July 13, 2006 I entered outpatient surgery to have a cyst/tumor removed from my ovary and awoke 7 hours later with a complete abdominal hysterectomy, the cyst was borderline malignant and both ovaries were too. (I thank the Lord it was found early!) I went home July 15th (because I begged the doctor!) with a prescription for Levaquin, I don’t know what I was given in the hospital.
July 18, around 1:00am I woke up in a rush for the bathroom and spent the better part of the night there, while pressing a pillow to my stomach, and trying my best not to wake the hubby or daughter. Assuming it was just a reaction to all the meds. from the hospital, I didn’t think anything of it – until after my husband had left for work. When I began passing yellow pus-looking stuff with blood, my daughter called the surgeon and took me to meet him in the ER. I was admitted and stayed 4 days: the hospital lab test for C-diff came back negative. They did a CT (after I drank some nasty stuff) and it did show inflamed colon and ‘pancolitis.’ I left the hospital July 21st with orders to finish the Flagyl prescription. GI doc said he thought it was “just a very mild case of colitis” and all the pain was from the surgery.
July 22nd I woke up during the night extremely nauseous and vomiting. Called the surgeon again, he said he thought it was just a reaction to all the meds while in the hospital and called in Phenergan suppositories. I was quite heavily medicated in the hospital as the pain was uncontrollable - from the surgery, tremendous amount of air in my abdomen from the surgery, plus what I now know for certain was C-diff, and the horrendous low back pain that went along with it. (I only had to use the Phenergan once, I was never that nauseous again afterwards.)
I was having a terrible time sleeping and the most awful night sweats; the surgeon had me on Lorazepam for just a few days which helped a lot. I assumed it was all the surgical trauma, hormone change, and some of it may be, but – I had already begun menopause and this was different. Now that I’ve read other people’s cases I realize at least ½ of each problem is also C-diff and/or antibiotic related. (Currently I fluctuate between unable to sleep, or exhausted and falling in the bed at 8:30pm! The severity of the flushing seems to directly relate to the amount of stomach pain/cramping I’m having and so does a lot of the back pain.)
Relapsed again on Aug. 7th, about 7 days after finishing the first Flagyl prescription (10 day regimen I think, some of it given in the hospital). All the same signs as the first episode. Called the GI doctor he ordered another sample to test at a different lab. I was finally able to drop off a sample on Aug. 11th.
Aug. 12th, Saturday evening, the lab contacted the GI-doc-on-call at the hospital about the results, who hunted me up on their computer system and called me that night at home – you know that was bad news! - to say the test was positive and to get me on 500 mg 3xday of Flagyl immediately (a 4 week tapering regimen) and Flora Q or Culturell 2xday for the 4 weeks..
Did pretty good for a few days, then suddenly the evening of the 20th my stomach became very bloated and painful, especially the upper abdominal area. First thing the next morning I knew for sure I’d relapsed again (this time while still on Flagyl). Another test was ordered, another positive. I was changed to Vancocin (500mg 3xday for 10 days, then 2xday for 7 days, then 1xday for 7 days); I began it with the first dose at night on the 25th. As of today, so far no d. but all the other symptoms are still here.
--This last relapse was a bit different, this time my abdomen really hurt (not just cramps) and has numerous extremely painful ‘spots’ (the pain “feels” like my intestines have been operated on in several different places and all the stitches are trying to rip). The painful areas still remain and hurt particularly bad if I am standing for more than a few minutes. (I can’t explain this except maybe where I’m somewhat swayback gravity pulls on the wounded intestines ?) I actually had some spots like this all along and thought, until now, that I may have an incisional hernia from vomiting after surgery. There were 3 definite spots to the right of my incision. Now that I have these pain ‘spots’ all over, I know for sure it’s the C-diff. Anyway, with this episode I’ve also had hip pain, knee pain, shoulder pain, awful low back pain, and peripheral nerve pains (nerve pains possibly being due to lack of B12, as I haven’t taken it since my surgery, I just started up again a couple days ago since it’s sublingual and figured it wouldn’t bother my stomach). It doesn’t help that I’m not taking the Lortab which I usually take 3xday for my back – so how much is normal if I’m not taking Lortab, I don’t even know anymore, except I do not usually have such hip pain.
I’m supposed to return to work from the surgery on Sept. 6th and will just have to play it by ear…I couldn’t possibly return with the current abdominal pain, but hopefully a few more days on the Vanco and that will disappear. On top of all this, I have only limited hearing in one ear (familial nerve deafness) and the Vanco is known to be ototoxic, so it remains to be seen if it will cause more hearing loss.
I continue the Culturell and eating a couple yogurts a day…well, that’s my story. I fully intend to get on a bandwagon of some sort when I’m feeling better. Even just an email with the good Dr. McDonald’s information sent to everyone I know, and they forward it to everyone they know… and so on. Word will eventually spread. I wish I had known ‘then’ what I know now.
(Following is something discovered after the C-diff, I will always wonder if I didn’t perhaps have it back then; and the recent full-blown episode came about because of the surgery/antibiotics rather than actually acquiring C-diff. in the hospital:
Aug-Nov 2005 I started having bouts of upper, center abdominal pain (above belly button) and bloating, bad enough that one night I woke my hubby at 2am to take me to the ER. GasX didn’t help, Lortab didn’t, nothing helped. The ER doctor gave me a prescription for Bentyl, which I thought was a wonder-drug afterwards as it almost immediately stopped the pains when I had them. Then the following Sept. I had a bout of terrible d. with the urge/odor, etc. - had to stay home for about 3 days. I didn’t feel sick, it was just my stomach. Made an appt. with a GI specialist and he did the upper GI and colonoscopy in Oct. (found nothing except a tortuous colon) and ordered some lab work for parasites, etc. (all negative). I don’t know if he ran a C-diff test then. The dx was IBS and I was to drink a glass of Citrucel daily and use the Bentyl if needed. I did great and needed the Bentyl less and less and hadn’t used it since the end of Nov. 2005)
Sheila1's case history
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Sheila1
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Sheila1
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Just a note... today begins day 13 off the Vanco and so far no relapse! I've felt kind of 'relapse-y' ever since going off and had a scare or two, but so far so good.
I still have some abdominal pain, but the painful or wounded areas aren't as bad and aren't as widespread. Have had a few little crampy things happen here and there. My ear infection (or fluid behind the ear drum, not sure which) is back, it's the first sign I've had all 3 times that I was getting sick again; I know that sounds weird. My joints are achy again and my arthritis is bad again...so those are among the things when I say I feel relapsy again. I'm in the fatigued stage again, but then wide awake at 3am - I've gone back and forth from unable to sleep for a few days, then exhausted for a few days.
I go in tomorrow for a urine test to see if my current low abdominal pain is UTI, like I think it is. I begged the GI doc to order the test because HE knows I can't take anything for it (I read on here that bactrim is usually pretty 'safe' and will keep that in mind). And next week I get tested for CDiff since I will have been off the Vanco for over 14 days.
All in all, I'm better than I was......and counting days!
I still have some abdominal pain, but the painful or wounded areas aren't as bad and aren't as widespread. Have had a few little crampy things happen here and there. My ear infection (or fluid behind the ear drum, not sure which) is back, it's the first sign I've had all 3 times that I was getting sick again; I know that sounds weird. My joints are achy again and my arthritis is bad again...so those are among the things when I say I feel relapsy again. I'm in the fatigued stage again, but then wide awake at 3am - I've gone back and forth from unable to sleep for a few days, then exhausted for a few days.
I go in tomorrow for a urine test to see if my current low abdominal pain is UTI, like I think it is. I begged the GI doc to order the test because HE knows I can't take anything for it (I read on here that bactrim is usually pretty 'safe' and will keep that in mind). And next week I get tested for CDiff since I will have been off the Vanco for over 14 days.
All in all, I'm better than I was......and counting days!
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Sheila1
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update...
Well...I posted too soon. The cramps got worse late Friday night and throughout the weekend, then a little better Sunday and a little better Monday and yesterday. However, my ear pain is worse (funny, that's been a first sign every single relapse with me!), I've got the off and on "stinging" pains in my lower intestines (can't describe except maybe like I ate straight pins for breakfast and they're working their way through), more fatigue, more headaches. Funny thing is, except for a tiny bit of mucous and pus on Saturday when the cramps were the worst, I'm not having bad diarrhea. Monday was the worst and it wasn't that bad, kinda like...um TMI here...extremely thick cake batter (oh gosh I'll never be able to eat another cake!); and only one bm every 2 to 4 days (although I have read CDiff can cause constipation as well as D).
Anyway, I took the stool sample in on Monday (10/3) and today the nurse called - it was positive again. I wasn't surprised.
I think the doc is going to put me on Rifaximin or Questran with the Vanco this time...still waiting for the nurse to call me back again.
Round 4....I hope I get to do the knock-out this time!
Anyway, I took the stool sample in on Monday (10/3) and today the nurse called - it was positive again. I wasn't surprised.
I think the doc is going to put me on Rifaximin or Questran with the Vanco this time...still waiting for the nurse to call me back again.
Round 4....I hope I get to do the knock-out this time!
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Sheila1
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nurse called back..
My GI doc has the most wonderful nurse - how fortunate and how unusual!!
The doc is putting me on Questran alone (with continuing the FloraQ). He doesn't want to add the Vanco based only on the lab work, but rather based on my symptoms, and I'm to call and let the nurse know how I'm doing next week.
I suppose the thinking is - if the D. is not bad and the symptoms are fairly mild, add the Questran to help bind and remove the toxins and let my body continue to do it's own work. Makes sense I guess. We'll see how it goes!
Each relapse has been a little easier than the last, so I'm hopeful.
The doc is putting me on Questran alone (with continuing the FloraQ). He doesn't want to add the Vanco based only on the lab work, but rather based on my symptoms, and I'm to call and let the nurse know how I'm doing next week.
I suppose the thinking is - if the D. is not bad and the symptoms are fairly mild, add the Questran to help bind and remove the toxins and let my body continue to do it's own work. Makes sense I guess. We'll see how it goes!
Each relapse has been a little easier than the last, so I'm hopeful.
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Sheila1
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Was on the mend, but….disappointing week this past week.
I began the Questran at 2 pkgs. a day on 10/6 and it helped a lot as far as no d. but I’ve still had the continuous abdominal pain/stinging but it was getting better, albeit extremely slowly. It feels like there are actually ‘sores’ in there. Fatigue is a big issue, I didn’t have the fatigue when I was on the vancomycin so I believe it is due to my body fighting this infection on it’s own. These 2 issues (pain and fatigue) are an area of contention with me and my doc and I’m trying to decide on whether to find another doctor. He says he doesn’t think it’s specifically related to my current cdiff, but rather the past surgery and colitis and illness all together over the past 4 months. I know it’s due to my current cdiff (won’t spend another long paragraph here explaining, but I know for certain).
Now I’m mild-moderate relapsing - I finished my 30 days of Questran and within 36 hours of the last dose I was having rapidly increasing symptoms again (pain, mucous, pus, cdiff odor, etc.); doc agreed I should go back on it, but we’d try 1/day instead of 2 because I’d started having motility issues. (Since going back to work my low back has returned to it’s previous unbearable pain state so I’ve had to start taking the Lortab again, which is a ‘no-no’ drug with CDiff). But the last 2 days have been much worse pain-wise and my abdomen is very tender to the touch and my ear is fluid-filled and hurting again, just like all my past major relapses. So I’m back on 2 pkgs. of Questran a day (and hoping that is all the problem!). Disappointing. Hoping it doesn’t become a full-blown episode. W W W. sigh.
I began the Questran at 2 pkgs. a day on 10/6 and it helped a lot as far as no d. but I’ve still had the continuous abdominal pain/stinging but it was getting better, albeit extremely slowly. It feels like there are actually ‘sores’ in there. Fatigue is a big issue, I didn’t have the fatigue when I was on the vancomycin so I believe it is due to my body fighting this infection on it’s own. These 2 issues (pain and fatigue) are an area of contention with me and my doc and I’m trying to decide on whether to find another doctor. He says he doesn’t think it’s specifically related to my current cdiff, but rather the past surgery and colitis and illness all together over the past 4 months. I know it’s due to my current cdiff (won’t spend another long paragraph here explaining, but I know for certain).
Now I’m mild-moderate relapsing - I finished my 30 days of Questran and within 36 hours of the last dose I was having rapidly increasing symptoms again (pain, mucous, pus, cdiff odor, etc.); doc agreed I should go back on it, but we’d try 1/day instead of 2 because I’d started having motility issues. (Since going back to work my low back has returned to it’s previous unbearable pain state so I’ve had to start taking the Lortab again, which is a ‘no-no’ drug with CDiff). But the last 2 days have been much worse pain-wise and my abdomen is very tender to the touch and my ear is fluid-filled and hurting again, just like all my past major relapses. So I’m back on 2 pkgs. of Questran a day (and hoping that is all the problem!). Disappointing. Hoping it doesn’t become a full-blown episode. W W W. sigh.
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Sheila1
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I went back to the GI doc for a final check in...for the 3rd time he insisted my remaining symptoms were not from the cdiff, but the surgery I had in July - for the 3rd time I insisted the surgery was history and never did cause any problems. I asked him to run some more tests and to run some blood work (since no blood work had been done since I was in the hosp. in July) and he just said to see my PCP.
I was almost in tears and thinking my PCP would know next to nothing about cdiff - what a pleasant surprise to find out she knows more about recurrent symptoms/problems that it seems my GI doc does. She immediately ordered some blood work and wants another sample tested. She also thinks I should be scoped again but will wait and see what the tests show first - I'm really leery of cleaning out what good bacteria I've built back up...
So I had to go off the Questran for a few days for the test and have been tensely walking a tight rope doing the w.w.w. But so far (day 7 with no meds. at all), only my nausea fatigue have gotten much worse, the pain and occasional cramps have only gotten a little bit worse - so I'm not doing too bad all in all! Now my bowels have decided not to cooperate for the test, it seems they have to have time to adjust to every little change now...
I'm still concerned about the pain I continue to have, it feels like sores in my intestines; doesn't feel like IBS symptoms or just gas pains or whatever and is generally in the same spots, doesn't move. Kinda like I can feel food move by those areas or something (ie. ketchup on a split lip). Don't know if that makes sense. To the left of my belly button, to the right and below my belly button; and the 2 upper corners of my colon (yes, it's that specific). Often, on a bad day, it feels like the tissues in my abdomen hurt, the pain isn't as deep as my intestines but deeper than skin...(if anybody has something similar, please PM me). My PCP mentioned a possible gluten sensitivity has evolved, haven't studied on that yet or the symptoms. But I don't think so because I've tried not eating vs. eating and it doesn't seem to make a difference.
Having arthritis issues, areas I've never had arthritis and worse than ever...will be talking to her about that on my next visit - I had so much to cover with her the first visit that I totally forgot it.
I went back to work part-time the first of November and back full-time 2 weeks ago. I'm exhausted each day when I come home but I know that will get better. It is good to have my mind busy on other things and to be looking at a different set of walls. Kind of feel like I'm hanging just a foot or so above the end of the rope, but I'm hanging!!
A side note...I got sick in mid July and lost my whole summer, only vaguely recall July and August when I was deathly ill and September/October are a hazy memory of relapse and sleep and constant pain. Now I've 'awakened' and it's Christmas. Very odd feeling. Feels like the movies where someone has been frozen for a 100 years and then 'poof' they're alive. It's not a pleasant feeling.
This Christmas season (and it is CHRISTmas, not 'holiday'!), more than ever before, I'm reminded that it could always be worse, that good can come from every trial, that it's great to be alive, that the support and love of family and friends is invaluable; and that - without the first word in CHRISTmas, it would all be for nothing.
Wishing everyone on the site a blessed and pain-free Christmas and a New Year filled with healing and health!
~Sheila
I was almost in tears and thinking my PCP would know next to nothing about cdiff - what a pleasant surprise to find out she knows more about recurrent symptoms/problems that it seems my GI doc does. She immediately ordered some blood work and wants another sample tested. She also thinks I should be scoped again but will wait and see what the tests show first - I'm really leery of cleaning out what good bacteria I've built back up...
So I had to go off the Questran for a few days for the test and have been tensely walking a tight rope doing the w.w.w. But so far (day 7 with no meds. at all), only my nausea fatigue have gotten much worse, the pain and occasional cramps have only gotten a little bit worse - so I'm not doing too bad all in all! Now my bowels have decided not to cooperate for the test, it seems they have to have time to adjust to every little change now...
I'm still concerned about the pain I continue to have, it feels like sores in my intestines; doesn't feel like IBS symptoms or just gas pains or whatever and is generally in the same spots, doesn't move. Kinda like I can feel food move by those areas or something (ie. ketchup on a split lip). Don't know if that makes sense. To the left of my belly button, to the right and below my belly button; and the 2 upper corners of my colon (yes, it's that specific). Often, on a bad day, it feels like the tissues in my abdomen hurt, the pain isn't as deep as my intestines but deeper than skin...(if anybody has something similar, please PM me). My PCP mentioned a possible gluten sensitivity has evolved, haven't studied on that yet or the symptoms. But I don't think so because I've tried not eating vs. eating and it doesn't seem to make a difference.
Having arthritis issues, areas I've never had arthritis and worse than ever...will be talking to her about that on my next visit - I had so much to cover with her the first visit that I totally forgot it.
I went back to work part-time the first of November and back full-time 2 weeks ago. I'm exhausted each day when I come home but I know that will get better. It is good to have my mind busy on other things and to be looking at a different set of walls. Kind of feel like I'm hanging just a foot or so above the end of the rope, but I'm hanging!!
A side note...I got sick in mid July and lost my whole summer, only vaguely recall July and August when I was deathly ill and September/October are a hazy memory of relapse and sleep and constant pain. Now I've 'awakened' and it's Christmas. Very odd feeling. Feels like the movies where someone has been frozen for a 100 years and then 'poof' they're alive. It's not a pleasant feeling.
This Christmas season (and it is CHRISTmas, not 'holiday'!), more than ever before, I'm reminded that it could always be worse, that good can come from every trial, that it's great to be alive, that the support and love of family and friends is invaluable; and that - without the first word in CHRISTmas, it would all be for nothing.
Wishing everyone on the site a blessed and pain-free Christmas and a New Year filled with healing and health!
~Sheila
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Sheila1
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---from Feb. 15, 2007 posting ---
Finally got the referral I asked for to an Infectious Disease doctor. I had called around various offices asking for nurses, then asking them if any of the doctors were extremely familiar with recurrent, relapsing cdiff. This office hesitated (hesitation due to hippa I believe) but when I said it would be a huge waste of both my time and the doctor's if they didn't have experience with it, then they said "yes."
I'm thrilled to say I finally had my appt. with her and she is extremely knowledgeable in the disease and where it is today and with my lingering symptoms. I'm so happy to have found a doctor who knows something about this disease and 'pooh-poohed' things the GI doc said (which I already knew were incorrect statements)! She has patients with the long-time recurrent form of the disease and has been working with Va. Tech on various trials and studies. She was knowledgable in the latest treatments and what is on the horizon. She also confirmed that Roanoke has been confirmed to have the epidemic strain present (though Virginia is not listed on the CDC site yet).
And she didn't tell me "it can't be cdiff"!!
She ordered a slew of tests, some of which will be a new trial test (I didn't think to ask her what it was called, but she said it is supposed to be more sensitive and accurate than the EIA). She ordered a contrasting CT scan too to be sure nothing 'visible' is going on with either my prior surgery or the cdiff. And took about 8 vials of blood to check umpteen things in addition to a complete WBC.
She is thinking over whether to do any treatment at this point, and isn't sure if we want to 'overkill' and try another round of vanco or try something else, and will wait on the labs to come back and the CT results before moving forward - if at all.
She spent over an hour with me and was very thorough. She was extremely kind, understanding and spent time explaining things; without being the least condescending. In short, she was great and just what I was hoping to find! I'm just so thrilled to have someone who trusts me to know my symptoms and on whom I can call on a moments notice and say "I'm sick" and get action right away. That alone provides a huge sense of relief. (I am not generally a 'cryer' but I was so overwhelmed with relief and joy at finding someone knowledgeable that it was all I could do not to cry... you guys will understand that!)
Those of you without good medical care - don't give up. Keep checking around and speaking with nurses until you find a doctor with knowledge and experience. They're out there, it just isn't common knowledge (none of my other doctors were even aware of her, I asked for the referral).
By the way, she told me one of her patients who has had cdiff, bad, for 2 years was successfully cured just recently with a long taper of Vanco (3 mos. or so) and a Rifaximin chaser for another month or so. She admitted that "it may not work for everyone, but it sure worked for that patient."
After my next visit when I gain a bit more info. I might go ahead and post her in the doctor's section. But for now, we'll wait and see. If anyone is close by and wants her info. now, just PM me and I'll pass it along.
Finally got the referral I asked for to an Infectious Disease doctor. I had called around various offices asking for nurses, then asking them if any of the doctors were extremely familiar with recurrent, relapsing cdiff. This office hesitated (hesitation due to hippa I believe) but when I said it would be a huge waste of both my time and the doctor's if they didn't have experience with it, then they said "yes."
I'm thrilled to say I finally had my appt. with her and she is extremely knowledgeable in the disease and where it is today and with my lingering symptoms. I'm so happy to have found a doctor who knows something about this disease and 'pooh-poohed' things the GI doc said (which I already knew were incorrect statements)! She has patients with the long-time recurrent form of the disease and has been working with Va. Tech on various trials and studies. She was knowledgable in the latest treatments and what is on the horizon. She also confirmed that Roanoke has been confirmed to have the epidemic strain present (though Virginia is not listed on the CDC site yet).
And she didn't tell me "it can't be cdiff"!!
She ordered a slew of tests, some of which will be a new trial test (I didn't think to ask her what it was called, but she said it is supposed to be more sensitive and accurate than the EIA). She ordered a contrasting CT scan too to be sure nothing 'visible' is going on with either my prior surgery or the cdiff. And took about 8 vials of blood to check umpteen things in addition to a complete WBC.
She is thinking over whether to do any treatment at this point, and isn't sure if we want to 'overkill' and try another round of vanco or try something else, and will wait on the labs to come back and the CT results before moving forward - if at all.
She spent over an hour with me and was very thorough. She was extremely kind, understanding and spent time explaining things; without being the least condescending. In short, she was great and just what I was hoping to find! I'm just so thrilled to have someone who trusts me to know my symptoms and on whom I can call on a moments notice and say "I'm sick" and get action right away. That alone provides a huge sense of relief. (I am not generally a 'cryer' but I was so overwhelmed with relief and joy at finding someone knowledgeable that it was all I could do not to cry... you guys will understand that!)
Those of you without good medical care - don't give up. Keep checking around and speaking with nurses until you find a doctor with knowledge and experience. They're out there, it just isn't common knowledge (none of my other doctors were even aware of her, I asked for the referral).
By the way, she told me one of her patients who has had cdiff, bad, for 2 years was successfully cured just recently with a long taper of Vanco (3 mos. or so) and a Rifaximin chaser for another month or so. She admitted that "it may not work for everyone, but it sure worked for that patient."
After my next visit when I gain a bit more info. I might go ahead and post her in the doctor's section. But for now, we'll wait and see. If anyone is close by and wants her info. now, just PM me and I'll pass it along.
~Sheila
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Sheila1
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Have met again with both the ID doc and the GI doc called me. The the results of the colonoscopy were all good and the biopsy results showed nothing going on at this time, though there was evidence of past trauma. The labs showing a bit of something still going, along with the CT scan, the GI doc believes my continued pain is a particular type of IBS called Post-Infectious IBS (PI-IBS). Caused from hypersensitive nerves and tissues that sometimes occur after severe gastrointestinal illness/trauma. (Thank you cdiff!)
The pain is not like any other temporary IBS symptom I've ever had (usually related to eating something I shouldn't have); it truly feels like a periodic stinging pain like there are wounds in a few places (hence it didn't cross my mind it could be IBS). So I've done a bit of study on it (very little bit) and it sounds like it's as likely as anything, and PI-IBS is different in several ways than "general" IBS. The good news is full healing occurs in most cases but can take from 6 mos. to 2 years. Just being assured there's nothing going on in there that could be causing some real serious damage over time has eased my mind alot.
The ID doc doesn't want to treat me again at this point (and I whole heartedly agree!) for fear of upsetting more than fixing. We don't want to kill out what good bacteria has finally built back up.
After reading up on SIBO it really sounds more like my symptoms fit that description...I've begun taking FloraQ again, 2/day for a couple weeks then will change to 1/day and see how things are in 30 days. I have realized that for the past couple months of being "well" I was able to eat things without any intolerance, before cdiff I could not eat them without issues. Just in the past couple weeks I've suddenly started showing an intolerance to these foods again (probably a backwards reaction from 'the expected'). So am doing a trial of the FloraQ to see if it was the probiotics that eliminated the intolerance... I did ask the GI doc about a hydrogen breath test for SIBO and he said they don't test for it, they just treat for it and if it works, it works. So, I assume they don't have the ability or equipment to test for it. Since treating for it is basically either Xifaxan and/or probiotics, I'm just going to try the probiotics and see what happens.
Otherwise I'm about 90% back to normal - and that's something for which I'm hugely thankful! That, and a good doctor on whom I can call if I do get sick again. To everyone currently suffering - hang in there - it really does get better.
If you don't have a good, knowledgeable, doctor don't give up - keep calling around and checking and you will find one. If not, keep printing articles (available from links on this site) and giving them to your doctor until your doctor IS educated about the disease.
The pain is not like any other temporary IBS symptom I've ever had (usually related to eating something I shouldn't have); it truly feels like a periodic stinging pain like there are wounds in a few places (hence it didn't cross my mind it could be IBS). So I've done a bit of study on it (very little bit) and it sounds like it's as likely as anything, and PI-IBS is different in several ways than "general" IBS. The good news is full healing occurs in most cases but can take from 6 mos. to 2 years. Just being assured there's nothing going on in there that could be causing some real serious damage over time has eased my mind alot.
The ID doc doesn't want to treat me again at this point (and I whole heartedly agree!) for fear of upsetting more than fixing. We don't want to kill out what good bacteria has finally built back up.
After reading up on SIBO it really sounds more like my symptoms fit that description...I've begun taking FloraQ again, 2/day for a couple weeks then will change to 1/day and see how things are in 30 days. I have realized that for the past couple months of being "well" I was able to eat things without any intolerance, before cdiff I could not eat them without issues. Just in the past couple weeks I've suddenly started showing an intolerance to these foods again (probably a backwards reaction from 'the expected'). So am doing a trial of the FloraQ to see if it was the probiotics that eliminated the intolerance... I did ask the GI doc about a hydrogen breath test for SIBO and he said they don't test for it, they just treat for it and if it works, it works. So, I assume they don't have the ability or equipment to test for it. Since treating for it is basically either Xifaxan and/or probiotics, I'm just going to try the probiotics and see what happens.
Otherwise I'm about 90% back to normal - and that's something for which I'm hugely thankful! That, and a good doctor on whom I can call if I do get sick again. To everyone currently suffering - hang in there - it really does get better.
If you don't have a good, knowledgeable, doctor don't give up - keep calling around and checking and you will find one. If not, keep printing articles (available from links on this site) and giving them to your doctor until your doctor IS educated about the disease.
~Sheila
-
Sheila1
- Long Time Contributor
- Posts: 468
- Joined: Sat Aug 26, 2006 4:04 pm
Last update here I think... I'm now at 128 days no meds. and no relapse. Hooray!
It appears my cdiff was mild enough, after testing positive again when I finished the Vanco, that Questran took care of the last of it and allowed my body to build up it's own defenses again. I haven't posted earlier as I still have abdominal pains and bloating that really feel very similar to the mild cdiff, but I suppose is just IBS. Since the recent tests by my ID doc showed there were still some issues, I was waiting to see what happened. But I'm at the point where I shouldn't have to worry about cdiff relapse anyway, and that's a relief.
It appears I'll be one of those who does not return to pre-cdiff status, intestinally-speaking. IBS is easier to deal with though and there are plenty of meds. to help with it.
I'm walking again and exercising and working on getting my physical strength back up to where it was...and hoping to be riding the horses again before too long!
I know eventually my fear of 'leaving home alone' will dissipate (right now I only travel with my hubby, afraid of going away somewhere, or travelling for work, without family present to help out if I get sick again). That's as much mental now as anything else I think....you all know the fear that happens when a 'pain' hits....the "Oh my gosh, is this a relapse!?" thing. This too shall pass!
I have printed pages and pages of studies and articles and created a notebook on cdiff to help with creating an article to write later as well as to develop a seminar on hospital infections to present to my elderly residents and possibly other elderly residents, and their caretakers, at a later date. I am working on a 'patient handout' kind of thing based on these articles, to distribute to doctors and hospitals (if they'll use them...).
No one, absolutely no one, should have to go through what so many here have - an uneducated medical staff improperly treating the disease and/or lack of belief that "it's" back. No one should have to come to this site and say they learned more here than from their GI doctor.
My motto - "stamp out CDiff ignorance"
Eight months ago I read statements from the moderators and some regular members saying "it really does get better" and "eventually it does go away" and couldn't really fathom it in my post-septicemia state, nor after relapse upon relapse ...but they were right. It just took time. And patience. Thank goodness for their experience, their knowledge, their willingness to share, and their time spent answering questions and giving support. To all of you - your many kindnesses will not be forgotten.
God bless,
It appears my cdiff was mild enough, after testing positive again when I finished the Vanco, that Questran took care of the last of it and allowed my body to build up it's own defenses again. I haven't posted earlier as I still have abdominal pains and bloating that really feel very similar to the mild cdiff, but I suppose is just IBS. Since the recent tests by my ID doc showed there were still some issues, I was waiting to see what happened. But I'm at the point where I shouldn't have to worry about cdiff relapse anyway, and that's a relief.
It appears I'll be one of those who does not return to pre-cdiff status, intestinally-speaking. IBS is easier to deal with though and there are plenty of meds. to help with it.
I'm walking again and exercising and working on getting my physical strength back up to where it was...and hoping to be riding the horses again before too long!
I know eventually my fear of 'leaving home alone' will dissipate (right now I only travel with my hubby, afraid of going away somewhere, or travelling for work, without family present to help out if I get sick again). That's as much mental now as anything else I think....you all know the fear that happens when a 'pain' hits....the "Oh my gosh, is this a relapse!?" thing. This too shall pass!
I have printed pages and pages of studies and articles and created a notebook on cdiff to help with creating an article to write later as well as to develop a seminar on hospital infections to present to my elderly residents and possibly other elderly residents, and their caretakers, at a later date. I am working on a 'patient handout' kind of thing based on these articles, to distribute to doctors and hospitals (if they'll use them...).
No one, absolutely no one, should have to go through what so many here have - an uneducated medical staff improperly treating the disease and/or lack of belief that "it's" back. No one should have to come to this site and say they learned more here than from their GI doctor.
My motto - "stamp out CDiff ignorance"
Eight months ago I read statements from the moderators and some regular members saying "it really does get better" and "eventually it does go away" and couldn't really fathom it in my post-septicemia state, nor after relapse upon relapse ...but they were right. It just took time. And patience. Thank goodness for their experience, their knowledge, their willingness to share, and their time spent answering questions and giving support. To all of you - your many kindnesses will not be forgotten.
God bless,
~Sheila
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