Back to square 1 or is there hope still

Since c-diff is a disease of the "lower half", so to speak, we find that many of our members cannot refrain from discussing what comes out the bottom end. If you must do it, please do it here.
Anib
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Back to square 1 or is there hope still

Postby Anib » Sat Aug 03, 2019 1:24 pm

Hi everyone, I’m so worried that this is another relapse. I was put on 10 days of vanco back in April which I promptly relapsed on. Then I was put on a long vanco taper/pulse and completed that 15 days ago. I was doing great and feeling so optimistic and hopefully, but yesterday and today I’ve been having D (Bristol 6 -mushy) a couple of times a day. No real urgency (yet). I’m having cramping, extreme fatigue and low grade fever (99.7) which could also be due to a cold in fighting. The other thing is this is the first morning in weeks that I’ve woken up without an appetite. I’m taking s. Boulardi (3x yesterday) and a multi-strain probiotic and kefir). My question is, for those of you that went through this, were there days like this that didn’t turn into a full-blown relapse? I saved a single vanco pill for the “just in case” scenario, but I’m hesitant to take it if this is just IBS.

NanciT
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Re: Back to square 1 or is there hope still

Postby NanciT » Sat Aug 03, 2019 9:59 pm

YES! I cannot tell you have many "off" days I would have. I would go back to a bland diet and carefully watch and wait. It takes time for the gut to heal. I don't know how your diet it, but mine was affected greatly after having CDIFF.
The Post IBS is common and takes time. When I relapsed, it was back to full WD and would not let up.

Hang in there, there are also medications that can help IBS. I took Levsin post CDIFF which did help. Call your GI if symptoms continue

NanciT

Anib
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Re: Back to square 1 or is there hope still

Postby Anib » Mon Aug 05, 2019 9:58 am

Thank you NanciT. It’s really a rollercoaster with this infection and hard to gauge success. Since things didn’t get any worse yesterday, I’m going to take this as a good sign. I’ve kept my diet pretty bland (mostly white rice and chicken/fish), plain yogurt, fermented veggies. Occasionally, I’ll have a prune or 2 for some fiber, but I think I have to cut that out. Thanks again for your insight and support.

Ril
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Re: Back to square 1 or is there hope still

Postby Ril » Mon Aug 05, 2019 8:15 pm

You might want to think about 3 s. Boulardii, another probiotic and kefir...that might be too much for your gut to tolerate. I would drop down to 2 pills instead and definitely no prunes. I also struggled and had a diet much like yours for several months and feared a relapse but it was severe PI IBS.
Hang in there and try not to look in the toilet unless you hear water coming from you!

Anib
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Re: Back to square 1 or is there hope still

Postby Anib » Wed Aug 07, 2019 8:57 pm

Thanks Ril. I took your advice and cut the probiotics down to see if there’s any improvement. I saw my ID dr yesterday who thinks I’m recovering, but was concerned that I’m still losing weight (down to 117lbs now from 132) so I’m being sent to a nutritionist. He said it could be due to malabsorption, but that would be pretty rare following c.diff. I’m hoping it’s due to my extremely clean diet and not some other new malady. I’m eating pretty healthy portions so I am surprised at the weight loss. Anyone have any ideas on how to gain weight or have any experience with malabsorption syndrome?

Ril
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Re: Back to square 1 or is there hope still

Postby Ril » Sat Aug 10, 2019 8:22 pm

Are you eating enough calories? Perhaps in your efforts to eat clean you are overdoing it and cutting down the caloric intake. I could tolerate smooth peanut butter on toast, I could add low sugar jams after a while, pasta with an egg beat into it and some grated cheese, baked white potatoes with seasoning, full fat yogurt with fruit, etc. Start adding foods one at a time to see what you tolerate. And eat several small meals rather than 3 big meals so you can pack in more calories.

It’s likely what you are eating and your low caloric intake, but I am sure the nutritionist will analyze what you are doing and give you suggestions.

beth22
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Re: Back to square 1 or is there hope still

Postby beth22 » Sun Aug 11, 2019 1:19 am

I kept losing weight too and was told it was malabsorption, but I tested positive for SIBO. It took me a long time to gain back the weight I lost. I started counting calories too. Some people can tolerate Ensure or Boost, but I couldn't. You could try it and see. Otherwise, try to increase the portions of the foods that you do tolerate.

Bobbie
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Re: Back to square 1 or is there hope stil

Postby Bobbie » Sun Aug 11, 2019 12:03 pm

Anib,

I, too, lost lots of weight with c diff but gained it back slowly with Ensure Plus - vanilla - 2 cans a day plus regular small meals. Probiotics help some and don't do much for others; see if your doc will give you free samples. Try one at a time and keep a food diary. Ask your doc about the prebiotic fiber products. I have good luck with Benefiber. Start small and work up. I take 2' tsp twice a day for IBS. I don't know about using it with active c diff. Ask your doc.

As u know, c diff, is a frustrating complicated disease.There is a lot of trial and error involved in treating it. "Just IBS" has similar symptoms without the serious complications.

Hang in there. U will recover eventually. See Roy's post re Anxiety in General Discussion. Almost everyone with c diff is anxious and some suffer PTSD - I am one.

Keep posting. We know what U are going through.

D1dad
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Re: Back to square 1 or is there hope still

Postby D1dad » Sun Aug 11, 2019 9:04 pm

I worked out regularly before cdiff and dropped from 180 to 165 in a few weeks. At 6 1” that was very thin for me and I wasn’t able to gain weight back until I added whey protein mixed with almond milk. Ensure is fine but your overpaying for the packaging and marketing. Naked whey protein comes from grass fed cows and is very clean so there’s nothing artificial to worry about.

Anib
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Re: Back to square 1 or is there hope still

Postby Anib » Tue Aug 13, 2019 1:23 am

Thanks everyone for your suggestions. When I actually sat down to analyze what I’m eating, I realized I’m not eating nearly as much as I did before and as Ril suggested, I have cut a lot of my favorite foods out of my diet in order to eat bland/clean. I’ve always had a pretty healthy diet (mostly chicken/fish and lots of veggies, herbs, legumes), but alot of these dishes also have high fiber contents so I’ve stopped making them. I asked the ID doc about ensure and he said it’s fine to take, but keep in mind, it’ll give you D, not c.diff, but D nonetheless. I think keeping a food journal is a great idea and I will need to go shopping for some high calorie snacks I can take to work with me. I will also try the whey powder with almond milk. Thanks again, the encouragement and support from this community has been invaluable.

Bobbie
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Re: Back to square 1 or is there hope still

Postby Bobbie » Wed Aug 14, 2019 1:07 pm

Anib,
Thx for the thx. We do appreciate it. Most of our mods/admins are the "unusual cases" who did respond to ordinary treatment so we understand too well how u feel.

Am glad u are working - helps with "frame of mind." Ensure did not give me diarrhea, but every one is different.

Keep hanging in there and posting.


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