Frustrated

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ashtontw
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Frustrated

Postby ashtontw » Wed Nov 30, 2016 6:50 pm

I feel like I've been relapsing for four days now. I've lost 6 pounds in four days. I can't tolerate bland food. I'm soo nauseous. And having WD. No fever. WBC are low, and my potassium and platelets are also low. Monocytes high, if that means anything. Had FMT last Tuesday. Stopped Vanco two days before that. Had a negative PCR test at the hospital today, and I feel STRONGLY that it is a false negative. The ER doc wants me to start Vanco based on my symptoms. But Dr. Joseph (FMT doc) still doesn't want me to take the Vanco. Wants me to try Imodium or Questran. I'm not comfortable taking Imodium because I feel I have active C Diff. But I'm about to give Questran a shot.

I feel like by not taking the Vanco, I'm basically holding a lit stick of dynamite in my hand and hoping that I don't blow up with it. Even the ER doc said people that have C Diff know when they have it again. So why and how is Dr. Joseph so sure that it's not??? He keeps saying IBS and post-infection irritation from C Diff and Salmonella.

Does IBS cause CONSTANT nausea, cramping, lack of being able to eat bland food, and serious weight loss?? I'm SO DONE. I just want to completely give up, once and for all. I have the script for Vanco here from the ER doc and I'm soooooo tempted to go fill it. I don't want to die!! And I feel like I'm going downhill fast. I just don't understand.

I've posted some of this info in another thread, I'm sorry if this is violating any terms. I just have nowhere to go to vent it all out and I am so frustrated and scared. I don't know what else to do. One doc wants to treat, the ER doc, who isn't a specialist but I feel is doing the right thing by my symptoms. But the specialist doc who did my FMT, is still putting his foot down. At what point is it curtains for me with all of this, honestly?? I just can't imagine IBS making me this sick and causing the weight loss too!! I can't eat anything!

roy
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Re: Frustrated

Postby roy » Wed Nov 30, 2016 7:18 pm

Listen to the specialist and take his advice!


Wait for replies to this post and post again tomorrow.
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amyc
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Re: Frustrated

Postby amyc » Wed Nov 30, 2016 8:05 pm

Low WBC can mean a viral infection, so you may have just picked up a bug.

Cm1619
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Re: Frustrated

Postby Cm1619 » Wed Nov 30, 2016 9:41 pm

I don't want to give you false hope but I had similar symptoms as you in recovery due to extreme nerves. Once I controlled my nerves, I gained weight back and stopped having the WD, loose stools, nausea and weight loss. I had to get on an SSRI medication but I'm so much better now. You can look through my old posts and see how nervous and stressed I was and I never even relapsed so I can't imagine what you're going through. I was so stick thin and waking every single morning at 5am running to the bathroom with multiple loose stools or WD. I also had lower back pain that was so intense I wasn't sleeping. This went on for months. Do you talk to a therapist? Have they every suggested an anti anxiety drug or SRI? It saved me! Once I stopped obsessing over C diff the symptoms slowly went away. I've been better for a few months now and I can't even look back on those months because it was such a terrible time. It's completely understandable for you to have so much anxiety over this after what you've been through.

beth22
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Re: Frustrated

Postby beth22 » Thu Dec 01, 2016 12:01 am

I posted on your other post and don't want to repeat everything, so look there. I would definitely not take the vanco. Salmonella can give those symptoms too. See if that test comes back positive since they are running a culture.

georgina
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Re: Frustrated

Postby georgina » Thu Dec 01, 2016 12:05 am

Agree with Cm1619 , it seems that you are not able to controll your anxiety and maybe you need to seek help from a specialist.I'm still testing positive for CDiff but ever since i stopped beeing obsessed by it i began to feel better. A SSRI or a tricyclilc antidepressant may help you with anxiety and also slowing down your gut , best one is Amitryptiline (helps with cramps , slows down transit , helps you sleep etc) but you should ask the doctor first. Try not to lose hope and think positive ,don't think about failure because it's too early and also you had a negative test , listen to your GI and give it a try to Questran and don't touch the Vanco. IBS can be just as bad as CDiff , if you read posts from IBS-D forum you will see that IBS can have debilitating symptoms but it will get better in time. If you cannot eat , try bone broth as it both nutritious and also helps settle down your gut.

ashtontw
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Re: Frustrated

Postby ashtontw » Thu Dec 01, 2016 9:57 am

Hi everyone! Thank you all for the replies! I am in therapy and have been on anti-anxiety medicine. I was doing really, really well for a couple of months. Seems like when I was on the Vanco, I felt well and was able to lead a normal life and eat what I wanted and work towards gaining weight back. It's just been a downward spiral since the FMT. The nurse did say that my symptoms aren't normal and that usually people improve. I went from one formed BM every day and eating whatever I want, to watery D, pain, and tolerating no food and losing all weight. That's a drastic and bad change after the FMT that everyone kept saying was a miracle. Now I'm finding out it's not. Would it be silly to retest? I read that the PCR only senses the B toxin...what if I'm dealing with toxin A or the really bad virulent strain now and it wasn't picked up on PCR?

NanciT
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Re: Frustrated

Postby NanciT » Thu Dec 01, 2016 11:08 am

Ashton

I agree with the others, although you are in therapy possibly review the medication you are on. If the PCR and other tests are negative, I hope that will bring you some peace of mind. As far as the nurse telling you people don't often have these symptoms...if you go back and read how many have Post IBS post FMT. I was told after 10 months on medications ( Vanco and Dificid) I should be just fine. Recovery has been slow. But now I am two years out and the IBS does return on and off. I still eat a fairly bland diet.
As far as the nausea, I was using "Sea Bands" until just a few months ago, they helped with the nausea. If they don't work, as the GI for some medication. I also have gone through 5 heating pads, they helped a great deal.
I would follow what your GI as told you and not go on the Vanco. Give it some time. If they have ruled everything out, you could have a bug or its just a matter of time.
If you continue with WD sereal times a day, I would go back in for a follow up.
I am hoping each day you improve!
NanciT

georgina
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Re: Frustrated

Postby georgina » Thu Dec 01, 2016 11:48 am

I really don't rememeber if one of our members told you about FMt beeing a miracle cure , we often tell posters not to expect overnight miracles after FMT.

beth22
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Re: Frustrated

Postby beth22 » Fri Dec 02, 2016 3:20 am

I would not worry about toxin A, as from what I have read, it does not cause those symptoms. It is toxin B that is the culprit. Check for other pathogens. It could be another bacteria. Have you had your pancreas and gall bladder checked? I got pancreatitis after c diff and have chronic elevated enzymes. Pancreatitis can cause WD too.


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