New to this site and 1 year with C. Diff..

[ummeow]

Alright so I am not quite sure where I should post this but I hope this is the best choice haha. I just joined this site, I am 18 and have had C. Diff for about a year now, I got it after a bunch of antibiotics for MRSA and bronchitis and a sinus infection. I have been on Flagyl, Vanco, and Difficid and had a fecal enema and I am still not better. All of this is completely frustrating me and I wanted to actually talk to or get advice from or at least have people who understand read what I have to say. To start off the doctors don't seem to tell me much I recently stopped taking my Zantac because I read that the GERD meds can mess with C. Diff, I was on Omeprazole at the beginning and they switched me to Zantac and said it wont affect C. Diff yet they actually do? So no meds for heartburn now because of the C. Diff. Also take Zofran for nausea because I get so nauseous I can't really do much and don't eat, they also gave me hydrocodone for the bad sharp cramps but I don't normally take them because I don't wanna mess my body up more, then I also have the mucus and bloody loose stool haven't had diarrhea much this whole time sorry for the graphics. I have read a lot about probiotics being good yet I have seen 5-6 doctors and they all said probiotics aren't really helpful so I've just taken them on and off, yet most people who had the more difficult cases to get rid of got better with the help of probiotics so I don't understand why doctors don't encourage that or a specific kind? I still don't know what kind I should be buying or how many I should be taking, I have taken the generic Walgreens super probiotic and Floragen, does anyone know of a specific kind that helped them or has been known to work for most people? Also found out the other day from some people from C. Diff foundation that you can keep reinfecting yourself if you don't clean around with bleach and water and wash your hands with non antibacterial soap and bleach your undies and sheets and blankets and towels? So this whole time I could have been reinfecting myself and no doctor has mentioned a cleaning regimen or mentioned any of that period? I am supposed to have another fecal transplant on Thursday but I don't know for sure about that because I haven't been on the vanco and last time it got rescheduled they wanted me on vanco until 3 days before and this would be their first time doing a fecal transplant through the nose where I am going and I guess it's actually the x ray people who place the tube? I got told that since they haven't done it this way before that that is a concern and that I might not want to go through with it and find a different GI doctor, but don't you need a referral to see a new one? I won't do it through a colonoscopy because I don't want to take any sedatives and they did a sigmoidoscopy/colonoscopy before without any meds and I screamed in pain.. I don't know.. I am not asking for medical advice but just more of opinions or advice from experience? At this point I don't know what to do anymore, what will help, what food to eat, if I'll get better, precautions, what I should do, or anything and I am sure most of you have felt this way before too. I barely eat I have lost a bunch of weight on and off, and feel like I am dying.. if there is a certain probiotic that could maybe help or advice or things I could do or eat or anything that could help me get/feel better that has helped people before please let me know, it's been a year and the doctors seem somewhat clueless, my mom tries to help but doesn't know what to do either, and idk who else to ask or go to besides people who have or are going through it all themselves. I just want to be better and feel better and be able to work and have a normal life again, I feel like I just won't ever get better which I really hope isn't the case because that wouldn't be very fun. I feel like I left some of what I want to say out but I am sure this is already way to long so I'm sorry about that, I just wanted to get all my background about this in there. If you read all of this or have advice thankyou a lot!!

[beth22]

TANDARD INTRODUCTION: Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Please Read before You Post” and “Guidelines for Posting to our Discussion Boards. (Note limit on posting length.) They will guide you in using the site and answer some frequent questions. Read Dr. Borody's article and topics in “CDI” – formerly” FAQ” – including “Hygiene” “Nutrition” and “Testing.” Also read The C. diff. Bible at http://apic.org/Resource_/EliminationGu ... fFinal.pdf.

The majority (about 80%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most eventually recover unless there are factors such as advanced age or other severe health problems. New treatments include fecal infusions and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff.

If antibiotics contributed to your C. diff, be careful about taking them again. (See “CDI – Antibiotics”). Some people tolerate them; some develop C. diff again. (See Dr. Borody's article). Don’t take medications for C. diff. unless you are tested. (See “CDI – Tests.”)

For further information see http://www.peggymemorial.org and several other support groups on FB. Do research on medical sites such as “Mayo Clinic” and “Web MD.”

This is a support site not a medical site. We can’t give you medical advice but can tell you what worked for us and offer support. No one will understand what you are going through except someone who has/had this unpredictable disease. The best protection (for you and others) is thorough hand washing and good hygiene.

Sorry that you have been through so much and at such a young age when you should be out enjoying life. It took me a long time and many treatments to finally stop testing positive for c diff. I had an NG stool transfer that did not work. I relapsed about 3 weeks later. I did have a colonoscopy transfer done and did not relapse until I was given Cipro for another infection and then it came back with a vengeance. I had another transfer both upper endoscopy and lower. I could not hold in the lower, so it did not work as well as hoped. I tested positive off and on for a while. I took Pepto Bismol and it finally stopped testing positive and I also did my own enema. Sometimes with the FT, one will not do it, especially if you have taken a lot of vanco, like I did. I personally, would not get another ng transfer. I don't think they are as effective unless you are in the beginning stages of c diff and have not been treating it for a long time. That's just my own experience and observation from reading other people's posts. I also got SIBO after my FT and the specialist says that it is not good to put colon bacteria into the small intestine. He may be right, as I got a lot of food intolerances after that.

There are doctors who do enemas if you don't want the colonoscopy, although I had propofol administered for mine and I woke up very clear-headed and had no side effects and I have side effects for just about anything.

As far as probiotics, different ones work for different people. Many take Florastor, which is a yeast based probiotic. I can't take it - I get a rash and D. I tried several. Culturelle and Align did not agree with me and they are only one strain anyway. Floragen that you are taking is supposed to be good and so is Bio-K, but it is expensive. I take a small amount of VSL#3. My mom takes bacillus coagulans. Some have taken primadophilus reuteri. My Gi thinks they do help, so I guess doctors differ in their opinions.

Good luck with whatever you decide to do about the FT. You can call around and see if any doctors near you do the enemas.

[getwellsoon]

I can't add much to this. My GI told me to take probiotics for life. I think most GI's are for them now, very few against them. If you can get permission from them I would give it a try. I am currently taking VSL3 and I have taken the Sustenex. I also was taking Forastor but I stopped that as I was having a problem with M and thought that might help. I haven't had a FT but my understanding is sometimes you need more than one, esp. someone who has been fighting as long as you have. You definitely should be on Vanco or some similar med before the transplant so I would question this. Good luck and I so hope you feel better. I take Zantac and have for 2 yrs. GI said its safe to take, not like the PPI's. If I don't take it I have terrible nausea also. Carol

[amyc]

Most of the experienced doctors do require a course of vancomycin before a fecal transplant, so you might want to ask for a vanco prescription to take before yours. I believe the colonoscopy method is more effective, but you would want to be sedated for that. Do you have bad reactions to sedation/anesthesia? The meds they use for doing the scope are very safe and they don't have to use much. I also take VSL#3 and feel like it helps me. I have to order it online but it is available at Costco pharmacies and is often carried by compounding pharmacies as well. I personally wouldn't want to be someone's first NG transplant, especially since they aren't following the normal protocol with respect to taking vancomycin before it. Do you live close to a medical school or to a major hospital? You can look at the Doctors thread on this site to find names and locations of doctors who do the FMTs.

[justme]

It has been a long time since I have visited this site, but I am still coping with the lingering side effects of C. Diff. It has been 11 months since I took my last Flagyl and started my recovery. Here in Hawaii, C. Diff is relatively rare and most doctors are not too up on all the issues of this terrible illness. I've been told that most people recover quickly and can eat normally within a short period of time. My Primary Care doctor calls me an "out-lyer". I am one of those who has not recovered quickly, and am still suffering with colitis complications (gas pain and IBS). Perhaps the reasons are due to my age (70 on Feb. 2nd), an underlying heart condition (suffered a SCA 6 years ago), have acid reflux and on PPI's and antacids, but I have been lucky that there has been no recurrence of C. Diff. I have to carefully watch what I eat. Dairy, sweets, and most vegetables except gourd type (squash, yams, eggplants, etc.) are verboten, but I seem to be able to tolerate most fruits, except citrus and berries. I have not had to take an antibiotic, but have had a bout of gastroenteritis recently which really exacerbated my colitis symptoms. Unfortunately, I am one of those who cannot take probiotics. They give me terrible gas. The effects of just one can last a week. I have tried to reintroduce them several times, but suffer the same reaction. One teaspoon of yogurt did not sit well either. I lost 40 lbs. after the first 6 weeks of this whole ordeal and have gained back about 10 lbs. Fortunately, I was bit chubby when I got sick, so I am now at a fairy good weight for my body and age. I don't know when I will finally be normal, but each month I am better than the month before. I am hoping for a full recovery, but am also being very fatalistic (if it happens great, if not - oh well, it is what it is). I am just glad I am still alive and functioning.

This disease and its after effects can take a toll on both your body and your mind. To all of you who are suffering from this illness and trying to cope - hang in there! Anxiety is another issue that accompanies this disease and that alone can take a toll on both your body and mind. I am trying to walk, exercise, and get lots of rest (a nap every day helps). I am lucky in that I am retired, but not having work as a distraction can also cause anxiety. I guess the best advice I can give is to take each day as it comes and don't worry about what will happen tomorrow. I am trying very hard to follow that advice myself. Good luck everyone . . I really do feel your pain.

[beth22]

justme - I too, am one of the ones who have lingering issues. I can't take probiotics easily either, but I find that if I put a very small amount of a capsule of VSL#3 in some applesauce, it is ok. Since I can't eat yougurt, I feel I at least get a few good bacteria this way. You might try that with a probiotic if you feel like it. It may or may not agree. The worst one for me was Florastor - enough gas to blow up a hot air balloon! Culturelle and Align did not sit well either. I also take a small amount of Pepto Bismol with my dinner most days - like 1/4 teaspoon. It seems to help, although I am trying to not use it when possible.

[Bobbie]

justme,
Another with lingering issues. I am 73 and first developed C. diff. at the age of 52. C. diff. and I will have our 2lst anniversary on March 7 - date doc. put me on Vantin and the C. diff. nightmar began.(Extenuating circumstance, however.)

I, too, have acid reflux (hiatal hernia). See if you can substitute Zantac for PPI. Some reports linked PPI's and C. diff. Later ones, however, disagree, but when have we ever seen anyone in the medical field agree on anything? Do you do all the acid reflux "stuff" - see CDI.

I, too, worked during the first times I had C. diff. I don't know how I did it, but it helped get me through it. I am retired, too, but in lots of "stuff" and am a big proponent of exercise. Good for you.

Wonder why there are so few cases of C. diff. in Hawaii?? Do you and Wen know each other? Only two I can remember from Hawaii except for another woman - who probably had C.diff. but tried to exhort money from site members for her "treatment."

Best of luck to you. Keep walking!

[justme]

Bobbie:
It has been awhile since we've chatted. I also have acid reflux from a hiatal hernia and this disease has definitely increased my symptoms. Every time I get an attack of colitis, the acid reflux symptoms kick in - dry mouth, trouble swallowing, and belching (usually in the early am and evening). I also have heart issues which may be prolonging my recovery. I increased the Prevacid from 15 mg every day to 30 mg. every other day about a week ago and today I had watery D (which scared me because it was the first time in over a year). I hope it was just a reaction to the increased PPI because I had no other symptoms and so far it was only once this afternoon and not a lot (at least so far knock on wood). I have not taken the Pepto and won't unless it happens again. I do, however, take Metamucil once a day every day, but I am reluctant to take probiotics and incur the wrath they can levy on my colon. I am going to decrease the 30 mg. PPI back to every third day and see if that was the problem. As I mentioned before, yogurt and anything with dairy plays havoc with my poor intestinal tract. I have an additional nasty little reaction to the ongoing colitis (will it never end?). When the pain hits, I get a numbness and tingling in my fingertips and balls of my feet. My cardiologist said my heart was hyper-ventilating. He had to increase one of my heart medications which has helped. Due to the prolonged illness and increase in anxiety it has caused, I am seeing a psychologist who is trying to help me cope so my blood pressure doesn't get out of control. Oh, and I also found out I am pre-diabetic! I hope that doesn't become a real issue even though my sister is diabetic and it is a family curse. I keep my weight down and eat sensibly (no sweets except fruit), and hope for the best. I have not had to take an antibiotic for one year and am trying to avoid the issues that may cause an infection by drinking tons of water to avoid a UTI, brush and floss my teeth often, and do not travel anywhere outside of Hawaii (which would not be pleasant anyway). This illness, especially if prolonged, is depressing it can be very hard to cope with emotionally. However, I am still hoping for an end to the colitis pain and being able to get back to taking classes at the local community college.

You asked about Wen. We don't know each other but did chat on this board about 6 months ago when she was a new enrollee in the C. Diff club. My PC doctor told me he has only had one other case besides mine and he sees thousands of patients each year. He thinks it may go undiagnosed here or, if it is diagnosed and prescribed flagyl (which is the primary antibiotic used to treat this in Hawaii), they get well quickly, and don't relapse or get a recurrence so it has stayed relatively uncommon. I am one of those lucky "outlyers" who are just taking a long time to recover.

[getwellsoon]

Justme, I had colitis for almost 2 yrs. post CDiff. Only in the last few months has my colon been going back to normal but still have a few lingering issues. Hang in there, for some of us it just takes so much time for the colon to heal. There is hope, I never thought I would feel better but I finally do. the M Colitis is gone also. I take Metamucil everyday also. The Dr. recommended this. Hope you continue to heal and feel back to normal soon. Carol