Scared to travel

[slplkaye]

I was diagnosed with c diff at the end of October and completed my ten-day course of vanco 18 days ago and have not had diarrhea since day two of meds. I still have some mild cramping and I am having 2-3 formed bowel movements a day, which is a lot more than I had prior to c diff. I saw my PCP right after I finished my meds and asked if I could have a prescription for vanco or Dificid to take with me on our vacation (we fly out Saturday and will be gone a week), just in case I relapse. He told me that I am not going to relapse unless I take antibiotics again. I'm not sure if he is just trying to get me to stop worrying, or he truly doesn't know what he's talking about. He would not write me a prescription and told me to call him back if I still thought I needed a prescription when came closer to time for my trip. I called Monday and left a message and never got a response. I am terrified about being a thousand miles from home and having a relapse while sharing a restroom with my kids. I had bleach wipes, gloves, and bleach spray delivered to the resort, but I still feel uneasy. I thought about canceling our trip, but my kids will be so disappointed. Am I being unreasonable for asking for a prescription? I could use some good thoughts, prayers, what ever it is you can send my way. I want to enjoy this trip with my kids, but I am such a worrier!

[beth22]

You could try calling back tomorrow to see if you can get a prescription. If not, take the empty bottle with you on the trip and if you have to call a doctor at the resort, then you can show him or her what you took.

[MKW]

Hi, your doctor is wrong that you are beyond the point of possible relapse. I relapsed twice at the month or so mark. Likely you are in the clear... but given that one out of five people relapse he should understand your request. And most medical articles will state that can happen up to 10 weeks after treatment. You have a realistic concern. Taking your Vanco bottle with you is a good idea. But also I would think at any resort a doctor would be able to provide Flagyl for you, which could at least treat you until you were able to return home. Also, if you have the bleach on hand you can effectively disinfect, you have safeguarded your children in that way. Maybe you should check into what access to medical care you will have at the resort if you can’t get the prescription? All you can do is try to prepare, but don’t let this dreaded illness rob you of any more than it has too! Enjoy your vacation! :-)

[georgina]

It quite irresponsible for your doctor to deny you a prescription of meds in case of a relapse while you are travelling , also very irresponsible for him to just assume that you are not going to relapse as we know that a relapse can happen even after a month after meds. I would go back to him and demand a prescription , he has to consider that if you "GOD FORBID" relapse you can get very sick and very fast.

[roy]

Where are you traveling to?

[slplkaye]

We are going to Disney. I mean, I’ll have access to medical care, but I’d like to avoid it if possible. I have been feeling great, and I keep trying to tell myself it’s going to be ok.

[slplkaye]

I just got a message from the nurse saying that my PCP is out of the office until Monday and to go to urgent care if I get sick. Great.

[amg]

This sort of thing tells me your doctor doesn't understand what patients go through with c diff. "Oh sure - find an urgent care in an unfamiliar place, and go sit there waiting to be evaluated while you have to keep running to the bathroom with diarrhea which is infectious. Not to mention any car rides involved. No problem."

I feel so blessed to have had our ID doctor. After our first visit with him, he gave us his cell number and we could call or text, he would discuss the clinical situation with us during a suspected relapse, and he would call in a prescription if needed. He told us that was easier than going through the doc on call. (Why do relapses always occur after hours????) And he gave us a 'just in case' 4 day supply of Vanco in the event my daughter relapsed while on our vacation. Of course, by the time we started seeing him, she'd already relapsed twice. So we had a good idea of what a relapse was.

I'm so sorry you have to have this extra worry. But try to focus on the fact that you're not just feeling ok, you're feeling GREAT. That's an excellent sign. Hopefully you won't ever relapse again! Or if it happens, it will happen when you're already back home. But try to not let this ruin a once in a lifetime trip with your kids. Live in the moment and ENJOY. And try to eat bland and wash your hands a lot so you don't pick up any viruses. Have a great time!

[roy]

Go and enjoy yourself, theres no problem accessing meds if you need them.
Just make sure your insurance covers you in case you need to see a Dr there.
Sounds like you won't need to though.
And like Amg said, be carefull what you eat!

[slplkaye]

Thank you so much for all of your encouragement! I plan on enjoying this trip with my boys!

[slplkaye]

Well, it’s day two of our vacation and all of a sudden, I was hit with nausea and yellow, smelly diarrhea. I called my PCP and he again said my c diff cannot come back unless I take more antibiotics (he’s a really nice guy, but he’s wrong). He told me to stop worrying and take pepto. I am 22 post vanco and I felt great until yesterday. I should mention that I hate flying and got extremely nervous Friday when we flew. I have been trying to watch my Diet, but I have had a couple of bites of things that I don’t normally eat. I really, really hope a trip to an ER a thousand miles from home is not in my future.

[MKW]

Hi, so sorry to see this and sometimes dealing with the uncertainty of c Diff psychologically can be as bad as the physical symptoms. You have likely been under a lot of stress just getting to your destination and that can cause bad GI symptoms.... The defining characteristic with c Diff is that it progresses. Pepto won’t keep it in check. If it’s nerves or something you ate the symptoms will pass. Although many of us associate the bright yellow D as a symptom, that can happen just from fast transit. Keep us posted on how you are doing, and remember you aren’t alone in this ordeal and everybody on the board can relate!

[amg]

Yes, your PCP is definitely wrong. One of the most confounding things about c diff these days, which is worse than it used to be, is its potential for relapse. First timers have a 20% chance of relapse. After one relapse, your chance of another relapse increases to 65%.

BUT...let's be hopeful it's not a relapse.
MKW pointed out some excellent stuff for you, especially that a c diff relapse usually will make you progressively sicker, unlike eating something that you can't tolerate, which gets better pretty quickly. Another way to help distinguish a relapse from just stress or something you ate that doesn't agree with you, is to see if you have other symptoms that you had along with your first c diff infection - fever, chills, extreme fatigue. My daughter also had a puffy abdomen and a very pale face. Everyone has their own constellation of c diff symptoms.

And if this turns out to be a relapse, you should get a GI or ID doc on board, because this one doesn't understand enough about c diff.

I'm so sorry you're not feeling well on your vacation. Praying it passes, and you can enjoy the rest of the trip. But remember, even if it is a relapse, there are other treatments out there such as Dificid that can be extremely effective. My daughter felt so much better within 2 doses and had no side effects from the Dificid.

Good luck!

[roy]

Check if Disney has a medical centre for visitors.

[slplkaye]

They do, Roy. I talked to them yesterday. The clinic is staffed by RNs. The nurse I talked to was very nice and helpful. She said they could not do any testing there, but gave me a brochure with the names of several urgent care centers and ERs. She was very sweet and tried to calm me down. She told me it could just be from anxiety and eating strange food, but it was good that I am staying on top of it. I am happy to report that I had a solid BM this morning. It might just be from the pepto I took last night, but I wouldn’t think that pepto would help if I am having a relapse. What do you think?