PI-IBS treatment confusion

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Zapper
Regular Contributor
Posts: 255
Joined: Thu Feb 11, 2016 10:28 am

PI-IBS treatment confusion

Postby Zapper » Tue Sep 26, 2017 8:54 pm

Hi all,
My GI recently put me on Levsin (per my request) and I have been taking it 2-3 times a day for 2 weeks. It has helped me with the pains and urgency. I called my doc to refill and asked for a 30 day supply as I am using 3 a day... his response is that I shouldn't need to take that many/so often and that we should start testing to see what is wrong....
I am concerned since my last colonoscopy (I feel) caused a relapse. This phone call really bothered me.. I feel very depressed. I finally started feeling better and now I'm being told I shouldn't have to take this and basically I should be functioning normally?? I have explained this over and over about food intolerances/fecal inconvenience/pains/disabling symptoms.. and yet he thinks this is normal?
I know you can't provide medical advice but I am so lost. I honestly can't cope anymore with all of this. He is one of the best GIs in my area. I'm afraid of testing and feeding more bad news of... this is just how you are now.

Why can't I recover?

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: PI-IBS treatment confusion

Postby NanciT » Tue Sep 26, 2017 10:01 pm

I am sorry you are going through this. Post IBS can last for some time so I don't understand especially after only one month of using this medication which has really helped.
Maybe a face to fact appointment would be better. You have had a colonoscopy and been checked out. I would tell him during a visit the medication has helped and you feel you need to continue it for right now.
My experience has been I was on Levsin for 2 months and now take it once in awhile when things act up....I am 3 years out. You have mentioned he is the best in the area, maybe a visit he would have more understanding. It can take out gut time to heal.

Hang in there, I recall how depressing this can get especially when the doctors don't understand. We have seen this on the board over and over. With my 2nd GI who also was "the best" in my area, he told me I may never recover. I won't forget that day. Happy to say I proved him wrong and I often see him at the hospital because I work there.

Take care

NanciT

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

Re: PI-IBS treatment confusion

Postby Bobbie » Wed Sep 27, 2017 1:14 am

Doctors give us a experienced, educated, expensive guess. Sometimes they are right and sometimes wrong. Tell this doc I hope he will inderstand Levsin has made your life tolerable and you would like to try it for another month.

Do you know the difference between God and a doctor? God does not think he/she is a doctor.

Best of luck.

Zapper
Regular Contributor
Posts: 255
Joined: Thu Feb 11, 2016 10:28 am

Re: PI-IBS treatment confusion

Postby Zapper » Wed Sep 27, 2017 8:39 am

I'm curious if Levsin is only supposed to be a temporary prescription? I figured I would have to take it for a while...
has anyone here taken it for longer than 2-3 months with full dosing?

roy
Administrator
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Joined: Sat Aug 02, 2014 1:05 am

Re: PI-IBS treatment confusion

Postby roy » Wed Sep 27, 2017 9:16 am

Almost all medication is only temporary, your Dr would not want your system to become dependant on meds to work, they would want it to recover.

Zapper
Regular Contributor
Posts: 255
Joined: Thu Feb 11, 2016 10:28 am

Re: PI-IBS treatment confusion

Postby Zapper » Wed Sep 27, 2017 11:39 am

That makes sense Roy.. I just don't see me ever fully recovering at this point. I just want to function like a normal human being. I am so tired of tests that all come back saying I am fine when I am clearly not.
I guess I will need to follow up with him to see what the negatives are to just taking it for a while.

I am desperate to be able to eat something other than the same 10 items I keep repeating. I cry every day about it now. I honestly am very thankful for my son cause if I didn't have him to help me smile I don't think I would have made it this far.

amg
Regular Contributor
Posts: 275
Joined: Sat Oct 01, 2016 3:16 pm

Re: PI-IBS treatment confusion

Postby amg » Wed Sep 27, 2017 12:44 pm

There is such a big gap between what many patients experience post-c diff, and what doctors' expectations are of recovery. I really do wish more would be done in terms of investigating the after-effects of c diff and how we can help patients recover more normal or even satisfactory or tolerable GI function.

My daughter's ID doc did tell her it would take up to a year or more for her gut to recover from her months of relapses. We honestly felt relieved that an "expert" validated her experience. It's important for patients to advocate strongly for themselves and not accept being put into a box with expectations that they will recover in a textbook fashion. That said, if your doctor thinks you are having symptoms which warrant further investigation, your best choices are to either follow that advice or find a second opinion.

I know this road has been particularly hard for you. It's important for you to take care of yourself from multiple angles including getting enough sleep, relaxation, incorporating stress management (this sort of stuff is so hard for new moms but so crucial), and of course the right diet and specific GI stuff like you have been trying to do. I hope you get the help you need soon.

Hang in there. You can do this!

NanciT
Long Time Contributor
Posts: 3035
Joined: Thu Sep 18, 2014 12:01 pm

Re: PI-IBS treatment confusion

Postby NanciT » Wed Sep 27, 2017 1:53 pm

I completely agree with AMG. I have seen several GI's through my CDIFF nightmare and each has a different opinion. There are very few standards in the treatment of CDIFF and especially Post CDIFF IBS. It can last for awhile for some, others get over it quickly.

If you see this GI and he is not responsive to you, get another opinion.

Feel better soon!

NanciT

Zapper
Regular Contributor
Posts: 255
Joined: Thu Feb 11, 2016 10:28 am

Re: PI-IBS treatment confusion

Postby Zapper » Wed Sep 27, 2017 2:12 pm

It's so foreign to me. He is very receptive/personally calls me back/seems to have taken a personal interest in my recovery. He is highly recommended and I was his 1st failure when it came to treatments/FMTs. I don't know what another doctor could really do..
I just hate that this is my life now and I can't seem to figure out the best coping mechanism I suppose.
Either way, I am still awaiting a call back from him to set up an appt. His PA told me yesterday he is booked until end of October so it isn't like I am going to be able to see him soon anyway.


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