Relapse or IBS?

Since c-diff is a disease of the "lower half", so to speak, we find that many of our members cannot refrain from discussing what comes out the bottom end. If you must do it, please do it here.
ashtontw
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Relapse or IBS?

Postby ashtontw » Thu Nov 03, 2016 11:02 am

Help!

So I'm currently down to 250mg Vanco 1x day until Saturday. Then I go to a pulse of every 3 days for a month.

I have been tolerating all kinds of food and pretty much eating as I please. Even pizza! (Although I don't like cheese and take most of the cheese off before I eat it. I'm weird.) I've gained back 6 pounds, which I am so proud of and have been working so hard to do. 9 more pounds to gain back before I'll let myself get back to weight lifting in the gym.

This morning, I was awoken by severe lower abdominal cramping and the urge to go. It was semi-solid. Didn't think much of it, as I normally have one movement in the morning and then go about my day. As long as it's mostly formed, I'm happy. It's usually been one long rope and mostly back to brown color since I dropped down to once dose of Vanco daily. I am continuing to have episodes of severe abdominal cramping since I woke up (to the point of curling up in a ball and applying pressure to lower abdomen to try and ease pain) following by an immediate need for a bowel movement. This has happened three more times, slightly more loose but still somewhat formed. Total of four times within 30 minutes. This is not normal for me at all over the last month or so. My BM have regulated to once a day, in the morning. So, naturally, I'm freaking out. When I had C Diff the first time, I had this horrendous cramping and need to have a BM. Although it was D. But each time I'm going, it's slightly more loose. I am on my period, but at the end of it. This is not like period cramps, it's definitely stomach cramps.

Yesterday I didn't eat the greatest. I had a migraine, stayed in bed all day, and kind of snacked on whatever I could find: apple, banana, 4 KFC biscuits, handfuls of candy corn, 4 chocolate chip cookies, bowl of toasted rice cereal and milk (I don't normally eat milk lately because my ID doc told me to avoid dairy)

Could it be what I ate? Could I have PI-IBS while still on Vanco since I'm on just once a day? Or worse - could this seriously be a relapse after I've been recovering so well? My last two relapses started with mostly formed-loose. It has not always been D for me. I've been abstaining from sex until off of Vanco because of increased risk of UTI. I've been getting all of my dental work done to avoid infection. I've been taking my probiotics (Florastor 2x day, Culturelle 1x day) and doing everything in my power to avoid any sort of infection to need antibiotics and bring the beast back. Please tell me this isn't the start of it kicking me down again! Ahh!!

Guess I just need someone to talk to or advice/opinions. Anything to distract myself from the anxiety I'm feeling right now.

NanciT
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Re: Relapse or IBS?

Postby NanciT » Thu Nov 03, 2016 11:40 am

Hi Ashton
It could absolutely be what you ate. Just one of those muffins would have done me in!! It sounds like you have been doing great but there can still be "off" days and I have found either it is what I ate, or I have picked up a little flu bug. Sometimes if I am just feeling "run down" things get thrown off". This has happened to be several times, I have even had D for three days...and then was fine.
I know the fear is in the back of our minds as we recover, give your GI system a little rest over the next few days.Go easy on the food and hopefully that will do it for you.
If the cramps and D continue for several days, that is the time to call the GI.
Feel better soon
NanciT

ashtontw
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Re: Relapse or IBS?

Postby ashtontw » Thu Nov 03, 2016 12:23 pm

Thanks Nanci!

I know I'm lucky to be able to tolerate eating most of what I do. I know I posted about nutrition awhile back, and so many posters still can't tolerate many things. I'm really hoping I just pushed it on the food and finally found something that didn't agree. I've come so far! And I've been so confident that I am going to beat it this time. It's been three months of this last round now - so close to being off the Vanco. That, in itself, is making me nervous now with today's symptoms. I stop it and begin pulse on Saturday.

I've been able to get so much of my life back in order, I just want to continue on that positive and healing path. Dang set backs/off days are horrifying! This is the first time I've experienced this cramping and immediate BM, multiple times in a row, since I was first very sick. Fingers crossed that it's a fluke.

Thanks for responding! I'm sure you know, it is so helpful to be able to vent and talk it out.

ashtontw
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Re: Relapse or IBS?

Postby ashtontw » Thu Nov 03, 2016 2:47 pm

Now having full blown D. Now I'm really freaking out. Still wait 3 days? I feel like I wanna call my doctor now but I know that's probably jumping the gun. I hate the thought of giving this thing any time to fester.

amg
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Re: Relapse or IBS?

Postby amg » Thu Nov 03, 2016 3:51 pm

Oh, I'm so sorry to hear this!

I'm new to this, but I tend to agree with the festering comment you made. My view is that the longer it goes, the more inflammation you will have and the more time to recover. On the other hand, you want to be sure it's a relapse before you change treatment. Do you have any other symptoms that you usually get with relapses that would point to a relapse? Why don't you call your doctor and discuss the possibility of starting the pulse now? Or see what his/her thoughts are. I really don't think the tapers are so scientific and regimented that pulsing today instead of Saturday is significantly different with regards to efficacy. Maybe some spores have come out and you need to blast them? Please call your doctor and discuss.

ashtontw
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Re: Relapse or IBS?

Postby ashtontw » Thu Nov 03, 2016 3:59 pm

amg - I'm still taking the Vanco 1x a day until Saturday. On Saturday I stop it and take it every 3rd day for a month. I took my dose of it today already. This is the first time I've had D since August when this last relapse started. I've gone 6x now today, started off formed and the last one was D. Each BM got softer until this last one, D. My stomach has been crampy all day, really painful crampy and down low. It cramps up bad, then I have to go to relieve the cramping. Not sure if that could be IBS or if its C Diff. I've had so many symptoms and scares through this all, I tend to forget the details of what happened when. I generally feel really crummy and tired right now. Thankfully I'm off work today, but have to work tomorrow morning and I'm afraid. I can't keep missing work, I'm so far in debt from all of this.

roy
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Re: Relapse or IBS?

Postby roy » Thu Nov 03, 2016 4:06 pm

Don't panic (yet).
If D continues to increase tomorrow call your Dr and ask if it might be an idea to go back up to 2 pills a day and taper down again after the symptoms stop.
It's not a good idea to start the pulse if you already have active c.diff symptoms.

ashtontw
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Posts: 193
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Re: Relapse or IBS?

Postby ashtontw » Thu Nov 03, 2016 4:23 pm

Thank you Roy.

I'm hoping, praying, pleading...that this is some sort of really effed up fluke and that tomorrow I will go back to formed BM. God, am I praying. My mom thinks it's something I ate, but I don't think food would cause cramping to this extent and solid-D within a day...would it? I think I'm gonna keel over if I just went through 2.5 straight months of Vanco, feeling better, back to work, having my life back, catching up on my bills...to relapse when I'm two days away from basically being off of it. This disease is so twisted. :'(

amg
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Re: Relapse or IBS?

Postby amg » Thu Nov 03, 2016 5:03 pm

Oops, my mistake! I thought pulsing had a higher dose but then spaced it out. I now understand it's still a low dose but spaced out to one pill every 3 days. Sorry!

ashtontw
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Re: Relapse or IBS?

Postby ashtontw » Thu Nov 03, 2016 5:12 pm

amg - It's okay! I've never pulsed before. This will be my first time trying it if I'm not currently relapsing. It lets the spores that may be in hiding hatch, become active, and then you hit them every few days with the meds and kill them off. I had a successful treatment with a tapered dose of Vanco on my second relapse. But had to take antibiotics for a UTI and here I am on my third relapse. I went on a long taper, and my ID doc wants to pulse at the end. He also increased me from 125mg to 250mg halfway through my taper when I got down to 2x a day. It's been a long almost three months of meds. I just want off!!

Is this your first bout with C Diff? How are you doing?

amg
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Re: Relapse or IBS?

Postby amg » Thu Nov 03, 2016 6:19 pm

I'm so sorry you are going through this. I haven't had it myself, but I'm helping my daughter (she's 14) who has had 5 episodes of it since her appendix was taken out last July 1. It's a horrible, horrible illness, and I'm so sorry for anyone going through it. But you were successful with Vanco before! I'm hoping and praying with you that this is not a relapse and that you feel better and get your life back asap. If it is a relapse, like Roy said, maybe you only need to hit it with a short course of higher dose and then continue with your plan. Hang in there!

ashtontw
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Posts: 193
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Re: Relapse or IBS?

Postby ashtontw » Thu Nov 03, 2016 8:12 pm

I'm so sorry your daughter is having to deal with this! Gosh, I thought I was young and going through it. I'm 26. I can't imagine being in high school and fighting it. Bless her heart. I will be keeping you both in my prayers. How is she doing currently? Has she had success with Vanco?


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