Young in Pain and Afraid

[InPain]

~ AngelaB,

I'm sorry to hear that you first got this at a young age, as well.

It's truly horrendous. I've had various episodes of influenza and flu throughout the years that I thought were horrendous but they don't hold a candle to this.

It sounds like you've been through the wringer with this in which I'm sorry to hear. I hope that you don't relapse again, you've had enough, as well as everyone here has. My fingers are crossed for you that the Dificid has done it's job effectively.

Like you, I need to eat "something" but my GI tract seems to view food and water as the enemy at the moment. I'm hoping as time passes, I can eat normally again.

Thank you for explaining your situation and for the good wishes. They're much appreciated!

[InPain]

~ NanciT,

Oh my, you had vomiting, as well?

My heart goes out to you. There's so much going on now, I can't imagine throwing that into the mix, as well. I am happy that you've recovered and hopefully not had any relapses.

You're absolutely right, we treat patients while in our care but don't get to see what they go through after the fact, while at home.

No two people are the same when they have it, either. I'm not a baby but it's certainly taken it's toll on me.

My mother had it a few times but hers seemed so mild compared to this. She had bad groin pain that went on a few days, saw her primary (which I'm not fond of) and he diagnosed her with a groin pull. I kept a watchful eye on her, since I didn't trust him and she worsened quite rapidly. I had my suspicions by the time we got her to the hospital and sure enough, she had a perforation from diverticulitis. They were able to do surgery but she was septic and on a vent thereafter. She quickly went into MOD, on 24/7 dialysis, etc. and was told that she had a 25% chance of recovery. Thankfully, she defied all odds and made it but her recovery was long and hard with frequent infections and of course, C Diff.

She called to check on me and said she never had it that bad. "Mom" is clueless as to how bad this can get for some. She's so stubborn that she's never found a new primary, either. It took me two years to convince her that CHF doesn't go away, while she insisted that her primary said it was gone. Oh, the frustration!

I do hope the Vanco works for me but do have a reputable GI on standby, just in case.

I need to check the "safer" antibiotic list as I seem to have an allergy to a plethora of antibiotics out there. My fingers are crossed that my go-to is on the safe list.

Thank you for the idea of Sea Bands. I'm open to anything!

Thank you again for writing, your thoughts as well as your advice.

[InPain]

~ Ril,

Thank you for the welcome, it's appreciated.

That's impressive that you haven't had to take antibiotics in 8 years. I'm glad for your sake that when you did have surgery and had to take them that they didn't cause a relapse. That's great news.

I usually have to take them once every two years and am hoping there is no reason to anytime in the near future.

Improvement for me seems to be slow going, although I didn't realistically think that 5 doses of Vanco would cure me. I'm on the 125's at the moment. I have seen "small" (very small) improvements over the past two days but nothing terribly significant. My bowels have really tamed down and I've only gone twice today that was more or less the consistency of pudding. (I'm sorry for the description)

I'm feeling a little more optimistic on that end of the spectrum but the upper GI still feels so inflamed. I'm just starving but don't feel ready to move on from soups, eggs and dry toast to anything else quite yet.

I'm hoping that the script does the trick but if not, I'll be off to see the GI.

Thank you for the kind words and advice.

[InPain]

~beth22,

Thanks for writing and for your thoughts.

It sounds like you've had a rough go with it, along with everyone else here. It seems as though we all get it pretty bad to some degree, some never look back whereas others have on-going problems.

I'm sorry to hear that you became lactose intolerant. I knew that some have and had hoped when all is said and done that isn't an issue for me as I love my dairy products. I've managed with Activia in between doses fine and am going to experiment with several probiotics. I've always known that probiotics aren't a one size fits all.

My diet the past few days has consisted of dry toast, an egg or yogurt. I tried plain stuffing but it didn't agree with me, unfortunately. I'm really surprised you were able to tolerate chicken and turkey in the beginning. Just typing those words makes me salivate because I'm so hungry. I was able to graduate to mashed potatoes today, I even tried the gravy which I thought would be a bad idea but surprisingly enough, didn't bother me. Large meals for me are out of the question. I have to eat small amounts throughout the day or else I feel terrible.

Thank you again for the response and advice, it's appreciated!

[InPain]

~Caligirl,

What a nightmare!

I'm so sorry to hear of the ordeal you went through, especially while being pregnant. I can't imagine being pregnant while going through this, you must be one strong woman. I truly can't fathom what you went through being pregnant and having to run every 1-2 minutes and all that followed. That had to be one scary nightmare for you and your husband. I have no words to express the sympathy that I have for you in going through it all. To top it all off, a relapse after giving birth, as well.

I can understand why you needed antidepressants and therapy due to the fear of passing it on to your newborn daughter and husband. That's completely understandable.

I'm so very happy to hear that despite your terrible ordeal with this, that your daughter and husband didn't come down with it. It sounds like you and your husband did a wonderful job with cleaning protocol. The first few days, I felt like the walking dead but still managed to wipe down the bathroom after every BM. Since I've gotten a little strength back (and I use those words loosely) I've bleached my entire bathroom and bedroom to the best of my ability at this time. I've managed to bleach my sheets and clothing on a daily basis the past few days and I've been trying to wear the same 3 sets of sweats and tees so that I can just toss them once I'm well. Since the beginning though, I always used Clorox Fusion and Germicidal wipes after using the bathroom. (I was horrified to read online that many were using Clorox wipes and wanted to scream into my laptop that they don't kill C Diff!) I've been wiping down everything the best that I can for now. Once this is over, I intend to do a very thorough cleaning. My mother has wanted to come to visit, but I'd never forgive myself if she came down with this after visiting me so I've told her to stay away for a while.

I'm very happy to hear that you have a healthy and happy baby girl! Congratulations!

I give you a lot of credit for all that you've been through. When I read over your story, my jaw dropped. Good for you and your husband for being so proactive!

Thank you as well for letting me know that for some, there is life after C Diff and you can be normal again. Emotionally, I'm in the mindset of worry that this will go on and on. It doesn't help that I work in a field where "bugs" are hiding around every corner. I really needed to hear your words of hope tonight that you recovered and are doing well.

Thank you!

[InPain]

~AllisS,

Thank you for writing and offering your advice.

A challenging and draining illness is an understatement. Years ago, I came down with Mononucleosis and was stuck in bed, quite ill for some time. I always viewed that as my personal worst illness. That was a cake walk next to this beast.

I did some research earlier today and it sounds like the jury is out as to whether probiotics actually do help replenish your gut flora after a C Diff infection. Some studies report that they do, whereas others say they found no significant benefit. I do know that my mother recovered quickly using Kefir and alternating that with various probiotics but who knows if they helped or her immune system just took over after her illness. Her illness was nothing like this in severity, either.

I'm going to experiment with a few in the coming days. I'm concerned about gas because I have tried probiotics in the past (while taking an antibiotic) which made me feel so much worse. I guess it'll be a trial an error test to see what helps, if anything. I would assume though that at this point, my gut flora does need a helping hand.

As for chewing gum, I had hoped this would work but my saliva wouldn't even take the burning sensation away.

I was considering seeing a GI however; it may take some time to get in. I do know an Infectious Disease Specialist who I think I could get in to see much quicker. I may re-think that route.

I am sorry to hear that you too have experienced this awful illness. I'm happy that you've had physicians that have worked with you with preventative antibiotics for surgeries. I really wish more physicians worked together on issues such as this. I do hope that you've recovered well from your surgeries and wish you the best.

Thank you again for your response and advice.

[InPain]

An update on my situation:

I am starting to feel better, just a bit though.

The diarrhea has subsided and I only went twice today. It wasn't solid like yesterday but a pudding like consistency. (I'm sorry for the description) I seem to be doing much better in that department today, regardless.

My issues today seem to be stemming from my abdomen. It's still cramping badly, especially after I eat a small meal or after only a drink of some sort. The acid is just insane that's coming up into my throat, everything feels so raw.

I'm exhausted and drained like I've never been in my life. I "think" I just completed my 5th day of Vanco with 5 more days to go. (I seem to have lost track of my days)

Staying hydrated is no longer a problem, I'm managing well in that aspect. Food is still an enemy to me, although I'm starving. I'm hoping I can stomach a bit more tomorrow.

It seems as though when I was in the ER, I must've picked up a cold virus. I'm now sneezing and congested but trying to just rest and continue with fluids and Netflix.

I must've been sleeping quite awkward the past few nights due to my abdominal pain because my carpal tunnel flared up. I'm guessing I probably had my wrist all bent up underneath me, holding my abdomen.

Whoever said "When it rains, it pours" were right on the money.

Thank you all again for your advice, caring and compassion. You are all a wonderful group of people.

[NanciT]

Sent you a PM, if you look at the top and click on it you will see it


NanciT

[Spike]

I just going to throw out a suggestion and others may disagree about the acid reflux. Try a teaspoon, worth of honey. When I was coming off my ppi honey did the trick for me. I know your not suppose to feed the gut surgar but if a small amount can make you comfortable I think the benefit out weigh the risk of surgar. Just my opinion.

[InPain]

~ Spike,

Thank you kindly for your suggestion of honey, I really appreciate you taking the time to write me with your thoughts!

[hledgess]

I saw a couple not suggest the generic floraster.. I have the generic one now that I’ve been using .. should I not? Aren’t they the same thing? I’m confused.. hope I haven’t been wasting time by not using the correct one.. I asked weeks ago which to take and no one replied

[D1dad]

I take generic florastor now from rite aid. When I had the infection I didn’t wanna take a chance that maybe it wasn’t the real deal. I’m sure generic is fine but for a few bucks why take a chance. In fact I’ve got a few weeks left and then Im gonna stop taking them. My gi was adamant about taking them for a few months after I was done with my meds, March will be a year. Honestly the last month has been like the days before cdiff for my body and mind.

[LHutz]

Sorry to hear that you're going through this terrible illness. I was diagnosed 13 months ago at 38 years old. I wasn't on antibiotics at the time but had taken a round of clindamycin a month before my diagnosis. Thankfully, I recovered after a 10 day course of Vanco. The great news is that the overwhelming majority of people recover from c. diff after one round of treatment and do not suffer any recurrences.

However, even if you recover after only one round of treatment, recovery can be a long process and involves a lot of trial by error. It's been 13 months since I had c. diff. and I now have food sensitivities that I did not have before c. diff. For example, I can't eat green leafy veggies or large amounts of fiber. A small side salad will have me running to the bathroom and leave me with an upset stomach for a couple days.

For about 6 months of my recovery I had a lot of IBS symptoms until I figured out what foods I could no longer tolerate. As long as I avoid those foods I'm fine. There were times when I thought I might be suffering a relapse but it was just IBS symptom flare ups. The point is that once you are "healed" you will not be back to normal. Recovery will take a long time because this illness has caused a lot of damage to your GI tract and it needs to heal. There may be times when you are convinced that c. diff has returned but the symptoms will go away after a couple days and you will realize that it was just an IBS flare up.

If you do believe that you're having a c diff recurrence, you should know that your test results will not be reliable for sometime. So at this point, doctors will treat based on symptoms and not test results. The general rule is that doctors will not treat you for c. diff unless you have had D for at least 3 times a day for 3 consecutive days. So if you test positive but do not have these symptoms, doctors are generally advised not to treat it as c. diff.

As far as probiotics, I took Florastor while I was taking Vanco and during the first few weeks of my recovery, but at the time it caused me stomach discomfort so I stopped taking it. However, I started taking it again a few months ago and it does not cause any issues for me now.

You mentioned that you were not taking an antibiotic when you were diagnosed, but you also mentioned severe stomach acid a couple times. There have been studies that show a link between PPI antacids and c. diff. It's thought that the reduction in stomach acid may allow for c. diff to overgrow and cause infection. So if you're on a PPI, you may want to talk to your doctor about that.

Good luck!

[D1dad]

I took 10 days of metro and relapsed in 2.5 days. The incompetent urgent care acted like vanco is kept under lock and key and wouldn’t prescribe it, instead I got another 7 days of flagyl but it worked. I’m proof that a relapse isn’t the end of the world. I’m 46 btw.

[InPain]

~ LHutz,

Thank you for your response and I'm sorry to hear that you're part of this "club", too.

I'm sorry to hear that you're still trying to deal with the aftermath of C Diff. Does everyone deal with IBS forever or is a short term issue? At my age, I would be terribly upset if I could never again eat my beloved vegetables and my dairy ever again.

From the sounds of it, it seems as though everyone is different, so I assume that also applies to our recovery periods.

I'm still on Vanco and began to get somewhat formed stools and an appetite back. I've been eating a bland diet but seeing the milk in the fridge tempted me. I drank a glass and had mushy stools the following day which I believe was likely from the milk. Lesson learned, don't introduce anything that quickly at this time.

I also began taking Floraster a few days ago and don't seem to have a problem with it. I'm sorry you initially did. It's all trial and error, I guess. I did try Lifeway Kefir today (only about 4 ounces) and it didn't seem to cause any stomach upset or otherwise.

You brought up a good point about PPI's. I am aware of the link between them and C Diff. I recall the week prior to catching this, taking Pepcid for about a week straight. It's not as powerful as PPI's but does decrease stomach acid. I wonder if that had any part in all of this, although I'll never know.

I'm feeling much better than when I first joined this forum C Diff wise, my respiratory infection that I caught is my main issue as of now. I'm praying for no relapses as time goes on.

Thank you kindly for your telling me your situation and offering some helpful advice. It's much appreciated.