The "Joys" of PI-IBS

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Musings
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Re: The "Joys" of PI-IBS

Postby Musings » Fri Mar 03, 2017 11:48 am

Thank you, Klor.

Started taking the enzymes yesterday (ordered Source Naturals - Daily Essential Enzymes) and don't want to be too optimistic but they appear to be helping already but must admit that drinking them mixed with water is less than a pleasant experience. Am already mostly following a low FODMAP diet but might have to be more dedicated to it.

~Lauren

PattieF
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Re: The "Joys" of PI-IBS

Postby PattieF » Sat Mar 04, 2017 1:52 pm

Dear Musings and all...

First, thanks to all the moderators and contributors and people who offer feedback and help on a regular basis. I don't know how you do it. I am overwhelmed by this illness and it's aftermath. (I say 'aftermath' cautiously). Started May 10th (I will never forget that date) with a Clindamycin Rx after an extraction. Nearly 10 months and four treatments later, I am still suffering.

I am having a horrible time with what appears to be IBS as well. I took my last of the 10 days of Difficid on December 19th and felt really good for a while. I had some bad D after Christmas despite trying to be very careful what I ate - and then another bout for which I tested. That test came back negative (in January). Yay! I truly believe if I had been given Difficid to start it would have cured the c-diff and not caused the IBS or whatever the &*%$ I have now. I'm hoping these last few days haven't been a return of c-diff and are just food related but only time will tell.

I went to a naturopath in hopes of getting more help than just an Rx for this problem back in December. He did a blood test for vitamin deficiencies and allergies. I wish that had been done a lot sooner. So besides the food sensitivities, I am now allergic (temporarily, I hope) to many foods that I had been eating in an effort to feed my starving body or help with the D, like: bananas, eggs, gluten - among other things. I was eating bananas EVERY day... and bread. I might also suggest that this blood work be done early on for anyone new to the illness so as not to exacerbate your symptoms and hinder your recovery! So for a few weeks, after stopping those foods, and with high hopes that I would be well - I did pretty good. The naturopath added VSL#3 and some bentonite clay in small small doses along with B12 and despite the now extremely limited diet I was optimistic. A few weeks ago he switched me from Florastor to another probiotic. The list of foods I can't eat or quit eating due to sensitivities, allergies, wiser choices and fear is outstanding! I've been wanting to write a list. The last few weeks I've had more D than before and not sure if it's because I'm experimenting with a few new foods, or switching from Florastor. I have lost about 22 pounds so far - not the diet plan I would recommend - though I could certainly afford it. I had gained back 4 or 5 pounds but since the allergy test and the other foods I've eliminated from my diet - I'm down 7 more pounds. Hopefully I can get a handle on this before I lose more than I can afford!

I was going to ask: how do you know if it's PI IBS, colitis, SIBO or even Crohn's disease? I sure wouldn't want to have a colonoscopy right now! But I just read about the IBS test here...

So Musings... I totally empathize with the difficulties of the food restrictions. I hope you get well and can enjoy the foods you love again soon.

I looked at the FODMAP diet (and others) and so much of the allowable foods cause issues for me because of the allergies and sensitivities. Sometimes, I just don't even want to eat at all! Bland food is getting really old... Obviously, I have found things that I can tolerate well but I would sure love to broaden the menu. It seems that most times I try something new it backfires. Call me a slow learner, I guess. Trying new things in small amounts - and infrequently...

I like the idea of trying digestive enzymes and peppermint oil extract. I'll look into these and discuss with naturopath. Has anyone tried both at the same time with negative effects? That worries me... But, if I can eat a more varied and balanced diet without consequences that would be SO awesome!

I haven't been back to the GI doc - they cancelled my last appointment in February due to inclement weather - and I haven't rescheduled. This is the one that tried to put me back on Flagyl as the 4th course of treatment and I had to fight with him to get a Difficid Rx. I'm debating on finding a third GI doc or going back to the first. Ugh.

Good luck and good health to all! Thanks for listening and helping.

Pattie

beth22
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Re: The "Joys" of PI-IBS

Postby beth22 » Sun Mar 05, 2017 1:32 am

Pattie - The same thing happened to me with food intolerances and sensitivities. I still can't eat bananas. I did have SIBO. Hang in there. It does get better eventually.

PattieF
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Re: The "Joys" of PI-IBS

Postby PattieF » Sun Mar 05, 2017 1:30 pm

Thanks Beth22! How did you learn you had SIBO? Is there a test for it? I'm hanging in there as best as I can.

Ril
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Re: The "Joys" of PI-IBS

Postby Ril » Sun Mar 05, 2017 5:24 pm

Lauren, I am not trying to sell xifaxan but just FYI, while it is true even that has a low risk for c diff because it is an antibiotic, it is sometimes used to treat c diff especially at the end or as a " chaser" with or after other meds. That info doesn't just come from experience and reading but also from my GI who is pretty knowledgeable about c diff.
Again, that is just an FYI.

Ril
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Re: The "Joys" of PI-IBS

Postby Ril » Sun Mar 05, 2017 5:32 pm

Pattie, there are a couple of ways to test for SIBO. I agree with you- it might be time to change GIs.
I too had food intolerances for a very long time. Eventually I could eat almost anything again and just a few weeks ago stopped antispasmodics, although I might need them again in the future. But it is 4 1/2 yrs out and I still can only eat small amounts of salad. I can take that after all the trial and error and suffering. Proves that there is an end eventually!

I did not choose to do the naturopath thing. While I agree there is some validity there and believe in complimentary medicine I am too much of a medical and science person first. But whatever works...

Good luck to all.
Rita

Ril
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Re: The "Joys" of PI-IBS

Postby Ril » Sun Mar 05, 2017 5:36 pm

Btw, the first way to tell what it is is by symptoms. SIBO is confirmed by test and the others -UC and Crohn's- confirmed by colonoscopy. IBS is a diagnosis of exclusion although there is now a blood test for it. Unless you have severe symptoms I would wait for the scope. That's what I did too- personal opinion only.

Musings
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Re: The "Joys" of PI-IBS

Postby Musings » Mon Mar 06, 2017 9:56 am

Thank you, Ril. Have been doing better with the enzymes so going to avoid the antibiotic for now but will discuss with my GI if I continue to have issues and/or get worse.

Pattie, I got a colonoscopy the end of January to rule out Crohn's, UC, or microscopic colitis for my continued symptoms. My GI saw nothing out of the ordinary during the procedure and biopsies came back negative (not showing any inflammation). With that information, my GI is confident that my current problems are due to PI-IBS.

As Ril mentioned, would delay the colonoscopy if you can. The prep is really rough and your GI might need a rest before going through it.

~Lauren

beth22
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Re: The "Joys" of PI-IBS

Postby beth22 » Mon Mar 06, 2017 9:38 pm

The test for SIBO is a breath test. The test for IBS is a blood test called IBSchek.

Zapper
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Re: The "Joys" of PI-IBS

Postby Zapper » Fri Mar 10, 2017 4:57 pm

I have to ask everyone on this thread...
what are your symptoms of post infectious IBS? I've recently had moments where I am very ill with uncontrollable diarrhea and and pains. Then the next day I feel better, only to eat some bland chicken and rice to be back to uncontrollable diarrhea again.
It would be nice to see what other people experience to reassure myself that I am not having another c diff relapse or reinfection.

Musings
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Re: The "Joys" of PI-IBS

Postby Musings » Fri Mar 10, 2017 5:12 pm

I will try to answer without being too TMI for this board.

My PI-IBS is a lot of wind (especially in the morning), very noisy/rumbling GI tract, daily cramps/pressure in my middle, lower pelvic area, middle back pain, and my BMs can vary greatly. On "good days", I go 1-2 times with Bristol Stool Chart Type 5 but on not-so-great days (usually brought on by food I am learning I can't tolerate/digest properly) can have a mix of diarrhea to more formed anywhere from 1-5+ times a day. Now, if I go 3+ times I take an Immodium and then am usually fine as far as movements go but still experience cramps/pressure.

Generally I stick to a very bland diet, take Align every morning, take Bentyl twice a day, drink lots of water, and also a fiber supplement. I'll be adding L-glutamine powder as suggested by a doctor today.

Sorry to hear you are suffering as well.

~Lauren

PattieF
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Re: The "Joys" of PI-IBS

Postby PattieF » Fri Mar 10, 2017 8:28 pm

I too have gut pain often, and too often D 3+ times a day. Usually for a day or two and usually because I ate something I shouldn't. Then I might barely go a day or two after that. I have been breaking out with acne all over: face, scalp, chest, belly, armpit and wonder if anyone has that kind of symptom.

Ril
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Re: The "Joys" of PI-IBS

Postby Ril » Sat Mar 11, 2017 2:48 am

Zapper, what you describe sounds like symptoms of IBS. If you are not having watery d 3 or more/day for at least 3 days it is likely not c diff. See 3 day rule under CDI section.

Rita

Zapper
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Re: The "Joys" of PI-IBS

Postby Zapper » Sun Mar 12, 2017 10:53 am

Currently I went from diarrhea to normal back to diarrhea and now only (tmi) b & m. 20+ episodes but haven't been able to really eat in 2 days which is probably why there isn't much but m to them.
What is strange is every time I relapse it's a different experience. No relapse has been anything like the others.

hledgess
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Re: The "Joys" of PI-IBS

Postby hledgess » Sun Mar 12, 2017 6:32 pm

Zapper...
20+ times a day doesn't sound like ibs.. id get retested


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