Tag Archives: Cdiff infection

C diff Survivor Sharon Shares Her Journey With Fellow Survivors

Posted in Survivor Experience by

CdiffSurcicorsLOGO2015My story all started with an emergency room visit for a blockage in my common bile duct in October 2014. Things catapulted into a nightmare that is still continuing today. I had an ERCP to place a stent into my bile duct at Stanford. I developed Sepsis, Pancreatitus and I went into full organ failure as a result. I was in ICU for 48 hours.

A week later I had my gallbladder removed with a full surgical cut. I then developed pneumonia. My hospital stay was almost 2 weeks. I went home completely unconditioned and very weak. I spent the next two months healing. In mid December I had my incision burst open from an abdominal wall abscess. I had to have the incision opened up all the way to  the abdominal wall and it had to heal all over again. For all these ailments I was treated with a slew of antibiotics via IV and tablets. I did not know I was being dosed into hell.  Near the end of December I went back to Stanford for them to remove my  stent via an ERCP procedure. This makes me so angry and upset when I think about it. About 8 days later I started having stomach pain and unstoppable diarrhea.

My GI Doc did a stool sample and blood work and gave me the diagnosis that I had contracted C.diff. I did not realize just how serious this can be. He prescribed Flagyl and I took it religiously and followed all doctor’s orders on taking the exact probiotic etc. I finished the Flagyl and four days later the diarrhea started all over again. I was going 20 times a day. I called him right away and he put me on Flagyl again. This time for a longer period. I finished that course and again I was clear for about 5 days when the severe diarrhea took hold. I was again going about 25 times in a day. I lost 7 pounds in 3 days. I got hold of him and he wanted me to do a Sigmoidoscopy. He prescribed Vancomycin and 2 doses took away the harsh symptoms. By the time I did the Sigmoidoscopy there was not a trace of C.diff. or any kind of colitis. So I diligently finished the vancomycin after 21 days. I was free for exactly 4 days when I started having gas and nausea. By the third day I was again in the bathroom 20 plus times but this time I was in excruciating pain.

He scheduled a colonoscopy but when he saw that my WBC were over 16 000 and my stool sample came back positive he cancelled it. I was in so much pain I actually took Norcor and I was ready to ask my hubby to take me to the hospital. Again with the diarrhea and the colonoscopy prep I lost 3 pounds in a day. He consulted with an infectious disease specialist and he has me on a long course of Vancomycin and it is stepping down the dosage every week until the end of April.

I then have to take another medicine that binds bile salts for a month. This has truly been a nightmare. It rules my life. I have good days and then I have bad days. I am struggling with nutrition because I still have an incision that is not fully healed 5 months after surgery.

I am supposed to be mindful of getting enough protein but the C.diffl takes away my appetite. I get very angry that this has happened because someone did not do their job properly and I was exposed to dirty endoscopic equipment. This has caused me so much misery and pain. I have missed so many things at my son’s school. I have to sometimes ask my hubby to rearrange everything at work so that he can go and pick up the kiddo. It ruins plans for outings and dinner dates as I never know if I will feel strong enough to go out.

This should never happen to anyone. The best was my GI doc canceling the colonoscopy and telling me I am highly contagious and it would be better to not expose anyone having a procedure after me. If only I had been given the same consideration. I am at such a low ebb with this struggle. I am already panicking about it coming back after I am done with this round of Vancomycin.

We will be leaving on a family trip two weeks after I finish this round of medication and I am scared it will come back while I am away from home. I have been having severe panic attacks and I cannot stop worrying about it. I am thankful that I found the C Diff Foundation  on Facebook and webpage.  It has been so helpful.

I have told my GI that next time I am ready to try the fecal transplant option. I just want this to be done. Five months of hell and 3 relapses  and I have lost 30 lb….the only good thing.

Hope For The Holiday Season

Posted in Healing by

candleThere Is Hope For The Holidays

 

If you or a loved one has been affected by a catastrophic illness or the fight of combating a C.diff. infection, or any long-term illness, the holiday season might not feel like the “most wonderful time of the year.”

 

Instead of joy, one may be struggling with sadness, grief, or anxiety that you won’t be spending the holidays in your own old fashion ways. There may be worries about money, time, or energy to partake in the holidays. There are ways to help make the most of the holiday season.

Begin with setting realistic goals, starting new holiday traditions, and calling for help when you need it is the first step in helping one to cope. Below are several tips from mental health experts that we hope will be useful to anyone in distress while fighting any illness.

Set Realistic Goals: This may not be the best holiday but with a positive outlook, and the support of family and friends, one can still make the most of it. Adapting to setbacks after or during an illness can cause stress, anxiety, and sadness. Try to be realistic about gift-giving and affordability and what can be done around the holidays, and share your thoughts with friends and family. Being honest about feelings and the present circumstances can help you better cope and give everyone the chance to have a better understanding. Make time to have a conversation will be very beneficial.

Start New Traditions: If you are celebrating the holidays away from your own home or away from loved ones, start a new tradition to help yourself and your family adjust to the changes. Activities like singing holiday songs or reading books aloud can help you maintain a positive outlook. Trying something new can create positive results. The new traditions will help create something special.

Surround Yourself with Support: The holidays can be a difficult for adults and children. When an individual is feeling down, lacking energy, in pain, combating an infection of any kind – one tends to isolate themselves. Do the best to avoid too much alone time, and talk to someone about how you are feeling. You are not alone and there are local numbers available in all areas to call for confidential crisis counseling and emotional support.

CONTACT USA (CUSA) is a network of crisis intervention helpline centers across the nation providing help by telephone and online chat for those in need of help.

http://www.contact-usa.org/programs.html

 

Treat Yourself with Care: It is important to pay attention to your own needs and feelings. Doing so will help you cope with stress caused by the holidays. If you are a parent or caregiver, it is important for you to take care of your needs first. Then you will be better able to take care of those who depend on you.

Reach Out for Help: Recovery takes time after a loss and even an illness – it is common to feel a lot of different emotions – anger, sadness, anxiety, confusion, guilt, and bitterness.  You are not alone.

 

Take it one-day-at-a-time………. live life in the moment and take it one step at a time.