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[Bobbie]

Thx., Roy. Will forward to Lauren. Best (& fastest way) for anyone who is having problems posting is to click on "Contact Us" on the home page. Lauren picks up these messages.

[TheVike]

Hi Sangeeta,
Sorry to har of your plight! Although C Diff free supposed ly after one round of treatment and no D the horrible nausea and fatigue and general feelings of malaise as welll as no return to a normal appetite stayed with me for at least 4 months... One of theses while I traveled on vacation tothe mid east for 30 days. I zspent half the time in bed drinking in Ginger Ale and Perrier. This took awhile to resolve and all to normaliza probaby close to a year before I actually again felt NORMAL. I was hospitilized for three days whil on IV Flagyl before taking the rest orallly and it is NASSSSSSSSTY! Never really had great dela of stomach pains but bloating and BAD gas have been my norm and i am two years out. I lost 40 pound in 6 week feeling so sik. Youw ill hear of similar stories as you browse the site BUT you will get over it! I went into the hosp on my 45th B day :(((((

[beth22]

Sangeeta - I had the trembling and heart palpitations before being diagnosed with c diff. For a long time the doctors didn't know what I had either, as I did not get D* with my c difficile until much later. I took vancocin and while on it, the trembling and palpitations were much better, although not completely gone and I have had them since being off medication and testing negative for c diff. I had a colonoscopy also and felt more discomfort after.

Florastor did not agree with me at all - gave me more gas than I already had, but VSL#3 did seem to help. Others have posted other probiotics that helped them. You might try some of the others and see which one is better for you. I too, had CT scan, MRI, ultrasound, even a fecal fat test to see if I was not digesting fat, but they were all ok. The only test I had post c diff that showed something was a lactulose breath test which showed a very high count for bacterial overgrowth of the small intestine and supposedly is what is making me not able to tolerate many foods and giving me gas and other intestinal problems.

I also had a capsule endoscopy - you swallow a large capsule that has a camera and takes photos of the small intestine. That also didn't show anything. I still think that my c diff is not completely gone. The bacteria in the small intestine may very well be residual c diff along with other stuff, but when I was on the vanco I did not have the symptoms and really did not lose much weight. You might ask your doctor about having more tests - the camera test is only done if they suspect something in your small intestine - in my case Crohn's - which they didn't find. The breath test is not very expensive and might give you some information. I also had blood tests to see if I was absorbing the vitamins from the food I was eating - can't remember all of them,but some were vitamins A,D, B1, B9, B12, K, folic acid, and also had magnesium and potassium tested. You may be feeling run down if you are deficient in any of these or iron. Spinach and red meat, and of course, liver is a good source of iron.

Good luck and I hope you feel better soon.

Beth

[Suezer]

I have not recovered yet from C Diff, as I am still on meds for it, taper/pulsing Vanco since February.

I can add that the pain above your navel could be simply your transverse colon,either it is still healing or you could still have some inflammation. Prior to my initial episode of C Diff my pain was 2 inches above my navel. When I had the first bout of C Diff I had terrible pain across that whole area (above the navel/under rib cage) It radiated from left to right in waves. I only mention this because prior to C Diff, I wasn't really sure why I was having pain there, I learned later it was of course my Colon. At any rate, if the pain increases or continues, maybe your Dr. could confirm exactly what is causing your pain, or find/ rule out any other causes somehow.

As far as food with Iron, there are some cereals with higher % of Iron. Also the one yogurt I found that has Iron in it is Breyers Yo-Crunch. It also has alot of Bifidus in it.

I wish you alot of luck, just keep the belief that it will get better. Apparently it just takes an awful lot of time. My last relapse lasted only 4-5 hours, and those hours did alot of damage, my colon felt inflamed for at least 2 months while tapering Vanco. It feels as if it is finally healing up, I just have yet to try to come off the meds again.
Take care!

[Hua Kul]

Sangeeta, it may be possible that you have a cdiff infection of the cecum. This causes lower right abdominal pain, fever, and nausea but rarely diarrhea. I'm not sure how that can be tested, though. It could explain why you feel so bad in general.

Elsewhere I've posted a link to a recent article about a doctor in Calgary who has developed an in-home procedure for fecal infusions, with much success.

http://cdiffsupport.com/phpBB/viewtopic.php?t=6767

God Bless,
--Hua Kul

[anlockwood]

Welcome and I am so sorry for all of your struggle. I must say my heart goes out to you for all you went through to get to the diagnosis of c diff. It is really really to bad. I know you had a lot of questions and I am an expert by no means so I can't really help out on them. I just thought of a few things. I also had severe severe abdominal pain immediately following c diff that lasted about 3 months straight and then it started to come and go. It was debilitating to say the least. There was one time I thought I was dying. I couldn't get up off the floor. Couldn't get to my infant son who was in his crib crying. Had to call my husband from work to come get me and we went straight to the er. I went through all the tests and no cause was found. I now think it is my version of IBS. I have good days and bad days. I noticed certain foods can trigger it and once they do it is pretty bad for about a week. I rarely get D but the pain is my main symptom. I take Bentyl, a pain pill if absolutely necessary and fiber. It helps.

The other thing I would like to say is "HUG YOUR BABIES". We only get so little time with them. I have a 9 year old and a 14 month old. I did happen to pass the c diff on to my infant son but he was 5 months old, I didn't know I had c diff and he was on Amoxicillan, Augmentin and the Rocepherin(sp?) shots which made him a supreme target. If you use good hand washing you aren't going to harm your kids. My 9 yr had no problems even though we were in constant close contact and didn't know what I had. You will not harm them. Don't let this nasty bug steal your joy especially your joy of your children. If we allow it do that we give it control of our lives.

I tell everyone on hear that I am more then happy to pray for them. If you would like I can add you to my prayers and if not I fully respect your personal beliefs.

Amanda

[Vikingjeff28]

Wow, you read all these posts and you just see your own story unfold time after time. I pray you get well.

[Suezer]

Sangeeta,

My eye problems began well before my initial "painful" episode of C Diff.

I had taken a round of Levaquin in late September, after which I was sticken with night sweats and frequent chills.

In November I took a round of Augmentin, after which I still had these night sweats,some chills and then the eye thing began,-very blood shot and sometimes they burned. In December I took yet another round of Augmentin, and In January after 4 days on Omnicef I was struck with active C Diff. I noticed also that my skin under my eyes,just under the tear ducts was very oily,still seems strange to me when I think about it now.

I truly feel I had C Diff brewing since at least October,on some level. In hind sight I realize the various symptoms I was experiencing were hints of what was to come..In January. My eyes only in the past month have cleared up, I dont look like I am on drugs..the blood shot effect is mostly gone. I no longer have night sweats and I have not had random chills since the early part of my taper. I also recall lower back ache in the weeks leading up to active C Diff. I still experience that at times, and mostly I believe it is due to the pulse regimen I am on is drawing out mini C Diff infections that are killed on my "on" days of Vanco.

I am only explaining all of this to point out that little symptoms here and there sometimes when put all together, paint us a picture. I at least know now the signs of C Diff activating or regrouping, which has helped my ID and I stop at least one relapse when I was pulsing every 3rd day.

I dont know what to tell you otherwise about the eye thing. I had Ulcerative colitis in my early 20s, and inflammation of the eyes goes hand in hand with not only Ulcerative Colitis, but Chrons. I believe the damaging effects of C Diff on our colons can also cause eye inflammation in some of us. I always said when my red eye was gone I would feel the C Diff was leaving as well. My colon feels like maybe it is actually healing now, so this may explain as well why my eyes are clearing up.

It is possible that you could be experiencing random inflammation in your colon, I do believe it can come and go and factors like diet, stress ect can all play a role in that.
At any rate I agree with Amanda-hug your kids, embrace every good moment/day, and keep on your Dr.(s) until you get the answers you need. I hope you find some resolution to your continuing discomfort.

Oh, and also,thank you for the supportive comments. =) Take care!

[beth22]

Sangeeta - About your eye problem - did your dr. check your thyroid levels? I had similar symptoms when my thyroid levels were off before.

Beth

[monacat]

hi sangeeta,
i have been off my last round of vanco for 7 weeks and like you am confused as to what is "normal" with recovery. I have had a really sore colon pretty much all the time for which my hot water bottle has become my best friend. I have many days where i think that I still have it and days where I feel strong(oh how i love those days!!). Cramps come and go and I too am tired and queezy alot. My iron levels have been low throughout the last year that I have had this and I have also been having a tough time absorbing anything. I am currently taking "floridix formula" which has boosted my iron up to just above normal which is more then anything else has done. it is very easy for the body to digest.
I also have 2 kids whom i am paranoid to give this to. I bleach after every bm and try to keep them in the downstairs washroom only as much as possible. if i am traveling to friends or families i take a bleach and water solution with me and spray the toilet i am using also.
good luck! this site really is a godsend!

[beth22]

Sangeeta - I wouldn't have the thyroid retested if it was ok. My doctor did the capsule endoscopy because he suspected Crohn's, but it didn't show anything. He told me that often people only have it in the small intestine and that test is a good way to see if I had it. I must say that since my c diff "recovery" I have felt worse than when I actually had it and was on vancomycin. I was able to tolerate more foods then than now. With me it started right after the colonoscopy that I had with a stool transfer and I don't know if it was the harsh prep for the colonoscopy, which I'm sure you had too - drinking the laxative or the procedure itself or the fact that the stool was put into the lower portion of my small intestine and probably contributed to the SIBO, although that is not certain, as it could have been the c diff toxin which did that according to the doctor.

It sounds like you are slowly improving if you are able to tolerate the vitamins and more foods. Even with taking iron, it takes a while to get your energy back. I used to be very iron deficient many years ago and I remember it doesn't go overnight.

If you still feel bad, you can do the breath test - just make sure if you do it that it is the lactulose one, not the others, as they are not as accurate according to what I was told. According to my doctor any infection in the digestive system, be it bacterial, viral, or parasitic can give you a small intestine bacterial overgrowth and you can have it for years and not know it. It won't show up on colonoscopy or upper endoscopy - I had both. For me, after the colonoscopy I was unable to eat foods without D* and/or cramping that I could eat previously and I began to lose a lot of weight. For other people SIBO can give other symptoms, including pain, etc. I would just ask your doctor if you can have the test. Mine didn't suggest it, I did, as I knew someone who had that, and as it turned out I seem to have broken records with how high my bacterial count was. It is not invasive - you drink about a tablespoon of a liquid artificial sugar and then sit there for about 2 hours and blow into a balloon type thing which measures your breath about every 15 minutes.

Take care,

Beth

[monacat]

No i cannot eat normally any more. I really have to watch myself and not give in to my cravings all the time. i can usually tell when my body is "weak" and so it's those times i really stay away from certain foods. I cannot eat spicy at all any more so I don't even go there. I am sticking to bland for a while. It makes it a little hard when I eat at friends as I have to be picky. I am learning my trigger foods slowly and as much as I love to eat I have to reign myself in and be mindfull of my body for the moment.
I have begun to take salmon oil(capsules) and i must say it has calmed my most recent flare up (perhaps coincedense but i experienced this before when i was quite ill, just didn't persue it. i will continue the salmon oil and see how it goes).
i don't recall but did you say you were taking a probiotic? Florastor and or something else? I am a nut about this as i really need to replace the good bacteria in my system (as we all do!).
good luck!

[beth22]

I don't know if the capsule test would show you anything. It isn't difficult, but the capsule is really big and hard to swallow. After that you don't do anything except wait for it to come out. But, the day before the test and the day of the test you can only take liquids, so I lost another pound or two that way. I would do the breath test first and see if you have any bacteria in your small intestine - this doesn't show on the capsule anyway. I don't tolerate many foods and the capsule test was normal. It is primarily used to check for Crohn's disease.

Beth

[beth22]

I forgot to post above - when I had pains in my arms and legs I was low in vitamin D - doctor did a blood test for all the vitamins. Even though you said you were tested for those already, it fluctuates from week to week and if you don't get a lot of sunlight or aren't out in the sun you can be deficient in this. Also, Florastor made me feel worse, although I know a lot of people swear by it. I think different probiotics work well for some and not others and it is a matter of trying to find which one works well for you. I have only had success with VSL#3, and in very small doses. Am about to try the Primadophilus Reuteri that others have posted about here.
Also see about getting your magnesium, potassium, calcium, and phosphorus levels checked. I just had mine rechecked because of poor diet. I know trembling can be caused by deficiency on some of these sometimes.

Beth