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Crohn's Disease
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Posted 3/17/2016 1:49 PM (GMT 0)
I've been having daily D the past several days. I only go 1-2 times per day, but I usually tend toward C not D. I'm terrified that the c. difficile is coming back! I did put one call in to my GI last Friday, but his receptionist is a complete idiot, and he never called back. I can call him after hours on call if I really need to--it is often the only way to reach him. But here's what I'm worried about:

1. I'm not sure when stool cultures would be appropriate. I'm concerned that I might get a false positive result, and then over-treat for c. diff???

2. 1/2 of an Immodium pill does work effectively to stop the D so I can work or go to the play rehearsals. I don't know if it is bad to take though, if I really have c. diff

3. I have been under A LOT of stress, so I don't know if that might be the source of the D. I have a leading role in the play, and I'm enjoying it, but also pretty intimidated by the whole process.

Any advice is greatly appreciated. I don't want to over-react, and then consequently over-treat with more antibiotics, but I also don't want to miss the c. diff and have it spiral out of control. Thanks for any insight!!
Posted 3/17/2016 6:28 PM (GMT 0)
I think that a stool sample now would be appropriate. If it is positive, I would strongly suggest quickly doing a second FMT and maybe not even doing any antibiotics at all. It also could be post-infectious IBS, especially since it's only 1-2 times per day. I have a friend who had c. diff. (once, and he doesn't have Crohn's), and now even over a year later he still has post-infectious IBS. There is also the stress, and having D makes the stress worse!!
Posted 3/17/2016 8:54 PM (GMT 0)
Do you think though that it can be false positive?? If the c. diff test is negative, I'll be re-assured, but I'm concerned that it will be positive and we'll over treat. I was thinking Difcid and not another fecal transplant would be the next step, but I'm getting ahead of myself.

I called my doc last Friday, and when I never heard back, I called again today. The very snotty, rude receptionist said, " I gave him the message last Friday. It's not my fault if he never called you back." So I said, "Then give him another message and tell him that this is the second time I am calling." So she says, "If that's what you want." (very sarcastically) I think I'm complaining to my doc. So I can page him after hours and then the call goes directly to him. I think I'll give him till 7:00 PM tonight and then page him. The whole process is infuriating!!
Posted 3/18/2016 1:28 AM (GMT 0)
@gumby - I hope the c. diff isn't coming back. Seems like it's too early days yet to jump to that conclusion, but I can understand why you would do it. I feel like I do the same thing with strictures: first bit of lower-right abdominal pain/pressure and I'm all, "oh shiet, that's not stricture pain is it?".

Snotty, rude receptionists seem to be the default in the medical setting. You just literally have to grit your teeth and try not to stoop to their passive-aggressive level. I'm a bit envious you can page your doctor though. My dad asked me a hypothetical question about getting the surgeon to phone me back; I was like, "are you joking?". Apparently he wasn't. He's used the NHS even more than I have; he of all people should know consultants don't phone or email their patients - you can just about get a GP to phone you back, but not a consultant.
Posted 3/18/2016 1:40 AM (GMT 0)
Ugh, I HATE receptionists who ask like that. So frustrating. Calling the GI in the evening is a good idea.

I really don't think it is the c. diff. Remember, FMTs have a 90% success rate. And since Imodium is helping, I think that IBS or stress are the more likely culprits. I would do the test and if it is positive, I would wait a week and test again - that removes a lot of the chance of it being a false positive. Are you taking probiotics still?
Posted 3/18/2016 2:56 AM (GMT 0)
Thanks you guys. I have been taking the Florastor, but inconsistently. I read one article that said the first month after a transplant that you shouldn't add probiotics, and others that say you should. So I take it and then don't, because I'm all confused. I do think it helps a little though, so I'll go back on them consistently. My doc didn't call back as usual, and I felt a little better tonight and developed a sore throat, so now I'm wondering if I have a virus or something. I'll see how I am am tomorrow and decide if I should call again. I truly hate all the bureaucratic nonsense in addition to feeling ill. Ugh!!!!
Posted 3/18/2016 2:58 AM (GMT 0)
Thanks you guys. I have been taking the Florastor, but inconsistently. I read one article that said the first month after a transplant that you shouldn't add probiotics, and others that say you should. So I take it and then don't, because I'm all confused. I do think it helps a little though, so I'll go back on them consistently. My doc didn't call back as usual, and I felt a little better tonight and developed a sore throat, so now I'm wondering if I have a virus or something. I'll see how I am am tomorrow and decide if I should call again. I truly hate all the bureaucratic nonsense in addition to feeling ill. Ugh!!!!
Posted 3/18/2016 11:42 AM (GMT 0)
Sorry to hear you're not feeling up to snuff! I was wondering...have you taken Florastor before your FMT? I have had probiotics kick in my D (I actually have more issues on them than off). Totally out of my expertise here, but maybe probiotics are like GERD meds....you have to try them until you find the right one.

Also sad to hear that the role is adding to your stress. Was hoping you would roll into it---really bad pun intended. I always take roles as an escape...hoping you can start looking at this as your escape rather than a task/job. A chance to be someone without CD! I know that one of the most common acting techniques is to add a bit of yourself to the part...I always looked at it as I fully make a new person with history and a life, not necessarily anything from my own.

Definitely talk to your doc about his front desk...he may not fully realize. Or is there an Practice Manager for the office? You could always say "I was considering only calling you at night when I have problems, it is a little difficult to converse through your office team." See if he asks further questions.
Posted 3/18/2016 12:28 PM (GMT 0)
Hi Habs,
I have taken all brands of probiotics and the Florastor has seemed best, but this episode I can't figure out if it helps or hurts. I'm not consistently doing either one, and I'm not being patient enough. My doc didn't call back last night and I didn't page him because I actually felt a little better after dinner. My hubby made me mashed potatoes with Almond Milk and grilled chicken, and that seemed good. I'll wait to see what today brings.

As far as the play....my role is hilarious, and I am really excited to have the part. My whole extended family wants to come to see it. My dad who is turning 89 even wants to come! They are coming in from Vegas, Vermont, and Chicago, so I am quite touched that they all want to do that for their "baby sister." I think I'm just a bit freaked out. Frightened that I won't be healthy or skilled enough to pull it off. The other actors in the show are really nice people but all much more skilled then me, so maybe I'm a bit intimidated too. Hopefully, both my guts and my anxiety will settle down as rehearsal moves along. I love your advice...keep it coming!
Posted 3/18/2016 2:18 PM (GMT 0)
Well, I had more D this morning. I called the evil receptionist who was exceptionally rude. So I said "I guess I just have to bypass you altogether and page the doctor at night." That worked! Magically the doc called back 5 minutes later....took all the blame and said he was just busy. But I'm picking up the order for stool cultures today. Another battle, another day!
Posted 3/18/2016 5:49 PM (GMT 0)
Stool sample is a good idea. I am sorry it has been so back and forth. When you do take the Florastor, does it seem to help or hurt? How much do you take it?
Posted 3/18/2016 9:18 PM (GMT 0)
I've been taking 1-2 a day and sometimes I think it helps and then others I don't. I think I'll go back on it consistently and see what happens. I had a really bad day.....D is getting worse! It makes me mad!!!
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