Confused & Scared

[SJW2903]

Hello,

I’m 57 year old female and feel about 5 at the moment as I am so scared!

I was diagnosed with c diff on 19th April 2021. I was treated with 10 day course of metronidazole which finished just over 3 weeks ago. I never had watery stools but lots of pain and urgency as well as blood and mucus. The Dr doesn’t know how I got the infection as I had not been in hospital or on antibiotics. (I had severe watery diahrea mid February, c diff test was negative, put down to gastroenteritis so they wondered if that cleared out my good gut flora and allowed cliff to get a hold).

I have not felt right since and had a retest yesterday which showed low level toxins still in system. My GP says this is not unusual. I have little appetite and still have discomfort and cramping. A few days ago I had several loose stools and so the retest. Since then I am back to going 2 times in the morning, formed but loose. I still have discomfort, no appetite and feel rotten. I have been eating simple foods but still losing weight. My fecal calprotectin level on initial diagnosis in April was really high at 1800 and I had blood in my stool. My GP wants to retest stool for calprotectin and blood and also wants me to have a colonoscopy as they are concerned there is an underlying problem.

Dr has said I could have vancomycin prescription but would recommend not at the moment as no watery stools (although I never had this in the first place). It’s the discomfort that’s getting me down and not being able to eat much. I was hoping this was PI IBS but not sure now as low level of toxins detected.

Can anyone offer me any advice please? I don’t want a colonoscopy as I am worried it will make things worse and actually feel too scared to have the procedure. I’m such a mess and my anxiety is through the roof. I have looked at loads of posts on here and found comfort and decided to reach out for support. I feel like I’m going to die from this as I have no energy and am not sleeping well either.

Thank you so much,

Sally x

[beth22]

Hello Sally X and welcome to the site. You can find more information for new posters in the first forum.

I think that your doctor is correct in holding off on the vancomycin unless you get a full blown infection. I was given vancomycin and I think it made things worse because it really wiped out my good bacteria. There are some other options out there. Some people have taken cholestryramine, which is a powder that you mix with water or juice. It binds up toxins and carries them out. It is actually a cholesterol lowering medication, but has been used for "mopping up" c difficile after treatment. Metronidazole is no longer advised for c difficile. Vancomycin or Dificid are the drugs of choice.

I took Pepto Bismol for IBS type symptoms and even took it when I had a positive test, but no watery D. I would ask your doctor if you could take either that or the cholestyramine. If things get worse, then vancomycin is still an option.

[GtrGrl]

Hi Sally,

I don’t have further wisdom to add, but I just wanted to let you know the fear and anxiety happens to the best of us and is part and parcel of this horrible illness for many. If it gets too much you might ask for some anti anxiety meds although if you get something like diazepam, take with caution, you don’t want to get hooked. Are you UK based by any chance? The sooner they get metronidazole off the NICE guidelines and many docs re-educate themselves, the better!

Wishing you the best.

[SJW2903]

Thank you Beth for your reply and helpful info. I will ask about the medication you mentioned. Really appreciate your response.

[roy]

I can see that your in UK.
Metro is no longer recomended as a c.diff treatment, it works for some but it's not the best.
If you do need treating again then vanco is better.
Slightly concerning is that your Dr chose to test for c.diff when you did not have "classic" symptoms.
They are not supposed to do that because c.diff can be part of normal gut flora and testing without D can result in overtreating.
Slightly more concerning is your Drs statement saying a low level of toxins because theres no test to detect levels!
It's a positive or negative result and nothing in between!
Your Dr might not be diagnosing correctly and just be looking at results.
Insist on being seen by a specialist because GPs have little experiance with treating c.diff.
Regardless of all that your only a couple of weeks on from taking Metro and that's like setting off a nuclear bomb to cure a mouse infestation.
It does a number on all your gut flora and can take ages to recover.
Theres a gut bug war going on inside you and hopefully the good ones win.
If your symptoms continue for longer than a few weeks but theres no D then dont be afraid of getting a colonoscopy but ask for a specialist referral first.
Treat the symptoms not the test result and this close to treatment your symptoms indicate your probably recovering.

[SJW2903]

Thank you so much GtrGrl, yes, I am in the uk.

Thank you Roy, very helpful. I will ask for specialist referral and hope things settle.

[SJW2903]

Roy, would you mind me asking, do you think it would be a gastroenterologist or a consultant microbiologist I should be referred to? There don’t seem to be many specialists dealing with c diff in the uk. I have found Professor Mark Wilcox at Leeds but I am in a different trust so don’t think I would be able to see him. I just want to get the best care possible but it’s so frustrating trying to find that. Do you really think there is a still a chance of me recovering without the Vanco? I think it’s the blood and inflammation that is causing the referral for the colonoscopy as they are concerned about IBD or bowel cancer so it’s like I’m trying to deal with two things at once which is confusing.

Thank you so much.

[roy]

If you can get in to see Prof Willcox or someone from his team you will be in good hands.
Probably the best will be a gastro to start with but dont rush headlong into tests and treatments.
If its c.diff it sounds like a mild case and well on the way to recovery.
What you read about c.diff is scarey and is mostly worst case scenarios BUT for most people it's just another gut bug.
Inconvenient for a while but not too serious.
Obviously if blood continues the colonoscopy should be done to rule out other nasties.

[SJW2903]

Thank you Roy. I will speak to my GP again tomorrow. He has spoken to the Lead Microbiologist who said toxins detected and vanco could be used to treat but to wait and allow things to settle as positive result not unexpected. My concern is that I have ongoing pain and cramping and I am worried that just because I don’t have rampant D doesn’t mean damage isn’t occurring due to the c diff. Do you think I am worrying unnecessarily? Thank you again and sorry for asking so many questions.

[GtrGrl]

How are you doing, Sally?