Concerned & Confused

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Astuibs
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Concerned & Confused

Postby Astuibs » Sat Sep 08, 2018 2:19 am

Today is my first day posting, but I've read many posts on this forum during the 6+ weeks since I was diagnosed with C-Diff. I definitely found comfort in knowing what others have gone through in reference to what I have gone through.
Like so many, I was on a strong dose of antibiotics for a very nasty bladder infection and 4 days in I developed uncontrollable diarrhea. 6 days later my Dr. ordered a Gastrointestinal PCR panel and I was diagnosed with C-Diff. I had never even heard of C-Diff until then, but I knew whatever it was I was sick.
I was given Vancomycin for 10 days during which I continued to have bad D & M on and off throughout the course of my antibiotic and extreme fatigue. 1 week after finishing Vanco, I ended up in the ER with what I believe was a Retinal Migraine (vision disturbance and seeing colored diamonds...no joke) and was diagnosed with dehydration.
I'm now 5 weeks post Vancomycin and still having bouts of D&M (but not really the C-Diff odor I had prior to treatment). The past week has been daily, each time shortly after I eat. I've kept my diet very bland, no spicy, no dairy etc. Shortly after I eat, my stomach starts rumbling and I usually end up in the bathroom with D for about an hour. I have some left side pain that is intermittent but not excruciating. More of a dull aching with just occasional sharp pain. I've also had spasms that were not painful but annoying that felt like (and actually looked like) a baby kicking.
My Dr. re-tested me today with a Gastrointestinal PCR Panel, which again showed C-Diff detected. He also ran a C-Diff toxin screen which I tested negative. I was told that I do not have C-Diff again and that the first test will show positive for weeks. I'm confused and not convinced based off of my symptoms that the C-Diff is gone. All blood work was in normal range except my Vit D, which was low.
My question is could the C-diff have damaged my Colon and that's why I still have contined D&M even though according to my Dr./test I don't currently have an active infection?
Is it normal to still have D&M 5 weeks after treatment, and feel nauseous after each time I eat? If yes, how much longer could I experience this?
I do have an appointment in 2 weeks with a Gastroenterologist to go over what my regular Dr. has checked so far and what else I can do to feel normal again.
As you know, C-Diff has been a rollercoaster of emotion and feeling genuinely sick. I've lost 15 lbs so far, and though I could stand to lose more it's not a healthy way to do so. I just want to move on with my life and feel like myself again.
Thank you so much for any advice you can give to me.

NanciT
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Re: Concerned & Confused

Postby NanciT » Sat Sep 08, 2018 10:34 am

Hello and Welcome to the site Please read the first thread for all new posters

Everyone is different when it comes to "Post Cdiff". The fact you tested negative, it's is gone but symptoms remain. We always recommend a follow up with your GI, sometimes they run additional tests to rule other issues out. In alot of cases, people are dealing with post IBS. In my case after being treated for a year...it continues. Some recover quickly, other's can take time.
If your GI diagnosis Post IBS there are medications that can help, I would give them a call and explain your symptoms to see if they can get you in earlier.

Keep a close eye on your diet in recovery, stick to a bland diet that is easy on the gut. I recall my GI saying "eat normal" and there was no way I could do that. It takes time to heal.
I used "sea bands" for nausea which you can get a most drug stores like Target. They helped me a great deal, I still wear them on and off when nausea hits.

Most people are used to being treated for an illness and getting better, with CDIFF that can take time

Try to move up your appt, hope you feel better soon

NanciT

Astuibs
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Re: Concerned & Confused

Postby Astuibs » Sat Sep 08, 2018 3:36 pm

NanciT, thank you so much for your caring and advice. I'm going to call the gastro Dr. on Monday and see if I can go on a cancellation list. The sooner I see him, the closer I will be to getting more answers.
I'm still trying to eat bland, but right now even bananas are causing D. It's to the point that I don't really have much appetite, but I'm working on it.
It is good to have people that have been there and can relate to how I'm feeling. Glad my C-Diff test was negative, but I feel far from better, as I'm quickly understanding is the unfortunate normal.
Again, thank you! I will post after my GI appt. with an update.

NanciT
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Re: Concerned & Confused

Postby NanciT » Sat Sep 08, 2018 5:36 pm

Let us know how you do and understand this is very common. It can take a long time to recover. But I always suggest that follow up even if someone has tested negative. One question is how long after the Vanco did you test??
I was on a medication called Levsin which helped alot with IBS, I also continue taking VSL#3. I know how difficult it can be to eat. Try rice, baked potatoe ( one of the few things I could eat) crackers, toast, and then I started with chicken I would cook chicken all day in the crock pot with just chicken broth. It is very bland and now although I am much better, I have very "off" days and I go right back to bland foods.
I stayed away from all fruit, I could not tolerate it for a long time. I added foods very slowly

Hang in there, hope things improve soon and I would push to get in soon with D and M everyday

NanciT

Astuibs
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Re: Concerned & Confused

Postby Astuibs » Sat Sep 08, 2018 10:16 pm

I was tested yesterday which was 5 weeks after I finished the 10 day course of Vancomycin. The PCR panel showed "Detected" for C-Diff, but the toxin test was negative. None of the other parasites I was tested for showed any detection.
**Please note, I take Aciphex daily before breakfast for a hiatal hernia/Gerd and have been taking that for years. Every time I tried to stop it in the past my heartburn got really bad. I also had my Gallbladder removed last spring due to crystal's and sludge causing so many problems. In fact, I was doing really good with my stomach after the surgery until this whole C-Diff hit me.
What concerns me the most is everytime, regardless of how bland my meal is the following happens shortly after:
1) My stomach starts churning (sometimes while I'm still eating). Sometimes I get twitching, pain or spasms on the left side of my stomach.
2) My bottom feels pressure, like I need to push. Most of the time I have D or loose stools about 15-30 minutes after I eat.
4) Even if I don't have a BM, I still have a constant urge to go for quite a while after eating.
5) I feel like I burp alot right after eating.
6) I feel nauseous and just plain icky.
Putting a hot pack on my stomach does help the churning to settle down a bit but I still get some spasms and twitching.
I do hope when I call on Monday they can get me in sooner. I know it's a long road, but I just want to make sure something else isn't going on.
Thank you again for your help!

AllisS
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Re: Concerned & Confused

Postby AllisS » Sat Sep 08, 2018 10:47 pm

Not being a medical practitioner, I couldn't say whether your continuing to take a PPI such as Aciphex is important for your hernia and GERD or not. However, I've had experience with trying to withdraw from PPIs, which doctors insisted that I "needed" for many years. The worsening of the heartburn when trying to stop PPIs is due to "rebound GERD." If your GI thinks it would be OK to try and stop PPIs and perhaps substitute Zantac instead, ask him for a tapering "schedule" whereby the PPI is withdrawn slowly and is less likely to cause rebound. After I had C. diff and also after being diagnosed with osteoporosis I was determined to get off the PPIs. I've not taken a PPI in four or five years; I use Zantac for heartburn symptoms that don't subside on their own, but I don't take it regularly.

If you aren't satisfied with the answers that you get from your regular GI, see if you can get a referral (or self-refer, if you have that option) to either a GI doctor specializing in C. diff or an infectious-disease doctor. I got very little help from my regular GI doctor when I had C. diff; in fact, his NP, to whom he delegated my care, gave me so much misinformation that I left his practice -- saw a C. diff specialist instead -- and afterward switched to a new GI's practice.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

beth22
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Re: Concerned & Confused

Postby beth22 » Sun Sep 09, 2018 1:57 am

The fact that you had the gall bladder surgery might account for some of these symptoms too. I remember other posters writing that they had a lot of D and they tested negative. I think some of them took digestive enzymes and it helped. You can look in the search box and see if you can find some old posts. I would definitely discuss all of this with your doctor, and as Nanci said, there are medications to ease IBS symptoms.

One thing that I found was that when I started to supplement with vitamin D (I was also low), the consistency of the bms improved. I also test positive on PCR and negative on EIA toxin tests. I have for over 2 years now since I was hospitalized and took antibiotics, but I am more on the C side.

Astuibs
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Re: Concerned & Confused

Postby Astuibs » Sun Sep 09, 2018 8:55 am

Thank you all for your responses. I will be picking up my prescription for Vit. D today and I'm hoping my energy level increases with it too as I've been super drained ever since getting C-Diff 2 months ago.
I too think having my gallbladder removed and taking Aciphex along with the strong antibiotics I was taking for a bladder infection made for a perfect storm that resulted in my getting C-Diff.
Unfortunately, I have been getting bad bladder infections every few months, so I will have to be VERY careful with any future antibiotics. SCARES ME SO MUCH because when I get bladder infections, they come on so fast and I have alot of blood and clots pass through my urine...so painful. Since I had a Hysterectomy many years ago, any site of blood makes me concerned. I have been seeing a urologist and have been put on premarin vag. cream. I was told that will help eliminate my bladder infections....I pray he is right!
Thank you for your care and help in my understanding what post C-Diff life can involve. It has helped me tremendously.

Ril
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Re: Concerned & Confused

Postby Ril » Mon Sep 10, 2018 9:26 pm

Astuibs, I had terrible PI IBS for a very long time with some symptoms quite similar to many of yours. I am not saying that is what is causing your problems but it is still a possibility. I am sure your GI may consider that. There are many medications that can help give you relief if that is the case so there may be help on the horizon.

In terms of the PPI, you sometimes have to weight the risks vs benefits. If you can get off and use Zantac it is great but if not, there are other risks to reflux besides discomfort so discuss options with your dr. Unfortunately I am one who has been on the strongest PPI for many years although I would love to get off....

There is a end in sight. There was a time I doubted that but I have been well for several years now so hang in there.
Rita

Astuibs
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Re: Concerned & Confused

Postby Astuibs » Tue Sep 11, 2018 7:46 pm

Thank you Rita, today was a little better, and by better I mean at least no D so far. I had to go back to eating very bland and have decided that's all I can eat until I see the GI and figure out what I can do to feel better. Anything beyond bland is a complete disaster for my tummy and bottom.
I'm on a cancellation list and can hopefully get in sooner with the GI. Otherwise it will be a long two weeks. Besides my digestive concerns, my bottom is extremely sore and has a lot of pressure. I will talk to him about PI IBS and my Aciphex.
It's been 8 weeks total since I started with D & 6 weeks since diagnosis of C-Dff, not nearly as long as many on this forum. I thank you all for being here to share your experiences because it truly has helped me! I pray I feel better soon...........

Astuibs
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Re: Concerned & Confused

Postby Astuibs » Thu Sep 13, 2018 11:11 pm

Earlier this week, I had alot of pain and pressure in my rectal area. I had a really hard time sitting and was so uncomfortable. I went to my regular Dr. and he ordered some cream to apply, which thankfully helped. I think my bottom just couldn't handle all the diarrhea anymore, and was so inflamed. I am glad that area is feeling a bit better.
I was able to see the GI Dr. today. I don't think I explained myself very well or told him everything. I should have made a list, but I did email him with more details. He wants me to wait 2 more weeks to see if my symptoms get any better. I'm 6 weeks post Vanco tomorrow. He said that it can take time to heal and it could still be PI-IBS. If my symptoms stay the same after 2 weeks he wants to do a Colonoscopy. He said that way he could see if there was any damage to my colon and also if I still have c-diff.
I'm also going to stop using the Aciphex, and try to use Zantec or Tums. If my reflux gets too bad I may have to go back to it, but I will try not to.
Thank you.
Ann

AllisS
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Re: Concerned & Confused

Postby AllisS » Fri Sep 14, 2018 1:00 am

Don't stop the Aciphex cold-turkey! You will get rebound symptoms, which the Zantac or Tums won't be able to address, and you'll probably end up back on the Aciphex. Per my earlier post, ask the GI dr to give you a tapering schedule for the Aciphex.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Astuibs
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Re: Concerned & Confused

Postby Astuibs » Fri Sep 14, 2018 9:24 pm

After emailing more details to my GI last night, he put me back on Vancomycin for 14 days. I just can't get rid of my D! I'm eating bland, very bland but it seems that most everything is causing D now (and often M). I'm not even hungry anymore and only forcing myself to eat 600-700 calories a day. Hard to get excited to eat bananas, cream of rice, toast, & soda crackers. Sometimes I can eat egg whites, but not the past 2 weeks since my symptoms got worse. Has anyone tried Lactaid milk? My tummy was getting spasms when I was using almond milk.
I talked to my pharmacist and I'm going to taper off my Aciphex. If it might be contributing to my C-Diff, I'd rather not be on it. I will just try the Zantec or tums for my GERD once I finish the Aciphex.
I'm really sad and I pray things get better soon.
It's hard not to feel defeated sometimes and I guess I'm just tired of not feeling good and so tired of having D.
Thank you!
Ann

Bobbie
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Re: Concerned & Confused

Postby Bobbie » Sat Sep 15, 2018 2:35 am

Ann,
I have a hiatal hernia and GERD. I was on a PPI for years but switched to generic Zantac which works well for me. Wait at least 30 min. befire eating. See all the hints in CDI to help control the GERD/acid reflux.

Good luck to you.

NanciT
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Re: Concerned & Confused

Postby NanciT » Sat Sep 15, 2018 10:05 am

Talk to your MD about slowly getting off aciphex. I did some research on this because I was on it a long time. It was a slow process. I transitioned to Pepcid which is OK....still working through it. It takes time.

Go slow getting off it, wishing you the best

NanciT


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