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passing out?

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Ulcerative Colitis
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jane c
Regular Member
Joined : May 2012
Posts : 91
Posted 8/18/2013 10:24 AM (GMT -7)
Current meds: remicade, amitriptyline, Immodium, hydrocortisone enemas
failed meds: humira, purinethol (slight reaction) asacol (just stopped after 4ish years for a new intolerance), imuran (severe reaction)

Been flaring since giving birth march 2012. Was also on prednisone April 2012-July 2013. It quit helping in nov/dec maybe. The bleeding stays away for 5 weeks post-remicade infusion, but the diarrhea/urgency (at 15x/day at this point; have been as low as 8 and high as 40ish including 2 cdiff infections and one campylobacter infection).

Current issue: For maybe a month or two I get dizzy when I stand up. I have to support myself and catch my balance for 15-20 seconds and then can be on my way. It was a minor annoyance and only a few times a day until last week when it happens every single time I stand up. Last Thursday night while I was out of town, I was going into bathroom at night and passed out, smashing my face into a door on the way down. Woke up to my 3yo standing by me asking if I was ok. I was hoping it was a one time thing but it happened again last night. I remember hurting when I fell and my husband trying to carry me back to bed and I felt like I just couldn't move, like I was hearing him speak to me but couldn't move or speak or control my body. Has anyone experienced this? Could it be one of the meds or is this just something else I need to work into being normal? I'm planning to call my doctor tomorrow but I have little to no faith in him caring much.
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ByeByeUC
Veteran Member
Joined : Feb 2011
Posts : 4578
Posted 8/18/2013 10:34 AM (GMT -7)
This happened to me (dizzy and fainting) when I was in a really bad flare and was admitted to the hospital. It turned out my potassium was wicked low. My hemoglobin was also extremely low at that time. Make sure you get yourself checked out. Fainting needs to be addressed right away and is not "normal".
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Katmom
Veteran Member
Joined : Mar 2008
Posts : 1203
Posted 8/18/2013 10:48 AM (GMT -7)
Time for blood work. Could be lots of things. Make sure you are replacing your fluids faithfully. Call that doc.
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jane c
Regular Member
Joined : May 2012
Posts : 91
Posted 8/18/2013 10:49 AM (GMT -7)
Interesting ::grabs banana::

I know it's not normal, I guess I just feel like my doctor is annoyed with me at this point and wants me to go away. I would be annoyed too with a fancy medical degree if I wasn't able to help people though. I'll call and mention it tomorrow regardless. Thanks for the reply :)
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ByeByeUC
Veteran Member
Joined : Feb 2011
Posts : 4578
Posted 8/18/2013 10:56 AM (GMT -7)
I know how you feel. My GI doc was fed up with me too because he couldn't help me at that time. I was lucky my GP is a family friend and I used to go to him to get my blood work done.
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garylouisville
Veteran Member
Joined : Aug 2012
Posts : 9088
Posted 8/18/2013 11:10 AM (GMT -7)
Blood work is definetly in order. Are you sure your c-diff and other infections are all cleared up? Sounds to me like you still have something. If that's the best Remicade can do for you, and nothing else is wrong, I think it's time for another plan.
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jane c
Regular Member
Joined : May 2012
Posts : 91
Posted 8/18/2013 11:23 AM (GMT -7)
No, I'm not sure the cdiff is gone. I was hospitalized in July, took I think 20 days vancomycin and finally Had a negative stool sample. I was shocked because I was so sure it was still there. The cdiff pain subsided gradually and all that's left is the cdiff smell. Campylobacter was simultaneous and resolved after a 5 day zpack. The negative sample was Aug 2, so obviously not long ago.

I know (logically) it's time for a new plan if that's the best remicade can do. I just feel like I'm running out of options and get a little more hopeless everytime I try something new thinking "this is it! this is going to make me better!" and it never does.
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garylouisville
Veteran Member
Joined : Aug 2012
Posts : 9088
Posted 8/18/2013 11:29 AM (GMT -7)
I would keep a close eye on the c-diff. It is extremely hard to irradicate even in a healthy person. It has a nasty way of keeping on popping up and there is no way you can work on your UC if you are also battling c-diff at the same time.
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jane c
Regular Member
Joined : May 2012
Posts : 91
Posted 8/18/2013 11:46 AM (GMT -7)
I do know this. My first cdiff was early feb-mid march. It literally took a month and a half for them to even take a stool sample (I had no clue, just assumed I was about to die or something). I would go for FT if I had a doctor that would do it. Is there anything I can do if I feel it's not gone but stool sample is negative?
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garylouisville
Veteran Member
Joined : Aug 2012
Posts : 9088
Posted 8/18/2013 11:53 AM (GMT -7)
You could demand another test. There is a lot of evidence that c-diff tests can give false negatives when you actually have it. There is a lot of evidence that the best thing to do is get 3 different tests with three different stool samples on three different occasions. If they are all negatives then there is a 90% chance that you don't have it. Are you taking probiotics? They can also fight c-diff but the winner will be which ever side has more soldiers. Usually with C-diff you need to bring in the big gun antibiotics.
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jane c
Regular Member
Joined : May 2012
Posts : 91
Posted 8/18/2013 12:01 PM (GMT -7)
Ok, I'm calling dr tomorrow so may as well get another stool sample. It's not like they're hard to come by, lol.

I take an OTC probiotic, florastor, twice daily. Thanks for all the suggestions!
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garylouisville
Veteran Member
Joined : Aug 2012
Posts : 9088
Posted 8/18/2013 2:09 PM (GMT -7)
Are you sure the florastor is doing good for you? Florastor made my UC much, much worse. I discovered that I have a histamine intolerance and since Florastor is a yeast and yeasts increase histamine levels, that did me in. I only took one dose and stopped immediately and it took 3 days for me to get better. Others have had problems with Florastor as well while others swear by it. If you are not 100% sure you may want to stop it for a few days and see if you get better.
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Bacon Girl
Veteran Member
Joined : May 2011
Posts : 5490
Posted 8/18/2013 2:22 PM (GMT -7)
jane, I've had a dizziness problem most of the year, but it's been mostly benign since I got off of antibiotics. every time I have been on them, I feel like my head is spinning all the time. since I had c diff 3 times this year, I was on lots of flagyl and vancomycin. my doctor didn't think it was connected, but he doesn't really take me seriously with my concerns.
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UCandMe
Veteran Member
Joined : Mar 2013
Posts : 589
Posted 8/18/2013 3:29 PM (GMT -7)
When did you start the amitriptyline? I was on it briefly and did not feel myself on it. I think dizziness is a side effect. Make sure you don't just stop it though you need to taper it.

However as other have said you should get blood work done also to check for other possibilities. In the past I have passed out from dehydration and needed to be hospitalized. Make sure you are hydrating enough.
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jane c
Regular Member
Joined : May 2012
Posts : 91
Posted 8/18/2013 4:48 PM (GMT -7)
Thanks guys-I'm definitely drinking enough. I haven't noticed a connection to the anti-biotics. The dizziness is listed as a rare side effect of the amitriptyline. Since I've had reactions to several meds (most recently imuran hell for 48 hours), and my doctor doesn't believe my "reactions" are side effects, I'm hesitant to straight out blame the amitriptyline. I'm not sure on the florastor--I've been taking it since March when first diagnosed with cdiff, and don't know that it really affected me one way or the other. I got better from vanco, but started the florastor the same day. I may take a brief hiatus to see.

I really feel like my doctor thinks I'm being dramatic or something. My current instructions are to take Immodium 3x/day to make me stop having diarrhea and take citrucil (fiber) to help me go to the bathroom. Like he's one step away from saying "nevermind it's only ibs! not uc!" so that he doesn't have to be a failure. Fortunately and unfortunately for me the blood and mucus come back like clockwork. I'd like for him to go even a few days going through this to take his ass down a couple arrogant notches.
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UCandMe
Veteran Member
Joined : Mar 2013
Posts : 589
Posted 8/19/2013 5:06 AM (GMT -7)
Maybe finding a new GI would be beneficial.
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Sara14
Veteran Member
Joined : Mar 2007
Posts : 6235
Posted 2/13/2020 10:34 AM (GMT -7)
I know this is really old, but if you're still around, did you ever figure out what caused this? Last night, out of nowhere, while sitting on the couch, I felt like I was about to faint and stopped myself. That feeling continued afterwards for hours. I'm a lot better today, but still feel lightheaded.
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CCinPA
Veteran Member
Joined : Dec 2014
Posts : 1572
Posted 2/13/2020 11:14 AM (GMT -7)
When I was flaring badly I passed out a couple times. Turned out that I was severely anemic. Had to get a blood transfusion and several iron transfusions.

I agree with the others .. you need to get stool tests. Blood counts would be a good idea too .. a CBC and a complete metabolic panel that includes checking potassium levels.

If remi is losing effectiveness early, the dosage and the interval can be increased. I am now at 10 mg every 6 weeks. I will know in a couple weeks if this is where I need to be. My next infusion is 3/7 and if things remain as good as they are now I am declaring remission smile
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Border Collie Mom
New Member
Joined : Feb 2020
Posts : 3
Posted 2/13/2020 8:55 PM (GMT -7)
I don't know how old you are, but what you experienced, I have too. There is a way to check your blood pressure now on a rising table. Back in the late 70's, my doc took bp when laying down, then sitting, then standing. What that showed was poor circulation and overall low blood pressure. I've found over the years that it happens when I need to drink more water, have more salt in my diet, and sit down the second I feel that dizzy feeling. I've passed out in public many times when I felt that feeling and didn't sit. As I've gotten older, those blood pressure incidences have subsided. Check you sodium levels. Hope this helps.
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