could use some advice

[tonia]

Hello everyone. It has been awhile since I have posted. I am now coming up on 11 months since my second FMT. Things were good for awhile, but now I am back to having daily chronic watery D. I have been tested 7 times and all have been negative, thankfully. The advice I am looking for is, when this beast and its treatments have left you with the same symptoms you had with active c diff, how on earth do you determine when to test? I know you should not test to prove a cure, but I also do want to inadvertently end up walking around contagious and just be thinking it is my new "normal". Also makes it impossible to get back to normal life minus all the precautions. At this point, the dr has suggested that I just do a test every 2 months as long as I am still having this issue. That is great, but who wants that anxiety every 2 months. Has anyone else here been left with this kind of problem and if so, how did you and your dr deal with it? I would give anything to have normal bathroom habits now.

[amyc]

I assume your doctor has tested you for parasites? If all your tests for pathogens are negative you could probably take lomotil or Imodium to stop the D without harming your health. I have read on IBS boards that some people take up to 8 Imodium a day to have normal bowel habits. Hopefully your doctor can devise a plan so you can get a normal life back.

[beth22]

Have you tried cholestyramine or Cholestid? It tends to constipate and it also carries out toxins. These need a prescription, but I would ask your doctor about it.

[georgina]

Not sure if Questran is such a great idea since she can go easily into intestinal obstruction. Have you tried to discuss with your doctor about something to calm down anxiety? That can help calm down your gut as well. Or maybe discuss some antispasmodics?

[tonia]

Hi. Thanks for your thoughts.

Georgina you are right. I have been told to stay away from anything that can slow down my gut or overly bulk up stool. So immodium type meds are out, Questran is out. My situation is just so freakin complicated. We have tried quite a few different anxiety meds but for some reason since c diff, I just dont process them right and they seem to either increase my anxiety (xanax, buspar) or take me to a very dark place (klonopin, ativan). It has been suggested by a nurse practitioner that I try some "alternative" treatment that is very controversial here in the states right now, that could also help my pain, but it just isnt my thing. I have not recently tried antispasmodics. Was on one a short time when c diff first was diagnosed. Do they judt help cramping or can it also help the D?

To the best of my knowledge I have been tested for everything, so it just feels like this is what I am stuck with. Like I said, I can deal with the D, it is just that now I dont know how I will know if the beast comes back. The symptoms are the same, I feel just as awful...so totally confusing and frustrating beyond belief.

Wouldn't it be great, if someone could make an at home c diff test? Like a pregnancy test, for those of us left with chronic D. Go on the stick in the morning to see what kind of day you will have lol

[NanciT]

I used Levsin which helped me a great deal. Maybe one of the antispasmotics will help? I think they are worth a try.
Have you watched your diet closely? For me, I found this played a great part in how I was feeling. When I felt terrible, I would go very bland for 3 days. Then slowly add things. My systems was terribly sensitive after 10 months of medications, I still have "off" times and I go back to bland and I am near the 2 years mark.
I also was convinced several times CDIFF was back especially after taking Keflex for a UTI....but have tested negative 4 times.........I do not have CDIFF any longer...just some effects it has on my system.
I recall your case was more complicated and therefore can take much longer. I wish I had some answers, some take longer.
I don't know what type of "alternative's" the NP recommended but
I continued with Bladder issues and pain post Vanco, I ended up getting a "QUELL" unit which is like a Tens unit and it is always worn on the calf. It treats systemic pain and has helped me a great deal. After 4 days, my bladder issues were gone. I still have some pain in the left side ( abdomen) but it seems to be related to what I eat and is on and off.
Hoping things improve soon!
NanciT

[Bobbie]

C diff can be an awful disease for many of us. It left me with many side effects - osteoporosis, a weakened immune system, and chronic depression and anxiety. I cannot tolerate anti depressants but do take an an anti anxiety med at night. We recently moved - after 36 years in the same house - and I had to have foot surgery for a bone spur. Add that to some long-going personal problems, and there are days I can barely get through. I've had 3 bouts of c diff since 1993 - the first lasted four years but I worked - which helped me immensely. I never dreamt I would continue to have problems.

I am going to return to aerobics soon and am hoping it will help me as it has in the past. Have you tried exercise?

Wishing you the best! Hang in there. There are many of us who did not have "typical" cases of c diff. Hopefully, researchers will eventually find a cure - just wish they would hurry up!!

[tonia]

Hallelujah! I had a "normal" bathroom visit!! Lolol so much happiness over something that so many people take for granted.

my husband said something the other day, and after he said it, I vaguely recalled Roy mentioning it a long time ago. He said maybe I am just drinking too many fluids, mostly water. I am chronically thirsty for some reason, to the point of having been checked for diabetes. So for the past 3 days, I have monitored my fluid intake and cut it back. Lo and behold it seems to have worked...albeit after I submitted my latest test this morning.

Just wanted to put this here just in case anyone else may be inadvertently doing the same thing.

[amyc]

Awesome! I hope normal potty time continues for you lol.

[iamsick]

Marvelous news Tonia!!!

[Bobbie]

Great, Tonia. Sometimes we have to be our own doctor.

[georgina]

Great to hear about the normal bathroom experience ,i would love to have one too! :) Hope the test results are negative too so your can ease your mind. Have you asked your doctor if a fiber supplement would help to firm up your stool , soluble fiber absorbs the water in your food , which slows down digestion and the insoluble fiber adds bulk to the stool, which helps move it through your digestive system quickly, and relieves constipation.
Like Bobbie said ,you should try to excercise , at least cardio , it will help with anxiety and also with the gut motility.

[Ashley20]

Glad to hear Tonia :) hope you keep feeling better... (((hugs)))

[tonia]

My test was negative. Yay!... If I am still c diff free October 8th, I will post in success stories. That will be 1 year from my 2nd transplant.

[Lisa33]

Yay! Awesome news, Tonia! I'm sure you are relieved.