3 years and going...

[bback12]

I started with c-diff back in April 2009 after taking antibiotics for an ear infection. Flagyl Cleared it right up in two weeks and I seemed to being doing fine. I went about my life and finally in December, I got a really bad sinus infection and the resident doctor that saw me prescribed me amoxcillin 500 mg 4 times a day. (Yes, I'm serious.). I ended up in the ER on Christmas Day because I was doing so bad. Of course what happened, c-diff was back, and it was wanting to stay. I went to my new family doctor and I showed her the Amoxcillin bottle, and she was concerned about the dosage. She went ahead and referred me to my gastro doctor, I went to him and he wanted me to do blood work and a stool culture. What was different, my stool culture came back neg. for c-diff, even though all the symptoms were present. I did another stool culture and it still came back neg. Finally, the doctor did a colonscopy and said c-diff was present. He put me on a 6 or 8 week course of Vanco ( It's hard to remember) and I did that and tapered off. I got off the Vanco and 2 weeks later c-diff returned only to still get neg. tests. I was put back on Vanco for 3 months. That finally did the trick, I then treated with probiotics and watched what I ate. 6 months went by and it came back in October 2010, only this time the tests came back positive. I was put back on Vanco until about early January 2011 where I was referred to an ID doctor, who basically didn't help! He said my GI doctor was doing the right thing and he wasn't sure why this kept coming back ( I left crying). He did prescribe me Xifaxan, which didn't help much. I Had another relapse a week later and was kept on Vanco for 3 months. That seemed to do the trick, finally in Sept. 2011 I got all the symptoms again, and tested positive for c-diff. I was put on Vanco four times daily for three weeks. I went off and within six days I had symptoms again. I did a stool culture and it came back negative for c-diff, but my white blood cell count was through the roof and my doc said there was presence of an infection starting. I'm currently on Vanco and have been for a week and a half and I go back to my doc on the 18th to talk about another treatment option ( He did mention the fecal transplant, but said thats a last resort yet). My problem now is, I feel very nauseated and I feel so depressed ( this all started Thursday evening) and I am getting really bad stomach cramping, but no D when I go. The news for everyone is I'm 20 years old (Ill be 21 Nov. 15th), I'm a full time college student and I've been working full time through all of this. It's not been easy, there have been times I've had to miss classes or work or have even gotten sick at work. It's been miserable and everyone here in my family thinks I'm being crazy about all of this. My mom gets mad and yells at me and throws the money issue in my face. (This has drained my savings and their savings). I have to keep working to pay college loans and a car payment, and I've only got a year left of school and I'm trying to get done. I was going for nursing but had to put that on hold because of my c-diff so I'm not going for medical assisting). I've cried today wishing I could just feel better and I pray that God can take this disease into his hands and guide me in the right direction. I feel I'm missing some of the best times of my life because I'm so young with this. I've read many stories and I'm glad to hear I'm not the only one, but I do wish we all could just instantly be ok. I would love to write a book one day about my story in more detail, and I hope to one day be cured and help others suffer continue to fight the battle back to health. If you read this, I hope my story pushes you and helps you to move on and know your not alone. I'm fighting this with you!

[bback12]

UPDATE: 11/11/2011- I'm currently on Vanco 2 times a day, and I drop down to one time a day for a week on Wednesday the 16th. I'm feeling much better than I did when I first started Vanco. Bowel Movements are formed. Every now and then I get nauseated or get gassy and girgles but I take a Bentyl and that does help. I see the doctor on the 18th to discuss other treatment options after Vanco! Wish me luck!

[bback12]

Update 11/13/2011: Today things are bad bad bad! I've had four BM and they were mudpie/loose stool like. Two of them had some M in them, no B or watery D. I've had some nausea and it's been hard to eat today, I've had to force food down. I've been drinking water to stay hydrated. I'm still on a diet free of sugar and lactose. I see the doctor Friday, but may call him tomorrow. I'll update again soon!

Amyc: Thank you so much! That means alot to me, and yes I feel like I know so much more info about c-diff than even some nurses do! :) I do want to be a gastro nurse one day! That would be awesome to help those who have this, and I can help them since I've been in their shoes.

[bback12]

MLBBERRY- Hello! My doctor did have me on a strict diet, and it included most of everything you discussed and no lactose, dairy, sugar.. any of it! It was hard but I did well. We actually went to get a second opinon to an ID doctor, who was no help at all. He just basically said he doesn't understand why this keeps coming back and that my gastro doctor seems to know more than he does! ( He was a joke) so I've stuck to my gastro doctor. He has been great through everything! I'm actually leaving to go see him in 30 minutes! Wish me luck everyone!

[bback12]

UPDATE 11/18/2011: I went to the doctor today and he believes I have PI-IBS. I'm still going to be on the vanco 1 time a day for 3 more weeks. I go to the hospital next friday and I'm getting an ultrasound done and their checking my blood and my thyroid. On my last blood test, my calcium levels were extremely high and I've been on a lactose free diet for two weeks now. He also was asking me questions about my gallbladder? C-diff is trying to get the best of me. He also told me to stay on the lactose free diet and to eat six small meals a day and keep hydrated. I'm still feeling nauseated, gassy, girgly at times. This is a mess! I will update again later.

[bback12]

UPDATE 12/18/2011

Two weeks ago I had a CT scan due to lower left side pain I was having. It showed inflammation in my Ileum and my doctor then wanted to do a colonoscopy to see what things looked like from the inside. The colonoscopy came back to say I have a small hemrroid, and major ulcers near the ileum. He took some biopsies and they came back positive for Crohns Disease. I'm now suffering Crohns Disease. I had a small bowel x-ray done Friday that showed the Crohns, the good thing is there is no sign of obstruction or blockage. I'm currently taking Pentassa, Flagyl and Prednisone for Crohns, and will ween off Prednisone down to 3 a day this week. After dealing with c-diff for three years, I now have Crohns? It's a mystery and I've wondered if C-diff didn't have something to do with it. He said the colonoscopy didn't show any c-diff which I was glad to hear! I have to get the Crohns in check and keep my body healthy from getting c-diff again, because it's a big fear of mine. I'm hoping that I'm on a path to recovery now. I pray God can help continue to heal me and give me more strength day by day.

[bback12]

UPDATE 1/29/12

I am starting to feel a little better each day, unless I eat something bad then I don't feel well for the day. Dealing with Crohns Disease now is a life changing thing. I hate to watch what I eat, what I do, always remember to take my medication. And it's always on the back on my mind if c-diff will show its ugly face again. I ended up in the ER on Christmas Eve because of a high temperature of 104.6, and they couldn't figure out why. They did stool samples, x-rays, several blood cultures, scans, you name it, they did the test. Everything was coming back fine but they kept me to monitor me. I was sent home Christmas day, late in the evening but still feeling sick. They were thinking it was viral. For the next few weeks after that, it seemed like every few days I kept getting a temperature that would run around 100-101. The doctor ended up putting me on Cipro to see if there was any infection that the Flagyl I was on wasn't taking care of. I handled the Cipro fine, but still worried about a c-diff relapse. So far nothing! Even though on the medication info, it said it could take 2 months even after ending the medication for c-diff to showup, so yes I still worry about it returning. I talk to my GI weekly about my progress, and we still watch for c-diff and any changes in my bowels for my Crohns. I'm currently on Pentasa, Entocort, Flagyl, Bentyl and 6MP. I'm hoping to never ever have to face c-diff again, but I know I'll have to monitor everything. I also hope I can get my Crohns in control so I can continue doing my normal activites and the things I love. I'm still working and going to college, and if things continue on a good track, I graduate college in December!

[bback12]

UPDATE 6/10/12

I ended up having a parathyroidectomy on April 20th. I had really high Calcium levels and they found a benign tumor on the upper right parathyroid. Luckily I didn't need any antibiotics for this surgery and I went home the same day. However, today I had to get some vanco again... the c-diff is back again! It's been miserable. I'm doing to be talking to my doctor about a Fecal Transfer, I just can't keep doing this! Since January, I've been on Vanco most of the time except for maybe 4 weeks at most.

I'm taking two summer classes for college and still working about 30 hours a week, and I'm taking one day at a time. I'm going to continue to fight this!

[bback12]

UPDATE 7/26/12


I'm currently still on vanco once a day, along with Flagyl twice a day and still all of my Crohn's medications. I end Vanco next Tuesday, but will continue on the Flagyl for another three weeks following. My GI says if the c-diff comes back after this, we'll do vanco along with another antibiotic, and if that doesn't work then it's fecal transplant!

Overall, I've been feeling pretty well on the Vanco, and Crohns medications. I have had a few days where I've had loose stools and nausea, but it's due to my Crohns.

I'm going to continue to fight! My last class is tonight then I'll just be working for a few weeks until I start my Externship!

Wishing everyone the best!

[bback12]

UPDATE 10/8/2012

It was a very stressful week. I ended up having to leave work Monday due to severe pain in my left side. It felt like a huge gass pain but it wouldn't diminish. I ended up going into the ER, and they found that I had a 9mm kidney stone. By Tuesday morning, they had me at the surgicare center for emergency surgery to remove the kidney stone, and they would also place a stint in my left ureter. But, the bad news is they had to give me Anceph to prevent infection ( I'm just thinking oh great, but the chance of c-diff coming back). I did well with the surgery and even had the stint removed on Friday. By Friday evening, spasms were setting in. These spasms were a result of the stint being removed and felt like kidney stone pain, only no kidding stone was present. Saturday, I felt pretty well, but had loose bowel movements because the spasms would come and go causing my belly to get in an uproar. Sunday, no spasm until the afternoon, but I did wake up with a 101 fever. I took two tylenol and the fever went away, until it came back later that evening. As of today, no fever yet, but I just don't feel right. I felt really gassy and gurgly this morning and when I used the restroom, it wasn't like it normally was. But no D or even what I would call loose bowels.

As for the c-diff, I am worried that I will develop c-diff. After the antibiotic last week, I'm just freaked out that I will develop it. I'm on Flagyl for the Crohns right now so hopefully being on the Flagyl helped prevent the c-diff.

I'm also currently still on all my Crohns meds and my Crohns was doing great the month of September. No major issues, just some nausea here and there but overall I was able to go places and do things... It was amazing!

I'm hoping I will continue to get better and have no c-diff flare up or Crohns flare up. I'm also getting an ultrasound of the kidneys on November 9th, so hopefully things will get better.

Thanks for reading everyone! I feel so blessed to have many people be here for me and sent me kind, sweet messages. I'm glad I'm able to help anyone in anyway that I can.

[bback12]

UPDATE 6/13/2013:

Tomorrow is my last day of Vanco after an 6 week taper. For months before that, I would do fine on Vanco, and then as soon as I went off I would relapse at that two week mark. I tried Dificid early in March, and thought I would do well with it. 6 weeks later I relapsed. I ended up getting a full time job at with a huge local hospital chain. I'm a medical assistant. I was lucky enough to get on their insurance plan. Turns out, my GI doctors practice joined another major hospital chain here in Cincinnati. When I went to see them, they told me they were unable to see me because my insurance would not pay for them to see me. I ended up fighting it and called my insurance and they told me that I was told wrong, I'm 100% covered. Since then, I haven't seen my GI or even talked to him! I use to talk to him on a weekly basis. I feel like I'm being pushed under the rug.

Meanwhile, I don't know what to do now. I'm still on all my Crohns meds; just a flare up here and there.
I know I'll relapse in two weeks and I'm not sure what I'll do. Do I call my GI? Or do I just go into the ER.
My guess is I'll just go into the E.R and let them take it from there.

Everything just keeps getting worse with this cdiff.