Thought I wouldn't be back...

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Emee484
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Thought I wouldn't be back...

Postby Emee484 » Mon Aug 14, 2017 2:10 am

Hello everyone,

The last time I posted here was back in January on a different account. Unfortunately, even at 18, I was not able to bounce right back after C.diff. Shortly after I posted, I had to be taken to the emergency room from my dorm room because I wasn't responding. The dehydration was so bad that my organs were beginning to shut down. I was hospitalized for about a week and a half getting rehydrated and taking IV flagyl AND vancomycin. I came to maybe around the second day but my family was not able to come up to visit me. Either way I was discharged and I was feeling better but then started to realize that I couldn't drink milk or my stomach would hurt. Then came the diarrhea. I started getting flare ups after eating meat or other hard to digest foods. At one point I didn't eat for three days to just have some relief from the stomach cramping and loose stool. Its been almost seven months and I went from an already low weight of 112 lbs to barely being able to stay in the hundreds.

I've had stool samples and CT scans and blood tests and nothing has been found so my primary has now referred me to a GI. I still have yet to have a normal stool and am just feeling weaker and weaker by the day. Other college kids will eat anything they want and have so much energy but I feel as though I'm wasting away. Back in January someone replied that I was young and would bounce right back :')

If anyone has had any similar experiences or can throw some advice in my direction I would be very grateful.
Thank you so much for your time.

Emily

beth22
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Re: Thought I wouldn't be back...

Postby beth22 » Mon Aug 14, 2017 2:29 am

Yes, I got terrible food intolerances after c difficile and I had FMT. It did not prevent them. I could eat meat, but no dairy, not even butter. Any vegetable or fruit would just go right through me. I went to see a GI motility specialist after having had lots of scans and tests and it turned out that I had very bad SIBO (small intestinal bacterial overgrowth). Apparently if you have an infection like c difficile, it can cause this because of the imbalance of gut bacteria. I had to go on Xifaxan and it helped quite a bit. I was able to tolerate more foods after that, but I still don't eat dairy or raw vegetables and most fruits. I also developed chronic pancreatitis. You can see if your pancreas is affected with simple blood tests for lipase and amylase. You might ask your GI about it. SIBO is diagnosed with a breath test.

I know how frustrating it was and is for me, but I am a lot older than you and I can't imagine having to deal with that when I was in college. However, there was a girl on here who got c diff in high school and after treatment kept getting stomach aches too. She saw a GI motility specialist as well and is now well. Hang in there and get the help you need. The GI is a good place to start. I'm surprised they did not refer you sooner, especially after being hospitalized. What part of the country are you in? Maybe there is a specialist in your area.

Emee484
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Re: Thought I wouldn't be back...

Postby Emee484 » Mon Aug 14, 2017 4:01 am

I'm in Las Vegas, NV. For now I'm trying to at least see he GI before I have to go back up to school. I'll see if I can see a specialist when I'm back in school.

The main issues I have are that I have not found even one food that I can eat without feeling like my stomach is going to explode. I'm on a diet of broth and pedialyte. Even that hurts but it's tolerable. The other issue would be the low blood pressure. My doctor prescribed potassium but says that's what should worry me the most along with a bunch of vitamin deficiencies and low cholesterol. I think for about half of my day I am planning out which vitamins to take and warming up broths just so I don't pass out. The mental and physical exhaustion is really starting to get to me.

Thank you for being here.

NanciT
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Re: Thought I wouldn't be back...

Postby NanciT » Mon Aug 14, 2017 9:28 am

So sorry you are going through this, are you still being treated with Vanco?
I ask because I found AFTER I recovered from CDIFF(months later) that Vanco can cause severe HYPOKALIMA (Low potassium) in some and is listed as a RARE side effect. Its been three years later and mine still runs very low and if I get sick at all...it drops. While I was on Vanco the weakness would lead me back in the ER several times. I had a very difficult time eating anything also at this time. I started slow with crackers then moved onto baked potato,Activia,toast very bland foods. I started drinking "Smartwater" with electrolytes. I tried ensure but could not tolerate it, you may try that.

The GI consult is really important, hopefully they will be able to get to the bottom of this.

Hope you feel better soon
NanciT

Emee484
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Re: Thought I wouldn't be back...

Postby Emee484 » Tue Aug 15, 2017 5:09 am

I was treated with both vancomycin and flatly for the weeks in the hospital then orally for another two weeks afterwards. I had low potassium the whole time and still struggle keeping it at 3.0. The crappy thing is the heart muscle cramps! They're so scary. But I do have prescribed supplements so that helps a lot.

I've tried starting out slowly but then after a couple of days I get really bad food poisoning-like symptoms. I went to the hospital just a couple days ago after waking up at 4am feeling like my liver popped or something.

My last reoccurance with C.diff was a month ago but it was resolved with flagyl. Today my GI called and said they couldn't give me an appointment until next month AFTER I leave back to school. I hope the referral from my primary here can be used up north.

beth22
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Re: Thought I wouldn't be back...

Postby beth22 » Tue Aug 15, 2017 5:36 pm

Low potassium is not good and I am surprised your doctor is being so nonchalant about it. My mom was hospitalized with it. I was low on vitamins too and I got sublingual sprays for vitamins B12 and D from doctor Mercola products because I could not tolerate taking pill forms. Other companies make them too and you can get a B12 shot if needed. What city/state is your school in?

amyc
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Re: Thought I wouldn't be back...

Postby amyc » Thu Aug 17, 2017 12:53 am

You really shouldn't go back to college with those symptoms. How will you handle the classes and studying if all you can do is sip broth and water? I'm shocked your doctor hasn't told you that.

Can you eat scrambled eggs? That would help with the cholesterol. Colleges will let you out of housing contracts if you get a doctor's note. I would call your insurance company or check their website to find an internal medicine doctor and switch to them for your primary care. Your current doctor is not taking your condition seriously enough. A different primary care doctor could probably get you in to see a GI quicker too.

NanciT
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Re: Thought I wouldn't be back...

Postby NanciT » Thu Aug 17, 2017 9:55 am

I want to mention again VANCO can cause severe LOW Potassium, it's listed as a rare side effects but I now know several people including myself that dealt with this not only when I was on Vanco but after I finished it. My Physicians did not know this until I printed it out and brought it in. A Potassium level of 3.0 can quickly drop and if they have you on supplements they should be following you with lab to check your current level. This can cause ALL kinds of health issues, must be watch carefully

Talk with your primary and make sure you get the level checked.

NanciT

Emee484
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Re: Thought I wouldn't be back...

Postby Emee484 » Sat Aug 19, 2017 4:53 am

I called my doctors office today to voice my concerns about my current condition but he said that as long as I am taking the potassium supplements and staying hydrated I should be able to hold out long enough to see a GI. He's going to transfer it upstate to my college city. My potassium and other electrolytes are already monitored with blood tests every two or three weeks. I haven't tried scrambled eggs since I've never been a fan of the taste but I will try if it can get my cholesterol up. I will update as soon as I get any new information but for now hyoscyamine is my best friend. I would love to hear any additional advice you all may have.
I am grateful for your time.

Em

Ril
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Re: Thought I wouldn't be back...

Postby Ril » Sun Aug 20, 2017 8:14 am

Em, there is also a fast acting version of hyoscamine- levsin SL for sublingual. It goes under your tongue for "emergencies". You might want to ask your dr if you can add that at school if it becomes necessary.
Also, if you really don't like scrambled eggs, what about hard boiled eggs, egg salad etc? They work as well. So do shrimp but you will sure not eat them regularly, especially at school.
Google "high cholesterol foods" and add some!

Best of luck and be careful.
Rita


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