Suffering and Need Advice Please!

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kwiatek7
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Suffering and Need Advice Please!

Postby kwiatek7 » Wed Apr 08, 2015 11:07 pm

Hi all,

I was diagnosed with C. Difficile back in June 2014 and ever since then I just don’t feel the same. At the beginning it was hard to get the doctors to take me seriously; they thought I had anxiety and I knew that wasn’t the case so it took some time for them to diagnosis me with C Difficile. I was tested negative for C. Diff after a second round of antibiotics. But as time progressed I was still not getting better so I had an endoscopy & colonoscopy done and they found H. Pylori, gastritis, esophagitis this was beginning of September. When everything was “cleared” I ended up taking antibiotics three times for a total of 32 days within 2 month span. I have been taking probiotics every day. I have major food sensitivities and it’s been a nightmare. I wish I didn’t have to eat because at this point I am scared of eating anything because I don’t know how my stomach will react. I been sick with a cold/flu 5 times and I never had it this bad in my whole life. I am struggling with a cold right now as I speak.

I went to an allergist and he tested me for all kinds of food and I didn’t react to anything. I got blood work done to see if I had celiac disease and that was a negative along with other blood work like to check my thyroid, sugar levels, anemia and other things and all came out fine. I went to a gyno and got an ultrasounds and it was fine. Going to the bathroom for me has not been the same. I been dealing with really bad case of lightheadedness, dizziness and nausea everyday. I feel like someone sucked the life out of me and ran me over. At this point I want to give up because I don’t know what else to do but I know there has to be something I am missing. I feel like because of this I really suffer with anxiety now (I been going to a therapist and bought a bunch of teas for immune support and all). I read that intestinal problems are related to anxiety. I miss my old self! I used to love working out and now I can barely make it through half the time.

Please let me know if any of you have experienced this and what you think I should do next (like find a new gastro?) Any advice is greatly appreciated. It’s been over 10 months and I really want to start feeling more like myself. I been keeping it together for most part but sometimes I just have meltdowns. Do you think its normal how I feel since my stomach flora is off and sooner or later I will be feeling better? Thank you.

Agnes

teresajo103
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Re: Suffering and Need Advice Please!

Postby teresajo103 » Thu Apr 09, 2015 1:04 am

Agnes....

Yes, I have had the same symptoms you describe almost since day one. I still struggle with lots of lightheadedness,dizzy, and nausea. I have had an fmt but I still experience some really bad days....but I am still dealing with the dizziness quite a bit.. I am hoping with time it will get better.....it is better now that.it was a month ago.....so maybe it is just the healing process. I sure hope you get better.

getwellsoon
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Re: Suffering and Need Advice Please!

Postby getwellsoon » Thu Apr 09, 2015 7:13 am

So sorry you are still suffering. I would definitely get a new GI or maybe an ID for a second opinion. Although it can take many months to get back to normal after all this time you should be feeling some better. It took me a long time to feel better also but at 10 months off meds I could tell a difference. Your symptoms need to be checked out further, just to rule out anything else. Hope you can get a good Dr. and figure out if anything other than healing is going on. Let us know how you do and hope you start to turn the corner soon.
CAROL

beth22
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Re: Suffering and Need Advice Please!

Postby beth22 » Thu Apr 09, 2015 12:16 pm

I have been suffering with dizziness and lightheadedness for the last week, but I don't think it is connected to my GI issues. This time of year there are lots of pollens and my allergies are very bad. Also, I have neck issues and that could be causing mine. I'm seeing the neurologist today. HOWEVER, my doctor ran some blood tests because some things can cause this like vitamin and/or mineral deficiencies.

Have you had your B-12 levels checked? If you are low in B-12 that can cause those types of symptoms as well as iron. After c diff, I was lot in vitamin D and A and on the low side for B-12. It might be worth it to check these out as the malabsorption can cause deficiencies.

kwiatek7
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Re: Suffering and Need Advice Please!

Postby kwiatek7 » Thu Apr 09, 2015 12:33 pm

Thank you Teresa for your feedback. How long have you been suffering with C Diff and post? What made you get a FMT? I hope you start feeling better soon as well. Do you find that taking certain things help you?

Thank you Carol for your feedback. I am trying to figure out what my symptoms can be related to but theres so much out there. What kind of tests did you have done; so that maybe can direct me in the right direction?

Thank you Beth for your feedback. This dizziness and llightheadedness has been some time now. My doctor checked my vitamin levels and they were fine. I want to give up because I got alot of things checked and everything came out fine but how can that be when I feel so not right.

Do you guys think this is normal how I feel or there could be something else going on? I wish I had some confirmation that everything was okay and that I would start feeling better later down the road. This would give me the peace I need. Its hard because doctors dont want to hear you out and just dismiss your case easily. We know our bodies best and when something is off then something is off.

Dobies#1
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Re: Suffering and Need Advice Please!

Postby Dobies#1 » Thu Apr 09, 2015 6:56 pm

I'm sorry you're so frustrated! I'm sorry if I missed anything, but are you taking any medication that can cause dizziness? Colds and allergies can cause dizziness, stuffy ears, etc. as well. Do you have any inner ear problems. Maybe you need to see an ENT doc. Also stress and anxiety can cause a lot of problems including dizziness. Please don't give up! Hang in there and hopefully you'll get some definite answers. HUGS!!

justme
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Re: Suffering and Need Advice Please!

Postby justme » Thu Apr 09, 2015 9:03 pm

I am so sorry that you are still feeling so awful. Having that second round of antibiotics for all those other problems after C. Diff probably put extra pressure on your body's ability to recover and slowed down the recovery process. You don't say how old you are, but age and underlying health conditions can also lengthen the recovery process. It has been over 2 years for me and I'm still not completely recovered. I still have limitations to my diet and pain when my colon is processing food. Even though I did not relapse, my age and some specific health issues have greatly slowed down the process. After many months of anxiety and wondering "when will I finally heal", I just accepted that my body will heal when it heals - period! I think the anxiety of wondering "why" can lead to a lot of unnecessary worry and symptoms that may just be a result of that anxiety. The mind is a powerful tool and sometimes not for good (especially when it comes to ourselves). Go back to exercising slowly - a little at a time and don't push it. I was an exercise nut (still am), but I had to greatly curtail my activity for quite awhile until my body was ready. Try to relax and do things that you enjoy. Stay or go back to a bland diet awhile longer and try to add back food gradually. IBS seems to be a problem for many of us and the colon has to adapt. It's taken me two years to be able to eat yogurt which was something I ate every day before C. Diff. Good luck.
Aloha,
Anne

kwiatek7
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Re: Suffering and Need Advice Please!

Postby kwiatek7 » Thu Apr 09, 2015 11:40 pm

Thanks Dobies for your advice. Yeah I had the major cold so maybe it will go away but I noticed these symptoms come and go whether I have a cold or not. I had my ears checked out and everything was fine. I hate feeling dizzy and lightheaded because in the past I have passed out so I am scared of being somewhere and then bammmm I pass out.

Thanks Anne for your advice. I went on antibiotics 3 times in 2 month span. I really don't want to hear that word every again (antibiotics) hehe. I am 27 and the only problem I have is hypothyroidism but I am on the lowest dose. 2 years? Has anything helped you in these 2 years do you think? I agree I been thinking about the power of the mind and I want to tell myself that I am better and all that good things but when I have setbacks it totally messes me up. I am so tired and no one seems to understand as they have not experienced what I have except the people on this site. I am grateful for that; as we come together and help each other out! My friends/family think I am making this crap up and its like uggghhh (I feel like a lot of us have that same issue). I am an exercise nut as well and its hard to slowly get back to it. I really appreciate your advice :) I just hope that there is no other health issue that I need to get resolved and I will start feeling better soon.

getwellsoon
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Re: Suffering and Need Advice Please!

Postby getwellsoon » Fri Apr 10, 2015 8:06 am

I was going to suggest thyroid testing but you already are on medication for that. I would suggest you get your levels checked to make sure your dosage of meds are still right. They also tested my blood for all the usual things and added in celiac, vit b12,iron, some other vitamins and minerals. Your dr. should know what to order. Also if you had a major cold your ears could still have congestion so I would also get them checked out by a good ENT. Hope the dizzyness goes away and you feel better soon.
CAROL

beth22
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Re: Suffering and Need Advice Please!

Postby beth22 » Fri Apr 10, 2015 1:02 pm

I just saw the neurologist for my dizziness and it is from muscular spasms. I've been grinding my teeth or clenching them, which can set off spasms. I also have neck problems and arthritis in my neck, which can cause it. Do you have any neck issues? My allergies can cause it too, so I don't know if it is a combination or any one of those.

If you have low blood pressure or low blood sugar, that can do it as well. My doctor gave me a blood sugar monitoring machine to test my blood when I felt strange like that, but it was not that. If you have a blood pressure machine, you can take your blood pressure when you have the dizziness and see if it is on the low side. When you are dehydrated or have not had enough to drink, you can also feel lightheaded I was told.

justme
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Re: Suffering and Need Advice Please!

Postby justme » Fri Apr 10, 2015 4:00 pm

I get it too from time to time. I am on all kinds of meds for my heart and have TMJ and arthritis in my neck too. I didn't relate the dizziness to the TMJ, but I can see the relationship. Also, allergies cause post nasal drip which can get into the ear passage and cause balance problems. Boy, if it isn't this, it's that - does it ever end?
Anne

teresajo103
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Re: Suffering and Need Advice Please!

Postby teresajo103 » Fri Apr 10, 2015 4:37 pm

Well, I was diagnosed in September 2014....relapsed several times. I decided to get the fmt because nothing else seemed to be working. I take Vsl #3 twice a day. I take dicyclemine when the cramps are bad...I have recently discovered that Tylenol works for minor bouts. I got an extra large heating pad that I use when I feel yucky. Things are weird because I will have two or three good days....then a few not so good days. My dizziness is mainly early in the day but tends to ease off after I have been up a while.

kwiatek7
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Re: Suffering and Need Advice Please!

Postby kwiatek7 » Sun Apr 12, 2015 10:19 am

Getwellsoon thanks for your advice. I got most of those tests done and everything was fine. My dizziness and lightheadedness went down so I am happy. These two main side effects come and go. I am scared of fainting because I have in the past a few times and those side effects contribute to it. I am

Beth thanks for sharing your experience and your pointers. I will try checking my blood pressure when I get dizzy.
I am glad they figured it out for you. I just had major upper back issue as I sit behind a desk all day at work which is not good.

Anne, I agree will it ever end? I guess we can just count on better days...

Teresa, thanks for sharing your experience. I guess with time we figure out what can help. Hope you start feeling better soon!

I just never felt so sick on and off for so long (10 months now) and it scares me. Will I ever feel like myself again is the question I ask myself when I am sick.

Bobbie
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Re: Suffering and Need Advice Please!

Postby Bobbie » Sun Apr 12, 2015 9:48 pm

You will feel like yourself again but it could take awhile. See some of the "surviving c diff" info in CDI. There are many of us - we are the moderators and frequent posters.

The good news is it is spring and you have less chance of getting "a bug" and perhaps needing to take an - God forbid - antibiotic. And this is a beautiful time of year. Don't let c diff spoil it for you.

Take it a day at a time.

kwiatek7
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Re: Suffering and Need Advice Please!

Postby kwiatek7 » Mon Apr 13, 2015 10:58 am

Thank you Bobbie for your positive/kind words. I guess we all just want that peace of mind knowing that in time we will feel better and theres nothing else going on. I will definitly check "surviving c diff", info in CDI. That is true, its finally looking like spring and theres a less chance of getting a cold/flu. I want to enjoy it this year, especially since last year around this time I started getting sick and was stuck in the house (so depressing). Will try to take it one day at a time :)

Thank you again Bobbie. Hope all is well with you.


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