battle with the beast

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tonia
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Posts: 167
Joined: Sat May 23, 2015 12:05 pm

battle with the beast

Postby tonia » Tue Sep 29, 2015 11:08 am

Hello,

I am going to start my history quite a few years ago. In 1997 I was expecting my second child. Near the end of my pregnancy, I had a sinus infection. I was put on amoxicilin. Took 1 pill and had a reaction, no more meds were given, infection went away. About a week later, I had my son. 6 weeks after, I started having diarrhea. Mentioned it to the doctor, he said it was just from hormones etc. Over the next 18 years, it never went away...at all...it just continued to get worse to the point that whatever I ate or drank went right through me. 15 to 20 times a day. I had numerous scopes, testing, tried various meds, nothing worked. I do not know if I was ever tested for c diff and I had never heard of it, so I never asked. Throughout this time, I had multiple hospital stays for various different emergency surgeries...still never tested. I eventually just got to the point of "well, it hasnt killed me yet, this is just my life".

Fast forward to October 2014. A medication that I had been on, gave me Serotonin syndrome and had me put in the critical care unit overnight. Maybe I picked up a spore there? In December 2014, I went to see my father in law in the ICU...could have picked it up there. In January, my PCP put me on clindamyacin because I had been "exposed" to bacterial meningitis. Shortly after taking the second pill, the blood and mucus started. I was in so much pain I immediately called my doctor. He told me to come in to be seen. It takes an hour to get to his office, it was not an easy trip. My husband was with me. The doctor listened to my symptoms and said he thought I had c diff. He gave me a shot of nubane for pain and told me to go to the hospital. Went to the hospital and was admitted after testing positive. They started me on vanco and the next day I was sent home. I was told NOTHING about how serious this was. Told nothing about being contagious. Told nothing about cleaning with bleach.

I seemed to get better rather quickly. For the first time in 18 years, I had NO diarrhea....seems a bit coincidental. This lasted about two weeks until I started having pain. Went back to my doctor. He thought the infection had traveled to my gallbladder and put me on flagyl without testing. I still did not know enough at this point to question this. Took the flagyl for 14 days. I could not walk by the end because it affected the tendons in my ankles. Thankfully it was only temporary. Again, the symptoms stopped. A few days before Valentines day, things took a rapid turn for the worse. I began having severe pain and nausea, but could not go to the bathroom. On Feb 13, my husband called an ambulance. The hospital said I had a stomach flu and sent me home. A few hours later, the vomiting began. My husband took me to a different ER. They said I was constipated and sent me home with laxatives. About 4 hours later, I began vomiting every 7 minutes. On Valentines day, I was admitted to the hospital. 4 days later, I was having surgery for multiple bowel obstructions caused by scar tissue. This surgery required IV flagyl and IV levaquin. The floor I was on was full of c diff patients. This hosptial has no privates rooms, so every one was doubled up. Since I was obstructed, I could not provide a sample to be tested. I do not know if I still had c diff at the time, or picked it up again. 2 weeks later, it was back.

Now it is March and I am back on vanco. I was admitted at two times in march for c diff issues. Pancreatitis, low potassium, dehydration, malnutrition. At this point my weight hit 96 lbs. I was sure I would not survive this. My parents made the trip from the east coast to be with me. During the second stay, I got a staph infection in my IV. They discharged me and just said if it got worse to go to a different hospital. I think they didnt want to report a HAI. As swollen as my arm and hand were, my husband took me from that hospital directly to another. I was put on Levaquin due to the fact that this infection had a direct line into my blood stream. It was cultured and thankfully was not mrsa.

In April I finally got in to see a GI. He said just stop the vanco and lets see what happens. Things got worse, but he did not want to treat until he got in there and had a look. Beginning of May I had a colonoscopy. Everything appeared fine so he said it was just IBS. I dealt with things until July. It got too much to deal with, so I had a test...positive, back on vanco. The vanco put me in the hospital. I had managed to find a new GI and had already scheduled a FMT for August 18th. The hospital I was in contacted her and arrangements were made to transport me by ambulance two hours away to her hosptal. On July 31st, I had the transplant. I thought it would be my cure...it wasnt to be. On September 28th, I again tested positive. I will now be starting dificid...I am terrified to take this med because I just do not have good luck with medications. I will be having a 2nd transplant October 8th. In the meantime, my GI is testing my husband and two sons to see if they might be carriers and reinfecting me somehow. I do not know how I will react if that is the case.

This has stolen so much from me. Before c diff, my life revolved around animals. Since c diff, I have become frightened of them. I rehomed my cats that I love with all my heart. I refuse to touch my dogs and they no longer come in the house. I am afraid of my own home. I have bleached and bleached...walls, floors, clothes, bedding, bathroom, kitchen. If it can be bleached it gets bleached. If it couldnt be bleached it was either thrown out or packed up. I can only figure I am somehow getting reinfected somewhere in my home. Because of this I spend most of my time sitting on one couch that is covered with a sheet or blanket that gets washed every 3 days. On nice days, I sit outside on a plastic chair that I can bleach. Even sleeping is not a respite for me. I wake up numerous times at night just to make sure I have not rolled over on my husbands side of the bed. If my blanket (we now sleep with seperate blankets) or pillow has fallen on the floor, i get up and change it. This is no longer a life. It is merely an existence. I dont want to do this anymore. I want to have a life, I want my old life back. This infection is totally breaking me. I feel I will never beat this, and that my future will be nothing more than bleach and stool tests.

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Tue Oct 13, 2015 12:06 pm

After taking Dificid for 6 days, I had a 2nd FMT on October 8. I had to usebthe bathroom shortly after waking up from sedation, but was assured that I did not lose the donation as it was all placed in the cecum this time so it would coat my colon slowly as it made its way through. Today is tuesday and I feel wretched. Absolutely terrified that yet again this will not work for me. If it doesn't, I do not know what options I have left. Feeling beyond discouraged today.

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Sat Oct 17, 2015 10:45 am

It has been 9 days since my 2nd transplant. The acne that had magically disappeared the day after, has now come back with a vengeance. Doc says there is no connection...I do not agree with that. My bowels are very very noisy. I have two schools of thought on that. It could be a good sign showing that my new bacteria is growing well and making a home for itself. It could be a bad sign as lots of gurgling is a hallmark symptom of my c diff. Only time will tell on that. My bowels are very iffy still. After the first transplant, things seemed to go a bit smoother initially. Not sure what to make of this one. On top of it all, it feels as though some of my scar tissue had attached to my right kidney. It is causing terrible pain but I am too afraid of any medication at this point to take the pain meds that I have for this. My greatest fear right now, is that I will have to have yet another surgery to release the scar tissue. They will not do this surgery without antibiotics because of the risk of knicking my bowel. It feels like such a vicious circle that I just cant escape.

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Fri Nov 13, 2015 4:44 pm

It is now 5 weeks since my second transplant. I have had 2 tests due to some symptoms. Both tests have been negative. Do I trust the test? Not sure about that.......I have had too many false negatives, so only time will tell. I still deal with horrible anxiety, although it is slightly better. As in I no longer use paper towels to open doors in my house, or wear gloves all the time. I am still dealing with stool that is nowhere near normal, as well as daily pain and extreme fatigue.

Had a tooth pulled yesterday...no antibiotics. Hopefully it will heal with no problem and not tax my immune system too much.

My son is leaving tonight to move to Montana. Of course this is just adding stress and we all know the effects stress has on our gut. Trying not to worry too much and get the gears going in my stomach, but it isnt working very well. There is always something!

Hoping the next 5 weeks will bring improvement.

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Mon Nov 23, 2015 2:09 pm

Coming up on 7 weeks since my 2nd transplant.

Starting yesterday, I am once again having "bathroom" issues along with the notorious gurgling as well as some nasty nausea. Also feeling exceptionally fatigued. Have slept in until 10:30 for a few days. That is very unlike me. However, I am not having any real pain or outright D at this point. I am hoping it is either just a bug, or all of the extra stress with my dry socket from tooth extraction and my son moving away. Plus we have discovered the c diff has literally bankrupted us....

Going to the head shrinker today because I can no longer deal with the anxiety surrounding c diff. This has me on edge as well for two reasons. The last two times I have gone there, I had been c diff "free", a week after each visit, it was back....could be a coincidence, but I did find out that twice a week he sees patients in the local nursing homes, so I just dont know. If it comes back after this visit, I think it will be time to let them know they may have a Dr. in that office possibly spreading it. The second reason is that I am terrified to take ANY meds now. I know I need something, but I also know most of these meds have D as a side effect. *sigh* I have been doing this for 11 months now, obviously mind over matter isnt working form me.

Praying very very hard that this beast is under control and will stay on its chain and keep its muzzle on.

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Mon Dec 21, 2015 12:16 pm

It has been 20 weeks since my FIRST FMT (which I am not totally convinced had failed). Thursday will be 11 weeks since my 2nd fmt. I have had two negative PCR tests since. The most recent was Nov. 11. Right now things are a bit "off". No actual D, bot no where near "normal". Just trying to hang in there, not panic and trying to put off testing as long as possible....actually trying to avoid any doctor altogether lol. I think it just boils down to stress and bad food choices. I do still have stomach pain regularly but there is no way to tell what it might be coming from.

My anxiety is still quite high and probably will be until I have made it at least 6 months without a relapse. Hopefully by that point, my good guys will all be well established.

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Thu Feb 04, 2016 6:27 pm

It is now 17 weeks since my second FMT. There have been alot of BIG bumps in the road. I think I have now turned a corner (from my lips to God's ear!) I am at this point able to eat more foods without having major issues. For close to a week now, I have only been "going" every other day! After 18 years if 10-20 times a day, that is a very welcome change! I hope this trend continues, although it can get a bit uncomfortable as I am not used to it lol. I am praying that my battle is over and that I will never have to go through it again....probably not realistic, but a person can hope. If I make it to a year, I will then post in success stories....just do not want to push my luck and jinx myself.

So eternally grateful for everyone on this board!

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Fri Apr 08, 2016 10:39 am

Today marks 6 months since my second transplant. As far as I know, it is still gone. I still struggle with a myriad of other new health issues since c diff. My body has certainly taken a beating and I am not so sure it will ever be the same.
The daily fear and panic is still my constant companion....hope that goes away soon. I have been in "fight or flight" mode since January 2015. It is taking a toll on my heart now.
I hope to make it another 6 months and be able to post in success stories....if only I can stay out of hospitals due to other problems.
I dont visit the board much anymore, except to check media to look for treatment breakthroughs. Just trying to "forget" and move on. But, I think of everyone that has been here, and everyone who will be here, everyday and pray for a real, permanent, never have to worry again, cure.

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Tue Aug 30, 2016 11:35 am

I am almost 11 months post 2nd transplant. October 8th will be 1 year. I have consistently tested negative since that transplant. It is generally recommended to not test to try to prove a cure. However, I still have more D than not. There are times when we think we have figured out why, such as foods, drinking too much fluid, taking a multivitamin etc....I will experiment for a few days, get a good result and think I have it figured out, then end up back at square one. It is very frustrating, but as long as it isn't from the beast, I will deal with it. I hold on to the hope that one day I will wake up and my colon will decide to quit throwing temper tantrums. Time will tell. I have made it from 93lbs to 130lbs so I am definitely retaining nutrition now. With a little bit of luck and a miracle, this time next year I will look back on all of this and think "wow, what a ride". Hopefully soon, none of us will have to worry about this ever again

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Sun Jan 15, 2017 1:45 pm

Just an update: January 12th was the 2 year anniversary of my diagnoses with this beast from the bowels of hell. I am now 14 months "infection free". I am very happy that I have consistently tested negative, although I am still left with nothing but chronic daily diarrhea. Thankfully on a much less frequent scale, but still not pleasant. Anyway, the anniversary caused me to look back on this journey trying to find any positives in it. I suppose the fact that I have been able to help other people is a positive point. My husband made a video about my situation, driving home the importance of handwashing. Amazingly I have had quite a few people contact me about it. Being able to educate from personal experience is a benefit. I do also have a much deeper appreciation for life that I just took for granted before. I could have done without all this to learn that lesson, but, so be it. There are a few more, but not really a subject for here.

Physically speaking, in some aspects I am much better than I was 2 years ago, but in others I am worse. I wont go into all the details as I dont want anyone reading this that is just starting down this road to worry that they will have the same problems. That is not always the case. I have at this point given up on drs. I have had so many check out my permanent vertical smile without so much as offering to buy me a drink, that I just cant go there anymore. I would like to preserve whatever dignity I still have, which wouldnt even be enough to fill a thimble. I am on no meds as it seems for me they just make things worse. I have switched up my diet trying to get a good mixture of things entering my body. Some days it does ok, others it sets off my stomach so bad that I probably ought to install a seat belt on my toilet. All in all though, I am grateful for where I am at despise the lingering issues. I am alive, have my colon and have steered clear of a hospital admission for a year now. To me, that is victory. I hold on to hope that one day soon, my gut will just reset itself. From what I have read, it could take up to two years.

I do still have the anxiety and PTSD. Thankfully to a lesser extent than this time last year. I have been able to let go of some of the "rituals" that came along with this. Others may be with me for the rest of my life. That is ok.

I hold out hope for all the new preventatives and treatments that they are working on. My hope is that someone somewhere will find something that will help us to not fear this stuff anymore.

For anyone reading that is just starting down this road, keep your chin up. You WILL be ok. Be kind to yourself physically as well as mentally and emotionally. Take it one day at a time and build yourself a good support system.

tonia
Regular Contributor
Posts: 167
Joined: Sat May 23, 2015 12:05 pm

Re: battle with the beast

Postby tonia » Wed Jul 19, 2017 11:17 am

21 months c diff free!!!!!!


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