I'm really upset and can use some opinions please

[chrissy72]

I had two bouts of c.diff in the past. I've been c.diff free for almost 2 yrs now. Nobody knows how I got it. I had taken an antibiotic for a sinus infection but it was only a z-pack. My first and second bout of c.diff were about 10 or 11 months apart from each other after having a few negative stool tests. No doctor could explain that to me either.

Fast forward to recently. I started not feeling well about a month and a half ago. I really thought it was c.diff again as it was the exact same symptoms. I had frequency and dire urgency plus I was passing M and D instead of stool at times.I have no diarrhea and I had absolutely no D with either bout of c.diff too. I had two stool tests done recently which were both negative for c.diff. The last one they tested for parasites and WBC's and RBC's and that was negative as well. My primary care doctor thought I had a hemorrhoid. But she's an idiot because thats what she told me when I had c.diff two yrs ago. I plan on switching doctors but we're in the process of moving once the school year is finished. Once I settle, I plan on getting a new primary doctor.

I went to a GI specialist who did a colonoscopy a few weeks ago. There was no polyps and thank God, no cancer. When I left the colonoscopy the doctor told me I had proctitis but he was waiting to see what the biopsy said. The biopsy came back as "Active chronic proctitis" The biopsy results also say "The changes are suggestive of, but not diagnostic for idiopathic inflammatory bowel disease. The possibility of an infectious process cannot be excluded. Clinical-pathologic correlation may be useful."

I guess I was expecting the colonoscopy to be more conclusive and to test for other things besides IBD and cancer. I just figured it would also test for bacterial issues as well. So the GI told me that this will probably be a chronic illness and it looks like its a variant of ulcerative colitis. He gave me a sample of Rowasa enema which I took. But my pharmacy filled the prescription generically and I had a weird side effect the next day. My body felt like I had the flu and my legs were incredibly sore. So my GI changed the prescription to cortenema. I have a 2 week supply of it. I'm on day 9. The frequency and urgency of BM"s has decreased but I still have blood. I told the GI that yesterday when I saw him for my follow-up and his response was that I might always have blood in my stools now. He told me to finish the cortenema and see how I feel and then he would decide on what to give me next. So he's playing a wait and see kind of game. Today I started having rectal pain again and I swear to you that whatever this is plus the two previous episodes of supposed positive c.diff I had were completely the same. Its not that I can't accept having an IBD, it just doesn't all add up and there isn't enough evidence on my biopsy at this point to be conclusive about anything. The GI said I should come back after I finish the enema so he can insert a small 3" scope and take a peek to see if there's still inflammation. Well yeah, if I'm still bleeding bright red blood, I think we can skip the scope and just assume the enema hasn't worked.

My mother has suggested I get a second opinion on all of this. Is it worth it to do that? The GI might think I'm nuts, but I really think I need another stool test to check for c.diff. By the way, the GI told me yesterday that I was exhausting him with my questions. Really? I'm bleeding from my behind. You don't mind if I ask some questions. I also want to know if there are different grades of stool tests. My previous stool cultures were negative for parasites but could there have been a more thorough stool test. I also had to plead with him to do bloodwork. I asked him to check my ferritin and iron levels since I had been bleeding. My ferritin is on the very low end of normal before all of this happened. I'm tired and I feel faint lately. I'm making him check a sed rate, c.reactive protein, CBC, as well as the bloodtests for IBD markers.

I'm sorry to sound so whiny. I hope you all understand. I've just not fit the mold for any of my positive c.diff stools and between those and this proctitis, I really don't know what's going on. I thought the colonoscopy was the mother of all tests and I'm disappointed that it was not conclusive and that other things I thought would be tested, weren't. Everybody on this board has so much experience and knowledge and I really respect all of you and your opinions. What would you do if you were in my situation?

[chrissy72]

I forgot to mention that this recent bout of illness started when my entire family-husband and three kids and I , all got a stomach virus. I actually started it first a few hours after going out to dinner with my husband and oldest son. I only had a grilled vege sandwich and a side of quinoa. But we all split a piece of red velvet cake. I was always suspicious of whether or not I had food poisoning and it caused the proctitis. Or maybe it wan't food poisoning and we all had the stomach bug. The stomach virus ran its course twice for each of us in a two week period. I wonder if a virus could have caused the proctitis. I can't get a clear answer from my GI doc. As I mentioned, I don't like his wait and see approach. I don't like surprises and even if it is an IBD, I want to get it under control before it possibly moves up my colon more.

[beth22]

It doesn't sound like your doctor checked for c diff when she did the colonoscopy. I'm not sure what test they run for it, maybe a culture, but they do it. A biopsy won't show that. When I had biopsies taken after c diff, they tested for microscopic colitis, which you can get after having had a stomach virus or other infection. I would assume they did that, but ask your doctor (yes, one more question - but you pay her for that!).

There are other labs, like Genova, who do comprehensive stool analysis. You send the results to them via Fed Ex. My GI ordered that for me last year and they found some sort of overgrowth of a bacteria, which actually didn't need to be treated, but the regular labs don't run those tests. They also checked for yeast. I know they also do some type of test of c diff, but I didn't have that one run by them. What I did have done, was a research lab cultured the stool and found that yes, indeed, I do have low grade c difficile, which causes me symptoms, but often does not show positive on the regular toxin tests. Sometimes, it does however.

I have read that often c diff can be in the lower end of the colon, so I guess it is possible that your "proctitis" could be caused by c diff. I asked my GI if he wanted to check me for microscopic colitis again and his answer was, that if it showed positive this time, he would have to assume that the c diff was causing the inflammation. So, if you have inflammation in the rectal area, ask your doctor why they can't do a culture or whatever test they take with a proctological exam and send it in to see if it is c diff. That's what I would probably ask. Proctitis is just inflammation of the rectal area as far as I knowl. It can be caused by many things. I would go to another doctor as you are thinking of doing and get another opinion.

[Kathy George]

I’m in complete agreement with you in that your primary doctor is lacking as to the precise facts of C-Diff related symptoms. I agree with your mother to promptly get a second opinion. Passing M and B is not a normal occurrence and should not be taken lightly. Your colonoscopy results were not earth shattering. Proctitis is simply an inflammation of the lining of the rectum. You mentioned that the biopsy results stated "The changes are suggestive of, but not diagnostic for idiopathic inflammatory bowel disease. Idiopathic Inflammatory Bowel Disease is an easy way for the doctors to say, “I DON’T KNOW WHAT IS WRONG WITH YOU”, as tests were inconclusive. Active Ulcerative Colitis should have been recognize at some stage during the colonoscopy; Poor ANALYSIS on your GI’S part!!! In addition, the word “probably” should not be in her VOCABULARY. Again, follow your mother’s advice. She has her heart in this whole process and I think she is guiding you in the right direction. Good luck!!!!

[Mommy23]

I'm in full agreement with Beth & Kathy. I really think you need a second opinion, never hurts. As others have said blood is not a normal daily occurrence, that is just ridiculous.

I know how you feel.
After two years of being sick since cdiff I'm still left with more questions than answers.

[nsewell]

I know how you feel. I got diagnosed with cdiff 6 years ago (after being misdiagnosed for over 6 months) I changed reg doctors to a gi doctor. Well while I had him I had 3 scopes and he kept me on vanco for almost 8 months because symptoms kept coming back when I would taper..Finally I went to another GI in his office because my neighbor(who worked in their office) said this other doctor had done the fecal transplant so I felt he would know more about cdiff. Anyway this doctor did know more and right away had a plan. I did his plan and so far have been cdiff free for 5 years..This doctor also did 2 scopes. I could only test positive by them doing a scope.. So what I am saying is ALWAYS get another opinion especially if you feel you need too or are questioning the doctor you are seeing..

[beth22]

How did you finally get rid of the c diff? With a stool transfer?

[nsewell]

I was on Vanco for ever. The new doctor had me do a tapering regimen..Then I took xifaxan for a bit. I dont remember the exact dose or days on it but he had me take it because he thought I also had some SIBO going on from everything. Xifaxan is used for cdiff and sibo.. It does not work for everyone though. and belive me there was days I thought I had cdiff back after taking everything but I waited it out and have been fine ever since. I do have Ibs and have flare ups of that now but its better than the cdiff. My info is in case histories under Nichole if you want the story and doses..

[beth22]

Thanks, good to know and I'm glad that you are doing better. I took Xifaxan for SIBO post c diff too and it helped, but then I was given Cipro for another infection and it is as if I set the "reset" button and started all over again. That relapse was the worst ever and I have never been the same since. I actually may be taking Xifaxan again soon too. Thanks for posting.

[handwasher]

What is sibo? Hope you all feel better! Beth, It scares me to death to have to take another antibiotic. I can't imagine taking Cipro. Whats ironic... I am a pharmacy tech and every time, which is often, I see someone get an antibiotic I cringe and want to say NOOOOO!

[beth22]

SIBO is small intestine bacterial overgrowth. I think if you go under the search mode here, there is something written on it, if not on google. I will try to find you something and post it. If you have another intestinal infection or even a stomach virus, it can cause this. It causes an overgrowth of bacteria in the small intestine - bacteria that may not be harmful in the large intestine, but should not be in the small. It causes all kinds of digestive issues like food intolerances, a lot of gas, D, sometimes C, etc. People who have this are often made worse when taking probiotics (like me). By putting in more bacteria, even if good, it aggravates the symptoms. It is a form of IBS and some doctors think that most IBS is caused by it. In my case, using vanco for so long, caused a lot of my good bacteria to die off and then I got this overgrowth of other bacteria that made a huge imbalance in my gastro system. The trick is how to re-balance. Xifaxan is the drug of choice, because it is also used to treat c diff. In fact, many doctors use it as a chaser to vanco because it hits the small intestine where c diff can hide. Vanco pills primarily hit the colon, although I was told by the ID that the liquid form also gets the small intestine better than the pills.