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02-05-2017, 08:21 PM   #31
ronroush7
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Sometimes I feel like you can be feeling halfway decent and a few minutes later you can be feeling bad again.
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02-06-2017, 03:45 AM   #32
CYY
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Hi, I'm CYY! (✿◠‿◠)/
Age: 17
Diagnosed with: Crohn's Disease, Supraventricular Tachycardia, Chronic Asthma
Currently on: Methotrexate 20mg/week, Folic Acid 5mg, Atenolol 50mg, Modulen IBD (10 scoops), Ondansetron (PRN), Debridat 100mg (PRN), Anarex (PRN), Ventolin (PRN)
Previously on: Azathioprine 50mg, Propanolol 25mg, Seretide
02-06-2017, 01:41 PM   #33
Cat-a-Tonic
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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.
02-06-2017, 01:50 PM   #34
ronroush7
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Hope your day improves, Cat. I was tested recently for c diff and they wanted me to get tested again.
02-06-2017, 02:00 PM   #35
cmack
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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
02-06-2017, 02:13 PM   #36
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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.
02-06-2017, 02:51 PM   #37
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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.
02-06-2017, 03:22 PM   #38
ronroush7
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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

02-06-2017, 06:08 PM   #39
cmack
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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
02-06-2017, 06:41 PM   #40
ronroush7
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Cat, I just talked to my doctor and they want me to repeat the c-diff test.
02-06-2017, 07:10 PM   #41
cmack
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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

Last edited by cmack; 02-06-2017 at 07:41 PM.
02-06-2017, 07:13 PM   #42
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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 !!!!!!!!!
02-06-2017, 07:14 PM   #43
ronroush7
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You are sweet, Honey

02-06-2017, 07:27 PM   #44
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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.
02-06-2017, 07:32 PM   #45
ronroush7
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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.

02-07-2017, 04:50 AM   #46
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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.
02-07-2017, 10:15 AM   #47
ronroush7
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Sending support, Honey.
02-07-2017, 11:25 AM   #48
cmack
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Ronroush,

Sure hope the test goes well. The other option is pretty grim. Hang in there bud.

You are one tough cookie,


cmack
02-09-2017, 03:22 PM   #49
cmack
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Ron,

How are you doing?
02-09-2017, 03:29 PM   #50
ronroush7
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Feeling weak and my stomach has bothered me some. Hope you are well.

02-09-2017, 03:46 PM   #51
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Hi Ron, hope you get meds soon to relieve the symptoms , and help you feel a lot better. Wishing you well again soon.
02-09-2017, 04:05 PM   #52
ronroush7
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Thanks

02-09-2017, 04:23 PM   #53
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Thanks Ron I'm OK. Hope you get over this bout.

I'm here for you bro!

cmack
02-10-2017, 03:09 PM   #54
cmack
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Ron,

Whats up bud? Are you still under the weather? I hope you are OK.


Best wishes,

cmack
02-10-2017, 03:18 PM   #55
ronroush7
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Doing better. Thanks

02-10-2017, 03:37 PM   #56
cmack
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Ron,

Glad to hear things are a little better. Hang in there!


cmack
02-13-2017, 09:08 PM   #57
Tuff
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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.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
02-13-2017, 09:20 PM   #58
cmack
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Tuff,

I have heard of this also. Never tried it though because I'm lucky enough to have my own bathroom. With a fan! I'm a lucky guy.

All the best Tuff,

cmack
02-13-2017, 09:25 PM   #59
Tuff
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Oops, I didn't realize there was a page 2 to this thread.
02-13-2017, 09:28 PM   #60
cmack
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I say oops a lot!
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