When should I start to Worry?

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Microbio
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Joined: Mon Jan 08, 2018 7:59 pm

When should I start to Worry?

Postby Microbio » Mon Jan 08, 2018 8:39 pm

Hello,

I am a 23-year-old female in relatively good health. Or was. I don't really get fevers or throw up, which led a doctor to send me home. When I went to the ER days later I got diagnosed appendicitis. The surgery went fine and they sent me home with antibiotics, which I took. They also said that I should be taking stool softeners because of the pain meds (which I stopped taking when I could-they made me nauseous). They insisted I take those stool softeners so I did for a couple days. They really cleaned me out.
I healed for about two weeks and then had an onset of D that sent me to the bathroom 7 times (as opposed to the normal 1-3). It was probably 5-6 days before I got the treatment/diagnosis of c diff. I also got anal fissures from the whole ordeal. It felt like a period from hell, with the frequent bathroom trips and cramping. They gave me 125mg of vanco, every 6 hours for 10 days. I started feeling better about 3-4 days after, and had normal BMs until a day or two off antibiotics. I had D always, but it 1-2 times a day. When it worked up to 6 times within 7 hours I went to see a doctor again, and I'm on another round of antibiotics, same course as before.

My concern is that I feel really sore where I think my colon is. Mostly on the right and left sides. The right side is pretty close to where I felt the pain for appendicitis. My appendix was perforated, but i didnt feel super sharp pain. It feels similar to the dull ache I have right now.

The possible ("rare") Complications of c diff terrify me. Also the fact that if I can get through this, any time I ever have to take antibiotics could mean this whole thing again. If it's damaged me this young, how much longer can I expect to live?

Is there anyone else out there who got c diff after an appendectomy? Or got it this young?

MKW
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Re: When should I start to Worry?

Postby MKW » Mon Jan 08, 2018 9:18 pm

Hi, I am a fellow sufferer, 10 months post successful FMT. This Board is a wealth of information. You should read through treatment options like the Vanco taper/pulse and about Dificid, which would likely be next course of treatment for you if it doesn’t go away this time.
I wanted to tell you there is a poster on here who goes by amg I believe, whose teenage daughter had recurrent c Diff after an appendectomy. You may want to search for her earlier posts for information. Since I have been on this board, about a year and a half there have been many younger posters. My daughter has a friend who is 20 that has had this following gallbladder surgery.
Also I wanted to tell you don’t be afraid so much about the future because you are young. There are many new treatment options being developed to treat c Diff, some of which are in stage 3 clinical trials now. So, there is hope on the horizon for people like us. C Diff is the number one hospital acquired infection now, so there is a lot of money and research being put into treating and preventing it.

georgina
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Re: When should I start to Worry?

Postby georgina » Tue Jan 09, 2018 1:41 am

At this point your colon can be sore from the damage that Cdiff had upon it or it can be due to your surgery. Many people that had Cdiff are left with a irritated colon for awhile and takes a few weeks until it gets better. Are you keeping a bland diet? Who is looking after you? If you don't have a GI specialist I would suggest you go make an appointment with a knowledgeable GI doctor.

Microbio
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Re: When should I start to Worry?

Postby Microbio » Tue Jan 09, 2018 3:30 am

Thanks so much for the reassurance. I majored in microbiology in college, so I know how dangerous some bacteria can be.
After the first infection's antibiotics were done, I got all sorts of probiotic food (miso, yogurt, kombucha). I also had well cooked root veggies (sweet potatoes, parsnips, carrots, turnips) and cooked apples.
I was trying to work in some normal food too, but since I got D. I eventually tried to cut out most gluten, dairy and excess sugar.
My GP at the time said to go to the BRAT diet, but shortly after I had frequent D and just went back, and the Doctor on-call for the walk in clinic gave me another round of vanco.
They also suggested that I talk to a gastroenterologist about post-infectious IBS. I have an appointment next week.
But it's been nearly a month since my surgery, and I didn't feel pain for awhile, until the second round of c diff, which worries me. It still feels sore now, like when my appendix was perforated. Everything online say the pain is supposed to be unbearable. Hopefully I'm just worry for nothing...

amg
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Re: When should I start to Worry?

Postby amg » Tue Jan 09, 2018 1:44 pm

Hi there,

Oh, you poor thing. My daughter did contract c diff after her appendectomy. At the time, she was 14, very healthy, a high school athlete etc. But she had been given a few antibiotics at the time of the surgery (as is standard practice per her surgeon), and a week later she was in the ER with fever, chills, diarrhea, abd discomfort and extreme fatigue -- c diff.

I've since found that certain things put you at risk for c diff, and those include abdominal surgery. In fact, people with appendectomy are more likely to contract c diff and subsequent relapses. There is speculation that the appendix functions as a repository for "good" bacteria for your gut, which is crucial to keep c diff in check. If your good bacteria is obliterated by antibiotics, and your appendix is not there to help repopulate your gut with the good guys, then you can get into a cycle of recurrences. And, unfortunately, each recurrence gives you a higher chance to recur again. :( (20% relapse rate overall for first time c diff, but if you relapse your chance for another relapse increases to 65%)

So my daughter relapsed 4 times, 2 on vanco and 2 on Flagyl. She was set up for FMT when we discovered a method that c diff specialists at Loyola Med Center in Chicago were using for recurrent c diff that wasn't responding to standard med regimens.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4281782/

We convinced our ID doc to give my daughter a Dificid course followed by a taper. And she was cured! It's been something like 420 days since her last Dificid tablet and she's back to sports and feeling well. She still has what we think is post-infectious irritable bowel, especially at "that time of the month", and she's still afraid of eating certain foods that didn't agree with her after c diff, but she's improving each day.

The thing about Dificid for my daughter, as compared with Vanco, is that her stool never really normalized on Vanco (or Flagyl). But with Dificid, it firmed up within 2 doses, and a little later in the course seemed normal and she felt so much better right away. She had no side effects from the Dificid.

It is very important to distinguish a relapse from post-infectious IBS. You don't want to let yourself get too sick with a relapse before treating. We helped distinguish my daughter's relapses from IBS by looking at the constellation of symptoms she had with c diff - extreme fatigue, mild temps and chills, pale face, puffy abdomen, loose stool that continues to get looser, not improving then getting loose again. Everyone has some symptoms they felt with c diff that aren't present with simple IBS.

If you aren't responding very well clinically to another course of the same Vanco, then you might want to discuss options with your doctor including the above Dificid taper regimen. My argument to our ID doc was that my daughter needed more time to rebuild her own good gut flora, given her circumstances, and because the Dificid targets c diff more closely and very much spares the good bacteria, as well as having anti-spore activity, then a taper of this medicine would allow her the best chance to break the cycle. And it did!!

The biggest thing to keep in mind right now is that you are YOUNG and you were healthy before this, and there are good treatment options out there for you to BEAT THIS. You will beat this. It's hard to believe that in the midst of it, but some day you will also be looking back on these days and feeling healthy. My daughter says her months battling c diff gave her a great new perspective on health and how to appreciate the "small" things in life that she took for granted. You will get there, but you have to be a strong advocate for your own health, and unfortunately you might sometimes have to introduce docs to creative therapeutic approaches that are scientifically sound but not yet widely known in the medical community.

Good luck!!


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