Just don't know what to do anymore

[Davidtm]

Having a hard day. I hate this disease. Feeling so helpless right now and lost as to what to do. An fmt would cure me but I'm told my safety cannot be guaranteed due to my nut allergy and the fact that they don't screen donors for that. They don't accept my own donor and only use their source. So you're telling me that this contingency hasn't happened yet? Is my case special that no one else is as unlucky to have both a nut allergy and recurrent c diff?
A life saving 2 hour procedure could end all of my suffering from this past year but I can't get it because people with allergies are not considered. I can't afford to go out of my insurance. The only alternative would seem to be dificid. But I won't be prescribed a taper if I do get it.
I feel like they just want me to go away because I'm not easy doctoring. 10 days max dose of Clindamicin for strep throat prescribed by a young dr covering all of his bases when I would have been fine with a safer alternative. If I knew then what I know now I would have risked rheumatic fever.
I keep telling myself what am I going to do if 10 days of dificid fails. What's next for me I ask. A colectomy? A relapse that does worse? Death?
I'm left half empty with nothing but fear and worry. Worry for my daughters and for their wellbeing. I've been optimistic this whole time but for the first time today upon hearing all of this I actually had the thought of maybe I should start settling my affairs and making arrangements. I can't believe it even crossed my mind.
All I want to do is get better and live my life. I'm tired and anxious.
I'm almost tempted to risk anaphylaxis on the colonoscopy table to cure this.
I just don't have anymore positivity left in me today. Maybe tomorrow will be a brighter day.
I hate c diff. I hate that everyone tells me how great I look from the weight loss. I just say thank you and in my head I say yea dying from an intestinal super bug really gets you beach body ready.
I don't want anyone reading this to leech any of my negativity and lose faith in their own treatment plans. I'm unique in my hurdle as far as my allergies go and you will be fine. I just had to get it out. I just needed to let it out because my heart and mind are full. God help us all and I pray for everyone's speedy recovery.

[beth22]

Is there a doctor in your insurance plan that does FMT who would be willing to use your own donor? Do you have a wife? Many spouses are donors. I had FMT via colonoscopy and I have done them myself using enemas at home and truthfully, the enemas helped me more than the colonoscopy FMT. In the worst of cases, you could do your own and use your own donor. Of course, the donor would have to be screened. There are doctors in other places that do FMT with your own donor. I traveled to Minnesota for my first FMT and to Oakland for my second.

[Davidtm]

Hi Beth unfortunately There is only one dr I have access to with my insurance that does them and they don't allow your own donor. i would have to go out of network and can't afford to do that or fly anywhere. I had considered the home enema but no one I know personally fits even the most basic of criteria whether recent antibiotics or other reasons.

[NanciT]

David
I am so sorry you are going through this, I remember feeling similar when I could not get in with the only GI in my area and insurance for 4 months after months of treatment. I was lost, and it feels so terrible.
I did go on Dificid. You mentioned it will only cover 10 days, maybe speak with the pharmacy about getting an additional refill/cost? Or possibly calling the manufacture? If you follow a taper, I am not sure how many additional pills you will need but it may be worth looking into. Many of us have been cured with Dificid, some with the initial 10 days. I wish I had some answers for you, but maybe Dificid will work for you
Keep us updated
NanciT

[georgina]

David
I know exactly how you feel , I've been there , I've been lost with no options but I kept saying to myself that if it wanted to kill me it would have done it by now. Do not think about dying , you won't die , it's just trying to make you suffer more. And you have more options : you haven't done a long Dificid taper or maybe a long course of Dificid followed by a Rifaximine chaser or you can try Rebiotix , you should contact them and see if you can qualify for those enemas. Contact Jds about Rebiotix , she had three enemas and she can give you more details about them. Go see a CDiff specialist like : Dr.Bartlett or Dr.Sheppard or even Mayo Clinic in Arizona maybe they have donors that have a nut free diet or you can talk with an allergologist about desensitization before FMT.Don't give up , and vent away all you want , we understand and we can all relate to those tremendous frustrations!
Prayers and good thoughts for you

[beth22]

The Rebiotix is a good idea. They have a website with contact numbers. There are a lot of people who don't eat nuts. My daughter is one and I am another. I don't like them at all. We are not allergic, but just don't like them. Do you have an allergist that you see? Maybe you can ask what the risks are and if there is something you could take if you got the FMT to prevent a reaction.

[Davidtm]

Thank you everyone for the encouragement and ideas. I've spent the entire day getting dumped in other laps and shuffled around. Countless closed doors and dead ends in my search to a solution. I managed to make an appointment with the allergist for next Thursday. They have to see me in person to my question of how to do this safely. Assuming the response I get is that it's too risky and not a good idea I believe the next step would be for me to ask for a referral to a dr that does fmt and allows my own donor. How I even go about finding a local dr that does it and would let me use my own donor I have no clue. I guess it's wait till Monday and get on the phone again. You would think they would make an exception for me or create a protocol for my situation but unfortunately that doesn't seem to be the case. I feel like the hospital and powers in charge have turned their back on food allergy recurrent c diff sufferers

[roy]

Just my thoughts and maybe total wrong.
When someone eats nuts they are processed and absorbed in the stomach.
The allergic reaction is systemic and not just because nuts are in your stomach.
Would the allergen still be present in their stool?
Has the allergen been removed by the doners digestion?
Could the allergen be absorbed by the colon into the body?
I doubt if it would be as the colons the way out not the way in! No absorbtion in there, its the body's trash can!
The amount of stool used in FMT is small and all solids are removed.
If the doner stool is freeze dried or frozen can they use a small sample to do a skin scratch test to see if there's a reaction?
I am no expert but my limited knowlage of biology says that the FMT material would not reach your bloodstream.
Or at least not in the concentration that could cause a serious reaction.
Simply asking for a 24 hour stay in hospital under observation for a possible reaction might be wise though.

There's options!
Stop concentrating on the problems and find the solution!

[Davidtm]

I like your outside the box thinking Roy!
I'm going to go over all that with the allergist on Thursday. There has got to be a way. I know some peanut proteins survive the digestion process :-( but it's true the food is removed. I guess the concern is the residual small proteins floating around in there. everything I've read online is a warning to screen the donor or have them on a restrictive diet for allergens. Whether that is speculative or from experience to protect the patient I don't know. I react when I accidentally eat something and if it touches my mouth I get a histamine reaction taking place. I was worried that my entire colon would be coated in a peanut residue that would cause a huge reaction but I'm not sure either. I like the idea of testing the stool. I'll definitely ask. Trying to stay positive. There must be a way and if there isn't there should be a way. The unfortunate incidence of food allergies is on the rise and that can only mean potential for more cases like mine. Fmt saves lives and shouldn't be exclusive

[roy]

This article from 2004 says there's sensative tests to detect traces of nuts in food.
In that case the same test must be able to detect traces of nuts in poo!

http://www.dailymail.co.uk/health/artic ... -food.html

[roy]

I though the tests might be available.
This Scots company sells them for testing food.
I can't see any reason that the same test could not be used on the FMT donation.

http://foodsafety.neogen.com/en/

[ResearchGrandma]

There are now programs to desensitize people with peanut allergies to peanuts, but you probably don't have the luxury of time to do this before you get FT.

http://nefoodallergy.org/

http://www.courant.com/new-haven-living ... story.html

http://allergicliving.com/2015/07/08/fd ... h-therapy/

[amyc]

If the GI and anesthesiologist know about your allergy going in to the FMT they could control an anaphylaxis in the procedure room. I learned about a drug allergy when I got a dose of something in the recovery room after a procedure, the anesthesiologist handled it, scolded me for not telling them before hand. I had no idea haha.

[Davidtm]

Just an update and ramble:
I saw the allergist who concluded with the consultation of other allergists that my best options for an fmt were for the hospital to allow a direct donor approach (they currently only offer openbiome). Or to have the fmt through openbiome samples but be monitored onsite for complications and hospitalized for a 24 hour period to watch for allergic reactions. Im waiting for the fmt dr to review the information from my allergist and in the meantime my gi said that we can try dificid depending on what is decided if they' will or won't do an Fmt.
My last option outside of this is a private dr that is willing to perform the fmt with my own donor. This is bittersweet..
Thank you so much to Beth for linking me up with this dr. I can't begin to let you know how greatful I am to have this as an option. My family thanks you. It's been such a struggle trying to find a dr that will do this allowing my own donor so I can be safe from allergens and I'm so glad that not only is there a dr who will but he is a 35 minute drive away...
The trouble I'm finding now is that going this route is extremely expensive for me as it is out of insurance. Worth every penny but the concerns of needing more than one treatment causes me worry for my finances and families well being. I'll find a way if it comes down to it. I'd rather be around and broke than not around and only slightly less broke...
It's an option and that's all that matters.
So depending on what is decided I'll know what to do next and am taking vanco in the meantime.

My rant is this... I'm very upset at how a lot of us are treated or not treated properly regarding this disease. Sometimes I feel like we are the hidden shame of the medical world that wants so badly to keep us out of the light and off to the side.
They start us on the cheap drugs which they see as cost effective. That might be fine and dandy for the 80 percent who don't relapse. They just solved the problem for cheap. But for the ones that relapse we get put into a cycle of cheap medications and passed around from one dr to the next. Dificid was created to be a first line against c diff and yet they give flagyl. By the time dificid is prescribed its success rate plummets and further necessitates the need for longer treatment and fmt alternatives.
Eventually we wake up one day realizing we have been on medications for months and months or longer. Exposed to multiple scary relapses, time missed from work, money lost from medical bills, tears in families eyes and for what? To hopefully save the hospital money.
And now this with me.. 5 months of various vanco treatments with fmt being desperately needed but being told no because the hospitals only use openbiome? Lifesaving and life changing treatment lies in a simple 2 hour procedure that the hospital is more than capable of fascillitating yet I'm told no at every door I've knocked on?
There is something wrong with that. Food allergies should not mean exclusion from life saving treatment because it's a slight extra hassle to do it direct donor. I pray for a cure so that the growing body of young food allergy sufferers never have to experience what I've been going through. That they will never risk your life and offer a 24 hour hospital stay and monitoring instead of an hour processing a safe sample.
To be at the point like me where they are willing to walk away from a hospital you've paid 30 years worth of insurance to and pay out of pocket money your family needs and shouldn't have to pay because you are insured.
I'm not without my means now regardless of cost. I'm pushing forward the best I can.
I apologize to everyone for this long winded update and rant. I've you've read this far I applaud you. It's just important to get it out of your mind somehow before you explode. I'm greatful for everyone here and that I've got an ear that will listen.
I hope one day to post in success stories but for now I keep the fight going.
Quick recovery to everyone affected!

[beth22]

I agree with what you said. First of all, insurance companies are quick not to pay for expensive drugs saying that they are not specifically for that particular condition according to the FDA. They did this with Xifaxan for SIBO until just recently. Yet, Flagyl, which is not specifically for c difficile, is given first, while Dificid and vanco are not. In the case of vanco, they claim that they don't want to contribute to VRE by overusing the drug, but it just seems like they bend the rules to make it the cheapest way for them.

Also, if you do have to pay out of pocket, and I hope you don't, tell the doctor you have no insurance coverage. Often they will give a special rate. I don't know about the doctor I recommended to you, but my husband used him for a colonoscopy, and he got paid very little by our insurance. He is a provider, so he had to accept that as full payment. Hopefully, you can find another way. Or sometimes your insurance will allow you to go outside and they will cover it, if they can't treat you within their own system. I'm not sure how that is handled. Call your insurance company and ask.