Aloha - new to forum and suffering

[Gecko_toes]

Hey everyone - just introducing myself and thought I'd share a bit.

I'm a 43 year old female who is currently undiagnosed. I moved to Hawaii to live my dream, be in a climate that is kind to my fibromyalgia and arthritis, and enjoy the healing I feel when I swim and snorkel in the beautiful warm waters of the Pacific Ocean. That dream is crumbling away as I get sicker and sicker.

About 6 years ago I was diagnosed with IBS by a GI doc after my bowel habits changed to purely diarrhea and frequent incontinence of stool. I'm sure that many of y'all know how demoralizing it is to wake up in a cold pile of your own diarrhea that you had somehow unknowing expelled during the night. I accepted this diagnosis because I was not having significant pain, frank or occult blood, or any significant impact on my life that I couldn't handle.

All that changed September 2013 when I had my first episode of horrible abdominal pain, diarrhea, and a scary amount of blood clots in the commode. I saw my PCP who was quite concerned and strongly encouraged a GI consult and colonoscopy. I was without health insurance at that time and in significant debt from my move to the beautiful Big Island of Hawaii, so self paying for that wasn't an option. So I just decided to live with it

So whatever it is that I have would exacerbate and remit. Now I am in a flare/exacerbation that just won't quit (it started April 2014)

Now that I have health insurance, I hecame very proactive in addressing this, saw my PCP in April, he did blood work, a stool sample, and referred me to a GI. I saw the GI in early May and had a colonoscopy scheduled for May 21 because she suspects IBD. Colonoscopy time came, I did the prep for it (Golytly), followed the prep instructions exactly and was passing clear fluid at the end of the prep that night. Unfortunately by the time my colonoscopy came at 1:30 pm the next day, my stool was no longer clear and my GI cancelled the colonoscopy which was rescheduled for June the 18th(this time with a split prep using Trilyte). Throughout all of this wait since April I've had the usual horrible abdominal pain, bloating, belching, nausea, diarrhea with occasional blood and mucus, etc... I've been unmedicated for my symptoms, which I understand except for the refusal by the GI doc to give me something to treat my debilitating constant nausea (her advise after two weeks of begging for something like Zofran was to go to the ER if it got worse - gee, I thought we should be trying to prevent overutilization of ER services - and the last time I was at the ER they told me to make sure I go back to my GI - a vicious cycle)

So two days ago my GI and PCP dropped the bomb on me that I have c diff according to the labs that were done two months ago in April. These labs were done two months ago!!! And they're just noticing this now?!?!

They put me on flagyl for the c diff, I started it yesterday. My concern is why do I have c diff? The normal red flag risk factors for getting c diff don't apply to me right now - I haven't been on antibiotics since 2012, I stopped working as a physical therapist in July of 2013 (i quit a 20 year career in healthcare because doing such a physical job was becoming too difficult with my fibromyalgia). Throughout my years working as a PT in multiple settings, I worked with many patients with c diff, even while on antibiotics myself - and never got c diff. So now that I don't have any of the normal risk factors for c diff, I get it. It really makes me concerned that an underlying and presently undiagnosed IBD may be why I was susceptible to getting this horrible bug

So I'm really happy to be getting treatment for the c diff, but on the brink of losing my job because I've been so sick and missing work, I've lost quite a bit of weight very quickly (people keep telling me how 'good' I look), feeling very alone (I'm single, no kids, moved by myself to Hawaii, and haven't really been able to cultivate a support system here yet) awaiting my 2nd attempt at a colonoscopy on June 18th, suffering and completely unable to enjoy living in Hawaii because I'm too sick to drag myself to the beach or go for walks across the amazing barren lava fields. My life is being destroyed and I am concerned about maintaining good mental health during this struggle.

So those are the highlights of my journey so far. I'm glad this forum exists and am sending y'all Aloha.

 

[Daisy123]

I am so sorry to hear how ill you have been. And also going through prep and not being able to have the colonoscopy. I am from the UK and always have a split preparation of Picolax and also 10 senna the first night of prep. I am glad you don't have to wait too long for the repeat. I suspect your GI doesn't want to prescribe nausea meds until he knows what is going on. My tips for nausea are ice lollies ( trust me sucking an ice lolly really helps), peppermint tea and ginger tea. You could try travel sickness tablets?

 

[Gecko_toes]

Thanks Daisy123. So sorry you've had to go through repeat attempts at colonoscopy prep too, we'll be experts at this soon!
I really appreciate the tips - ginger tea and mint tea have been my saving grace lol.
Let's all keep plugging and supporting each other!

 

[Gecko_toes]

Whoops - I realized I may have misunderstood - darned brain fog - I think I misunderstood that you had failed attempts at colonoscopy prep. Instead I will applaud the success you've had with the type of prep you've had!!!

 

[Cat-a-Tonic]

Hi Gecko_toes, welcome to the forum. First I just want to say, that is horrible that your GI wouldn't prescribe something like Zofran for your nausea! Zofran wouldn't affect any of your test results (some medications, like prednisone, can affect test results, but Zofran wouldn't), and it's not habit-forming or anything like that so I don't understand why your GI refused you symptom relief like that. I don't know what I would do without Zofran, it's been like a miracle to me. Can you ask your PCP about prescribing it? My primary care doc has written me prescriptions for it with no questions asked.

Secondly, I wanted to tell you that if the antibiotics don't clear up your c diff, you may want to look into a fecal transplant as those tend to be very effective at getting rid of c diff infections. It's kind of a gross concept, and it sounds like you currently don't have anyone in your "inner circle" who could be a donor for you, but it's something to consider nonetheless. Here's an article about it for you:
http://www.mayoclinic.org/medical-p...seases/quick-inexpensive-90-percent-cure-rate

I hope the upcoming colonoscopy goes well and gets you some answers. Please keep us posted as to how it goes!

 

[Gecko_toes]

Thank you Cat. Fortunately I'm seeing my PCP today (I have to see him to get a doctors note because I called out sick from work (since I now know I have c diff, I stopped antidiarrheals which means I can't control the infectious spawn of satan coming out of my rear right now - just really can't make it to work today). I'll ask him about something for my nausea, and if he refuses I'll request an explanation on why it is clinically inappropriate to give me something like Zofran - the GI won't communicate why she won't prescribe it even though I've been asking why - I've never asked her for narcotics or anything that would affect the upcoming colonoscopy results so I'm quite confused by her)

I have been reading about the transplants - thanks for the link, y'all are really so helpful in directing people towards useful education so that we can be more proactive about our health!

 

[Daisy123]

Whoops - I realized I may have misunderstood - darned brain fog - I think I misunderstood that you had failed attempts at colonoscopy prep. Instead I will applaud the success you've had with the type of prep you've had!!!

My last test was a sigmoidoscopy, no bowel prep and an enema at the hospital. Didn't work, GI couldn't see my bowel wall because was covered with 'soft stool'. The worst time was having gone through prep, which makes me very ill because I have to stop anti diarrhoea medication, I got to the hospital to discover they had given me the wrong time and I had missed my slot. I wept, and they managed to slot me in, so I do understand.

I agree about sickness meds, I take domperidone which does work as long as I take it in time. Hope you get it sorted out:ghug:

 

[Cat-a-Tonic]

Good luck with your PCP today, Gecko! I hope the appointment is more worthwhile than just getting a note for work. And thank you, we are a support forum first and foremost, but we try to provide good information (and not snake oil) as well. I'm glad you found us and I hope you get some relief and answers soon!

 

[Gecko_toes]

Whew - my PCP had no problem prescribing me some Zofran (as well as my note for work) Just took one and hoping for some sweet, sweet relief very soon! I'm very pleased to have a compassionate PCP.
Now I've gotta work on staying tough while I attack this c diff and await my colonoscopy!

 

[Cat-a-Tonic]

I hope the Zofran worked well for you! Glad to hear you will finally get some symptom relief!

 

[Gecko_toes]

Thanks Cat and Daisy123 . The Zofran is a godsend. It brought my nausea down from around a 7/10 to 3/10 for around 3-4 hours, awesome! I'm gonna make sure I save enough for when I do my colonoscopy prep because the last one was really harsh on my nausea and made it so much worse for about a week afterwards.