Scared and crying

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BTom
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Scared and crying

Postby BTom » Fri May 20, 2016 1:40 pm

Hello,

My name is Beth and I am 37 years old. This is my first time posting. I have read of lot of info on here and thank everyone for all the stories and information. It has been really helpful. I got diagnosed with C Diff on Feb. 5, 2016 after taking a round of broad spectrum antibiotics for a sinus infection. I had no idea that I could get this thing called C Diff from taking antibiotics and would have rather had a sinus infection instead of C Diff! After finishing the antibiotics for the sinus infection, a few days later I had massive D, body aches, and just felt horrible. I was diagnosed with C Diff. I went through 14 days of Flagyl. I then relapsed 3 days after finishing the Flagyl. I then took 14 days of Vanco. I went one week feeling ok after that, and then relapsed on the 8th day after finishing the Vanco. This relapse was bad. I think I had D about 18 times over the course of 5 hours and they were bloody. I ended up in the emergency room. I then went back on Vanco. I told the hospital doctor that I wanted to look into a FMT which I had read about online. I was then referred to an infectious disease specialist and a GI doc. The infectious disease doctor put me on a long tapered course of Vanco and I scheduled a FMT with the GI doc. During the tapered course of Vanco, when I went down to 2 pills a day, I started having symptoms again and had incredibly bad abdominal pain. My GI doc had me stay on the 3 per day Vanco until two days before my FMT. The increased dosage did make the D go away and the abdominal pain go away.

I had a FMT via colonoscopy on May 10, 2016. This was done at a hospital in Colorado Springs, Colorado and the donor stool came from OpenBiome. The prep was horrible but I got through the prep and the FMT. Upon waking from the FMT, I had a very urgent need to go. I was able to wait only 15 minutes and had a ton of gas and some of the donor stool came out. They said that was normal and it was ok. My doctor then told me I could take Immodium which I did. The doctor also took multiple biopsies during the colonoscopy to check for colitis (and it was confirmed that I do have microscopic colitis). Afterwards I slept on and off for 2 days. I had a great deal of abdominal cramping and pains and really just did not feel well. I also had extreme pains and aches in my legs which my doctor later realized was an electrolyte imbalance from being dehydrated. I did not have a BM until 3 days after the FMT. It was well formed and I was so happy. Then, on Saturday, I had a partially formed and a partially loose BM. This then caused me to doubt that the FMT worked. I then had normal and well formed BMs only once a day this past Sunday, Monday, Tuesday and Wednesday. Then, on Thursday (yesterday), I had two loose BMs, one in the morning and one in the afternoon. I freaked out. This morning I have had one huge loose BM with what appeared to be mucus in it. I just have the feeling all day today that I need to have D.

I am just really scared and struggling every day with worrying that I am relapsing. With every loose BM I think that this is the day that I will end up back in the emergency room or back on more medication. I just want my life back. I have a little toddler at home and every day I am so scared that he will get this from me. I am also so scared that I can never be the active and energized mom that I used to be and want to be. I am struggling so much that I sit at my work desk and cry on a daily basis. I've been reading the posts on this site for a number of months and today I thought it was time to post. I don't feel much support from any of my friends or family. They assume that once I did the FMT that I was miraculously cured and that I should feel fine and act fine. It just isn't the case.

Thanks for reading - sorry for being so longwinded. I felt like I needed to share my journey in case anyone is on a similar path.

Beth

beth22
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Re: Scared and crying

Postby beth22 » Fri May 20, 2016 1:57 pm

I had FMT and can tell you from my experience that you will have all kinds of bms. Some will be D, some not. It goes on for a while like that. You also tested positive for microscopic colitis. Are they treating you for that because that gives a lot of D. I know people who had it and they had to take Pepto Bismol for a few months. You need to talk to your doctor about how to treat that.

I was also left with many food intolerances after my FMT, I don't think so much from the FMT, but from all the vanco I had to take before it. Many foods caused gas and D for me. I was later diagnosed with SIBO.

There is a product out there called EnteraGam. It is a medical food that helps the GI immune system. It is not a medication, just a medical food derived from immunoglobins from cows. I would ask your doctor about it. Maybe it would help you. There is also Questran that people can take to bind up the toxins and it gives more solid stools.

I would not worry too much at this point. It is possible to relapse after FMT, but more likely your issues are from the microscopic colitis and PI-IBS. Try to stick to a bland diet for a few days and see if that helps and then introduce foods slowly.

Lisa33
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Re: Scared and crying

Postby Lisa33 » Fri May 20, 2016 2:30 pm

I'm so sorry for all that you are going through. I have never had an FMT, but I can tell you from all of the posters on this site, that it can take quite some time after to feel normal again. Many still struggle with IBS and weird stools after an FMT. Many have thought that c diff was back, but test negative. Give it some time, and I'm sure things will improve. As Beth said, maybe Enteragam could be of help to you. There have also been posters, who weren't able to hold in the donor stool for long and lost some, but the FMT still worked.

As far as being a mom of a young child, I can totally relate to your struggle and feelings. My daughter was 3 when I had c diff. I tried so hard to be happy and joyful with her, but it was so hard when I felt so sick and was mentally drained on the inside. I felt so guilty that I was missing out on so much with her. Those few months felt like a lifetime at the time. I was the sickest on Halloween and I forced myself to go to her parade at school and then trick or treating. I couldn't even tell you what went on that day as I was so out of it. But right now, the most important thing for you to do is to get better, and not to be hard on yourself. You will be that energized mom again. It is great that you were able to get the FMT which has the highest cure rate of all. Take one day at a time, and I'm sure you will start to see improvement. I know we all just want to be better over night, but with this stupid illness, we are forced to be patient. As long as you are negative for c diff, everything else will get better!

Lisa

BTom
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Joined: Fri May 20, 2016 12:25 pm

Re: Scared and crying

Postby BTom » Fri May 20, 2016 3:25 pm

Beth & Lisa,

Thank you both so much for your thoughtful responses. I am trying to hang in there but the emotional toll is a lot. I can't seem to stop crying today for some reason and I'm not usually this emotional. I also emailed my doctor just now to see what my options are for treating the microscopic colitis and/or IBS to see if that might make me feel a bit better. I really want to stay off any type of medication in the future but at this point, I think it's worth looking into.

I will also check out EnteraGam. I had not heard of that before.

Also, my infectious disease specialist indicated that he preferred not to test me for C Diff unless I was experiencing more C Diff like symptoms. He was worried that if we got a positive that we would all freak out even if I wasn't having symptoms. I'm not really sure what type of test they would do. It sounds like others on this board have been tested after treatment and it comes back negative. I think that would give me some peace of mind. My doctor indicated that some people simply carry the C Diff in their system and therefore it would always come back positive even if it is not an active infection. But if others here have been tested, I wonder if I should push the issue?

Thanks again for your comments. Much appreciated!

Beth

NanciT
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Re: Scared and crying

Postby NanciT » Fri May 20, 2016 4:31 pm

Hello Beth

I'm so sorry you are going through this, but hopefully this just may take some time and you will find yourself slowly improving. The gut is related to your emotions, I never cried so much...until I had CDIFF. There were days I could not stop and found on bad days when I felt abdominal pain...my emotions were worse. I did not have an FMT so others will jump in here that did. But nearly all of us can tell you emotionally this is very difficult to deal with. Recovery takes time, I had many tell me the same thing about FMT...get it and you will be cured. But...recovery takes time.
I dealt with Post IBS for months, I take Levsin on and off which helps. Check in with your GI and let him know how you are.
Take care and I hope you feel better soon!
NanciT

beth22
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Re: Scared and crying

Postby beth22 » Fri May 20, 2016 6:25 pm

EnteraGam is a prescription, so you would have to get that from your doctor. It is also quite expensive. My insurance covers it, some do not.

I would not test for c diff yet either unless your symptoms get worse. I did some FMT enemas before and tested soon after and still had a positive test. The PCR test will pick up the DNA and even with FMT, you might still have some residual left. A positive test when you don't have full blown symptoms is useless anyway because you would not treat unless you go full blown. I am not a medical professional, but I do know from others who have had it, that the microscopic colitis gives D and lots of issues. A cousin of my husband's has it.

georgina
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Re: Scared and crying

Postby georgina » Sat May 21, 2016 12:40 am

Hi Beth
I'm so sorry you are struggling, i know ypu are scared but try to calm down because anxiety it will only make your symptomes worse. It is not unusual to have looser stools after FMT and mucus . I am six months out from my FMT and i am still having symptomes on and off , the FMT was not a miracle cure for me either although i was hoped it would be :). Now i have fewer bad days , thanks to antianxiety treatment. It takes time for that "starter culture" to grow and multiply , so be patient and give it time. And your doctor is right , it's not wise to test so soon after FMT or to test if you are not having classic relase symptomes as false results can occur.
Stop crying , you cried enough , think positive , go for a walk , watch a movie ,read , listen to good music, do something that you like and makes you feel better! Prayers all goes well!

Ril
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Joined: Sat Oct 27, 2012 2:45 pm

Re: Scared and crying

Postby Ril » Sun May 22, 2016 8:16 am

Hi Beth,
It is good that you have a wise dr who does not want you to test. If you go back and look at the guidelines for c diff, it is 3 watery stools/day for 3 days. Treating (or testing) would be on symptoms although there could be a difference after a FMT - I have not had one but have read tons of posts, as should you. The ladies that responded here should have given you some reassurance and you should read some other posts on this site and you will gain more insight into what others have experienced after FMT. It takes some time before you feel totally "normal" again. I just wanted you to know the 3 day rule.
There is other great information in the CDI section of this site as well as links to articles.
Best of luck recovering.
Rita


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