Recently Diagnosed Looking for Support and Advice

[TonyG]

Hello,

This is my first post so I apologize if it's way too long or doesn't follow posting protocol.

I was recently diagnosed with C. Diff and would like to share my story, my doctor's plan of action, and to ask if anyone who has been through this can comment on how they recovered and what worked for them to prevent recurrence. I've been reading this forum prior to joining and seen the many different paths this infection can take. Hoping to find someone with similar circumstances to offer a little hope.

I'm 33 years old and began having symptoms about 1-2 months ago. I had never heard of C Diff before so was convinced I had a bug that just needed to pass through my system, put myself on the BRAT diet and waited. Symptoms got worse, impacting my ability to work and interact with family so I went to urgent care, where they gave me a stool sample kit. The staff there failed to submit the C. Diff portion of the test but assured me it was unlikely I would have C Diff and told me to take as much Imodium as needed. Symptoms continued to get worse, I went to a GI specialist a week later, repeated stool test and began prep for a colonoscopy while waiting for test results. Moments before the colonoscopy was to be performed, GI doc ran in stating I was positive for C Diff and called off the colonoscopy. They told me to stop Imodium and prescribed Vanco 125mg. Was on that for a week with no improvement, doc upped dose to 250mg with Florastor and saw improvement after about 4-5 days, and the C Diff Stench began to fade away. Currently on day 14 of Vanco, stools are still loose but much less frequent (4-5 vs 10-15 per day) and GI doc thinks I'm on road to recovery. Prescribed an extra 6 days of Vanco for an extra punch.

Diet has been tough, I've been afraid to add most foods back into my diet as vegetables (fiber) seemed to make things worse at first. Now that symptoms have eased a bit I've slowly started adding foods back in for caloric sake. Seems that turkey and avocados sit particularly well, as well as congee (rice porridge, with chicken added) and I've started adding Orgain nutrition shakes to supplement as well as small amounts of Benefiber to try to get a normal BM (hasn't happened yet). I've lost about 15-20 pounds so far, was already thin to begin with so looking like a skeleton, but energy is returning and I'm finally able to stay off the toilet long enough to get a few hours of sleep.

I'm looking to do everything I possibly can to prevent recurrence and this infection has me shook. I read so many posts about people that have dealt with recurrence and/or the aftermath of C Diff for years, and it terrifies me. My GI doc doesn't seem to think that diet plays an important role in recovery, but that doesn't sit quite right with me so I am currently seeking the help of a registered dietitian. Hopefully my next post is one of success and not relapse. Any support/advice/stories are welcomed and appreciated. Thanks for taking the time to read.

[Ril]

Hello TonyG and welcome to the site. Please read the first thread on rules and information for new members.
I’m sorry you have been dealing with this and for your long road to a correct diagnosis but glad you are getting better now. You apparently have gotten information from posts already. There is also a lot of information in the CDI section of the site.

Most people do well starting out on a bland diet and adding new foods gradually so you can tell what you tolerate. High fiber foods tend to be hardest to tolerate. Salads and raw veggies are irritating to the healing gut, as are (in some people) sweets, fried foods, fiber, dairy and alcohol. Best tolerated tends to be grilled or baked poultry, fish, eggs, potatoes, rice, well cooked veggies, soups, pasta,toast,
etc. If you can’t eat a lot, eat several small meals throughout the day. Stay well hydrated.
You will gain back weight over time.

Best of luck,
Rita

[TonyG]

Thank you Rita, I appreciate the response. I’ve been wondering about adding pasta back into the diet for a caloric boost. Are you aware of any sauces well tolerated? Or do people generally eat it plain? I would think any kind of tomato sauce could be harsh on the gut.

[Ril]

I ate the pasta with a little I can’t believe it’s not butter light on it, or an egg scrambled into it, and eventually - later- a bit of plain marinara sauce on it. That’s where adding slowly comes in so you know if you can tolerate it.

[beth22]

The tomato sauce did not sit well with me either, but in time I added some. I still don't eat as much of it as before. You mentioned Benefiber. I did not tolerate any type of fiber source like that. It made my symptoms worse. Try stopping it for a day or two and see if your stools improve. Everyone is different though, so in your case, it may be beneficial.

[TonyG]

Interesting, will definitely try the pasta with some fat or eggs, needing some more variety.

My stools have actually been improving a bit since adding small amounts of fiber (benefiber, oatmeal, hummus). Maybe it’s just the vanco and florastor doing its thing though. My biggest issue now is gas, which I can never tell if it’s going to be a bm or not, so sends me running to the toilet in the middle of the night, sometimes with no (or very little) stool. Been happening much more frequent overnight and very infrequent during the day. Great for feeling “normal” during daytime but the lack of sleep is getting to me. Any success with simethicone (gasx)? My doc suggested trying Imodium but I’ve been told that it makes c diff worse by holding everything in too long.

[NanciT]

I am shocked with MD's recommending Imodium, it can be dangerous with CDIFF. Try the GasX, some have tried it on the site. I would stick with a bland diet and try small amount(pasta sauce) before a regular serving. I had alot of intolerances for awhile during treatment. It takes time for the gut to heal.

Take Care

NanciT

[TonyG]

Update:

Finally had a decent night's rest! Was able to sleep 6 hours, no BMs in the middle of the night, and hoping the trend can continue. I slept in a recliner chair, slightly upright, maybe that's the key? Up until now, as soon as I layed in bed to sleep I'd be up running to the toilet every 2-3 hours. I've also been taking a medical food supplement called Banatrol Plus for the last few days. Supposedly this product is helpful for C Diff patients.

[OCmama]

Welcome (I know nobody wants to be here but welcome anyway!) I also had good luck with avocados, I also added Odwalla vanilla protein shakes to all of my meals, I was thin to start with and lost 20 lbs in a months time it was terrifying. Sorry you are here, but glad you are starting to feel better! I am 3 years out now, c. Diff isn't something you forget easily (for me anyway). Merry Christmas!

[TonyG]

Hi All,

I wanted to update you on my status and recommend a couple recipes that have worked out to add some flavor to my bland diet.

I’ve been off the Vanco for a few days now and starting to feel better. I think some of the issues I was having may have been side effects of the Vanco, anyone else feel like they had issues on it? I’m sleeping better, bms are greatly reduced and starting to be at least a little formed. I made it back to work finally and that alone has helped feel a little more normal.

I had an appointment with a dietician who is helping guide my transitioning to normal food and healing the gut. She recommended a probiotic, Align, which seems to have helped the same day I began taking it. She recommended starting on a very basic “bland” diet and slowly adding in new foods to test the system. She also explained to me that a bland diet can include salt and pepper, which obviously helps a ton.

First recipe I tried out was penne pasta (DeCeccco brand) with chicken in an olive oil lemon sauce. It sat very well with me, which was surprising. I sautéed the chicken in a small amount of olive oil, then deglazed the pan with some lemon juice and a cup of pasta water, reduced the sauce down and seasoned with salt and pepper. This made a super delicious pasta sauce for the chicken with controlled ingredients that I knew I could handle. I tried I little Parmesan after a few days, which may have been too much, but maybe it was another item I tried (easy to blame cheese).

The second recipe was lamb and rice. The dietician recommended lamb to switch things up from chicken and turkey, and apparently it’s easier to digest than beef. I picked up some ground lamb, cooked it in a pan with salt and pepper, drained the extra fat and tossed the lamb in some white jasmine rice and a little lemon juice. This recipe sat especially well and I was so grateful to have new flavors that I could handle.

Hopefully these recipes work out for some of you as well.

[beth22]

Thanks for the update and the dietary recommendations. Yes, I have heard that lamb is easier to digest too. It sounds as if you are doing well. Adding one thing at a time is good because if you do have a problem and have added several things, you won't know which caused the problem. Hoping you feel better and better as each day passes. Keep us updated. It gives hope to others.