. Best wishes. :sign0085:
 
Honey, I just talked to someone in my doctor's office. I was asking about an alternative to azathioprine. They were talking about how I have had to stop several medicines because of having reactions to them. Wish you the best.
 

Honey

Moderator
Staff member
Hi Ron, I have reacted badly to meds and Remicade infusions, as you know, I ended up in Hospital for three weeks with a lung infection. Azathioprane caused me to have Pancreatitis after a short time on it. So I am now in a difficult situation. Best wishes to you , and hope you feel better soon.
:rosette1::bigwave:
 

Honey

Moderator
Staff member
Hi Ron, hope you get meds soon to relieve the symptoms , and help you feel a lot better. Wishing you well again soon.
:getwell:
 
There's a product you can buy, poo pourri, that you spray in the toilet before you go. Apparently it works, but don't use it if you're sensitive to perfumes.
 
I have 2 really good drs. one a gp ,the other an internist specializing in GI stuff. I still feel that they don't get it tho'. I'm sliding down the weight scale,after a prolonged adverse reaction to entyvio-I'm running(limping) around with my hair on fire, but NOBODY is helping me. I understand that ony I can eat more, rest more etc. but come on, why are you letting me go like this????Quite scared. I don't want to be like this any more, but if I tell anyone I'm suicidal, they'll dose me up and put me into the hospital which would be worse.
I think we've all gone down those dark roads but run towards the light. Go outside keep yourself busy. Hug your dog or get a dog which I might be doing soon as I struggle with depression too. Nothing is worth hurting the ones we would leave behind. Maybe a stay in hospital isn't too bad then they can try to get everything under control I've done that before.

Take care my thoughts and prayers are for you.
 
Odors in the Loo- abandon the ship

I found this product on Amazon for help with odors in the loo.
Its called PooPouri. You pump a few sprays into the toilet bowl and it traps/ mitigates the odors before flush. It has helped me through a number of embaressing situations.
Believe me, I have "gone" in every conceiveable place. I have to lay out routes depending on the public restrooms along the way.:stinks:
 
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