Tired of "There must be something else wrong"

[Bobbie]

PS
I know you were a nurse for years. Think of all the "stuff" you were exposed to and didn't get. There have been many nurses who posted on this site and had the same questions.Why me? Why now? C. diff. "does a number"on our minds. We also call it "the beast." And that it is.

[JoElizabeth]

Good points, guys...thanks.

I think I'll get the tests since they're just labs...mostly I'm interested in my WBC, sed rate and C-reactive protein which would show inflammatory or infectious processes. I'm wondering if I still have the colitis based on these crazy GI symptoms I have. I just find it hard to believe that they could be all due to PI-IBS. I still have either complete C or many soft stools a day.. sometimes 5-10 or so but each time just a little bit. I've tried everything my docs have recommended so I'm at a loss for what to do.

On a lighter note, I am 3 weeks post-Dificid!! I had 2 negative toxin tests last week. I was worrying that I still had c.diff but, based on my symptoms when I was positive, I doubt it. I was SO sick then and now just tired and these GI issues.


jo

[Bobbie]

Have you tried Benefiber? After years of taking Imodium for IBS and D, I now have C. I'm drinking more water, taking Benefiber, eating prunes, and more raw veggies and some fruits. Since I also have IC, I should be careful about eating some fruits. Check with your doc. about these suggestions - shouldn't hurt, might help.

[JoElizabeth]

Thanks, Bobbie...I just started the Benefiber a couple of days ago since you said it worked for you. Starting out with just one tablespoon a day. Hope it works!


jo

[JoElizabeth]

Just wanted to update...I had that slew of labwork. 8 large vials of blood and about 30 lab tests later, I am completely healthy...no immune diseases found, no celiac, no signs of imflammation, nothing. There goes my immune response theory. :)

[beth22]

Someone just sent me something very interesting today. It is for people who exhibit IBS and SIBO symptoms. Apparently some researcher found that the type of bacteria mostly in the small intestine that doesn't belong there can cause the release of histamine causing D, gas, etc. Xifaxan is used to treat SIBO, but it only works for a while and then it comes back. I have to read more of what was sent to me, but this involves eating foods that are low in producing histamine and taking some kind of enzyme called Histame. I will post about it when I find out more, but it is very interesting for those of us who don't seem to get many answers from doctors about why we still are not well.

[JoElizabeth]

That does sound interesting Beth..please let us know. My docs are calling my symptoms PI-IBS. When I told my GI doc that I never had IBS like this, he said, "Oh, no...PI-IBS is much worse that regular IBS." Well, that's not good news! I don't know from one minute to the next how I'll be feeling. I keep thinking I'm relapsing based on my symptoms. The only thing keeping me from freaking out is that I don't have the high fever and when I have D, it's not urgent and it doesn't last all day. So any info about IBS/SIBO would be much appreciated!

jo

[amyc]

Three months after I finished vanco I took a couple of classes, and over the semester I had several incidents where I had to run out of class to make it to the bathroom on time. Every time I was certain it was a recurrence, but all the tests were negative, and it was always a transient issue that resolved on its own within a couple of days. I am now over a year out, and I had a GI virus last month that bothered me for a good couple of weeks, but never caused any B or M or multiple bouts of terrible D. So I definitely believe that the PI-IBS is real and miserable. Interestingly enough, I've started taking a claritin each morning and evening for hay fever type allergies, and my system is more normal than it's been for quite a while. It makes me wonder about the histamine connection.

[JoElizabeth]

I was wondering that same thing when I read Beth's post...would H2 blockers or antihistamines help. I also take claritin for allergies but haven't had any in a while...hmmm. I think I'll give it a try.


jo

[amyc]

10 mg of claritin can't really hurt anything. Hopefully it will help a bit. My allergist had told me taking 2 a day was no big problem either, so I take one in the am and one at bedtime when I remember.

[amyc]

Hey Jo. I just had my appt with a doc yesterday who is a national expert on IBS and mast cell disorders. I've had other symptoms before (anaphylaxis after surgery was one) that point toward my having unstable mast cells. Anyway, he switched me to 2 kiddie allegras a day. I have to go, but will try to pm you later about it.

[JoElizabeth]

amy..I just saw this on another thread. VERY interesting. I've only taken the claritin once so I will switch to this kiddy allegra. I'm allergic to dust anyway and I haven't been doing much cleaning around here. :)

Thanks!


jo

[beth22]

There is some new kind of enzyme called HISTAME that is supposed to help with food intolerances if you take it 20 minutes before a meal. I was going to try the antihistamines first and ask my GI about the Histame. He had recommended enzymes for me before, but this is specifically for histamine containing foods. I tried to post a link the other night to this, but it would not work. I will research it and try again.