No such thing as a 'normal' recovery - 11 weeks post

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
speg
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No such thing as a 'normal' recovery - 11 weeks post

Postby speg » Sun Dec 29, 2019 6:23 pm

Well I'm 11 weeks since my last Vancomycin dose and it's been a unique (and some times miserable) experience. I hope I'm not too preemptive in saying that my doctor now considers me "clinically cured". One thing I can say is this disease has left a lasting impact in the form of health care anxiety, budgeting for bleach & probiotics, and now the joy of hemhorroids/fissure that I didn't even manage to have post delivery of my baby. While the cdiff may be in remission, my body is still reeling.

So thankful for everyone who has helped me stop and think about the trauma my body went through in the past 4 months (and the 7 months before that while pregnant) and the reminders that this is a new normal, to be patient with myself and the healing process of my body. There truly is no normal in or after the recovery of cdiff. it has changed so much about my gut/life/future medical decisions. Here's wishing anyone else struggling through this continued progress and good health.

beth22
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Re: No such thing as a 'normal' recovery - 11 weeks post

Postby beth22 » Sun Dec 29, 2019 10:50 pm

I'm glad that you are doing better and hopefully this coming year will bring you good health and the leftover symptoms will subside over time.

speg
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Re: No such thing as a 'normal' recovery - 11 weeks post

Postby speg » Fri Feb 07, 2020 7:04 pm

Another 5 weeks and more slow clearing of symptoms. Other than continuing to get sick every single time we go visit friends/family (I'm guessing I've got the immune system of either a baby or a geriatric at this point) all has been a steady incline. We did find out that my son has a protein allergy to milk and possibly soy/gluten. So I have done yet another rehauling of my diet -- and honestly it may actually have helped lingering symptoms and/or inflammation. I do miss a slice of pizza and cheesey alfrado pasta.

BRITTNEY
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Re: No such thing as a 'normal' recovery - 11 weeks post

Postby BRITTNEY » Mon Feb 10, 2020 2:20 am

Hello, I'm new the group. I have been batting C diff for 3 months now. I'm 37-year-old female with no past medical issues. I have relapsed 3 times on between Vanco and Flagyl. I started having symptoms in November, which were somewhat mild. My cdiff test came out negative back then. and was given flagyl and cipro, they thought it was a bacterial infection. I do believe it was CDIFF the whole time. My symptoms were the same. Lots of Diarrhea several times a day, I have been taking florastor and other probiotics to try to help this. I'm waiting on getting Dificid, My DR thinks that I could be just shedding, even though my diarrhea returned, and I have a positive CDIFF test. Right now, I'm taking Cloyestramine and that seems to be helping the diarrhea I don't think this is a cure, but I'm not having any diarrhea for the last few days. I'm wondering has anyone been prescribed Choylestramine for Cdiff? and has anyone experiences shedding? I'm so confused and I feel that I have not been taking very serious hence the miss diagnoses and took so long for Dr.to find this. I feel that my age and that I'm a healthy has not gotten the attention that I needed. Any feedback would be greatly appreciated.

Thank you,

Brittney

speg
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Re: No such thing as a 'normal' recovery - 11 weeks post

Postby speg » Sat Mar 28, 2020 9:17 pm

Another 7 weeks post Cdiff treatment. I am happy to say that all my GI symptoms have cleared (although I will say that #2's are not at all like they were pre-cdiff, but they are consistent and if a poo can be so -- pleasant). I have gained back 5 lbs, and honestly very happy at this weight so am gonna try to maintain this!

A few odd things have popped up though. I had 0 skin conditions prior to cdiff or treatment or pregnancy and now I have small spots of what appear to be psoraisis near elbows/knees. This is worrisome for me as my mother had very very severe psoriatic disease. My son also is showing signs of skin issues and food allergies and I wonder if somehow they are linked to my poor gut health, my use of antibiotics having poor gut health, or his multiple exposures to antibiotics via me and in the NICU. He seems to be allergic to so many foods we try and has never been 100% clear despite massive changes in my diet (elimination of top 8 food allergens, temporary elimination of beef and gluten). So hard to tell since testing is inaccurate at this stage. I can't help but think that my Cdiff played a role in his ongoing digestive/growth/allergies. Ah the mom guilt.

Mmp
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Re: No such thing as a 'normal' recovery - 11 weeks post

Postby Mmp » Thu Apr 02, 2020 4:35 pm

I also had c diff 8 months pregnant. I was on many antibiotics throughout my pregnancy. I relapsed twice after he was born and was put on vanco. My son has had terrible skin rashes. I too eliminated many allergic foods. He is mainly allergic to eggs. He is 8 months and I'm scared to have him try new foods. I too feel guilty I did this to him. I give him probiotics too and that seems to help.

Mmp
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Re: No such thing as a 'normal' recovery - 11 weeks post

Postby Mmp » Thu Apr 02, 2020 4:44 pm

I also had c diff 8 months pregnant. I was on many antibiotics throughout my pregnancy. I relapsed twice after he was born and was put on vanco. My son has had terrible skin rashes. I too eliminated many allergic foods. He is mainly allergic to eggs. He is 8 months and I'm scared to have him try new foods. I too feel guilty I did this to him. I give him probiotics too and that seems to help.

speg
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9 months post vanco and feelin' good

Postby speg » Sat Aug 01, 2020 11:05 pm

I'm sorry to hear that you had to go through all this while pregnant/postpartum. These are already stressful times for women! Due to the covid pandemic my son's allergy testing was officially canceled and we are to reschedule when things settle down (mainly because we have no one local to do testing and will have to travel to a much larger hospital - we couldn't see any sense in putting ourselves at further risk).

On a positive note I have been very regular, no dietary restrictions (raw veggies still sorta move through pretty fast and a lot like they went in and I found I have a sensitivity to erithrytol - a sugar alcohol I used to help control my gestational diabetes cookie cravings with- I can't tolerate it at all n ow makes me sick as a dog). I have maintained my weight loss, which was much needed to help prevent future risks of diabetes/heart disease that were likely headed my way. I have not had the need for any antibiotics and as a mom things are coming into focus a lot more clearly (with some extra sleep finally). I am not scared to try new foods with my son, some bother him, some don't -- none have been fatal. I went through a spell where I was worried, but he is a very adventurous eater and likes to try new things. We just watch him very close after new things and deal with the skin rashes as they come. Thankfully they've gotten milder, we no longer use the perscribed mild steroid creams our derm gave us.

While I have no proof, I do believe that vancomycin got into my blood stream during treatment and thus into my breast milk, as I did have very mild (but itchy red) rashes on my chest and neck that I thought were just a mild reaction to the antibiotic. I have notoriously not good reactions to every antibiotic I've ever taken and am allergic to penicillin. I now believe it may have been a type of red man syndrome which is pretty rare on oral vanco, perhaps the only "unless" with oral vanco and red man syndrome is "if you have severely compromised gut due to cdiff infection"... the weeks of blood and pus post treatment suggest I may have had a more severe infection than we considered. I was told vanco was relatively safe while breastfeeding and to continue, but now wish I had been more open to formula so I could have let it clear my system. My poor guy was not only fed it via breast, but also for weeks after in expressed frozen milk too. I'm at a complete loss for how little the medical community knows about safely treating this in postpartum women, since it would appear that the infection in on the rise in NICU's and labor and delivery among women of all health/age classes.

speg
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1 yr. post infection

Postby speg » Sat Oct 10, 2020 11:36 am

I'm a few days shy of my 1 year mark post infection. My GI issues have morphed to include bouts of severe constipation and loose fluffy stools I hadn't experienced precdiff. I also had a sudden onset of arthritis like symptoms, I feel certain they are somehow tied to the cdiff infection, but because I am postpartum and have a long family history of autoimmune diseases the diagnosing process has been difficult. I am glad to say that despite all of this my son is doing much better. He has very few reactions to foods any more and his skin is beautiful and clear! Kids are resilient for sure. Otherwise I'm doing well with no serious issues and as far as we can tell no return of cdiff since immediately after my Vanc. treatment.

speg
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2 years almost -- and it's okay

Postby speg » Fri Jun 18, 2021 12:09 pm

It's been almost 2 years since I contracted Cdiff during a stay in the NICU while giving birth to my son. I'm happy to say that an infection with cdiff has not recurred since my last Vanco (and what we think was a very mild relapse that I chose not to treat with more antibiotics). I am glad to this day that I did not pursue further antibiotics and gave myself weeks and weeks of recovery and healing instead. I am here to say it can/does get better with time. My new normal unfortuantely still includes hemhorrids/fissures (guess I'm stuck with these and try to manage the symptoms with OTC's, fiber pills/fiber rich diet, and staying well hydrated) and I'm guessing my unusual bouts of constipation followed by you guessed it loose stools is probably the culprit. My gut is adjusting and I eat what I want pretty much w/out issue - at least I haven't tied eating with any particularly bad side effects. I have kept off all but the 5 of the pounds I lost during my infection and it has made a huge difference in my overall health. So if there is a silver lining I think that's a pretty decent one.

My son was diagnosed with an inflammatory skin condition that has no known triggers (go figure) and possibly one that is genetic (so just his bad luck one of us is a carrier). That being said it is mild for him and manageable. He has no dietary restrictions and as assessed by an allergist has no known allergic reactions! Otherwise he's healthy and pretty much caught up with his peers despite his prematurity.


If a story that starts with Cdiff can end as well as it has for us, then I count us supremely lucky.

Bobbie
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Re: No such thing as a 'normal' recovery - 11 weeks post

Postby Bobbie » Sun Jun 20, 2021 8:25 pm

Congrats. Thx for letting others know the happy ending to your story.

Ali-Mar
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Re: No such thing as a 'normal' recovery - 11 weeks post

Postby Ali-Mar » Sun Jun 20, 2021 11:37 pm

Speg, thanks for sharing, it is good to know that there is a light at the end of the tunnel. I had an FMT 11 months ago and I am still on a low FODMAP diet due to IBS issue... looking forward to a day that I can eat fruits and everything else again
Male 54, contracted C-Diff on Feb 5, 2020, diagnosed on March 2nd, Took Flagyl for 8 days, Vanco for 10 days, relapsed 5 weeks post-Vanco. finished Dificid Taper on June 20 relapsed two weeks later, had the FMT on July 14th, 2020


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