C. Diff. again and again and again

[rtrospect]

Hi all. I have been stalking this site since my first diagnosis in August of 2007. It has been a mental savior to me. I am pretty sure that anyone that has experienced this deadly bug knows that it is one of the worst things to experience ever. I have had 4 bouts of c. diff, all of which were diagnosed during my ER visit (which have been numerous) or after I get admitted. A week ago I finished a long pulse/taper dose of Vanco after 5 months and already am starting to feel like garbage again. I know my body. I know what it feels like in good health and unfortunately I am now familiar with what it feels like when it is fighting the c.diff. I have no spleen, which makes me immuno compromised.....translated...very susceptible to most bugs out there. The physical aspects of the disease are awful but the mental distress lingers on, during illness as well as in between the times of being physically sick, which for me is becoming more and more. I generally put on a smile when I approach the world even though I feel like my insides are being gnawed apart by a family of hamsters living in the habit trail called my intestines. So most folks don't even realize that I am sick at all and have the same expectations of me that they have of actual healthy folks. I can't work long hours or many days at all. I don't want to go to a restaurant or movie theater. I am tired, fatigued, my muscles all hurt as well as my joints. My mind is often cloudy. I have more bad days then good right now. I used to be a vegetarian but have had to incorporate meat back into this so called diet. This is due mainly because I can now no longer eat vegetables, fruit, sugars or even dairy. Oh yes, this c. diff is doing a number on my body but I continue to fight it, even without the help of my immune system. And don't even get me started on the financial end of the disease, it's easy to go broke when you have doctors bills, hospital bills, lab testing bills, staffing bills, expensive antibiotics needed often, costly probiotics and special foods to eat. All of this to be achieved when you can't work to make money because you feel so freaking SICK.....When I first got sick I thought it was because I was approaching 40 and hey, the body ages. Boy was I wrong. My first test was done at the suggestion of a nurse. I had a torn L5 disc in my back and everyone was focused on that but I knew something else was terribly wrong. Thankfully the nurse was paying attention and sent an immediate request for the c.diff test......the results came back very quickly with a big fat POSITIVE. Well, many tests later I am now a familiar soldier in this battle against the bad bacteria known as clostridium difficle, a word I didn't think I would ever learn to pronounce. (sadly....I did). Today I am taking another joyous gift up to the lab for them to have another look about. I am feeling pretty confident that I know what the results will be but I will play the game according to the rules. maybe next step is Dificid, maybe the next step is FT I don't know, but I do have people offering to donate if needed....at least a yay for that. I am just hoping to again experience sleeping past 2-4am, not having to watch what I eat, going out and playing whenever I want and to see more smiles on my boyfriend's face. He has been an absolute saint during my times of illness, which has been many. I think often times we forget how distressing it is for our loved ones to have to watch us suffer through c. diff. The one and only positive of this bug, (if there can be any positives), my actual weight and the weight stated on my drivers license since 16 years of age, finally match (a 100 pound difference)..... Just typing this makes me feel better. : )

[getwellsoon]

I am so sorry you have been fighting for so long but am glad that the site has been such a help to you. I have been fighting CDiff since March 2011and have been through numerous relapses and illness. I am only now starting to feel a little better but it is still 2 steps forward, one back. I took Dificid and then had more symptoms but tested negative. I have had false neg. before so Dr. allowed me to taper Vanco once more. Looking back I think the Dificid finally helped me turn the corner. You should really try it, it might be your magic bullet. As we know it takes the colon many months, even years to heal and we don't know if it will ever be the same. I know right now mine isn't. There are things I can't eat either. Hang in there and you are in my prayers for an end to this nightmare of CDiff. We will continue to support you and are honored you come here for it. Carol

[rtrospect]

thanks Carol. I just took another "gift" in to the lab this morning so now I sit and wait for the results. I will be totally surprised if it comes back negative. I sent an email to my ID doc so hopefully they respond quickly and get me on some Dificid. I have a few folks stepping up to be a donor for a FT if needed. This is not what I imagined my 40s to be. Poo talk is everyday conversation nowadays...lol. These past 5 years have been the most stressful years of my life. At times I just want to rip something apart or scream at the top of my lungs. As we all know, stress doesn't help our poor GI system. I used to meditate and do yoga to help find moments of peace, but now I have a hard time trying to locate the happy place in my head when needed.(which is a shame because it used to be a pretty cool place to visit.) I still put a smile on my face because if you fake a smile long enough.....it eventually becomes real. : )

[beth22]

I share your feelings completely and your food intolerances are exactly the same as mine. No dairy, fruit, many vegetables and sugars. I thought mine started because of the FT that I had where the stool was put into the small intestine, but since you never had a FT and share the same problems, it may be the c diff itself or the vanco used to treat it I guess. I know that my food intolerances did improve when I took Xifaxan - so that might be a thought for you as a "chaser" to the next med you try. I have not had to take vanco since my FT, so that is good, but the food intolerances, gas, discomfot, etc. all continue, although more now than after the transfer. My GI wants me to do home enemas so I most likely will. Do you have a doctor that is willing to do a FT for you? I would try the Dificid first, and hopefully, like some of the others on the site, it will be what works for you. Good luck.

[amyc]

Do you feel well at the end of the vanco tapers? Maybe because of your spleen you will just need to take one vanco a day for a very long time. If it keeps things calm and allows you to enjoy your life, why not?

[Kathy George]

That’s an extremely long time to suffer from C-Diff. I did not suffer that long, however after many relapses I resorted to Dr. Borody’s Home Enema Infusion Protocol. It was successful, and I have been C-Diff free for over 3 years. I would be glad to email you the protocol for your review. Just pm me and consider it done.
Kathy

[noga]

Taking one vanco a day for a very long time have the risk of
developing of resistance in other pathogens in the microbiome (VRE and more).

[rtrospect]

Ideally I would like to not be on any antibiotics long term. Most any pharmaceuticals can cause minor to serious damage over a course of time. I am waiting for my ID doc to call this morning and give the results of my test. I know the way to get back to good health is to eat healthy foods. The only problem is that my body no longer tolerates healthy foods and it barely processes multi vitamins. I am thinking juicing so I can at least get a little bit of nutritional stuff in me. I may ask my doc to recommend a nutritionist to help me on my way. I am open to alternative treatments as well, if they have a proven and shown track record of success.

[noga]

I read in other post of you you almost only can eat Mac donalds.
I' in the same situiation.
I'm 42 years old.
Till age 40 I was a vegeterian who ate many vegetables and legumes a day.
Now' since I have C. diff I can't too much vegetables and legumes (only 2 spoon), becuase after an hour I start to feel so bad.
I now can only eat junkfood, that 2 years ago I wouldn't believe I would put such food in my mouth.

Also I'm a little bit immunosuppresed.

[beth22]

I'm the same Noga. I used to eat so many fruits and vegetables and now I can't eat them either. Just a couple of spoonfuls and no fruit at all. I was not a vegetarian and eating meat does not seem to be a problem, but I have found that I substitute breads and other carbs for the vegetables and fruit and I also can't tolerate vitamins, so I am deficient in some. I'm not sure how to start tolerating these foods again. I seem to think it will not happen. It's been a few years already, although things lately have gotten worse. After my FT, I was able to tolerate more than now. Xifaxan helped before too, but I don't want to take any now for fear of relapsing with c diff. There is a naturapath in town that gives vitamins IV, but I am not sure if that is a good idea or not, plus my insurance won't cover it. I keep reading that glutamine and other amino acids are supposed to help "heal" the intestine. Might be worth a try again. I took glutamine a few years ago for a short while - don't remember that it helped, but it didn't hurt.

[noga]

I try thinking loud why I can't digest/absorb vegetables etc.

I think of 2 things. I would love to hear more explanations

1. . inflammation in mucosa (mucosa=epithelial cells) ---> epithelial cells synthesize less enzymes to degrade the molecules of food ---> the food not being digested/absorbed  the food goes out in stool, partially undigested, and that is the soft /unformed stool of D.

Plus, the touch of this specific foods on the inflamed and hurt mucosa cause this awful feeling 20 minutes-1 hour after it reach there from the stomach.

2. decrease in specific species of bacteria that ferment/ degrade this molecules

[noga]

typing error.
 should be ---->

[beth22]

The question is, is the problem in the small intestine, the colon, or both? Sometimes I will eat a particular vegetable like spinach and the D and loose stools come 2 - 3 days later, not two hours later. Does that mean there is something in the colon that does this? To me it seems like yes, but I also have a lot of gas and discomfort about 2 hours after eating - carbs, meat, anything really, although meats gives me the least problem. I think it is in both places that there is a problem for me - colon and small intestine. Maybe a FT will at least help the colon issues. I sure hope so.

My internist told me to take the activated charcoal. He did not think the Questran was a good idea for me - said it was too strong. I guess I can try that too.

[rtrospect]

Meat seems to be one of the few things that doesn't mess with me. I can't tell if I am having problems with the c. diff trying to come back, or if my intestines just truly hate me. I have an appointment tomorrow with my ID doctor. They have tested me for c. diff toxins as well as tested for giardia and crypto.....all negative. They are going to retest tomorrow since I am still having the pain regardless of if I have eaten or not. I have the chills again, lack of appetite and over all fatique. I never had IBS before c. diff. and find it very frustrating trying to decipher the codes of, is it my colon? is it the small intestine? is it the stomach? It just seems a bit like a guessing game. Last year they removed my gallbladder and appendix the weekend I was diagnosed with the c.diff. thinking that the pain was actually from the gallbladder.....wrong. The gallbladder is gone and I still have the pain. The appendix had a stone in it so it had to be removed at the same time. So, without a spleen, a gallbladder and an appendix I have no idea what is left. The lab is culturing for other pathogens as well as culturing for the c.diff itself. If that all comes back negative, I will accept that there is no c.diff causing the problems and I will then figure out what the heck I can comfortably eat with PI-IBS. ah, so sad. I already miss chocolate, sugary cereals, giant salads, asparagus, sweet tea and PIZZA.....yes right now I am missing the pizza the most. I started this mess in 2007 at approx 250 pounds of fun and spunky thick chick and now, 5 years later, I sit here approx 165 pounds of feeling defeated thin chick......oh well, smile, smile, smile.

[beth22]

I weigh 110 and can't afford to lose any more. I am negative for c diff now for over 18 months, but the food intolerances continue. At one time, my pancreatic enzymes were elevated - maybe ask your doctor to check yours. Pancreatic insufficiency was mentioned in my case and the GI wanted me to take pancreatic enzymes, but they didn't agree with me. Supposedly they help to digest the food. I may get some OTC digestive enzymes and see if they help at all. They have for some and not for others. Not having a gall bladder can cause issues in and of itself - I think that they prescribe pancreatic enzymes for that as well. You can also ask to have your stool tested for other pathogens. Last year, I had campylobacter when I thought I was having a c diff relapse.

You could also ask about SIBO. I tested positive on a breath test. It happens a lot after having had another infection (like c diff).