Yes, I want to vent

[amyc]

Well, I haven't had digestive upset to speak of for 18 months, happy as a clam. I was even able to get back to eating pizza and other cheeses if I didn't overdo it (but still can't drink milk or eat ice cream or yogurt...no big deal). And then last night, started feeling kinda off. This morning, a little better, then ... big D. I just wish I could have what may be a minor virus that I caught travelling without going into total panic mode. Even 18 months out, I still am in total panic mode. My wonderful doctor's office did just order full stool study for me, so I'm off to pick up the kit. Just...awful.

[getwellsoon]

Its probably just a bug. I'll keep you in my prayers that you aren't relapsing. Carol

[justme]

Why would you get a recurrence of C. Diff if you didn't take antibiotics or anything else that may have caused it? If you have your natural bacteria and didn't lose it for any reason, I wouldn't think C. Diff could take a hold. You probably ate something that upset your system or you may have gotten a bug that caused gastroenteritis. I know how constant the fear of getting a recurrence of C. Diff can be. I am only 5-1/2 months into my recovery and I am terrified that every bout of diarrhea or loose stool I have is a revisit of C. Diff. What is so frustrating is the lack of information and differences of opinion in medical circles about this disease. Also, treatments are so varied and confusing and what works for one person may not work for someone else. Diet(s) is another area that differs widely. Everyone's body is so different and how people react to different foods so varied that what works for one person may be an anathema to someone else. For instance, I love yogurt and ate it for years. Now I cannot eat any dairy, even yogurt. I've read that sugar is bad, but your natural bacteria is also fed by sugar. Probiotics are wonderful and some people can use them even when their natural bacteria comes back. For me, after my own bacteria came back, the probiotics gave me lots of gas and the pain was horrid. I wish this whole experience would end. I had an Sudden Cardiac Arrest 6 years ago at the L.A. Airport and the recovery period from that was shorter and much less intrusive on my life. My grandchildren are visiting in 4 weeks and I hope I am able to enjoy their visit and not be plagued with a lot of pain from my colon. The unpredictability of this disease and the colitis that occurs during the recovery period for some (I guess not all of us experience this but I am embroiled in it) can be so life altering and depressing. Enough of my vent, but I hope you feel better soon and that this is just a brief intestinal upset.

[beth22]

Justme - I am the same as you. Ate yogurt for years and now can't. Can't eat fruit. Veggies give me problems too. This whole experience has completely altered my life. I'm still trying to figure out what to do. Do you live in L.A.? If you do, there is a really good GI for IBS/SIBO issues that practices here. Let me know if you want his name, and I can pm you.

[Bobbie]

Almost everyone suffers from the stress of wondering, "Am I finally over this infection. Is this just a "bad" day or am I having a reoccurrence?" This is why we call C. diff. the "WWW" infection - "watch, wait, and worry." We've had cancer patients post C. diff. was worse than the agony of having cancer. (Chemo. treatments can contribute to contracting C. diff.)

It takes a lot of patience, humor, persistence, and money to get through a bout of C. diff. There are now new treatments, however, and many in the "pipeline" (including a vaccine) so hold on. Some day we won't have to agonize so much.

[ppp67]

well, CDIFF is new for me.
I've had loose stools ever since I was on clindamycin.
Then CDIFF, a brief 6 days respite flagl, then cdiff again, then vanco.
It's DAY 4 post VANCO. Stools are still sloppy but I don't think its cdiff.
When can I expect stools to thicken?

Is it my diet? Too many probiotics?
I've cut out beef, chicken, sugar (including fruit and some veggies that are actually fruit), caffeine.
I'm eating way more cooked veggies, rice, kefir (no milk) pickles, sauerkraut than ever.
NO, I don't want CDIFF, but when can I start adding back healthy stuff, like raw salad??
What about bread?

[justme]

Beth 22: I live in Hawaii - beautiful state, wonderful doctors, but C. Diff is not very common here and many doctors are not all that knowledgeable about it. Fortunately, I have been able to enter recovery after one treatment of flagyl - 4 times a day for 7 days - shorter and more intense and why they were prescribed that way I have no idea. My husband has been absolutely wonderful and cooks for me every night. I am going to try lamb and it will be my first red meat. My system seems to be different than many on this board as I can eat most fruits (except avocado) and most veggies (except asparagus and broccoli). Chicken, fish and eggs are my proteins. I tend to react the most to gassy food, and greasy food, but don't have too much trouble with sugar if I go easy. I only drink camomile tea and take Easy Fiber 2 x a day. I have gone gluten free as suggested by a Colitis Menu I found on the net. Doctors don't seem to be very helpful, so I am using the trial and error method. I am so glad I retired just before I got this horrid disease and am able to stay home, relax and try to heal. Because I am elderly (I hate that word), my body will probably take more time to recover, and my fear of antibiotics has increased (and they used to be such a blessing). I drink water all day long to fore go a UTI (which I have been plagued with since I gave birth 43 years ago). The water also helps flush the colon and keep hydration levels up. If I have to take antibiotics again for anything, I plan to start probiotics again regardless of the gas they may cause. I was taking them at the same time I started the flagyl which may have helped.

Bobbie: I feel exactly like you said - I feel good in the morning and by afternoon I go through the watch-wait-worry. Evenings are the worst and I can't take anti-inflammatory medication because I am on Plavix - so its Extra-Strength Tylenol and 1/4 of Tyl-3 w/codeine if the pain is bad. Every bout of diarrhea or loose stools is a worry and I pray for normal BM's. I've also read that cancer patients have an easier time than those with C. Diff - our prognosis is better in most cases, but the recovery can be slower among other things.

Take care everyone and have a good night. It is only 6 pm here, but many of you may be already in bed.

Aloha nui loa,

Ani

[wen23]

Abi I live in Hilo and like you Mds here are not well versed on cdiff I thought I was the only one in Hawaii w cdiff lots of love wen

[beth22]

I love Hawaii. We try to go every two years or so. There was a poster who lived on Maui and had to come over to CA for a stool transfer because she just could not rid herself of the c diff. That was a few years ago. Yes, it is harder to get over these things when one is older. I am not the youngest either, but for me the IBS/SIBO has been persistent for a few years now. But, for the last 2.5 years I have tested negative for c diff. Before that I would test positive intermittently, but it always would go back to negative after without antibiotics, just Pepto Bismol. I sometimes wonder if I still have it low grade or what. I wish that there was more research about it and all the other symptoms that is causes like the palpitations, and other strange things. Maybe someday someone will make a connection.

Good luck to both of you!

[Bobbie]

wen and justme,
Ah, Hawaii. Beautiful state -went there on honeymoon a zillion years ago. Would love to go back. Beats living in Kansas. Enjoy!

Don't believe we live any doctors from Hawaii in our Doctors forum. If you have one you'd like to recommend, please check with them and we'll post his/her name.

I wonder why you have so few cases of C. diff. in Hawaii?? Maybe fewer respiratory infections because of the beautiful weather and people able to be outside instead of trapped inside with others for long periods?

[amyc]

I have found that baked potatoes really soothe my GI tract, even with a tsp of butter on them. Strangely, beans seem to work well for me, and I haven't had trouble with beef, chicken, or fish. I don't eat a lot of raw fruits or veggies any more because those can cause problems. Bread and bagels are fine, and the Starbucks classic oatmeal is pretty good if you add the toppings and microwave the container for a minute at home (yes, there is a big warning to never nuke it, and the lid does blow off in the nuker sometimes, but it softens the fruit and I'm smart enough to not burn myself on the oatmeal or microwave my hand along with it.) And yes, dealing with continual bathroom anxiety is just the pits, and not many doctors seem helpful, unfortunately.

[justme]

A couple of comments regarding food and gastric issues. I've heart palpitations from time to time during this whole experience, but I think they are related to gas passing through the digestive track. To ppp67: IMO, it is too early to stop the probiotics. Make sure you are further away from the infectious stage of C. Diff and into recovery before you stop. I had to stop after a few months because my gas issues were over the top and I finally figured out it was the probiotics (I wish I could continue taking them though). I would recommend you stay on your diet for awhile. I still can't eat raw veggies (I love salad but it doesn't love me), I've tried many fruits and 1/2 apple or pear without the skin are my go-to fruits or light canned fruits. Bananas were wonderful in the early stages of recovery, but recently have increased the gas (although they do firm up your stool). I practically lived on bananas and poi in the initial stages of my recovery and still eat poi from time to time. It is too bad fresh poi is only sold here in Hawaii, but I am really thankful I had it. To Wen: Aloha! We both know how isolated Hawaii can be during something like this. We don't have access to a lot of the recommended treatments that people in the states mention for dealing with the side effects during recovery - like Culturelle, and other name brands. When I went gluten free (although I do not have Celiac disease so I cheat), I was surprised how many gluten free products were actually available here. I think Hawaii has been relatively free from many C. Diff sufferers until recently and that could explain why the doctors are so clueless. My primary care doctor has only seen one case before me and that was a year ago.

[justme]

Venting again! Will this never end? I passed my 6 month mark last week and thought by now I'd be well. No way! I think I have a ways to go yet. Yes, I am better, but I seem to see the improvements on a month by month basis. I'm better this month than last, etc. Each day seems the same, until I look back on the months. My family (son, daughter-in-law and grand-kids) are visiting (son is active duty military) and I wanted to be well for their visit. It has actually been a mixed bag. Wonderful that I get to see them as they are not stationed here, but uncomfortable in that I still have a lot of gas pain and pressure on my bladder so I have to leave during a discussion, dinner, lunch, etc. We went out to lunch at a local restaurant Monday and it was so uncomfortable. There was little I could eat as I've gone on a gluten-free, dairy free diet, and I avoid raw vegetables. I've been introducing wheat back into my diet so I can occasionally have a sandwich. During this whole ordeal (and that is exactly what it is an ORDEAL), I have to take each day as it comes and it can be pretty depressing. I lost 30 lbs. during the first 6 weeks. Fortunately, I was a bit chubby at 150 lbs. so I didn't go far below a good weight for my body. But at 113 lbs., my grandchildren were a bit shocked (grandma got real skinny). I got really depressed today, but had a good cry so I feel better. To all of you out there who are experiencing this for the first time, or are in the midst of recovery like I am -- I feel your pain! I wish doctors were more knowledgeable and diet plans more available. It would help. Thanks to all of you for this site. It helps to know I'm not alone.

[wen23]

Ani you are not alone I wish I could find the proper words to make you feel better. I am just seven weeks out and everyday is like walking in a tightrope . I feel your pain about doctors not knowing what to say or suggest. I just got a stack of bills and it looks like I am still paying for this ORDEAl. We just got to keep the faith and know that tomorrow is a new day.C diff has left me w hemmroid s and maybe IBS O just know I have not been "right"since this all started. A good cry is beneficial every now and then. Sending my love wen

[getwellsoon]

Hang in there both of you. I am 17 months out from my last meds and I still have symptoms although much better. You are so right Justme, it takes months before you can look back and say yes, I'm better now than last month. The healing is baby steps. My GI said it was like an atomic bomb going off in your guts and you will not be well for a long time. You may never be the same as you were but youwill get well. It could take over 2 yrs. and now I see what he means as I am 17 months and fighting still. I am much better though. I too got hemorrhoid issues from CDiff, also IBS, colitis, nausea etc. I just treat the symptoms and go about my business. You will both get there. I will keep you in my prayers for a faster healing than me. Carol