Post-infectious IBS after C-Diff

[Whiplash]

Hi everyone,

I'm 34 years old, female.  Six months ago I was diagnosed with c-diff after having taken clindamycin.  I was prescribed a vancomycin taper regimen, which I completed 4 months ago, to treat the c-diff.  Since then I have been struggling with IBS.  I had a flexible sigmoidoscopy done to rule out other causes of my symptoms.  My gastroenterologist concluded that I have post-infectious IBS.  

I'm going to go into some detail about my symptoms, I hope it's not TMI.  Before I got sick, I would have 1 or 2 bowel movements daily.  Now, I'm very, very lucky if I have 3 or 4.  Most days I go at least 5-7 times, sometimes 10+.  It usually starts off formed and then becomes looser.  I wake up between 5 and 6 in the morning with a "morning rush" and have to go to the toilet multiple times.  Some days it's all solid, sometimes it's diarrhea.  I also have tenesmus very often, which is extremely distressing for me and often results in me straining, which causes my internal hemorrhoids to flare up and bleed.  I pass blood and mucus fairly often, sometimes blood and mucus only, which my doctor said is caused by the hemorrhoids (as seen during the sigmoidoscopy).  The constant urge to go makes me afraid to leave the house.

I'm extremely anxious and terrified of a c-diff relapse.  Anytime I have diarrhea I end up panicking and in tears.  My doctor wants me to try an anxiety medication, but I'm wary of the idea because I have a 4-year-old son to take care of, and I don't know how the medication will affect me.  I have a history of depression and anxiety, both of which have worsened considerably after I got sick.  He also suggested I take half an Imodium for some relief.  I bought it but am frankly afraid to try it.  I'm afraid of everything these days.  He told me to eat as much as I can of "normal" foods, and I try to do that.  I eat mostly bland foods but do try to introduce new foods often.  Sometimes I can eat pizza with no problem.  Other times I have explosive diarrhea after eating something like oatmeal.  

Before the c-diff I was 110 pounds (at 4'11), but now I'm under 90 pounds.  I don't know how I will gain the weight back.  Mostly right now I just want to be able to sleep through the night.  I wake up every single hour, anxious, heart pounding.  I have abdominal pain very often, with a lot of rumbling and gurgling noises.  I feel uncomfortably full after eating, so I do try to eat smaller meals more often, and I try to eat slower and chew thoroughly.  Eating too fast is a diarrhea trigger for me, as is stress and anxiety.  My symptoms usually worsen prior to my period, but not always.  

Does anyone here have experience with post-infectious IBS?  If you have any insight to share, I'd appreciate it.  Thank you for reading.  

[Whiplash]

Some additional information - my husband lost his job a few weeks ago, and now we don't have health insurance.  Between that and covid, getting mental health treatment for myself is going to be nearly impossible.  My husband also has Crohn's disease and had emergency surgery for perianal abscess a few months ago, with a lot of complications.  It has been an extremely stressful and horrible year for us.  

[Jeffrey Roberts]

Dear Whiplash,

I'm so sorry to read what you have been through. I had an overgrowth of C. Difficile many years ago so I understand what you are going through. It is very stressful to know if the C-diff has returned. I can assure you that you will get past this. I did.

I actually think that it is a good recommendation for you to try an anxiety medication. With the right one it might also help with lessening the diarrhea episodes by forming a more solid stool. I take a low dose of amitriptyline, but there are newer medications with less side effects.

The other think that I think you will benefit from is trying some cholestyramine (Questran). It is a powder that you mix with liquid and drink daily. It is a bile-acid sequestrant that binds with your bile. That might be responsible for some of your diarrhea. It may in fact make you constipated so you have to play with the amount you take to find a tolerable amount. Your doctor can prescribe this. Maybe if you just call in and ask to try this it will not count as a medical visit.

I know you can get through this.

[Whiplash]

Thank you for your reply Jeffrey, it was helpful and encouraging.  Thank you for suggesting Questran, I do have a telehealth appointment with my gastroenterologist in a couple weeks, so I'll ask about it then.  I would also like to try an anxiety med, but I need to talk to my PCP for that.  

I'm taking things one day at a time, doing my best to reduce my anxiety.  I take walks, watch a lot of Netflix, and try to take naps as much as I can, and I'm working on some deep breathing exercises as well.  Yesterday I had a decent day, I had more energy than usual.  I'm very grateful when I have a good day.

[Whiplash]

Just back to update - my gastroenterologist prescribed nortriptylene for me, 10mg.  I didn't start it yet, I'm supposed to take it before bed.  I keep having a lot of distressing symptoms, pain, tenesmus, diarrhea.  I continue to lose weight.  The last week was very rough with anxiety and pain.  I'm extremely depressed and find it very hard to eat and take care of myself.

[Esjie]

I am sorry you are feeling so horrible Whiplash.

The Nortriptylene may help with your pain possibly. I hope so. One of the side effects is hat it can cause some constipation, so that might help your diarrhea symptoms. It's worth giving it a try. 10mg is low-dose.

I wish you well and hope things start to improve a little bit for you.

[Whiplash]

Thanks Esjie.  I actually haven't started the nortriptyline yet, I've been hanging on without it.  Some days have been better than others.  Yesterday and today I seem to be having a bad flare-up, I woke up at 5 this morning and had loose stools a few times, with mucus (common for me), and tenesmus and a lot of rumbling and churning all day.  I had 6 BMs so far today.  This constant urge to go is really getting me down.  I still haven't been able to gain weight, I'm 85 pounds right now.  

[Whiplash]

I'm struggling today.  On Wednesday I actually felt better and had only 3 BMs.  Then yesterday I had 9 and today 7, so far.  Last night for dinner I had plain pasta and chicken, followed by yogurt and almonds for a snack.  This morning I had some normal BMs, but then in the afternoon I had some sudden urges and cramping with loose BMs.  Not quite diarrhea, but loose, and a lot of it.  I'm hungry now but afraid to eat.  I'm afraid of losing even more weight.

I keep being in fear of c.diff even though it's been 5 months since I completed my treatment for that.  All of the unexpected bouts of diarrhea and frequency of BMs makes me so anxious and afraid.  Recovery has been so rough.  One day a food seems fine and doesn't bother me, and the next it causes problems, it's so hard to tell what will happen.

[Healing]

Hi Whiplash - I know this is years later but you sound identical to me. How are you today? I came across these posts and it describes my current life to a T. Let me know how you are. 

[Joleen]

Hello,

This sounds like my situation as well. I had cdiff a year ago. I had it for almost 8 months undiagnosed and it has destroyed my stomach and gut. I have the same symptoms, scared to eat and the most plain and simple food triggers episodes of nausea, vomitting or diahhrea. Multiple camping and summer plans have been ruined and I can't even be in the car for 45 minutes without needing to plan where I can go to the washroom.

 

I do have to say Bio K probiotics daily and PC organics Kefir has helped and made a big difference. From the first few weeks.

 

I have a lot of problems eating veggies which worries me as My vitamin levels are low despite taking multivitamins. I only eat some turnip, potatoe, carrots. I make sure they are fully cooked.

 

It feels like even eating anything just starts almost like a sudden immune response.

 

I have been working with a dietician and she recommended for me to start the low fodmap diet for 6 weeks to recognize triggers but I can't even tolerate half the foods on the list! She also told me to try taking Metamucil fibre but um scared to try it as I have to work.

 

I feel so depressed and anxious, I avoid using public bathrooms and I have a UTI now and I am avoiding antibiotics at all cost to not get cdiff again. I have so much fear of spores or reinfecting. I have nightmares about it. There was 3 days when I had cdiff where I thought I was going to die. I had worse than food poisoning symptoms for 2 months day and night and couldn't even find strength to stand most days. I feel like it traumatized me. I was in the hospital 7 times and only had my husband at the end of the day to help me after work as my family lives in Germany. I spent so many days on the bathroom floor with nothing left. I feel like it has made it so hard to live a semi normal life since experiencing it. The daily health issues are just a constant reminder of that experience and a reminder that I should be fearful and do all I can to avoid this from happening again.

 

I hope it gets easier, I haven't really heard of any successful lives after cdiff.

[Jeffrey Roberts]

Dear Joleen,

I really sympathize with your situation.  CDiff is real awful. The fear about getting it again or the spores re-populating your gut give you a constant feeling of dread.

If you have a UTI, you might ask your doctor if this antibiotic is okay - fosfomycin (Monurol). My daughter also got a UTI after FMT for CDiff and the infectious disease doctors prescribed it. It really targets the bladder so hopefully it won't disrupt your gut. It didn't for my daughter and it cleared her UTI.

As for the PI-IBS, metamucil is recommended to help with the D, but that is rather scary. You might look into cholestyramine, a bile acid sequestrant, or ondansetron to slow down the diarrhea and give you more confidence.