New to C Diff, looking for support

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81Datsun
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New to C Diff, looking for support

Postby 81Datsun » Tue Apr 19, 2022 9:38 pm

I hope this is the appropriate section to post a 'new member' introduction to. I am mostly looking for support and positivity as this is my first time with C diff, and fingers crossed the last but as I have been reading, this is a tricky infection to eliminate.

I am a 32 year old Male, will be 33 in July. I was diagnosed with Crohn's disease when I was 10. In the 22-23 years I have had Crohn's disease I have never had C Diff, which is probably very lucky as one of my early Crohn's treatments was a long term Flagyl course. I have been fortunate in that all of my intestines are still intact.

Last year (2021) I had my first 'major' complication of Crohn's disease when I developed a perianal abscess which was internal (did not breach the skin). This quickly lead to the development of a perianal/intersphincteral fistula. Before we knew for sure what I had, my GI doctor referred me to a colorectal surgeon. This surgeon requested a pelvic MRI to confirm the presence of an abscess/fistula and where it was. In the meantime, he prescribed me a 14 day course of Cipro and Flagyl. This was at the end of June, beginning of July.

Within 2 days I ended up with antibiotic associated D, the doctor took me off the Cipro but kept me on the Flagyl. I was told the reason for the cipro and flagyl was not to treat the abscess (once it's formed, antibiotics won't make it go away), but to 'clean my blood' and make sure I didn't end up with sepsis, fair enough. The nausea I dealt with was so bad that most days I could barely eat saltine crackers. I lost about 20 lbs in those 14 days. I had my Pelvic MRI 2 days after the last dose of Flagyl. Bowel movements went back to more or less normal over the coming days/weeks.

I did have the good sense to take a RenewLife brand probiotic while I was on the antibiotics and continued it for 1-2 months after stopping the antibiotics.

The MRI confirmed the presence of the abscess and the fistula and I ended up having surgery (under general anesthesia) on July 31, 2021 to drain the abscess and put a draining seton in to 'treat' the fistula. I went home same day as the surgery. Within the next 2 weeks my GI doctor switched my primary Crohn's medication from Entivyo to Stelara (both are biologics). I was surprised that the GI doctor didn't put me on another round of antibiotics following the surgery.

One of the primary non-colonoscopy methods of tracking Crohn's severity is lab tests, and there are 2 in particular that my doctor uses: C Reactive Protein (blood test) and Stool Calprotectin (stool sample test). In February of 2021, my Calprotectin levels were at 2600 counts (for reference, a normal healthy person should have calprotectin levels in the single digits, but it is not unusual for IBD patients to have counts in the 100s or 1000s). We also tested the C Reactive Protein and it was at 11 counts (elevated and outside of standard/normal range).

We retested the Calprotectin levels in December of 2021 after I had been on Stelara for ~5-6 months and the Calprotectin dropped to 344 counts, a huge improvement and I was generally feeling better. However, Crohn's recovery is a very slow process. This whole time I was not having any issues with D. I would still have between 3 and 4 trips to the bathroom a day, but that's not unusual for IBD either. Movements were formed, no indications of C Diff and at that point

I had a follow-up Pelvic MRI on March 9th which came back clean, no new/undrained abscesses and no new fistulas, some good news in my life. The MRI was performed at a local imaging center, not a hospital. Sometime during the week of March 21-25th, I noticed that I was having very watery D every time I went to the bathroom. I also had some mild gut discomfort, but both of those things are also potential Crohn's symptoms and I didn't worry too much about it. On Friday, March 25th I had another round of follow-up Crohn's lab work, including C Reactive Protein and Stool Calprotectin. By the next week (March 28 - April 1) I wasn't having any changes in my bowel movements, still watery D all day, but trips to the bathroom were averaging 5 a day, again, nothing unheard of for Crohn's. Abdominal pain was mild. On March 30th I ended up with chills a fever of 101.2 by the end of the night, which I thought was odd because I didn't feel sick. My temperature was down to 97.2 the next morning but by mid-day was up to 100, so I scheduled a COVID and Flu test at my local CVS and got that done ('lab' test not rapid test). By bedtime my fever was 101 again, but no chills and otherwise not feeling sick. Friday I got the test results, negative for COVID and flu, and my temperature peaked at around 99, slightly elevated but not bad. I have not had a fever since.

Sometime during that same week I got the results back from the C Reactive and the Calprotectin. The C Reactive was up to 22 counts and the Calprotectin was now just over 4000 counts. So basically, these two tests indicated significant inflammation, which I thought was odd because I felt decent overall. I had a phone appointment with my GI doctor on April 5th and he wanted me to get an MRI enterography done to see where the inflammation was and how severe. He did admit that with Crohn's it is possible to have moderate to severe inflammation and feel overall 'fine'.

On April 6th I had a routine appointment with my colorectal surgeon, and it was on my way to that appointment that I remembered reading about C Diff back when I was on the Cipro/Flagyl last year. I asked the doctor about it and he thought the chances of me having C Diff (based on how I thought I felt) were low, but I asked him to order me a c diff test anyway. I took the sample over the weekend and dropped it off at Quest Labs on Monday, April 11. The next day we had results: C Diff Toxins DETECTED.

Ok, so now we know why I'm having the watery D and this would explain why my inflammation test markers were so high after being much lower in December. My colorectal surgeon prescribed me Vancomycin the same day (April 12th) and I started it that night with the first 2 doses. He prescribed the standard 10-day course of 125mg, 4 times a day. I also started doing a lot of reading about C diff at this point.

This being the internet, it's easy to find and read a lot of really bad stories about people dealing with C Diff, but I was trying to find information on what I could be doing in addition to the antibiotics to help with recovery. The probiotic S. Boulardii (Florastor) came up in a lot of my reading, so I got permission from the colorectal surgeon, my GI doctor and my primary care to try taking it. I did however read about people taking Florastor with also having Crohn's and most people take a cautious approach with it, so I've only been taking 2 pills a day, 1 in the morning and 1 in the evening instead of the 'full strength, recommended dose' of 2 pills in the morning and 2 in the evening.

I'm now at April 19th, and will wrap up the Vancomycin on April 22nd (last 2 doses). So far I haven't noticed any changes to my condition. I also haven't noticed my condition getting any worse (except for some weight loss, which I was expecting at this point).

So far my only symptoms have been watery D every trip and some mild gut discomfort that comes and goes throughout the day. Gut discomfort seems to be more pronounced when I have a lot of gas moving through my system, which has been happening a bit more the last ~2 days. I have noticed a little fresh red blood here and there, but I do still have an active fistula and I know I have 1 or 2 active fissures as a result of skin irritation from fistula drainage, and the blood is minimal and not even every time I go to the bathroom. Ironically, I think the D has been 'helpful' in allowing the fissures to heal without the rectal area getting stretched.

I have not noticed any of the following over the last 4+ weeks:
No Fever
No severe gut cramps/pains
No indications of sepsis
Edit - very occasional unpleasant smell, but not strong and not every time I go to the bathroom.

I have had the occasional episode of nausea, which could be attributed to the Vancomycin (nausea was mentioned as a possible common side effect of oral Vanco), but overall I've been tolerating the Vanco pretty well.

As for diet, I put myself on the BRAT diet before we even knew I had C Diff. I mostly eat applesauce (no added sugar), 1 banana a day, white rice (with no added sauces like soy), and I try to include some plain grilled chicken for protein. I also try to have some plain yoghurt daily (1 or 2 servings throughout the day), I also make sure to only get no added sugar yoghurt. I also have been adding some benefiber soluable fiber supplement to both the applesauce and the yoghurt to try and get some additional fiber into my system.

I say all this to give reference and history, but I'm also concerned about this as I do have Crohn's which likely will make my recovery that much more difficult, but I'm hoping this first round of Vanco, combined with probiotics will be enough to put this behind me.

I'm also a chronic worrier, and already take anti-anxiety meds daily, so I'm here looking for support and positivity. I have already read through some of the success stories and I'm glad this forum has a specific section for such posts, it's very encouraging to read about people's recoveries after battling for far longer than I have and with far worse infections.
Last edited by 81Datsun on Wed Apr 20, 2022 1:28 am, edited 2 times in total.

beth22
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Re: New to C Diff, looking for support

Postby beth22 » Wed Apr 20, 2022 12:58 am

Hello 81Datsun and welcome to the site. Sorry for all you have gone through. I am glad that you feel better on the vanco. I, too, got nausea from it. The one thing that is of concern is the Florastor if you are having bleeding because it can go systemic and that is not advisable. I would check with your doctor about that again and see if you might be better off taking only probiotics without yeast. Yogurt never sat well with me when I had c difficile and when I ate it, I got loose stools and D. You might try to stop for a day or two to see if that makes any difference in your stools.

81Datsun
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Re: New to C Diff, looking for support

Postby 81Datsun » Wed Apr 20, 2022 1:19 am

Hello beth22, thank you for the response.

I will stop taking the Florastor tomorrow, and I will stop the yoghurt for a few days and see if things improve.

There are a couple additional details that I forgot to put in my original post.

Regarding symptoms I am not having, I have not noticed any significant bad or unique smell during bathroom trips. Occasionally I catch a whiff of something but it's not strong and not often, certainly not everytime I go.

Also, I live with my wife who is healthy (no existing conditions) and so far is not showing any signs of c diff.

beth22
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Re: New to C Diff, looking for support

Postby beth22 » Wed Apr 20, 2022 1:28 am

My husband never got c diff from me and I had many relapses and we share the same bathroom. Just make sure to wash hands well and clean the toilet with something that has bleach in it. Not everyone has the c diff "smell". Also, vancomycin gives some people looser stools. Everyone is different and your case is complicated by the Crohn's. After you are off the vanco you will see how things go and hopefully you will start to heal.

GtrGrl
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Re: New to C Diff, looking for support

Postby GtrGrl » Tue May 03, 2022 8:54 am

Nothing profound to add, just to say I totally understand the worrying. You can’t know how it’s going to go but it sounds like you’re doing the right things to have best chance of recovery. One tip: don’t touch alcohol for a long time. I dared to have a tiny glass of red wine a couple of weeks later and relapsed shortly after. Maybe it wasn’t that but it’s not worth the risk. I wish you luck.
Contracted C Diff from a round of Flucloxacillin, November 2020.

Metronidazole - Metronidazole - Dificid - Dificid - Vancomycin - Upper GI FMT - Vancomycin - Vancomycin - Lower GI FMT

81Datsun
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Re: New to C Diff, looking for support

Postby 81Datsun » Tue May 03, 2022 12:10 pm

Hello GtrGrl,

Thank you for the advice about the alcohol. Perhaps rather fortunately there, I stopped consuming alcohol entirely about 10 years ago due to the Crohn's disease, I figured it just wasn't worth consuming and mixing with the Crohn's meds.

As an update to my situation, I finished the Vancomycin 10-day treatment, but even a week afterwards I was still having loose bowel movements. I have been keeping my GI doctor informed on the situation, and he had told me that if the Vanco didn't work, the next thing we would do would be either FMT or IV antibody therapy. I was actually excited about the prospect of an FMT because I've read that it's one of the most effective treatments for C Diff, plus I figured it would also help treat the Crohn's.

But then my GI doctor back tracked and instead put me on Cholestyramine for 30 days. From what I understand, it has been shown to help bind the C Diff toxins and flush them from your body during bowel movements, as well as help bowel movements to form. It sounds to me like a band-aid treatment that doesn't address the root issue. So I'm rather annoyed that my GI doc initially suggested one of the most effective treatments but then didn't follow-through. I'm now 3 days into the 30-day Cholestyramine treatment, so far I'm having mixed results during bathroom visits.

What I would say is that overall I don't think my condition has become any worse, it's still really just a loose movement issue. Still no fever, no severe gut cramps/pains, no indications of sepsis. I just wish my GI doc had followed through on the FMT so we could treat this and move back to treating my Crohn's.

GtrGrl
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Re: New to C Diff, looking for support

Postby GtrGrl » Tue May 03, 2022 2:07 pm

Ahh yes, that is frustrating. I had an FMT and it fixed not only the C Diff but also many other issues - then sadly I then got another infection and am really unwell again. Stupid immune system!

Could you ask why they changed their mind? If you do still have C Diff it’s only a matter of time before the band-aid breaks. But also having loose stool after antibiotic treatment isn’t unusual and not having all the other symptoms suggests perhaps the Vanco did its job…

beth22
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Re: New to C Diff, looking for support

Postby beth22 » Tue May 03, 2022 9:21 pm

Now with Covid it is hard to find someone who does FMT. That might be the reason. But, I agree it is a good treatment and the one that worked for me to get rid of the c difficile.

81Datsun
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Re: New to C Diff, looking for support

Postby 81Datsun » Mon Aug 08, 2022 4:07 pm

Thought it would be good to post another update.

Since the last time I posted, I finished the 30-days of Cholestyramine that my GI doctor put me on (without also putting me on antibiotics concurrent). As I expected, it didn't help at all.

In mid-June (so about 2 months after finishing the initial Vanco antibiotics) my Primary care re-tested me to C Diff toxins and they were still found/present. I asked my primary care to refer me to an infectious disease doctor and she did.

The ID doc put me on 10-days of Dificid. This I think helped some, I noticed my bowel movements starting to trend more towards formed (or at least not watery) during the first ~1-1/2 weeks after finishing the Dificid. Then my bowel movements became inconsistent, sometimes somewhat formed, other times watery.

I monitored this for at least 2 weeks after finishing the Dificid and then contacted my ID doctor and she prescribed a tapering dose of Vancomycin. This is now my 3rd round of antibiotics. Starting at 250mg 4 times a day for 14 days, then 250 twice a day for 7 days and finishing with 250 once per day for 7 days. At the same time, she has me taking Cholestyramine once per day. At time of typing this update I'm on my 14th day of the high dose, tomorrow I will start week 3 and the mid-level dose.

I'm not really noticing any improvements at all in my bowel movements, but perhaps I shouldn't be while I'm still taking antibiotics? Typically they are very loose, sometimes watery. I have also lost a lot of weight. My nutritionist weighed me at 127 lbs about 3 weeks ago, so I'm basically trying to eat anything I feel like I can eat to get any calories (and especially protein) I can get. I'm also drinking Boost to supplement the nutrition deficiencies.

My ID doctor seems to have an aversion to FMT. What she told me the first time I met her was that, in her clinical experience, FMT is "only about 70% effective" and that she has patients that have had 2 FMT treatments and still are having C Diff problems. I really hope she isn't going to be solely reliant on antibiotics though. If this 3rd round of antibiotics doesn't work, I will really try to push her to seriously consider an FMT.

Overall, I'm pretty miserable to be honest. Most days I just don't have any energy, and my mental condition is very poor. I've had several days in the last 2 weeks where I feel certain that this infection is going to kill me, which is not a comforting thought as I do not want to die. I'm only 33 (as of July 6) and while I realize that death does not recognize age, I still have things I want to live for.

I'm just loosing hope and have generally lost the will to continue fighting most days. Between 23 years of Crohn's disease and now this, I've just been beaten down it feels like.

Normally what I would do when I feel like this is try to do some internet research about positive stories of people beating something like this. However, even if you try to google search for C Diff and good news, 99% of what comes back is horror stories and frightening statistics, which just further damage my morale and mental condition. I need to find something that will give me the confidence that I can beat this and live to put this behind me.

roy
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Re: New to C Diff, looking for support

Postby roy » Mon Aug 08, 2022 5:38 pm

Might be best to ask if it's wise to take Cholestyramine and vanco.
Cholestyramine does not cure c. Diff but it does bind the toxin so that it passes out without causing damage.
The problem is that Cholestyramine also binds the vanco and stops it working.
Your Dr should know that!
It must be difficult to judge if it's the long term crones or an overgrowth of C. Diff causing your stomach problems.
Are the symptoms far different from your normal?

beth22
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Re: New to C Diff, looking for support

Postby beth22 » Tue Aug 09, 2022 12:43 am

We had a poster here some years ago who had Crohns and then got c difficile. She was not helped much by antibiotics and kept relapsing. This was before Dificid came out. Anyway, she finally got a FMT and guess what? Not only did her c difficle go away, but she had no more problems with Crohns. Last I heard from her she married and went on with a normal life. I'm not saying this will work for everyone, but it did for her. She was younger than you, I believe early 20s. I would definitely explore the FMT option if you have no success with what you are doing, but give this a shot. Roy is right about the cholestyramine binding up the vanco as well. Best not to take it while on medication, but bring it up with your doctor.

GtrGrl
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Re: New to C Diff, looking for support

Postby GtrGrl » Tue Aug 09, 2022 5:58 am

Also if you’re looking for some positivity, you could look at the Success Stories section of the board. I remember fully believing I would never, ever get rid of it; I’m sure many of us here understand your despair.

Do you have the option to find a different doc, one who knows more about FMT (success rate is certainly higher than 70%!)? And as Beth says, it can bring multiple benefits to gut and therefore over all health.

notheidi
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Re: New to C Diff, looking for support

Postby notheidi » Tue Aug 09, 2022 8:47 pm

81Datsun wrote:

> My ID doctor seems to have an aversion to FMT. What she told me the first
> time I met her was that, in her clinical experience, FMT is "only
> about 70% effective" and that she has patients that have had 2 FMT
> treatments and still are having C Diff problems.
>
> Overall, I'm pretty miserable to be honest. Most days I just don't have any
> energy, and my mental condition is very poor. I've had several days in the
> last 2 weeks where I feel certain that this infection is going to kill me,
> which is not a comforting thought as I do not want to die. I'm only 33 (as
> of July 6) and while I realize that death does not recognize age, I still
> have things I want to live for.
>
> I'm just loosing hope and have generally lost the will to continue fighting
> most days. Between 23 years of Crohn's disease and now this, I've just been
> beaten down it feels like.

Geez, I don't like this ID doctor's attitude. Of course you would want to try everything! 70% at worst, vs ongoing antibiotic problems is nothing to scoff at. I wish that she would be more encouraging to you, she needs to give you some hope.

I understand how exhausting chronic illness is. It's so hard. What helps me is whenever I have thoughts about not being able to go on, I try to remind myself that most of that is probably because my gut has been decimated. There is so much serotonin & neurotransmitters that's supposed to be in the gut! That's why this illness is particularly brutal. It attacks both your body and your mind in a direct way. There is a very real, physiological reason why you're having these thoughts and feeling this way. There's probably also an emotional only reason, but the physiological plus the emotional together is a real kicker! Hang in there.
2010 mod/sev w/leukocytosis, cefdenir-sinus inf, metro rx'd wrong, resurged during tx. recovered w/dose change, lost 40 lbs. 2015 mod recur fr SNF, no abx, resolved w/vanco. 7/2022 mod recur, community acq, no abx, intermittent prodrome but didn't realize

81Datsun
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Re: New to C Diff, looking for support

Postby 81Datsun » Fri Aug 12, 2022 8:58 pm

Hello everyone and thank you for your responses. I'm sorry I didn't reply back sooner.

[quote="roy"]
Might be best to ask if it's wise to take Cholestyramine and vanco.
Cholestyramine does not cure c. Diff but it does bind the toxin so that it passes out without causing damage.
The problem is that Cholestyramine also binds the vanco and stops it working.
Your Dr should know that!
It must be difficult to judge if it's the long term crones or an overgrowth of C. Diff causing your stomach problems.
Are the symptoms far different from your normal?
[/quote]

The doctor, the pharmacist and myself are aware that Cholestyramine can bind to Vanco (as well as any other pill form drugs). This is why I have been following the pharmacist instructions to avoid taking any pill medication 2 hours before and 2 hours after drinking the Cholestyramine. Thankfully, I am only prescribed to drink the Cholest once per day and with the tapering Vanco dose I am doing right now I keep a chart/log of when I took my last dose in relation to when I plan to have my Cholest 'cocktail'.

As for your question if my symptoms are far different from Crohn's, I would say yes. The biggest thing is that in 23 years of having Crohn's it has been extremely rare for Crohn's to give me watery loose bowel movements, and certainly not watery movements that are a continuous problem for multiple days/weeks. This was probably the biggest indicator to me that something else was going on here.


[quote="beth22"]We had a poster here some years ago who had Crohns and then got c difficile. She was not helped much by antibiotics and kept relapsing. This was before Dificid came out. Anyway, she finally got a FMT and guess what? Not only did her c difficle go away, but she had no more problems with Crohns. Last I heard from her she married and went on with a normal life. I'm not saying this will work for everyone, but it did for her. She was younger than you, I believe early 20s. I would definitely explore the FMT option if you have no success with what you are doing, but give this a shot. Roy is right about the cholestyramine binding up the vanco as well. Best not to take it while on medication, but bring it up with your doctor.[/quote]

This right here is why I would think that my GI doctor as well as the ID would be JUMPING at the opportunity to do an FMT for me in the hopes that it would not only help the C Diff but also help the Crohn's.


[quote="GtrGrl"]Also if you’re looking for some positivity, you could look at the Success Stories section of the board. I remember fully believing I would never, ever get rid of it; I’m sure many of us here understand your despair.

Do you have the option to find a different doc, one who knows more about FMT (success rate is certainly higher than 70%!)? And as Beth says, it can bring multiple benefits to gut and therefore over all health.[/quote]

I don't know if there is another ID in my area, that's something I would have to find out from my primary care. If the tapering Vanco doesn't help things, and if my current ID still doesn't want to do FMT, then I plan to ask my primary care about a second opinion ID in the hopes of getting an FMT done.


[quote="notheidi"]81Datsun wrote:
Geez, I don't like this ID doctor's attitude. Of course you would want to try everything! 70% at worst, vs ongoing antibiotic problems is nothing to scoff at. I wish that she would be more encouraging to you, she needs to give you some hope.

I understand how exhausting chronic illness is. It's so hard. What helps me is whenever I have thoughts about not being able to go on, I try to remind myself that most of that is probably because my gut has been decimated. There is so much serotonin & neurotransmitters that's supposed to be in the gut! That's why this illness is particularly brutal. It attacks both your body and your mind in a direct way. There is a very real, physiological reason why you're having these thoughts and feeling this way. There's probably also an emotional only reason, but the physiological plus the emotional together is a real kicker! Hang in there.[/quote]

To be perfectly honest, I don't really care for this ID doctor's attitude either. She seems to become very defensive if I ask her questions about my treatment, but that's just too bad for her because I've never been the kind of patient who will just take their prescriptions without asking questions.

I have been wondering how much of my psychological condition lately is caused by or significantly influenced by the C Diff directly. In 23 years of Crohn's, it was only in the first 2-3 years of the disease did I have mental issues anywhere close to what I'm experiencing now. In general I've learned how to live with Crohn's, and I've also had periods of my life that have been good and the Crohn's was in remission (or at least not as active). I was able to attend college, get a degree, start a career, buy a house and get married. My current mental condition is...brutal.

I appreciate the support you are all giving me, I really do. Nobody in my family has experienced c diff (including my dad, who has UC), so I don't have anyone I can talk to about this. I do know a couple of hospital nurses, but I'm afraid to ask them about this because I know they see the worst cases.

GtrGrl
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Re: New to C Diff, looking for support

Postby GtrGrl » Sat Aug 13, 2022 8:03 am

[quote="81Datsun"] I have been wondering how much of my psychological condition lately is caused by or significantly influenced by the C Diff directly. In 23 years of Crohn's, it was only in the first 2-3 years of the disease did I have mental issues anywhere close to what I'm experiencing now. In general I've learned how to live with Crohn's, and I've also had periods of my life that have been good and the Crohn's was in remission (or at least not as active). I was able to attend college, get a degree, start a career, buy a house and get married. My current mental condition is...brutal.

I appreciate the support you are all giving me, I really do. Nobody in my family has experienced c diff (including my dad, who has UC), so I don't have anyone I can talk to about this. I do know a couple of hospital nurses, but I'm afraid to ask them about this because I know they see the
worst cases.[/quote]

It’s now pretty well established that gut health is linked with our psychology, so you’re right to think the C Diff is likely impacting your mental health. There’s a lot of research being done in this area and treating the gut to improve mood (and other psychological issues) seems likely in the future. It’s largely to do with inflammation. Add to that the stress that C Diff brings with it, plus unhelpful medics etc, it’s no wonder so many sufferers feel like they do. I think (hope) knowing a bit of the science behind it is a little reassuring, although it doesn’t fix anything. Know that it’s not just in your head!


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