I want off this PI IBS roller coaster!!!

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jjglad
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I want off this PI IBS roller coaster!!!

Postby jjglad » Wed Jul 20, 2016 3:22 pm

Since starting on Levsin a couple times a day with an imodium in there for "support" I have been doing decent/ok. The last couple days...ugh. Misery. more Levsin required and more Imodium required to stay out of the RR. It is so frustrating! Just when you start to feel like you can breath a little easier again...WHAM! Here comes the cramping, D and misery. I can't win. I am realizing in my journal/records that monthly time is certainly causing more issue then other times, but...??? Why is it that I am fine for a little while on 2 Levsin and an imodium and then out of no where...it is like it isn't doing anything. :(

Sorry just needed to vent! I spent almost 5 months on Vanco and then have been off of Vanco for almost 5 months. Have spent the last 2 months on Levsin. Seemed to be helping when I took two a day...the last couple days...nothing seems to help.

beth22
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Re: I want off this PI IBS roller coaster!!!

Postby beth22 » Wed Jul 20, 2016 5:18 pm

Have you tried EnteraGam? It is a prescription medical food that is for IBS-D.

jjglad
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Re: I want off this PI IBS roller coaster!!!

Postby jjglad » Wed Jul 20, 2016 7:52 pm

Yes I have. I used it during my CDiff treatment and found out thru an allergy blood test that I am sensitive to beef, so I have not taken anymore. Figured it was not helping anything if I really have an intolerance to beef...???

beth22
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Re: I want off this PI IBS roller coaster!!!

Postby beth22 » Wed Jul 20, 2016 8:50 pm

You never eat beef? What happens if you do?

jjglad
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Joined: Tue Oct 27, 2015 4:15 pm

Re: I want off this PI IBS roller coaster!!!

Postby jjglad » Wed Jul 20, 2016 9:55 pm

I have not had any beef since Cdiff. I can't imagine what would happen as my system cannot even handle the basics. Beef is one of those very hard to digest. I assumed my intolerance of beef was why Enteragam did not seem to be helping me any during CDiff.

beth22
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Re: I want off this PI IBS roller coaster!!!

Postby beth22 » Wed Jul 20, 2016 10:32 pm

It doesn't help many people, beef or no beef intolerance. Questran helps bind up c diff toxins too and some people have been helped with that. I did not do well with that, but Pepto Bismol helped me quite a bit.

jjglad
Regular Contributor
Posts: 138
Joined: Tue Oct 27, 2015 4:15 pm

Re: I want off this PI IBS roller coaster!!!

Postby jjglad » Thu Jul 21, 2016 2:14 pm

If questran is like cholestyramine thenot I have tried that too. My poor GI office has tried about everything. My combo of levsin and an imodium was keeping me ok. Not sure what is going on right now besides monthly overload of hormones.

jjglad
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Posts: 138
Joined: Tue Oct 27, 2015 4:15 pm

Re: I want off this PI IBS roller coaster!!!

Postby jjglad » Sat Jul 23, 2016 9:29 am

Despite taking generic levsin and imodium each day I still live with softly formed stool. Hard to believe that with that in my system each day that is still the best I can get. What am I doing wrong? !?
Retested earlier this week because things went really bad despite those support meds. ..Haven't heard anything back though.

getwellsoon
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Re: I want off this PI IBS roller coaster!!!

Postby getwellsoon » Sun Jul 24, 2016 6:20 am

I was on and off Vanco, Dificid for a year. I had very loose mushy stools for months and months so it does take some a very long time to repair the colon damage after a serious CDiff infection. As long as you aren't having mutltiple episodes of D everyday and just loose or mushy stools you are probably healing very nicely. It is going to take time. Hope this helps to alleviate some of the fear for you. Hang in there, it will get better.
CAROL

jjglad
Regular Contributor
Posts: 138
Joined: Tue Oct 27, 2015 4:15 pm

Re: I want off this PI IBS roller coaster!!!

Postby jjglad » Sun Jul 24, 2016 11:06 am

Thank you, Carol. It has been so frustrating when levsin/imodium works for some time and then doesn't some other times and have to double up on those to get through a day. Get so tired of being hungry and can't eat much without issue. Problem is when I have a flare up I barely eat because it's not worth it. Then I wonder if barely eating anything is making things worse. I just can't seem to find a good pattern.


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