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Really sick again. Also had a positive TB blood test. Scared. :(

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Ulcerative Colitis
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Posted 10/19/2016 2:14 PM (GMT 0)
I felt almost normal while on Flagyl and Cipro for 7 and 10 days. But my UC came back really bad overnight and this morning. I just moved my desk into my bathroom so I can try to work while having diarrhea. I have gone 10-15 times already this morning. Now am pooping bright yellow stuff that looks like bile or something? Ate some soup this morning and trying to stay hydrated. I've been on Uceris for the past 10 days or so and I guess it is not doing anything.

My GI tested me for TB to see if I could go on biologics and the blood test came back positive. I have to get a skin test and chest x-ray tomorrow morning. Not sure how I would have gotten TB as I've never even been out of the country. Scared I am screwed if I have TB as far as trying other UC meds. Really scared and sick right now. Have a call in to two GIs (I am in the process of switching but I left both of them messages).
Posted 10/19/2016 2:46 PM (GMT 0)
Could be false positive.

"Now, doctors are using a relatively new blood test, Quantiferon TB IF (or T-Spot TB IF), which is an indirect immune system test for the presence of MTb, the agent of TB disease, as opposed to a direct culture or stain of tissues for the organism. In that regard, the Quantiferon TB (QTB) test is similar to the old TB skin tests.

These tests have been used in the past to screen high-risk populations – people who are likely to be or to have been exposed to others with active TB disease – to evaluate them for the potential for active disease early on, before they become a public health risk for spreading TB, or to consider starting preventive treatment with isoniazid (INH) to kill any hibernating TB organisms before they have a chance to activate to cause disease.

So, it is possible for QTB to be positive when no disease or risk of TB transmission is present."

it does sound like there is an infectious source because you respond to abx. Have you considered FMT?

good luck
Posted 10/19/2016 2:52 PM (GMT 0)
It's not an infection. My scope and stool samples ruled that out. It's active UC. My doctor told me UC used to be treated with Flagyl before they had all the drugs they have today. I would do FMT if that was a treatment that was offered here. I'm not going to shove someone's poop up my butt on my own, no.
Posted 10/19/2016 3:40 PM (GMT 0)
I am so sorry Sara. You sound very low risk for TB. I have a feeling the other tests will show that you're negative. The skin test is a pain because you have to go get it administered, then you have to return to have it read. Don't stress, you will be okay. Uceris didn't work for my moderate/severe inflammation, prednisone did a much better job with that. Uceris worked when I had mild inflammation.
Posted 10/19/2016 4:26 PM (GMT 0)
Thank you.

So I just accidentally called my new GI's cell number (yeah, he gave me his cell! I could not believe it!). didn't want to bother him on his cell, but he called me back and talked to me. He's putting me on another round of Flagyl and Cipro. He said it's odd I responded so drastically to antibiotics and not at all to prednisone and is wondering if something besides my UC is also going on. He said my scope looked more like an infection but that it showed both active and chronic inflammation. He is testing me for giardia and told me to drink bottled water for now. He said giardia doesn't cause inflammation but can cause diarrhea. He also ordered another stool culture and C diff test.

He also said if I have TB, that I could still try Entyvio, but that it's harder to get approved by insurance. But he doesn't want to start me on that yet because he's wondering if something else is going on.

I felt almost 100% on those two antibiotics... My scope showed mild to moderate...I can't imagine what my symptoms would be if it were severe!

DB -- did you do FMT? I didn't mean to dismiss it, I'm just upset I'm so sick, and I wish that were an option in hospitals here! I really do. I would love to try that.
Posted 10/19/2016 4:38 PM (GMT 0)
Oh my Sara, I am so sorry to hear this. How upsetting!!! I don't have any advice but wishing you good healing vibes and hoping you can get to the bottom of this and asap!!
B
Posted 10/19/2016 4:42 PM (GMT 0)
Sara,

I doubt that you'd have a problem getting Entyvio approved. My insurance companies wouldn't approve me for biologicals without having a TB test and chest X-rays on file. If you TB test is positive then I'd think that they would approve Entyvio for you.

Stool tests aren't always reliable so I think it is good that he is retesting you.
Posted 10/19/2016 4:56 PM (GMT 0)
My son tested positive for TB when he was about 5 or 6 with the skin test. There are a lot of false positives, or maybe he was exposed to somebody on the metro? We'll never know. Had a chest X-ray -- no evidence of TB, and they put him on INH for 9 months which supposedly prevents it from ever developing. Adults should be very cautious about INH, however.
Posted 10/19/2016 5:07 PM (GMT 0)
False positives do happen. They'll likely retest.
Posted 10/19/2016 5:08 PM (GMT 0)
Thanks guys! This new doctor seems pretty thorough so that is good.

Why should adults be cautious about INH? That's the antibiotic given for TB, right?

wish me luck making the 10-minute drive to the pharmacy...
Posted 10/19/2016 5:18 PM (GMT 0)

Sara14 said...

wish me luck making the 10-minute drive to the pharmacy...

Good luck!!! Some of us unfortunately buy depends for stuff like this when we are really sick.

I found that anti-spasm medication for your colon really helped me when I was sick. You could ask your GI for Bentyl or something similar.
Posted 10/19/2016 5:29 PM (GMT 0)
Hi Sara.....wow, that's a curve ball! Good that you were tested.


I don't know much about TB....please keep us updated on how you are doing.
Hugs to you and Pumpkin.
q
Posted 10/19/2016 6:36 PM (GMT 0)
Hope you made it to the pharmacy ok

My recollection is INH can wreak havoc on your liver, so younger people tolerate it better. I remember reading an obituary of a young adult whose death was attributed to effects from the INH, so that has always stuck in my head. I wouldn't be too worried about TB unless the positive test limits your ability to get certain meds you want to try.
Posted 10/19/2016 8:51 PM (GMT 0)
Keith -- Thank you. Bentyl and hycosyamine both don't seem to do anything for me, but my doctor called in a stronger anti-spasm med for me today...something starting with a "d." The pharmacy can't get any in until tomorrow.

quincy -- Thank you. I really hope something infectious shows up...that would be great news. It has been interesting, because first they thought it was infectious, then they thought it was my UC and now it might be infectious again or both! It was Pumpkin's 5th birthday yesterday! I will give her a hug for you.

suzy-q: I did make it to the pharmacy successfully, thanks! Thank you for the info about INH. I looked it up yesterday and it looked kind of scary. I am hoping maybe it will prove to be a false positive. I read that the blood tests are sometimes unreliable. I should know more tomorrow or in a few days once I get the skin test and chest x-ray. I do think if I am positive it would limit my UC med options, and that's mostly why I am worried. My GI told me today though that I could still take Entyvio, so that's one option.
Posted 10/19/2016 9:20 PM (GMT 0)
Skin test gives false positive too.
Posted 10/19/2016 10:25 PM (GMT 0)

Sara14 said...
... DB -- did you do FMT? I didn't mean to dismiss it, I'm just upset I'm so sick, and I wish that were an option in hospitals here! I really do. I would love to try that.

It is something I would do, especially if I suspected undetected C-diff. But I respond well to mesalamines, and always respond to Pred - so there is very little of something infectious co-occuring with my UC.

I think any medical practice willing to do the FMT can order the poop-pills from the UBiome project. This makes it easy. Its oral, the material is screened. But, likely insurance will not cover the pills.

good luck

Post Edited (DBwithUC) : 10/21/2016 8:55:12 AM (GMT-6)

Posted 10/19/2016 11:19 PM (GMT 0)
I'll have to look into it more! Thank you. My UC always responded well to mesalamines and pred until the past month, too. So that's why they are wondering if there is possibly an infection going on also.

suzy-q -- Good to know. I'll be getting a chest x-ray tomorrow too.
Posted 10/20/2016 6:27 PM (GMT 0)
I got my TB skin test and chest x-ray this morning. The nurse practitioner said she didn't see anything on the x-ray, but it is being sent to the hospital to be read by a radiographer (I think that's the right word?). I go back Saturday to have the skin test interpreted. I'm still having a ton of pain and diarrhea...some is green. I read that can be from bile.
Posted 10/21/2016 11:21 AM (GMT 0)
I'm still in a ton of pain. The antibiotics worked a lot faster last time.
Posted 10/21/2016 3:18 PM (GMT 0)
I just read all of this post and I feel so bad!! I've been in terrible flares, too, so I know what it's like. I hope your TB test turns up negative and you can start biologics. I've never had much luck with antibiotics treating a flare but they are lifesavers for my chronic appendicitis.

The pain is always what sends me to the hospital. I can "deal" with pooping 30x a day at home but the pain- it just gets unbearable and I want to fall asleep and never wake up.

Just wanted to say I'll be thinking of you and wishing you well : )
Posted 10/21/2016 5:23 PM (GMT 0)
Hope tomorrow brings something definitive......are you taking the donnatal?

q
Posted 10/22/2016 1:06 AM (GMT 0)
Thanks Joanna. My GI isn't sure if this is just a flare or if there is an infection going on as well since I responded so dramatically to the first round of antibiotics. I agree with you -- the pain can be so bad that I start having thoughts that I wish I would die, and that is so not like me normally. Sometimes I worry I will pass out and I live alone so that is worrisome. It's gotten a lot better though today.

Thanks quincy. Yes, I'm taking Donnatel and hydrocodone. I only had about 3 or 4 BMs today...I think thanks to the pain pill, probably.

I had no reaction to my TB skin test so that's good. Hopefully I'll get my stool culture, c diff and giardia test results back Monday.
Posted 10/22/2016 6:48 AM (GMT 0)
Good to hear no TB.
Posted 10/22/2016 10:41 AM (GMT 0)
Phew also glad it's not TB.
Posted 10/22/2016 10:13 PM (GMT 0)
That's the best news I've heard all day Sara. What a terrible scare... I had a feeling this was going to be the case, but the last thing you need is more stress. I hope you get good results with the antibiotics, and you move on to a long remission.
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