Introduction from Hawaii

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CTK
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Introduction from Hawaii

Postby CTK » Fri Nov 24, 2017 10:50 pm

Hi! I'm so grateful for this support group - I read the introduction forums and am a bit overwhelmed with all the posts but already feel better having companions on this journey.

I'm a 63 year old female from Honolulu, Hawaii that was diagnosed with C-Diff on 11/11/17 after a stay in the hospital for a serious kidney infection/kidney stone (October 5) and lots of antibiotics. And I also had a set of antibiotics in early September for a wound infection (I fell and fractured my ankle - these past few months have been a doozy). However, previous to all this I was complaining about my guts - just too many BM and soft. I had been taking Magnesium to help stave off Kidney stones - so I stopped taking it. And then the CDFF hit. I hope that isn't TMI.

I started taking Vancomycin on 11/11/17 and finished on Tuesday 11/21 - 10 days. Since starting this antibiotic my stools have changed to D. And I felt junk - like I have the flu. I'd have a few hours or even a half day feeling normal. I'm with an HMO and my primary consulted with the infectious disease dr. and he prescribed taking an additional antibiotic (Metronidazole) with Vancomycin. That freaked me out and I refused. I'm worried because my mom had ulcerated colitis and my brother has Crohns. What if all this is no longer C-Diff but something else? When I asked to see a GI specialist I could only get an appointment for 12/26/17! The doctor said it wasn't urgent and there was nothing the GI could do until the CDFF cleared. I've been keeping records of all symptoms and what I've been eating.

I am also working with a naturopath who has helped treat people with C-Diff. She got me started on Sacro B (saccharomyces boulardii) similar to Floristor - 2 times a day when on the Vanco and now 3 X day. I'm also taking Allimed a garlic pill that works as a natural antibiotic. And just started some Chinese herbs that are to help heal the gut. I end the day with my favorite therapy - a Castor Oil pack - oil rubbed on belly with a heating pad for 45 minutes - to help with inflammation.

I'm worried about my nutrition. I was able to eat food early on but now I am afraid of all the D so I for three days now trying only soft foods: Bone broths, bananas, a Powdered Bone Broth (20 grams protein), rice, or jook (rice gruel with ginger), poi (a Hawaiian mash of taro that locals use for D and even feed to babies), yams. And Knox gelatin mixed with water and a little fruit juice. I started taking some Kefer (could only find the Strawberry shake kind). And drinking an electrolyte drink that is like Pediolyte - suggested by my primary.

I have good days (only 4 -5 BM - but never formed - I call it flaky) and then feel Ok in the afternoon/evening, followed by a bad day and half with awful sleep. But the yuck flu-like feeling of the antibiotics is mostly gone. I think this morning my BM had mucus - it looked like bits of fat floating in the water.

Is this post CDFF? Is it something else? Should I insist on seeing a GI specialist? Or the infectious disease dr?
What can I eat???? how do I know if something is bothering me? How long does it take to show up? and since the D never resolved, it is hard to tell.
(thank you) for your support and ideas. I know that you can only share what your experience is, and that I should go see my doctor and follow his/her advice.
Mahalo

CTK
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Re: Introduction from Hawaii

Postby CTK » Fri Nov 24, 2017 11:17 pm

PS - I forgot to add that I am taking a probiotic once a day and had been taking it during all the antibiotics (2 hours a part).

Also, I never got a fever (usually temp is 97.7 but sometimes it went to 89.7) and I usually get high blood pressure during the yucky feeling times.

Is Ensure or other nutritional drinks OK? I have protein powder (low sugar) made from peas - I wonder if I should mix that with a banana and some almond milk? I'm hungry but I'm not....

Thanks...

FrankS
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Re: Introduction from Hawaii

Postby FrankS » Sat Nov 25, 2017 12:57 am

Sorry you have c-Diff. You probably need to re-test for it via a stool test. I've read that one needs to wait 10-14 days after your Vanco treatment before retesting. However if you are feeling worse and more trips do the bathroom, I would contact your doctor ASAP. You do not want to get dehydrated and end up in the ER.

Another antibiotic choice that was easier on me was Dificid. Though expensive, some people on this forum have been cured with Dificid after trying Vanco. Much less side effects for me. It sounds like your food and probiotic choices are good. Avoid sugar, alcohol, and raw veggies.

NanciT
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Re: Introduction from Hawaii

Postby NanciT » Sat Nov 25, 2017 1:44 am

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

It sounds like you completed the Vanco a few days ago but are still having D and not feeling well. If it continues I would see a GI or an ID, the physician you have been seeing can refer you. We often get this question when someone has just finished treatment and its tough to know if symptoms are Post IBS or the start of a relapse. That's why its good to have one of the specialist on board.

Sticking to a bland diet is the best as the gut heals. I also found small amounts of food, tiny meals helped. Boiled chicken, baked potato,rice,toast,bone broth as you mentioned is a good idea. The Kefir can actually be soothing and I found it helped me. I had a lot of nausea and used :Sea Bands: which helped. I also used a heating pad.
Hopefully the next few days things will improve, it can take some time to feel better but if D starts up get in with the GI or ID

Take Care
NanciT

beth22
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Re: Introduction from Hawaii

Postby beth22 » Sat Nov 25, 2017 6:06 pm

Probiotics help most people, but for some they make symptoms worse. In the beginning, I had a lot of trouble with probiotics. Sacc Boulardii was the worst for me and gave me a ton of gas, D, and even a rash. Culturelle and Align gave me D. I finally found one that I could halfway tolerate. That is not to say that the probiotics are causing you problems, but it could be. Even the supplements that you are taking can do it - the garlic, etc. It is hard to tell, as Nancy said If it continues, I would get tested again, but often the test is not accurate until 10-14 days after stopping medication.

CTK
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Re: Introduction from Hawaii

Postby CTK » Sat Nov 25, 2017 6:30 pm

Thank you so much for sharing your experiences and cautions. Going over my experiences since the Vanco - it seems that things got way worse when I was on the Vanco. And now I am slowly feeling more normal for a few hours a day but still have D. I will check in with doctor Monday - post IBS?

How can you figure out what is bothering you e.g. the garlic or the Kefir?

I finally started eating some boiled chicken again - just an ounce at a time, chopped up fine, with a half of a small baked potato. My body was craving this! Hope it can handle it so I can get some nutrition.

I ended up in the ER last night because my blood pressure went so high. My gut was actually behaving and not gassy or bloated. They sent me home since BP came down on it's own. Yeah. I've noticed that my BP, which used to be pretty good all the time, can go up just around the time that I'm not feeling well - flu-like symptoms or bad D. Does that happen to others?

Can the GI doctor figure out if it is post IBS or a CDFF?

NanciT
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Re: Introduction from Hawaii

Postby NanciT » Sat Nov 25, 2017 8:28 pm

The GI will evaluate your symptoms. If the D continues, it is something that needs to be watched and people can get dehydrated quickly. Keep the fluids up and I had "smart water" which has electrolytes during CDIFF. I had the opposite issues although I do have hypertension, during my year with CDIFF my B/P would drop along with my potassium levels. If you have an issues with hypertension, you may want to monitor it at home also.

Your regular MD can refer you to a GI.

Hope you feel better soon

NanciT

justme
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Re: Introduction from Hawaii

Postby justme » Sat Nov 25, 2017 8:42 pm

Hi CTK. I am also in Hawaii (Oahu). Which island are you on? You mentioned the food you were eating and I think your body might not be quite ready to accept them yet. NanciT gave you good advice on following the very bland BART (or BRAT) diet. I would add papaya and poi since you live here are they are available to you. I had poi every day while in early recovery as it is very bland and recommended for those with stomach issues. Papayas are also a good way to get fruit into your diet without any side effects. If you can handle the probiotics, you are very lucky. They really bothered me a lot during my recovery and still do. Now, I only take them if I have to take an antibiotic.

If you are on Oahu, I wonder if you went to the same GI specialist I did. He said "I could send a camera crew up your butt, but I doubt I'd see anything, and just stay on a bland diet." Be careful with the Kefir and yogurt this early in your recovery, as they are dairy and lactose intolerance is a common side effect of this disease. It will take awhile for your body to recover from the assault of C. Diff, but it sounds to me that you are in early recovery. Stay away from food that is harder to digest (salads and some other vegetables - I found gourd type vegetables easier to digest) and don't go near anything spicy until your body has recovered. Introduce new food gradually and keep us posted on your progress toward recovery. BTW, the heating pad was my best friend when I was going through the early stages of recovery (I carried it all over the house and plugged it in wherever I sat down).

Aloha!
Anne

CTK
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Re: Introduction from Hawaii

Postby CTK » Sun Nov 26, 2017 1:52 am

Aloha Anne,

Yes, I am on Oahu and I am eating poi everyday - we are lucky to have that option here. I will try some papaya! A real treat. When did you first get C-Diff?

I appreciate your advise - I hope I tolerate the chicken. I really feel a lack of protein. Kefir, I can give up. I don't think the probiotics are bothering me...who knows??? I actually had a whole day today that felt good most of the time.

I don't have a GI doctor! I'm with Kaiser and I have to wait until Dec. 26 for my first appointment. I'm going to push for sooner. I tried once and will have to work on my primary doc to get an "urgent" request.

I'm worried now - I think I have the beginnings of either a vaginal yeast infection or another kidney infection. How will I deal with antibiotics when I haven't even recovered from the Vanco? I'm going to take the list of antibiotics to avoid if I go to the doctors.

Mahalo,
Cheryl

justme
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Re: Introduction from Hawaii

Postby justme » Sun Nov 26, 2017 4:20 am

Hi Cheryl:

I am with Straub, but my GI and Heart Specialist are in private practice. A good GI doctor is Darrell Lee who has his own group practice near Pearlridge. Being with Straub or Kaiser is good in some ways, unless you lose your doctor and you get a new one that you don't like or trust (that just happened to me). When I was in early recovery, I also took Metamucil (it adds fiber and fluffs your stool) and I still take it every day. A yeast infection can be treated with a cream, but a kidney infection is another thing. If you have to take an antibiotic for the kidney infection, you may have to increase the amount of probiotics you are taking (I would to be on the safe side). Be sure to inform the doctor that you are in C. Diff recovery and to give you the least offensive antibiotic if possible.

I'm coming up on the 4 year anniversary of my C. Diff recovery in March. One year to the day from C. Diff recovery, I got a stroke - everyone came to my room in plastic with gloves until my stool tested negative.

Good luck and aloha,
Anne

CTK
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Re: Introduction from Hawaii

Postby CTK » Sun Nov 26, 2017 9:01 am

Hi Anne,
I'm starting to realize how fragile this early recovery time is...trying to stay healthy and not catch some other infection. I will go into the clinic later this morning to check on the UTI. Doing sinus rinse regularly, too (starting to feel a possible cold.)

Thanks for sharing a bit of your story. Having a stroke a year after recovery! Oh my!! Glad to hear that things have calmed down now.

I'm not sure how Straub works but in Kaiser (an HMO) you are stuck with doctors in their system. And I can't just get a GI appointment without a referral. I have been paying out of my pocket to see a naturopath doctor that I have worked with over many years to supplement the Western medicine.

Interesting about metamucil - I read somewhere not to take it in early stages. I remember my mother taking Metamucil during the years she was dealing with a severe ulcerative colitis attack. I will talk to my doctor about that. Before CDIF, I had been doing finely ground Chia seeds regularly - just for the health benefits of the Omega 3's. and fiber. I miss that and the fact that I'm not eating the fiber and healthy fruits and vegetables that I normally eat. I asked for an appointment with a dietician - hope to get one soon. The one diet fact that I feel pretty clear on is to steer away from raw fruits and veggies and gassy stuff like beans and broccoli. Trying to get protein and collagen (bone broth and home made gelatin)

I'm glad that new comers can post a bunch! Is it OK to be doing back and forth between us two local Hawaiians in this forum? I really appreciate knowing I'm not alone.

Mahalo nui and all the best to you
Cheryl

Ril
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Re: Introduction from Hawaii

Postby Ril » Sun Nov 26, 2017 5:25 pm

Cheryl, we have a PM (private message) function that works like emailing and you and Anne can PM each other as much as you like.
We are much more lenient with the number of posts for new posters but you have to use the PM function if you want to converse back and forth with each other.

That said, I am glad you have found each other!
Rita


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