Trying to be patient

[BetsyS]

I went off my Vanco taper 9 days ago. I had my first normal stool the last day of my antibiotics (3 rounds of Vanco). I've had two days of WD with nausea twice since then, but also 4 days of normal stool. I am trying to observe the 3 day rule, so I haven't called my ID. I've been taking my probiotics and keeping to a bland diet I've been able to tolerate thus far; mostly cottage cheese, poached eggs, bananas etc.

I had 3 violent bouts of WD last night. My mom is concerned and wants me to call the Dr. She knows I've had a rough time and doesn't think I've really been cured. I am trying to be patient, but part of me wonders if she may be right. At what point do I give in and call? My next appt is in 4 weeks. These bouts totally wipe me out and I am unable to eat anything.

Horrible disease!

[D1dad]

It depends on how you were when you were diagnosed. I was feverish, achy, dizzy and felt like death and had the shakes. That was in addition to using the commode 20-30 times a day. I relapsed within 48 hrs and it was unmistakable and was prescribed an additional 7days of metro, the first round was 10. After my second round my body went to war with c diff for a few months and the whole time I was taking probiotics by the handful, which didn’t help. I for one would never take the awful stuff to cure this disease unless I was positive. But I honestly called my Id doc because I didn’t think I was getting better and was advised of the 3x3 rule. Luckily the doc was stronger than me and truly saved me from a setback.

[Ril]

If you have had 4 days of formed stool in between I would wait and see how you do for the next day or two.
I also would try cutting out the cottage cheese. Some people can not tolerate dairy. Carbs, light proteins such as eggs and grilled lean poultry and fish seem to be better tolerated as a rule.
Make sure you are not taking too many probiotics. Some people can not tolerate those.
Nausea is common in recovery so that by itself is not an indicator of relapse. I had it for many months as did many others.
And yes, it is a horrible disease but usually you do not have several days of formed stool when you are relapsing.

[BetsyS]

Thank you both.

D1dad- I was diagnosed with C Diff on Nov 22nd while in the hospital for a hemicolectomy related to cancer. I too spiked a high fever and had WD 15 to 20 times a day. I was put on Vanco and they kept me in the hospital an extra 4 days, but I still had WD when they discharged me. So far I've had 3 rounds of Vanco, but I've only had 5 days of normal formed stool since I was diagnosed, and all have been just in the last 9 days with no more than 3 consecutive days formed. You can understand why my mom does not think I'm cured.

Ril- I am pretty sure I am not intolerant of dairy products. The last few weeks I've been keeping a food diary and started eliminating foods; I think that's what helped me turn a corner to formed stools. At this point I'm waiting until I am more consistent before adding anything back. It's funny you mentioned backing off the probiotics. I did have to reduce the pills because they were upsetting my stomach (GERD). I'm still taking a reduced dose, but am focusing more on food sources. I may try going without the pills altogether.

I am going to take both of your advice and stick to the 3 day rule before calling the Dr. I just need to remind myself my colon has been through a lot between the surgery and C Diff, and this is just my path to healing.

[NanciT]

Betsys

Things can be "all over the place" post treatment. In your case also having a previous surgery, things take time to heal. When I did relapse, I knew it. Symptoms and D came back 100% and I had nothing formed. Due to your history if you find symptoms are not improving, always check back in with yor doctor.
Everyone is different as far as healing, some much quicker than others. My gut took a long time to heal and I had to be careful and still to a bland diet. I went very slow and that worked for me, we have others who jumped right in and did just fine.
It can be very frustrating, you are not alone in this and the frustration.

Wishing you better days ahead

NanciT

[Bobbie]

Betsys,
We refer to this as WWW - watch, wait, and worry. It is a difficult time for all. Hang in there and keep posting.

[BetsyS]

NanciT and Bobbie- Thank you both for replying and your good wishes. I've shared your posts with my mom so she knows what I'm going through is par for the course.

Praying for patience; I just wish God would hurry up!

[Bobbie]

BetsyS,
You have been thru a lot. Glad u have a supportive mother.

Keeping a food diary is an excellent idea.

Hope this is a better day for you.

[BetsyS]

Thank you for the kind words Bobbi. Every day is a new day!

[BetsyS]

Update: I am now 2-1/2 weeks post taper, and I seem to be losing ground. I have not had a formed stool in a week, but only 2 episodes of WD, the rest is somewhere in between. I have not hit the 3/3 rule. At this point I think it is more akin to IBS than a relapse; I'm just not seeing some of the severe symptoms i had when I was full-blown.

Although I've been eating a bland diet, I did eliminate dairy and gluten again this week, and have been pretty much on BRAT the last couple of days with no improvement. My neuropathy has returned to my hands and feet, and I am losing a lot of hair. I suspect it is diet related; I have lost 5 lbs this week. I am starting B12 and D3 supplements to my daily vitamin today and will probably call the Dr. if things continue next week.

Any other suggestions are greatly appreciated!

[Alisha]

I think your doing a really good job! sorry your still going through it. I was on a vanco 1 1/2 years ago for cdiff and my bathroom habits took a really long time to get to a place where i wasnt so quick to panic, but never really the same. The recovery process was intense, im glad your taking b12 and D i ended up being deficient. Just try and keep up with your healty eating. I found no gluten and sugar felt the best for me.

[BetsyS]

Thank you Alisha. My post was made a year ago, and I have gone through the gauntlet. I was having chronic D and losing about 3lbs a week. Among other things, I just couldn't handle food.

My ID referred me back to my GI. I was not relapsing again on CDiff. Turns out the biggest issue was the cancer surgery I had. CDiff definitely caused problems and complicated the recovery, but the biggest factor was the removal of part of my small intestine. More of it was removed than I realized, and it does impact my ability to process some foods and absorb vitamins. Combine that with CDiff and IBS, I was a mess.

I'm a year out now. D is still my norm, but my overall health is much better. I keep the vitamins going, and still avoid some foods. I found stress is my #1 trigger, esp for IBS. I'm trying to reduce my level, but life happens. The fear of CDiff is still very fresh, esp. Since my ID says it's colonized and I'm high risk (can't go off of the PPIs). I am thankful for the users and moderators of this Board. People like you have helped me navigate this journey

[beth22]

Glad to hear you are doing better Betsy. Are you taking digestive enzymes or is that not part of what was prescribed? I know some people that have had IBS issues and people with SIBO have taken them and they have helped to digest foods better. I don't think the fear of c diff ever leaves any of us 100%.

[BetsyS]

Thanks Beth. No one ever suggested digestive enzymes, I appreciate the advice. I actually tried them a few years ago for another stomach issue, and they helped some. I'll give them a try again.