Newly diagnosed and scared

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Soimez
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Re: Newly diagnosed and scared

Postby Soimez » Tue Jul 18, 2017 11:32 pm

Wow I was struck with Cdiff in Jan of 2016 as well.. worst year of my life, I'm a 39 year old male.. yes it's the drinkable ones not the pills.. I like the blueberry it's there fermented brown rice, so it's lactose free but still packs a 50 billion punch!! I still take one every day but gonna start to go down two every other day and would eventually like to get down to maybe twice a week. I suffer from anxiety as well everytime I don't have a normal stool but really just need to put cdiff behind us and live our life. Food is medicine!! You will heal and stay healed ;)

juweee
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Re: Newly diagnosed and scared

Postby juweee » Fri Jul 28, 2017 8:52 am

Update.

I have been out of the hospital two weeks.

Some good things: I eat more, I have more energy, I have been able to walk longer, and do things independently as I used to before, stools are formed (not normal like before).

Some less good: I still have pain around my appendix, my eczema has flared up, and I have numbess in my right arm and leg (mostly lower part of the limb + hand and foot).

Because of the numbness, my ID doctor took me off of Flagyl (which I guess was supposed to go in tandem with the Ceftin, which I finished two days ago). But since I still have pain around my appdx, he is putting me back on Augmentin. Needless to say, I am not thrilled about this. This is what triggered cdiff in the first place. He seems to think that while still on Vanco 125 4x per day, it should be ok. So I took my first dose of Augmentin last night, I do have some mild GI cramping, had a formed stool this morning, but the smell was very reminiscent of my infected days. I took my florastor and Bio-k as usual this morning and will continue with my new regimen of kefir and other fermented foods.

My alternatives are to go back on Ceftin/Flagyl combo. Admittedly, I feel so much better since being off of Flagyl. This med is crazy. It was hard for me to realize which one out of the 3 was being so hard on my body, but just taking Flagyl out made a huge difference on my energy. And since we don't know if Flagyl is causing some neurological damage, we are holding off on that one for now. My neurologist did a basic neuro exam and rules our blood clots/stroke but is dubious that neuropathy would be so targeted (right side) so he is sending me for a brain MRI (another day, another test!). The other alternative is to get antbx intravenously so it doesn't go straight into my gut. I can consider this too, but the logistics would be a lot more complicated, having to go to the hospital twice a day for treatment for the next two weeks.

Would love any advice on this, especially from people who have been on antbx and Vanco at the same time, or who have experience this numbness. I hope this goes away.

Ril
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Re: Newly diagnosed and scared

Postby Ril » Fri Jul 28, 2017 6:28 pm

So sorry you are suffering with all this, but obviously your case is more complex than the typical uncomplicated c diff case so I am going to be very careful about what I say and answer.

Your Neuro and some other physical symptoms may well be from the Flagyl. If you do a search on the site using the search bar you will find similar complaints from other posters who were having a difficult time tolerating that med. That said, if your dr is more concerned, you may opt to do the testing he suggests.

Regarding the IV drug therapy, my suggestion would be to inquire if you could have a home health nurse come in to administer the medication. I don't know what kind of insurance you have so I don't know if that is feasible but if it were me I would ask.

You are between the proverbial rock and hard place. Perhaps you can also ask the ID dr if a higher dose of Vanco might help if you have to go back on Augmentin.

I wish you well. Please let us know how you do.
Rita

roy
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Re: Newly diagnosed and scared

Postby roy » Fri Jul 28, 2017 6:50 pm

IV antibiotics are processed by either your kidneys or liver,
depending on what type is used.
Ones processed by the liver end up in your colon and are often what causes c.diff.
IV antibiotics are NOT a safer option than oral ones.

OCmama
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Re: Newly diagnosed and scared

Postby OCmama » Fri Jul 28, 2017 6:53 pm

What Roy said. Women often experience C. diff following on dose of IV antibiotics for C-sections :-/ I'm so glad you are out of the hospital and hope you get answers soon!!

juweee
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Re: Newly diagnosed and scared

Postby juweee » Sat Jul 29, 2017 10:02 am

Thank you so much everyone for your responses.

Real time update.

My internal medicine doc backed up my ID in saying it was 'safe' to go on Augmentin while on Vanco. So far on my 3rd dose of Augmentin and things are going ok. No diarrhea, no more smell (only first morning). My appendix pain is subsiding. I am taking my probiotics, kimchi and kombucha, and praying for the best.

I am holding off for the weekend on scheduling an MRI. So far it looks like the numbness is lessening. If it goes away by Monday, I will attribute it to Flagyl and move on. I am feeling much much better energy-wise since I came off of it.

Actually went for an easy swim this morning. First exercise in 3 weeks. For someone used to competitive swimming 3x per week, it's pretty humbling to only be able to do 20 laps of slow elementary backstroke. Baby steps.

OCmama
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Re: Newly diagnosed and scared

Postby OCmama » Sat Jul 29, 2017 10:14 am

How long out from C. diff do your doctors say you will need to take vanco with any antibiotics? I'm having a very difficult time getting an answer for my daughter. So far it sounds like any antibiotics within two years of CDI will need to be with Vanco, and after that do a "try and see what happens" approach.

juweee
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Re: Newly diagnosed and scared

Postby juweee » Sat Jul 29, 2017 11:42 am

OCmama,
It's still so fresh for me, only diagnosed 3 weeks ago... Working towards healing and surgery. I have not really had the chance to ask these questions yet. ID doctor told me I would need to go back on Vanco when they schedule the appendectomy. Aside from that, I am hoping to stay clear from antibiotics for a long while. But I'd love to hear what you find out for your daughter. Please come back to update, please.

NanciT
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Re: Newly diagnosed and scared

Postby NanciT » Sat Jul 29, 2017 11:49 am

OCmama

As far as antibiotics along with Vanco, I have 3 GI's that could not agree on this. In the end, they told me NONE. They all felt the Vanco would not prevent CDIFF while on antibiotics. I have found no real research on this, very frustrating. I did have to go on Keflex( a big offender) in Jan/16. It was for a UTI but there was question Vanco was causing some of the bladder issues so both urologist and GI said NO Vanco. I did take the Keflex and did WELL! Thankfully!!

Jewee, sorry you are going through all of this, hope the meds work and you start feeling better soon

NanciT

OCmama
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Re: Newly diagnosed and scared

Postby OCmama » Sat Jul 29, 2017 1:16 pm

NanciT,

It really is frustrating. I cannot get an answer out of either of our family's C. diff specialist infectious disease docs :-/ I think that is because they don't know. It is starting to sink in that this is a chronic disease... ughhhhhhh. Really hoping we can just avoid antibiotics forever (please God); but not sure how likely that is in a family of 5.

juweee
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Re: Newly diagnosed and scared

Postby juweee » Sun Aug 27, 2017 9:56 pm

Back for a quick update.

My situation is a bit unique since I suffered from appendicitis and have yet to have surgery (they could not operate because my colon was also infected). I have basically been on a cocktail of antibiotics (+ vanco) since I was diagnosed on July 7th. I just stopped the antibiotics this past Thu Aug 24 when I ran out of my last prescription so I am only on Vanco at the moment, for about one more week. I am seeing my surgeon on Wednesday to set a date for my surgery.

You may remember that I was originally on Flagyl as well and I stopped after feeling numbness in my right arm and leg. My neurologist requested a brain MRI to rule out any brain issues, and the scan came back negative. The numbness eventually subsided about 10 days after I stopped taking Flagyl and is now completely gone.

Prior to surgery, my surgeon want me to have a colonoscopy to make sure there is nothing abnormal with my colon. I am a bit nervous about the procedure, since from what I read, this sounds like another opportunity for D and for worrying about a relapse. Anyone with advice on this would be helpful.

I’ll mention that my appetite is pretty much back to normal and I can almost eat everything now. I am still a bit gun shy about milk products, fatty meats like beef or sausage, and shellfish, but I have been able to eat pretty much everything else like before. I am still loyal to my daily biok, kombucha, kefir and kimchi. I gained back 3lbs from the 10 I had lost. BMs are almost back to normal.

I also mentioned in another thread that I went on a European trip that our family had planned since January. I was anxious about going but all went well and I am really glad I did. With basic precautions, everything went according to plan.

I’ll come back for an update closer to my surgery. In all likelihood, I will need to receive a dose of antibiotics right before the surgery. I am pretty nervous about that and will report back on how it goes...

amyc
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Re: Newly diagnosed and scared

Postby amyc » Mon Aug 28, 2017 1:34 am

I would ask if you could have an MRI of your abdomen instead of the scope. Or a capsule endoscopy because that is less invasive and requires a more gentle prep too, so it would be less likely to irritate your colon. The MRI could provide a new view of your appendix too, which might help you sell the idea to the surgeon.

roy
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Re: Newly diagnosed and scared

Postby roy » Mon Aug 28, 2017 3:25 am

I would also question if theres anything wrong with my appendix that warrents the surgery to remove it!
Sounds like your back to full health so if it ain't broke don't fix it!

juweee
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Re: Newly diagnosed and scared

Postby juweee » Mon Aug 28, 2017 6:47 am

Thanks guys,
I'll ask about the MRI when I see the surgeon on Wednesday.

Roy, believe it or not but I still have pain in my side after over 7 weeks. I have have 3 CT scans (7/7, 7/21 and 8/10) and although it is showing reduced size and less inflammation, my appendix is still enlarged and I am controlling the pain with large amounts of inflammatories daily. Last month I was all for keeping it in, but now with residual pain after two months, I feel like that is what is keeping me down and preventing me from getting back to my active routine.

I'll keep you guys posted on the next part of the journey.

amg
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Re: Newly diagnosed and scared

Postby amg » Mon Aug 28, 2017 12:03 pm

I'm so glad to hear you're doing well and were able to travel. You're very brave!

It would be wise to have a good talk with your doctors about a plan in case you do experience a return of c diff. Patients who have undergone abdominal surgery are at higher risk of c diff. And patients who have had appendectomies are at higher risk of recurrences.
(This could be related to the theory that the appendix is a reservoir for our good bacteria, in case of an illness that wipes out our flora)
I would be very cautious about having a colonoscopy prior to all of this - that prep washes out EVERYTHING, including good bacteria!

Good luck to you. I hope all goes as well as possible!


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