8 months clear - And C diff book in the works

[coneal]

Hello all,

I've followed the C. diff support forums since August of last year when both my wife and I contracted C. diff. She got it after giving birth to our daughter and being given antibiotics from multiple breast infections arising from breast feeding. I got it from her after a prophylactic antibiotic for shoulder surgery and a z-pack for a cold (oh how I've rued that dumb decision...). Victoria, my wife, recovered after two doses of Flagyl, though she continued to test positive for C. diff until just this month (she's one of those mysterious carriers we're always hearing about, I suppose). I, unfortunately, suffered through 6 relapses that didn't end until February of this year. A loooong taper is what eventually did it for me: 3 months long. Although I do think I may have jumped back on the treatment band wagon once or twice when I didn't need to. C. diff gave me IBS which acted just like C. diff for quite a while. If you're one of those C. diff recoverers who still has the multiple bowel movements and discomfort in the mornings and then feels better in the evenings, I assure you it will eventually get better. Clinical hypnosis treatments seem to be working for me. After a month and a half of treatment my discomfort is almost gone and my stool frequency is beginning to normalize.

I've often read about the need for a patient's primer on C. diff, and I promised myself that if I got over this nastiness I would write one. Well, I got over it (yes, everyone really does eventually - believe it), and with my GI as co-author, I've written the first two chapters of a six chapter book. I should point out here that my Ph.D. is in Biology, and I have been writing both fiction and non-fiction for some time, so this was a good fit for me to write. These two chapters went out along with a book proposal to multiple publishers this week, so I'm now crossing my fingers that something comes of it. Keep your fingers crossed as well, and I'll keep folks here posted.

One of the missions of the book is to give people hope during what I know from experience can be an emotionally debilitating time. To that end we are including "success stories" scattered throughout the text. If you would like your success story to be included in the book, please submit a 250 word version of it to cdiffstories@gmail.com. You are welcome to submit longer stories, but please be aware that an edited-down version of it will appear in the finished text. We will look at the stories we receive and select five or six to go in the book. Those five or six we select will be inspiring, hopeful, and contain a nugget of wisdom that helped you make it through the disease. Anyone who's story is chosen will be asked to sign a release form for publication. I'm afraid there's no money to be had in this, only the opportunity to help others. Questions about the book may also be e-mailed to cdiffstories@gmail.com, but keep in mind it may take me a while to get back to you.

I'm so thrilled to finally be joining all of you here in success stories, and for those of you who aren't here yet, I promise you you will be soon. All my life I've had the weakest, most fragile gut anyone could possibly have, and if I can make it out of the C. diff woods, so can you.

Cheers, Chris O'Neal

[trob25]

Wow, you are a doing a great service in writing this book and your "PhD" tag, co-written with a GI will go a long way in giving people a good feeling about reading your work. I just hope a publisher picks up the story, lord knows a book like this is needed out there.

Sounds like your case was worse than mine, although I dealt with the repercussions of horrific IBS for, well, an entire year, only having it resolved (hopefully) within the last 30 days (exactly 30 days today), the first 30 days I've made it without a single episode of IBS since I got C-Diff. I'd think about sharing my story, but I think there are far more on here that have had it worse than me (you included) and ended up recovering or returning to some kind or normalcy in their lives that deserve a spot in your book. Here's hoping some of them respond to you :)

[dawnie31]

I think you have the greatest idea by writing a book on Cdiff. I had more or less the same idea as you, knowing how hard it is to live throgh this, and I wanted to make people aware of this in france where relapsing Cdiff are almost unknow.I often laughed in library seeing all the useless books written by VIPs because they have lost their grandfather and they were so sad and it was so hard etc. just in order to make extra money... Maybe I'd sent you my story but it is not a sucess yet, still suffering from sever IBS. Hope it will work and give hope to sufferers and that it could make the things softer and help for medical advance why not.

[Bobbie]

coneal,
I've been a moderator on this site for almost ten years. Several times, we've had C. diff. sufferers "promise" to write a book, but it never happens. One young man (a reporter from NYC) was on the site for months seeking support and then again when he relapsed. He promised to write a book when he was "well." Nada.

I'm glad you are accomplishing what so many others have promised to do, especially with you and your co-author's credentials. I've done some free lance writing but not about C. diff. I wrote a presentation to the KS legis. trying to get C. diff. recognized as a mandatory reported disease -- no luck -- and was featured in a local story about C. diff. - which attracted little attention.

I applaud your decision to make the book "inspiring, hopeful, and contain a nugget of wisdom that helped you make it through the disease." I feel this will make your book will appeal to a larger audience. (Our culture seems to treat "bathroom" diseases with an "oh, gross" attitude.)

I'm known about C. diff. since l979 when my then four-year old son had it. He was the youngest and one of first people ever treated with oral Vanco. -- before that it was an IV med. (He was featured in "Gut" - what a thrill!) He had C. diff. again six years later. Many years later, I, too, had C. diff. twice. My first bout lasted four years and led to other health issues. I'll try to "shorten" my story and submit it.

C. diff. is one nasty "beast" yet few people know about it although it has reached almost epidemic levels.

I'm glad you and your wife have both recovered.

[coneal]

Hello all,

I wanted to write an update to the C. diff book that I told everyone was in the works a year ago. The first half of the book has been written and shopped around to publishers. I'm sad to say that at this point we've (I'm writing this with my amazing GI) have received two rejections of our proposal. In one case, no reason was given. In the other, the publisher said that they worried the C. diff population was too small to support sales of a book. I've been pretty bummed out by that response, since I know how many people would benefit from a book, but apparently health publishers are looking to publish for diseases like IBS and diabetes, that have millions of sufferers, not C. diff's hundred of thousands. My co-author and I are continuing to explore other publishers, and are now also considering the self-publishing route.

I'll keep you posted.

In other news, I am now 14 months free of C. diff. My post-C. diff IBS has been BAD. I'm now taking 25 mg of Elevil every day to control the IBS, but I've learned not to freak out every time I have a bad day (or week). Recovering from C. diff is sometimes worse than having it. The uncertainty is the real killer at times! Be strong, have faith in your body's ability to heal itself eventually, and always, alwasy, alwasy obey the three day rule.

[Mommy23]

Thank you for coming back to update us on your book. I remember reading your first post. What an amazing undertaking, hopefully someone will realize the need to have this type of literature available. There are so many that know little to nothing about this illness.

I too, have terrible post IBS, every day. Been very discouraging, I appreciated reading your post cdiff experience.

[Bobbie]

coneal,
I, too, remember your post. I never did send you my story. Let me know if you find a publisher and need more "real life" stories. I've known about C. diff. since l979 when my son first had it.

There was an article about a book on MRSA in the KC newspaper a day or two ago. I did a search on amazon -- lots of books about MRSA; none I could see about C. diff. Why don't you look up the publishers of the books on MRSA to see if they'd like to approach another "germy subject."

I see you live in Ann Arbor -- the headquarters of Borders Books. Any asssistance there?

I went to Ann Arbor years ago when I had C. diff. to enroll in a blind study for S. boulardii (now Florastor). I talked to Dr. Fekety --then the head of Infectious Diseases at the U. of Mich. Med. Center. I don't know if he is alive (he retired years ago) but wonder if the university might he helpful.

Discouraging, isn't it? I hope all your work is finally successful. (Your doc. must be a "gem" to help you.) I've done a lot of things during the years to try and publicize C. diff. -- including talking to a committee at the KS legis. to try and get C. diff. reporting mandated -- unsuccessfully. I've done some free-lance writing and approached an editor of a local magazine about writing an article about the minuses (and the pluses) of taking antibiotics. She wasn't interestesd unless the article was written by a medical "expert." I was featured in an article in a local medical magazine last year that quoted several medical authorities. Whoopee!

I think MRSA gets all the attention for several reasons. (l) A famous footballer player (don't know his name) contracted it - thus the publicity, The coach even changed the old "communal bench." (2) MRSA isn't an "icky" disease, and (3) there are probably more cases of death with MRSA (I'm not sure about this, however.) I'm afraid C. diff. will always remain the "silent disease."

I seldom tell people I'm a moderator on this site. If you look at it with the eyes of someone who hasn't had the disease and see the detailed "bathroom" posts , you'd think, "Oh, ick." We've stressed "cleaning up" the site (posting this info. in TMI if it has to be addressed) numerous times, but some don't listen.

C.diff. is finally becoming recognized, and they are teaching about it in med. and nursing school, but I don't think many realize how debilitating a disease it can be. I know in many areas, cases of C. diff. are more numerous than MRSA. Again, MRSA gets most of the attention. My dentist (who is probably in his late 50's/early 60's said he learned about it in medical school but I was the only patient who had it in all his years of practice. His wife has a friend who had it, however.

I hear you about IBS. I've had it since my first bout with C. diff. (l993-l997) and a second bout with C. diff. in l999. Since, I also have GERD (a hiatal hernia), sometimes I am doubly miserable. BUT it's better than C. diff.

Good luck. I hope you find a publisher! Keep us advised. Your book would benefit a lot of people. Not only is it a "yucky" disease, it's a lonely one.