The "Joys" of PI-IBS

You can do it here... but no profanity, naming specific names, etc. Try to be constructive. Suggestions to improve the board or discussion forums are always appreciated.
Musings
Regular Contributor
Posts: 240
Joined: Tue Nov 01, 2016 8:38 am

The "Joys" of PI-IBS

Postby Musings » Tue Feb 21, 2017 11:55 am

Have been c.diff free since approximately the middle of December and while I will take PI-IBS over c.diff any day must admit that I am getting worn down and just aggravated dealing with PI-IBS every, single, day.

I am still on a limited, and bland, diet which is depressing given that I love food and before c.diff my favorites were Mexican (the spicier the better) and Italian (cheese and red sauce, please!) and can't tolerate either. It seems that every time I try to add something new in an attempt to have more variety my GI rebels and I have to return to my chicken, rice, soup, crackers, etc. Tried tuna fish with dairy-free/vegan mayo on toasted white bread yesterday and my bowel movements this morning cemented that was not acceptable.

Have a follow-up appointment with my GI tomorrow and planning to discuss this with her to see if it would be helpful to try some medication or supplements to help with the PI-IBS but frustrated that I had a fairly mild case of c.diff but struggling to return to anything close to "normal". Also getting back into the dating world and find it difficult to find restaurants I can go to with acceptable menu items while also not giving too many details to first dates onto why I have such a restricted diet (don't think poop talk is the best introductory conversation ;-) ).

Again, this is better than c. diff but just wish I had a timeline as to when I can get a bit more variety and get through a single day without cramping and/or pressure feelings.

~Lauren

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: The "Joys" of PI-IBS

Postby amyc » Tue Feb 21, 2017 3:14 pm

Read about mast cell activation disorder and see if the info is helpful.

Musings
Regular Contributor
Posts: 240
Joined: Tue Nov 01, 2016 8:38 am

Re: The "Joys" of PI-IBS

Postby Musings » Tue Feb 21, 2017 5:50 pm

Thank you, Amy. Doing some reading and this sounds like a real possibility as I am having other symptoms of the disorder as well. What type of doctor should be consulted for a diagnosis?

~Lauren

amyc
Long Time Contributor
Posts: 2084
Joined: Thu Nov 10, 2011 8:15 am

Re: The "Joys" of PI-IBS

Postby amyc » Tue Feb 21, 2017 7:57 pm

Very few doctors know much about it. My doctor Philip Miner in OKC was one of the pioneers in the field, but he's about to retire. I recommend you purchase Dr Lawrence Afrin's book from Amazon. My case is minor enough that I am 95% cured by taking a Claritin twice a day plus two tablets of colestipol each evening.

beth22
Long Time Contributor
Posts: 8894
Joined: Tue Apr 07, 2009 2:23 pm

Re: The "Joys" of PI-IBS

Postby beth22 » Tue Feb 21, 2017 9:16 pm

I was tested for that because I had IBS every day too. My tests were negative. I ordered the book and none of the scenarios sounded like what I had, but there are some blood tests you can do for that. I forget which they were, but I am sure Amy can tell you. There is also a specific test for IBS now. I think Quest labs does it. It is called IBSchek.

Bobbie
Administrator
Posts: 11940
Joined: Sat Aug 06, 2005 8:00 pm

Re: The "Joys" of PI-IBS

Postby Bobbie » Wed Feb 22, 2017 1:17 am

Thx for info, Beth. I see my PCP next week and ask for test.

I feel better. Was so good for so long these last painful weeks were a real blow but I should be used to it by now. It is so great to feel better again. Hooray!!

georgina
Long Time Contributor
Posts: 1971
Joined: Sat Sep 12, 2015 10:07 am

Re: The "Joys" of PI-IBS

Postby georgina » Wed Feb 22, 2017 2:04 am

Good to hear that you are feeling better Bobbie!

Musings
Regular Contributor
Posts: 240
Joined: Tue Nov 01, 2016 8:38 am

Re: The "Joys" of PI-IBS

Postby Musings » Wed Feb 22, 2017 3:18 pm

Glad to hear you are improving Bobbie!

My GI seems to think it is just persistent PI-IBS and while, hopefully, I'll be mostly normal in 3-4 months some people never return to "normal" after an infection so may need to be prepared for that outcome as a possibility. For now, she prescribed a low dose anti-spasmodic to help with the cramps/pressure, recommend 1/2 an immodium as needed, and going to adjust my fiber supplementation to see how that if affecting my GI movements.

~Lauren

justme
Long Time Contributor
Posts: 730
Joined: Mon Aug 19, 2013 3:31 pm

Re: The "Joys" of PI-IBS

Postby justme » Sun Feb 26, 2017 11:45 pm

I am one of those who has persistent PI-IBS after C. Diff. I am coming up on my 4 year anniversary of "recovery" on March 8. I haven't yet found the "silver bullet" that can keep IBS at bay and I've tried everything. There are two prescription anti-spasmodic medications that treat it (one is Bentyl). Although, they are effective, the side effects are intolerable for those of us who are of advanced age (I am 73). Unfortunately, it adversely affects memory for older people and after using it for 3 weeks, my husband noticed I was having memory issues. I am now using a Peppermint/Fennel/Ginger concoction I bought on the net to try. So far, I haven't noticed any really positive effects (but nothing bad either) I have gone back to a fairly bland menu, use the Fodmap as a guideline, and try to stay away from triggers like sweets and spicy food. Living with IBS is not pleasant, but in my case, it is better than the alternative. Good luck to all of you who have to live with this ongoing reminder of the terror that is C. Diff. I (literally) feel your pain.
Aloha,
Anne

Ril
Long Time Contributor
Posts: 1145
Joined: Sat Oct 27, 2012 2:45 pm

Re: The "Joys" of PI-IBS

Postby Ril » Mon Feb 27, 2017 2:13 am

I have had IBS my whole life but since c diff, it has been brutal. It took me several months to tolerate more foods and a year to drink wine. I have always taken anti spasmodics periodically. 4 1/2 years out I can eat everything except limited amounts of salad. My GI also told me there is no way to know when or if that will change. I had to take cholestyramine for a while, then Enteragam, a medical food, then finally xifaxan which has worked well and lasted. If I were you, I would not hesitate to discuss these medication possibilities with the doctor.

Rita

Musings
Regular Contributor
Posts: 240
Joined: Tue Nov 01, 2016 8:38 am

Re: The "Joys" of PI-IBS

Postby Musings » Mon Feb 27, 2017 9:50 am

My GI doctor prescribed a low dose of Bentyl and encouraged me to stay on the probiotics I was already taking. Might ask about Entegram though and get her thoughts. She did mention an antibiotic for PI-IBS (possibly xifaxan) but we both agreed that while relapsing on it is low that we would rather not take that chance right now.

~Lauren

Lisa33
Long Time Contributor
Posts: 2316
Joined: Mon Sep 29, 2014 1:45 pm

Re: The "Joys" of PI-IBS

Postby Lisa33 » Mon Feb 27, 2017 11:03 am

My GI had suggested trying IBGard, which is sold over the counter. It is a peppermint oil supplement that can be beneficial. I believe there are a couple of posters that have tried it. I haven't tried it yet to offer up any feedback.

justme
Long Time Contributor
Posts: 730
Joined: Mon Aug 19, 2013 3:31 pm

Re: The "Joys" of PI-IBS

Postby justme » Mon Feb 27, 2017 3:10 pm

Lisa: The peppermint oil extract is what I am using now. I'm not seeing any real effect, but nothing detrimental either. I've been on it for about a week. It's to be taken before meals and how long before depends on whether or not you suffer from heartburn. For me, any form of probiotics bother me. It's interesting to read everyone's experiences with IBS. We are all truly different and I'm sure many other factors affect our reactions.
Aloha,
Anne

Musings
Regular Contributor
Posts: 240
Joined: Tue Nov 01, 2016 8:38 am

Re: The "Joys" of PI-IBS

Postby Musings » Tue Feb 28, 2017 10:19 am

Anne, have you tried digestive enzymes? Just ordered some as they were recommended in a c.diff Facebook group and while I seem to tolerate probiotics fine, not seeing much help from them. Had a rough day yesterday and had to resort to Immodium but would rather not have to use it regularly.

~Lauren

KLor
Contributor
Posts: 72
Joined: Sat Nov 12, 2016 5:24 pm

Re: The "Joys" of PI-IBS

Postby KLor » Wed Mar 01, 2017 12:14 am

I will say that IBGard can take several weeks to really accumulate in your system and kick in. I would stick with it for at least 3 weeks before judging if it makes much difference.

I take a broad spectrum digestive enzyme called Similase, and I see a HUGE difference when I take it with every meal--fewer BMs, less indigestion/bloating/cramping. I also take an intestinal support supplement called Permeability Factors from Integrative Therapeutics 3x daily, and a Zinc-Carnosine supplement twice a day. These are for restoration of the intestinal lining and immune system support, respectively.

I also eat a low-FODMAP diet, and that has made the biggest change of all in how I'm feeling. There's abundant information about OK food and No-Go food online--basically, FODMAPs are compounds found in food that ferment in the gut while digesting. They exacerbate IBS symptoms when consumed. I went from 5 BMs daily to 2 by switching to a low-FODMAP diet, and if anything higher in FODMAPs sneaks in--I definitely feel it.

I hope some of that information can be helpful to you. Wishing you continued healing! May the good days soon outnumber the bad.


Return to “Got a suggestion or complaint? Want to vent?”



Who is online

Users browsing this forum: No registered users and 1 guest