C Diff Recovery Questions

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jayut
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C Diff Recovery Questions

Postby jayut » Wed Nov 16, 2016 12:21 pm

Hello,

I'll try to keep brief and concise. Thanks in advance to the community. This forum has a wealth of knowledge and experience.

Male, 38 years old. Started showing symptoms Oct 6, 2016, but may have been festering since June 2016. Diagnosed via positive Cdiff PCR and culture on Oct 14, 2016. Possibly caused by combo of different abx including flagyl. Therefore, went straight to second line Vanco 125 mg 4 times daily for 10 days. Finished Vanco on Oct 24, 2016. Negative follow-up C diff PCR test on semi-formed stool on Oct 31, 2016.

From what I have read, everyone’s recovery is unique. Nevertheless, there seems to be common themes to recovery; therefore, I’d like to get some current personal opinions on the following. These are my current symptoms 3 weeks after completing Vanco.
1. Abdominal pain is usually in my lower abdomen below my belly button and wraps around from the front to back like a belt of pain. It’s persistent all day long, but when it flares-up I get shooting pain down my legs. Heating pad does help.
2. My stools are forming and getting firm, but are small and have some mucus. Also, I seem to have 2-4 urgent and painful bowel movements in the morning and then no more for the rest of the day.
3. The headaches are a relentless 24/7 ordeal. Anyone else experience headaches during recovery? What helped?
4. Also, body aches, chills, joint pain, and weakness are persistent. I feel like I have a fever, but my temperature is actually in the low 98 F range.
5. Nausea and low appetite is also persistent, but seems worse in the morning hours.

What is your opinion experience with the above symptoms during recovery?

Recovery protocol prescribed by GI, PCP, and Nutritionist docs.
1. Raise red flag immediately for: blood, diarrhea, or fever
2. Diet: Low glycemic, clean, colorful, complex. Avoid dairy, gluten, refined sugars. Slow and cautious with raw vegetables and fruits, because it may lead to bloating and gas. Increase naturally fermented probiotic foods: kimchi, sauerkraut, and kefir. Increase prebiotic foods to tolerance: berries, apples, sweet potatoes, cabbage, peas, carrots, etc.
3. Supplements: Nature’s Lining Chewable BID + copper to maintain ratio, glutamine, enteragam 1 packet BID, Vitamin D
4. Probiotics: Florastor 1 pill BID for 6 weeks, rotate bacteria probiotics weekly (rules: > 2 brands, > 5 strains, > 5 billion CFU, one must be enteric). Therefore, rotating Primadolphilus Reuteri, Jarrow-Dophilus EPS, and Ultimate Flora 50 billion. Will add in Dr. Ohhira’s Pro formula and VSL3 later.
5. Fiber: Slowly increase psyllium husk and inulin. I found inulin/stevia sweetener to be enjoyable in ginger herbal tea.
6. Exercise: 3 times daily for greater than 10 minutes to elevate heart rate slightly. Walking, stretching, light resistance training. I am doing too much if I are get sore or burning muscles.

Lisa33
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Re: C Diff Recovery Questions

Postby Lisa33 » Wed Nov 16, 2016 3:50 pm

Hello Jayut - Welcome to the site. Please read the first forum for new users on rules of posting, standard intro, testing info, etc. So sorry you had to endure c-diff. As you said, everybody's recovery is unique. But, a lot of what you stated is true for many. With me, I was lucky to not have had any pain really. However like you, my mornings were always the worst in recovery, especially early recovery as far as frequency, nausea and lack of appetite. BM's were very inconsistent, but mostly loose to semi-formed. I sometimes had mucus as well. For the most part, the rest of the day would be ok. I also felt like I had a constant flu after finishing meds. I had terrible fatigue, fogginess and joint pain. My doctor told me that after fighting an infection like c-diff, our bodies are run-down and we need to boost our immune system back up. A complete blood workup is probably a good idea after c-diff so that you can see if you have any deficiencies, which can also lead to these symptoms. Many of us did have deficiencies in vitamin D or B. I was deficient in Vitamin D, so I added that supplement. What worked for me actually was going gluten free. My doctor suggested it, so I gave it a try, and after a few weeks, I started to feel a lot better GI-wise and with the flu-like symptoms. But again, what worked for me, may be different for others. Between the gluten free diet, avoiding bad sugar and adding supplements, I started to feel better. I continued with probiotics as well. I am two years out and still take them. I recently just dropped VSL-3, but I was taking 1-VSL3 and 1-Florastor daily. I also drank Kefir and/or ate yogurts with live cultures. The symptoms of chills, headaches and feeling like I had a fever was mostly when I had active c-diff. Like you, I never had a fever, but sure felt like I did. Everything that you have described doesn't seem unusual for somebody in early recovery. However, if you start to experience frequent watery D, more than 3 times per day with the urgency to go, then it's time to see the doctor. That could indicate a relapse. Relapses are usually treated based on symptoms alone, but there are still many doctors who test, as yours did. However, if you test, it should be at least 10-14 days after finishing meds or you may get a false result. The most important thing is to pay attention to your symptoms. Testing for a cure can lead to over-treating. It sounds like you are doing pretty well. I wish you continued improvement.

Lisa

georgina
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Re: C Diff Recovery Questions

Postby georgina » Thu Nov 17, 2016 2:11 am

Jayut
Recovery takes a long time and it's hard for most of us. The fact that you are having formed BM and they keep getting firmer it's great .All those symptoms like :pain and flu-like symptoms sound to me like a perfectly normal recovery , your body is trying to discharge itself from residual toxins and fight back. Give yourself time as time is to greatest healer and do something about that pain . If the heating pad doesn't help , perhaps you should discuss with you doctor about antispasmodics.
I also had terrible headaches and my doc had to put me on a low dose of Carbamazepine to control them.
You said you are upped your fermented food intake , be carefull you are taking a lot of probiotics and they can give gut upset too. I make homemade pickles and sauerkraut because my family loves to eat this , I love it too but can't touch it because it give me cramps and puts me on the toilet in less then 15 minutes.

jayut
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Re: C Diff Recovery Questions

Postby jayut » Thu Dec 08, 2016 6:17 pm

Hello All,

I believe I am now 7 weeks C Diff free. My stools continue to form and firm. However, I continue to have concerns and questions.

Concerns:
1. Usually have 2-4 semi formed and firm stools, but all still occurring in the mornings. Almost always starting at 6 AM and ending before 10 AM. Is this typical for recovery?
2. Still have lower abdominal pain. Typically flares in morning during bowel movement then have afternoon flares around 2-3 PM. Does anyone's crystal ball show when the pain will subside?
3. Biggest concern - I lost 25 lbs and haven't been able to gain any weight back. This makes me worry I am not absorbing the nutrients, vitamins, and minerals I need. I also continue to feel weak and achy. Any thoughts?
4. I have frequent urination, but tested negative for UTI. I have been urinating every 1 hour, but sometimes it flares to every 10 to 15 minutes. I can deal with this during the day, but it seems to flare the worst at 4 AM in the morning. Any thoughts?

Questions:
1. GI doc recommended Florastor 1 pill BID for 6 weeks. I was going to reduce to one pill daily for maintenance. Is this a good idea and how long would be good maintenance dose?

Thanks for your time

georgina
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Re: C Diff Recovery Questions

Postby georgina » Fri Dec 09, 2016 1:49 am

Hi Jayut
It seems like you are doing well with some mild IBS symptoms here and there. 2-4 BM in the morning is normal , if they are formed is even better , cramps are normal in recovery , as long as it's not sharp pain you are fine, you can control the pain with antispasmodics (ask your doctor about them). Gaining weight is a problem after Cdiff , i started gaining weight when i was put on antidepressant. I belive you are still on a diet , maybe when you will start to eat more normal foods you will gain back some more pounds. Check for Vit D and B12 , most of us were deficient in those.You said you are worried about frequent urination , if you tested negative for UTI you might wanna check your prostate.

jayut
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Re: C Diff Recovery Questions

Postby jayut » Tue Dec 20, 2016 9:43 pm

Good advice on the prostate. Urologist confirmed inflamed prostate. He is concernd it is infected, but wants to do a culture to verify. If positive then he will send me to ID due to c diff history. I thought maybe I was in the clear, but this really sucks.

Anyone with experience with post c diff prostate infection or have words of wisdom?

Thanks

amyc
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Re: C Diff Recovery Questions

Postby amyc » Tue Dec 20, 2016 11:37 pm

I'm a woman, so no prostate, but I had bladder and pelvic inflammation for a while after C diff. I found a fantastic GI who also specializes in mast cell disorders and he put me on OTC antihistamines twice a day, and it solved my bladder issues among other things. Hopefully your culture will come back negative :).

georgina
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Re: C Diff Recovery Questions

Postby georgina » Wed Dec 21, 2016 2:10 am

Maybe one of our male posters can jump in and give some words of wisdom on prostate problems! :)

jayut
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Re: C Diff Recovery Questions

Postby jayut » Mon Jan 09, 2017 4:10 pm

CDI recovery continues to progress. I am now 2.5 months into recovery.

Positives:
1. Appetite is returning and nausea is gone
2. Stools are consistently firm and formed. Also more spread out through the day rather than all in the morning hours. No mucus.
3. Headaches are present, but more tolerable.

Negatives:
1. Still a lot of abdominal pain. When severe, the pain shoots down my legs.
2. Still have body aches, chills, joint pain, and weakness.
3. Still not gaining any weight.

Docs believe I am dealing with PI-IBS and non-infectious prostatitis. They want to play a wait and see game at this point. This is definitely a tough test of patience. At times I feel like I am failing this test.

beth22
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Re: C Diff Recovery Questions

Postby beth22 » Mon Jan 09, 2017 8:09 pm

Give it time. The colon and intestines take a long time to heal. Introduce new foods carefully.

georgina
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Re: C Diff Recovery Questions

Postby georgina » Tue Jan 10, 2017 8:57 am

Yes , be patient , time is the ultimate healer. You can try a heating pad for the abdominal pan or you can ask your doctor about antispasmodic medication.Mebeverine and peppermint tea helped me alot when i was in pain.

Ril
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Re: C Diff Recovery Questions

Postby Ril » Tue Jan 10, 2017 9:53 am

PI IBS can persist for a long time. It can get really wearing and frightening in terms a fearing a relapse, but that is normal. You are really doing well. Your movements and nausea are under control. Many struggle with that for a very very long time.

I agree that you should ask about an antispasmodic to see if that helps control the pain. Try eating several smal meals throughout the day. They are often better tolerated than large meals so may help you gain weight. Agree with Beth about introducing new foods slowly and carefully in case you have developed intolerances.

It is a slow process but eventually you will gain the weight back
Rita

Vanessas
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Re: C Diff Recovery Questions

Postby Vanessas » Tue Jan 17, 2017 7:47 pm

I had the same symptoms,chills down my legs and arms,shakey feeling and severe headaches which made me feel like I was going crazy hearing things and numbness of the head.Any little sound I would jump I was like a different person,I actually asked my general doctor to put me away and I was losing my mind.I had c diff for 4 months and my doctor or I didn't know it.I told her over and over I had D but she just kept telling me it was my diet.My dog had c diff 2 months before I did.Antibiotics play no roll in either of my or my dogs infection.Im 39 and almost died from it,long story short it's been 4 1/2 months and feel 70% back to normal.I almost feel better than I did before CD because I am eating good food like fish and veggies.It want until this month I started to feel good.I have ibs but now tolerable but was bad a month ago.I get the chills and a little nausea and rapid heart rate when I have to make a BM but then goes away.It gets better but takes 6 months to heal intestines.I take florastor 2x a day and garden of life 50 billion woman's probiotics and woman's multi vitamins with omega 3 by nature made.

jayut
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Re: C Diff Recovery Questions

Postby jayut » Fri Apr 14, 2017 5:00 pm

Hello All,

It's been 5 months 20 days since I completed C Diff treatment. Fortunately, I haven't relapsed! Yet?!?

Nevertheless, I still have some issues.
1. Still have weakness, aches and pains. Occasional chills and body aches.
2. Abdominal Pain. BM's are well formed and processed 90% of the time. The other 10% are just slightly off.

Do to these ongoing issues my doc, nutritionist, and I decided a nutrient evaluation was in order. I did a SpectraCell Micro Nutrient Panel and an Organic Acids Test.

It showed many deficiencies.
B1, B2, B3, B6, B9, Glutamine, Serine, Oleic Acid, and Glutathione. Apparently, I have also contracted a fructose sensitivity.

It's weird that I have these deficiencies even though I am taking an enzymatic Multi-vitamin and an additional enzymatic B-complex daily.

I guess C. Diff can really disrupt the microbiome and nutrient absorption.

I have an appointment with the Nutrionist on Tuesday. Hopefully, we can figure out how to feed my body what it needs.

justme
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Re: C Diff Recovery Questions

Postby justme » Fri Apr 14, 2017 6:13 pm

Hi Jaygut:
It looks like you are managing your recovery well. Many of your issues reflect what most of us have experienced, with some differences. A lot of the differences depend on age, overall health at onset, etc. I just celebrated by 4th year of recovery and my biggest leftover from my bout of C. Diff is continuing IBS. I still have certain food intolerances and cannot take probiotics in any form (however I do take prebiotics). Dairy, sweets, and spicy food bring on a bout of IBS, so I try to avoid them. It takes the colon a long time to heal, so don't get overly anxious if you can't find a panacea that will quickly do the job of healing your colon. Don't forget to take time to relax, do some light exercise (don't push too hard), and get lots of sleep. Everyone on this site has been where you are and each has their own story. They are a wonderful source of information and support. Good luck to you.
Aloha,
Anne


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