Scared and upset

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okaylo
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Joined: Thu Jun 16, 2016 6:32 pm

Scared and upset

Postby okaylo » Mon Jul 18, 2016 1:29 pm

I am a 25 year old female who has dealt with multiple recurrences of Cdiff since 2014. Last night before I went to bed, I was extremely upset, frustrated, and scared/anxious as I contemplated my current situation and that my first FMT procedure did not work. I had such high hopes for the future and was so excited and looking forward to finally getting my life back. (I am recently engaged and had began thinking about the fun of planning a wedding and moving out after my FMT procedure).

Anyways, once I fell asleep, a few hours later, I woke up screaming from a bad dream. My Dad heard me scream and came up to my room to check on me. I was crying, shaking, and my heart was racing. It took me several hours to calm down. This has happened on a few other occasions which have all been related to being extremely anxious and upset before going to bed. I have tried talk therapy, meditation, antidepressants, and anything else I can think of to calm me down (nothing has worked). Fast forward to this morning: I wake up crying uncontrollably again as I am overwhelmed by this disease that continues to plague my life on a physical, emotional, and mental level every day. I live in constant fear and am always cleaning/sanitizing and washing my hands compulsively as it is the only way I can get through the day. I clean the toilet each time I use it (which is exhausting in itself). I wash my hands a minimum of 15 to 30 times a day because I am so afraid of having anything on them and am also afraid of getting any other type of germs near me and developing any additional illnesses. I sanitize my cell phone, glasses, car keys, and anything else I touch regularly because I am just so afraid. I avoid touching door handles, other people's belongings, and surfaces that I even know are clean at all costs.

Cdiff is not the only issue I have dealt with over the years but it is by far the most scary and upsetting. Since 2013, I have had an h-pylori infection from food poisoning, post infectious IBS, small intestinal bacterial overgrowth, gastritis, Barrett's esophagus, food intolerances, Gilbert's syndrome, and more. The issues have just snowballed from a single bad bout of food poisoning and nothing has ever been the same since.

I am just looking for someone to talk to about this who has experienced Cdiff and may be going through remotely the same thing.

susant
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Re: Scared and upset

Postby susant » Mon Jul 18, 2016 1:55 pm

I'm 28 and my first fmt failed... I've also been dealing with this since 2014... You sound exactly like me. Please don't hesitate to private message me if you want to talk. I'm right there with you. You are absolutely not alone.

amyc
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Joined: Thu Nov 10, 2011 8:15 am

Re: Scared and upset

Postby amyc » Mon Jul 18, 2016 2:31 pm

I think the first step in getting all of this resolved will be to conquer C diff once and for all. Can you get to somewhere like Mayo, Dr Kelly in Rhode Island, or Dr Sheperd in Tampa? Or to Dr Bartlett at Johns Hopkins? It is scary that a single bout of food poisoning has had such a terrible lasting effect on you, but you can get well so you can move on with your life. What region of the country do you live in? Perhaps posters could tell you details about doctors close to you and how their treatments went, how the doctor's personalities and availability for phone consults were helpful, if they felt good about follow up care, etc.

okaylo
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Re: Scared and upset

Postby okaylo » Mon Jul 18, 2016 2:59 pm

Amyc: I live in southern CA. I like my current doctor and he is willing to do a 2nd FMT but getting it approved through insurance is a hurry up and wait game and the time in between is agonizing. I am waiting for a call back from him today to discuss going back on Dificid prior to the procedure and to hopefully knock this out once and for all. If anyone would like to share their experiences or where they had their procedure done and any special details, that would be great.

amyc
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Joined: Thu Nov 10, 2011 8:15 am

Re: Scared and upset

Postby amyc » Mon Jul 18, 2016 3:08 pm

It's great that your doctor is going to bat for you with the insurance company! Going on Dificid before the scope sounds like a really good idea since you have such a stubborn case. When you are on meds your symptoms are better so that should help your anxiety while you wait for the insurance company, right? Do you even know what caused your original food poisoning?

beth22
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Re: Scared and upset

Postby beth22 » Mon Jul 18, 2016 5:08 pm

I live in Southern CA and I have had FMT done more than once. UCLA does this procedure, but they only use OpenBiome. You can't use your own donor, but the ID doctor there was good. I did not have mine done there, as I wanted to use my own donor. PM me if you want any info on doctors, etc.

overit
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Re: Scared and upset

Postby overit » Mon Jul 18, 2016 6:29 pm

I live in Southern California as well and had my colonoscopy FMT at Cedars using a donor from OpenBiome. I was put on Vanco and Dificid prior to my FMT and both failed. My Dr. put me back on Dificid right before my FMT to get me through the week before they could schedule me. Feel free to message me if you have questions.


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