ENOUGH ALREADY

[justme]

Since this is the place to vent, I want to take this opportunity to do so. I have had enough of the after effects of this nasty little C. Diff. bacteria. I am in my 19th month of "recovery" and I am still not completely "recovered". Yeah, I know I am old (71 next February), have a bad ticker, a stroke last March, had to go off HRT triggering between 5-10 sweaty hot flashes a day, my arthritis is getting much worse, and . . . I still have pain in my colon every day. I try to stay away from triggers like dairy, sweets, certain vegetables, and spicy food, but it doesn't seem to matter. I don't have C. Diff (tested negative and have no symptoms), have taken no antibiotics, but my colon is still uncomfortably sensitive. Probiotics are a definite no-no and I've tried every kind, every way and even tiny doses give me bad gas pain. I guess I'm just one of those few "outlyers" (as my doctor calls me) who are VERY slow to heal. I've given up on introducing trigger food - it's not worth the pain just to enjoy a few moments of bliss. Oh well, otherwise I'm in fairly good health (at least for today). Whew . . I already feel better just for venting. To all of you who read this . . I really do feel your pain.
Aloha,
Anne

[beth22]

I am the same as you basically. I saw the GI motility specialist today and will have some stool tests. Yeast showed up before and if it does again, and maybe even if it doesn't, he wants me to take 3 days of Diflucan, an antifungal. Wouldn't it be a miracle if that cured me? I took Nystatin in 2009 and it did help, so maybe this will do something.

I was told that the post c diff stuff is usually SIBO, which is a type of IBS. You can treat it with diet, but usually they give Xifaxan. But, an overgrowth of yeast can also cause symptoms. There were a few posters who were helped by taking an anti-fungal, so maybe it is something to look into for you as well. I feel your frustration. Hang in there.

[justme]

Thanks Beth. I have an appointment with my PC doctor in 2 weeks and will ask him about this. Some days, the pain is insignificant, but other days it can be very uncomfortable. Two extra strength Tylenol and 1/2 Xanax helps, but it really just knocks it down. It occurs after I finish my morning rituals (usually after about three encounters with my potty) between 8-10 am. And, in the afternoon and evening (I guess when my colon is in processing mode). Of course, it is worse if I've gone "off the reservation" (can we say that in this PC world) and have tried something exotic (like a salad or a cookie). You and I seem to have similar digestive systems. It's interesting how similar and dissimilar everyone's experiences with C. Diff are and it appears to run the full gamut from not too bad to horrible. Take care and enjoy the rest of your birthday. Anne

[beth22]

My problems usually come after meals as well. With the diet that I've had for so long eating carbs, breads and little in the way of vegetables and no fruit, it would not surprise me if this is not yeast. I will let you know what happens. A lot of doctors don't believe in intestinal yeast overgrowth, but this GI and my other one do. I am pretty fed up with all of it too.

[getwellsoon]

I pray you both can feel better. The healing process can be so long esp. after a bad CDiff infection. Liz, I think the Duflucan is a great idea. Don't want you to have a yeast problem but if you do it would be a miracle if it cured you. I will pray for that. Anne, I feel for you also. I am healing very slowly also. I think some of my good flora was wiped out completely after all the Cdiff meds and they will never return. I pray they come up with something to replace them. I think someone is working on this aspect of Cdiff also. Hang in there you two and I keep you in prayer always.

[seekingcure]

Anne, Beth and Carol,
I can identify and empathize with each of you. I, too, am having continued issues and it's been almost a year since I finished my round of Flagyl followed by six months of Vanco. In total, I fought c-diff for almost nine months. I agree with you, Carol, that some of the good flora just never returns. and I think mine was compromised long before c-diff, as I've had IBS for most of my adult life. I'm 62 now so I think we are all around the same age. Maybe it just hits us harder. I recently had a six week bout of diarrhea and other increased symptoms, but a PCR last week was negative. Thank God for that, but I honestly would like to feel like I did the last couple of months I was on Vanco. I had the most normal BM's I had had in years during that period and no pain, which was wonderful. I'm thinking of trying the Xifaxan just to see if it helps any. Maybe I have SIBO like you, Beth, but my GI refuses to order the test for me. Don't know if it's that, though, since probiotics still seem to help me.

Praying for all of us who are suffering with c-diff and its lingering "gifts."

[Bobbie]

Yes, C. diff. is the "gift that keeps on giving." It left me with osteomyletis, chronic UTI's and IC, early-onset osteoporosis, asthma, atopic dermatitis, diverticulosis, and three periods of PTSD - (l) when my mom died;(2) when I was in a car accident, broke my wrist making my bed, and then developed C. diff. after a UTI (and ampicillin) that threatened to become a kidney infection; (3) when I had microscopic colitis. I "feel" as though I have another UTI and should get to a doctor but am tired. I've had so many, I no longer have the typical symptoms - only extreme tiredness. If I drink one more glass of water, I will float.

After every one of thebouts of C. diff. (l993-l997, l999, and Dec. 2011, I've had IBS for months. The only time I did not have it was for two years - 2009 to 2011 before my last bout. Those were my two "good years" when I felt human again. I was sick for months after an FMT in May 2012 which lasted through my son's wedding in Oct. 2012 followed by pneumonia, a UTI, microscopic colitis, and fecal enemas (ugh). I felt better for several months then.

I kept a food diary for two years when I was on Florastor/S.boulardii. Never could identify trigger foods - except for dairy products. Now do "everything in moderation, nothing to excess" and take Lact Aid before eating dairy. Sometimes it helps, sometimes it doesn't. I feel, "What the h..., I am going to enjoy the years I have left.

C. diff. ruined my younger son's graduation from high school, my older son's wedding, and many other occasions. I've lost several friends when I had to cancel activities, spent over 15 years on this site, and felt as though I was "helping" the first years but am tiring. If it weren't for all your help, I would quit!

One doc. prescribed Bentyl. It didn't help much. My heating pad is my best friend. I exercise four times a week and am in a lot of activities (fund raising, coordinating group) - which helps keep my mind off my gut- wrote a book and numerous published articles, spoke at several events about C. diff., and went to the UK 10 times. I went to MT for 10 weeks when my mother fell and broke her hip, sold her house, and moved her here. I worked during my first two bouts of C. diff. but it has colored my enjoyment of everything I accomplished.

I still have good days and bad days, will be 74 in Dec., and have dealt with C. diff. for 21 years - plus the times my son had it in l979 and 6 years later. I would like to burn all C. diff. bacteria in a raging bon fire - no chance of that. My doctor wants to put me on an anti-depressant but so far, I have refused. Gee, why should I be depressed?

Think age, severity of the infection affect our recovery- also the length and number of times you have it. All three factor with me. Most recover completely in two months to two years.

Instead of a Facebook page, I am trying to talk the site owner and Alvin into a blog - where everyone can "let it all out." Like we are doing now. So far, no luck.

See the joke I posted in Humor. We need to "dance in the rain."

What do you think of a "venting blog?"

[justme]

I love the idea of a venting blog. I also agree that our fairly advanced ages and underlying health issues have probably adversely affected our recovery rate. Like you, Bobbie, I am at constant risk for UTI's (and have had many) because I have a urethral stricture. I've also had a complete hysterectomy and now have a prolapse of my pelvic floor. However, I refuse to get an operation (the pelvic mesh ads on TV scare the hell out of me) and choose instead to control it with 100 kegel exercises per day. Needless to say, with all the water I drink to avoid a UTI, my daily trips to the john are of legendary frequency. I make sure there is a restroom wherever I go. My husband and I traveled a lot before my health issues, and I always learned how to ask "where is the restroom" in whatever language was needed. My bathroom issues have become a joke among family and friends.

I have survived quite a few "near death" experiences including a cardiac arrest 7 years ago, so I consider myself lucky to have made it to 70-1/2. I guess aging and all its pitfalls has become just another of life's "fun" little "adventures" that has to be endured. At least I still have my brain and feel lucky for that. My friend has Alzheimers and is losing herself, but her physical health is great. Getting older really does suck, but it's still better than the alternative (at least so far).

BTW, if a urethral stricture is the reason for heightened UTI risk, a drug called Flomax is very helpful. I take 2 a day. It was originally prescribed for men with prostrate thickening, but works for women with my condition also.

Happy venting everyone!
Anne

[seekingcure]

Bobbie,
You've definitely had more than your fair share of c-diff's horrors. You inspire me to "keep on keeping on!"

Can we cuss c-diff out on this "venting blog?" There sure are days when I feel like telling it a thing or two, some days when I feel like crying and some days when I feel like screaming at the top of my lungs!

[Bobbie]

I have been doing the kegels too - uro told me to "hold" for 5 min. Probably should do more. Sometimes I forget. Thanks for reminding me.

Between constant exercising and drinking fluids, life has become a big upkeep. I am so tired of bathrooms - always know where they are in every store/building I enter. Was trying on clothing last week and over estimated my control - made a dash for home - didn't quite make it. Ugh.

Smart to avoid mesh - I have two friends who just had to have it removed - had to take antibiotics. One doesn't even know what antibiotics she took!

I have a friend with dementia, too. Scary. Both my parents had it (Dad had Altz. - believe you said your mother has it, too.) As long as we have our minds, we can fight for ourselves.)

Glad you contacted Wen. What an awful time for her.

Wish I were in Hawaii with sand and surf. It's rainy and cold in Kansas!!

[Bobbie]

Correction- hold Kegel exercises for 5 counts - not 5 minutes.

[Bobbie]

Bea, you betcha we can "cuss" out C. diff. on the blog. Hope Alvin can get it installed this week. I have to do some prep stuff first and have been gone a lot.

Now, my IBS also includes diarrhea. Twice, I've been "caught" in a store and had to rush to a bathroom. Takes me back to my first days of C. diff. - where I don't want to go.

[justme]

Waiting for my colon to heal (20 months as of Nov. 8) is like watching the snail that spent several days trying to cross my carport (he didn't make it). I have eliminated all the food that causes my IBS - most vegetables, sugar, dairy, and anything even remotely spicy. But . . I still have colon pain nearly every day. If I eat just a little too much fiber - well, just let's say . . my colon gets too much exercise and it feels like my calves do after a grueling Zumba session. Evidently, my doctor said there is a drug that calms the colon being used for Colitis sufferers, but a side effect is urethral problems. Of course, for me that is not even an option given problems in that area too. I already get up all night to pee and I am so tired right now, I am falling asleep as I type this. I'm through whining now and ready for my nap.
Anne

[Bobbie]

Or like watching paint dry. Very tedious and tiresome. I do Zimba, t oo, so,for two older broads we do well. Now if only it would "cure what ails us."

Found the green tea with peach flavor and like it. Thx for the tip.

Don't think your island was affected by the lava but how about Wen?

Don't give up, and I won't either. Maybe we'll get a gold star in Heaven - or wherever. L

[beth22]

Anne - There is a Rx medical food called EnteroGam that has helped people with IBS-D predominant symptoms. I have some boxes at home. My insurance covered it, but if yours does not, it is expensive. Ask your GI about it. My GI specialist has had good luck with it with patients. I have not had D in many months, so I don't take it. But, I have read that it has helped people with the pain because it is supposed to work on the immune system in the gut and help heal it. It has some kind of beef immunoglobin protein I believe.