C-Diff Warning

I arrived here two weeks ago today at UCLA and it has been a long two weeks.  I am homesick.  I want to be in my own bed and my own house where I am most comfortable.  But I have persevered this long stay in hopes my life and health will improve.  It hasn’t been easy.

It was three months ago since my fascia sling surgery and I have battled my way through not just healing from surgery, dealing with doctors and co-coordinating my care through the pseudomonas infection, getting through self cath with my remaining injuries of nerve damage in my right leg and all the time I try to keep my own spirits up to get through it.  Several days ago a woman actually told me to get a hobby other than this blog, which is laughable.  I don’t do hobbies.  I have a business that has lacked attention through three surgeries and the help I give to other women.  I WANT my life back and yet every time I think I am getting closer, I have to fight yet another battle.

I could do what this woman says.  Ignore this blog and not share with you my latest issue, but then once again who will warn women of the pitfalls of mesh complications.  Endless pitfalls I may add.  I know she won’t and neither will others.  So regardless of a few bad comments aimed at me, I am mindful of the thousands of women this will reach and the lessons I and others have learned, so I will share with you in hopes I can keep you from going through more hell.

Last Tuesday I had surgery once again in hopes I will find relief from self cath night and day.  I was worried about having surgery so soon after the last and part of me hoped I would not need it.  I had to come here for tests because no urologist doctor in the Houston area will have anything to do with me let alone do the tests I needed.  So whatever it cost I had to move forward and make this trip.  Tests done, it was decided I had some issues that needed help and perhaps cutting the new fascia sling in the  center will release by bladder enough so that I can urinate at least enough to have a normal life, with self cath only part time.  I hope it will work and Monday morning I will see Dr. Kim and have the catheter removed and discuss my surgery.  I am guardedly hopeful.  To get one’s hopes up only to be dashed is very hard indeed, so I am in wait and see mode.

After the surgery last Tuesday I stayed overnight in day surgery and then came back to my hotel room.  It was a much less invasive procedure that the other two surgeries I have had here and I knew to rest, eat small meals and begin taking my supplements to get back on the road to better health.  I had bought salad and raw veg along with juices and planned to get back to normal as quickly as possible.  That did not go to well however.  The first night I awoke with stomach cramps
and diarrhea.  I have never had any bowel issues because of mesh and this to me was a huge warning.  I had C-Diff.

Before you jump to conclusions you need to understand that this has happened to other women around the country both before and after mesh removal.  We are all highly vunerable due to overuse of antibiotics due to infections from mesh.  Various antibiotics are handed out like candy whenever a culture result comes back for e coli and other infections are discovered.  We take them to try to get well and they wipe out all the good flora in our bodies.

I have been aware of the seriousness of overuse of antibiotics and before this last surgery it was my biggest fear.  I had been taking antibiotics far too much since the fascia surgery and I hated every minute of it, so I took more than usual probiotics to combat the issue.  The only day I missed was the day of my surgery last Tuesday.  But during my hospital stay I was given I.V. antibiotics which pushed me over the top.

I really don’t need to give you a link for you to read about antibiotics and C-Diff because they are everywhere on the Internet.  But this will explain why we as mesh injured women have to be so aware of the dangers we face.

Antibiotics can wipe out bacteria, which can offset the balance between good and bad bacteria in the gut, setting the stage for C. diff infection.

“We know the micro-organisms in the gut is a delicate balance of good and bad bacteria, which can be disrupted by many things,” Robynne Chutkan, MD, says in an email. She is an assistant professor of medicine at Georgetown University Hospital in Washington, D.C. and founder and medical director at Digestive Center for Women in Chevy Chase, Md.

This includes the inappropriate or overuse of antibiotics, as well as changing the acidity level of the gastrointestinal tract with acid suppression. “We need to be more judicious with our prescribing patterns of these drugs,” she says.

When I say diarrhea, I don’t mean just loose stool.  I mean water.  It can be very serious and if you don’t take action quickly you will wind up in the ER dehydrated and seriously ill.  So the next morning I took action.  I may be alone here but I am responsible for my own care, so I pushed a wheelchair to Target and bought a packet of Target’s own brand ‘Up’ of loperamide HCI.  It has the same ingredient as Imodium A-D.  I knew about this product because when my husband went through prostate cancer radiation he suffered with terrible diarrhea and it was the only thing that stopped it.  So I followed the directions and took two the first time and stayed within the four guideline in a twenty four hour period.

The last few days I have felt unwell and ate a very bland diet and pushed fluids.  This morning I got up and at last I feel relief.  I know I am on the other side of this problem and I won’t wind up in the E.R.  Believe me I was worried to be out here in L.A. alone and in hospital in serious condition.  The other thing I continued taking was marshmallow root because of it’s properties in dealing with issues of the gut.  I hope I am now home free.

So my advice is to watch for the warning signs and take action immediately.  Push fluids, eat small meals of a very bland diet and rest.  Don’t let it go on until you are completely dehydrated and very ill.  I hope this will help any woman who has been on long term antibiotics either before or after surgery for mesh complications.  If so, then my sharing will be worthwhile.    Now I want to be antibiotic free for a very long time.  I want my health back and resume my life.

Update
I decided to write a little more about my own experience.  First, sometimes it does not take a rocket scientist to know when something is going wrong with your own body.  When the sling was put into me in March of 2010 I tried proving to my surgeon I had an issue and I wanted tests.  I found out getting tests done was impossible when she did not want to believe me anyway.  Plus those tests would not have proven it, although I did not know that back then.  These days I trust in how I feel and I take action instead of worrying about a test.

Yes they have a test to check if it is C-Diff, but that is usually done when the person is so bad off and fully hospitalized.  I had surgery on July 2nd then woke up the night of July 3rd with excruciating diarrhea pain.  I had been given more antibiotics via and I.V. the days before.  This was not normal for me after surgery and I usually have the opposite problem.  Pain meds make me terribly constipated.   I was alone in a hotel room in L.A. and had to rely on my own instincts.  The next morning was July 4th, a holiday.  I could have curled up in bed and worsened, called 911 to get taken to the hospital or do what I did.  As soon as Target opened their doors I had managed my way there to get some medicine to stop it as soon as possible.

The purpose of writing this blog was not to prove I had C-Diff, but to warn women this does happen with overuse of antibiotics.  I speak to so many women and one who also had a pic line for antibiotics, just like I did a week before I came to UCLA, came down with severe diarrhea.  Dr. Raz told her to stop the antibiotics and take metamucil.  He knew what was happening to her, because they see this more often than you can realize.

So forget proving it and start taking something to stop it before you wind up in the ER.   I no longer need something written on paper for me to know when something is wrong with me.  My satisfaction is to get over something quickly before it destroys my health.  I want the same for every woman which is why I wrote this blog.

12 Comments

  1. Lynn

    If you continue to have gut issues, you may want to discuss doing a course of anti-fungals. The two that come to mind and that require a prescription, are Diflucan and/or Nystatin. I think anytime a doctor prescribes an antibiotic, they should prescribe anti-fungals. Doug Kaufman, based in Dallas, of http://www.knowthecause.com, is a big believer in anti-fungals. Of course, if the C-Diff gets really bad they are now doing “fecal implants” that will cure it. Sounds gross, but when things get desperate, you have to go there. I have been following your blog and want you to know you are helping so many women out there. “Get a hobby”? Hobbies can include anything of service to others, and that’s what you are doing. Not a “hobby” you chose, of course. It’s even greater than that, you are saving lives. I’m hoping that Monday’s appointment will go VERY WELL!!

    Reply
    1. lavalinda

      Lynn fortunately I recognized what was going on because other women shared with me that they had had it and the symptoms. Speedy action can stop us going down an extreme path of serious illness. I know I will be okay but this information may be good for someone who who’s immune system cannot bounce back. Thank you.

      Reply
  2. InAz

    Many people do blogs as a hobby that usually does not save lives, maybe assist others to find certain foods or clothes trends of whatever else but your blog can teaches and help others to avoid from suffering even more than they already are. As you already know, you are doing the right thing for so many. And as you write your blogs I am guessing it can be thearaputic for yourself too, to write your own experiences. You can look back and read all the trials and tribulations of this mesh hell. Thank you for choosing to take the time to share.

    Reply
    1. lavalinda

      InAz Yes it is therapeutic because it clears away some of my frustrations and anger. It is also a documentation of how mesh affects women everywhere. These complications are not a simple fix as manufacturers and doctors who put them in, would like the world to believe. They continue to plague us and take away productive and capable lives of women. Everything that happens to me has happened to others before me. There are ways to ensure less stress and pain on our bodies and we find those ways by sharing with each other.

      Reply
  3. SojournerPA

    Linda,

    Get Florastor. Look online for coupon and price shop. I found a $12 difference in price among major retailers.

    This is more than a hobby, this is your mission to help others. Keep up the good work for without you so many of us would still be in the dark thinking we were the only ones.

    Reply
  4. Nancy Mikitka

    Hi, Linda,
    I am so sorry you had one more thing to deal with – C Diff is hard on you; let alone you are trying to heal from your surgery. You may already know about
    Saccharomyces Boulardii helping to treat C Diff. In case you haven’t heard of it I’ve posted a couple of links for more info.
    http://www.healthline.com/natstandardcontent/saccharomyces-boulardii
    http://en.wikipedia.org/wiki/Saccharomyces_boulardii
    One note of caution when taking Saccharomyces Boulardii is if you have mercury dental fillings because it can release the mercury so it is also important to take Chlorella to allow the mercury to be detoxed from your body.

    I am praying for your meeting with Dr. Kim on Monday to go well. (((hugs)))

    P.S. Like so many others, I am so glad you decided to blog your mesh experiences…doing so saved my life.

    Reply
  5. SojournerPA

    I believe the only way to know if you have C-Diff is to have your stool cultured. If positive you will receive an antibiotic such as Flagl to combat it. Having loose stools or diarrhea is not automatically C-Diff.

    Reply
    1. lavalinda

      SojournerPA, yes that is true, but it is far better to act quickly and try to prevent it from going to the point of ER and taking this stool culture. I know my own body and it was not a loose stool. It was far worse than that, so I went to work to try to stop it. What I did worked for me and this is a warning to other women. I have taken so many antibiotics for three months and even more after this surgery. It all worked against me.

      Reply
    2. Betty

      I have had several bouts of C-diff and every time I was not on an antibiotic. I also can have loose bowels, normal bowels or diarrhea. I get nauseated and cramps in my abdomen. Just really sick to my stomach. I was hospitalize 4 times. Now I believe that the bladder-mesh implant is causing this to happen to me. Now when I get feeling like I might be getting it again I go see my doctor and get the test kit. Actually I did that today. He lets me since I had it so many times. It all started for me in 2010 after my bladder mesh surgery. Think it was a couple months later or so. I’m not sure I want to have surgery to remove it. I’m afraid they won’t be able to find it.

      Reply
      1. lavalinda

        Betty I am so sorry you are going through this and I have to write a blog about an important treatment that could help you. Give me a few days and check back with me. If you go out to UCLA for surgery and have the translabial ultrasound done it is the ONLY test that will show mesh. They can help you and I would go to Dr. Raz as he is amazing. I went there and I wrote blogs about that test. Read this. http://meshangelnetwork.com/2012/10/ucla-tests-before-mesh-removal-surgery/

        Reply
  6. LYNN

    I have had c-diff three times. I found using probiotic 10 that can be bought on Amazon works great. It says to only take two but I take 2 in the morning and 2 at night.
    Here is my story and if anyone can offer any advice or help I would love to hear from you.
    To say my life is hell is an understatement. I am out of hope.
    I had a bladder tuck May 2015. It didn’t work. I am still having the same symptoms I had before the bladder tuck, which are bladder and kidney infections. I can tell that my bladder is not emptying out all the way when I pass my urine. It is holding about a cup or more of urine according to the ultrasound and urodynamic study that was done. I just had this urodynamic study done. Wow was that painful and right after that they shoved a camera up my urethra with no sedation of any kind. The worse pain I ever had at one time in my life. For two days I felt physically and mentally traumatized from it.
    I am positive the surgery didn’t work because when I examine myself I feel the bladder protruding into the vaginal canal. One of the GYN doctors I last saw wrote that I have a stage 3 bladder prolapse and state 1 to 2 uterus prolapse and stage one rectocele prolapse. She told me to go back to the doctor that did the surgery. She won’t touch me surgically.
    Before the Bladder Tuck, It took 5 years and many doctors to get diagnosed with bladder prolapse.
    After this surgery where I had the bladder tuck I have been back to this surgeon at least half a dozen times. He examines me and tells me everything looks fine. It is not fine. I am still having infections. This has been going on so long that now I am running out of antibiotics to treat these infections and now have to be hospitalized to get them intravenously. I can’t take oral antibiotics because the side effects have gotten so bad. I have went to several other doctors and they usually rush me out of the office when they discover I have already had surgery and two of them “advised me” to find another doctor. If I was seeing a urologist they tell me to go see a GYN or go back to the surgeon that operated on me the first time. I am a military vet and now using two urologist that I have no faith in. One over dosed me on antibiotics by leaving me on them for 3 years which gave me C-Diff. This same one told me to drink baking soda mixed with water when I have UTI symptoms. That made me puke and it didn’t help with the UTI symptoms at all. The other urologist says I should have my urethrae stretched and the bladder sling loosened. This will only have me urinating on myself from what I can figure. I believe the bladder tuck did not work and I need it redone or a full hysterectomy. I am at my wits end with tons of doctor bills and waiting for the next infection. I get them about every other month now. The doctors don’t want to touch me because they are worried they will be blamed and sued for the mistakes the first surgeon made. I don’t want to sue anyone, I just want to get better.
    I honestly can’t live like this much longer. Is there anyone out there with advise. I am desperate. The doctors won’t listen to me and I have worked around doctors for 30 years and I know some of the things they do to patience they want to stop coming to them. I don’t trust the 2 urologist that the Veteran’s Hospital is having me use. Their idea of stretching my urethra and loosing the bladder sling makes no sense at all. If anyone has any suggestions I would greatly love to hear from you.

    Reply
    1. Linda (Post author)

      I am going to do all I can to help you. You have served this country and should not be left like this.

      Reply

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