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IBS-C/CIC and no medications work


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I am in desperate need of advise. I have tried every med prescribed-Linzess, Amitiza, Motegrity. You name it I have tried it. They work for about a month or two then stop. The only thing I have found that really keeps me on a somewhat regular path is Mag Oxide 400mg 3caps about every 2-3 days. 

I guess I just want to know if this is what I should expect with this condition? This diagnosis is new to me. I have altered my diet. I do low fiber, I am a very healthy eater (I am actually a Registered Dietitian). 

Should I expect this to get worse with age? 

I also recently had a diagnosis of lichen planus and I didn't know if they are related at all. I could not find any literature on it.

Thanks,

Desperate 



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Jeffrey Roberts

Hi and welcome jbondgirl2,

Sounds like you have tried a lot of medications. There are two IBS specific meds which aren't on your list, Zelnorm, which is almost identical to Motegrity, and Trulance.

Have you considered a low dose of an SSRI anti-depressant? Not because you are depressed, but in low doses they help with pain via the anti-cholinergic effect and the side effect of an SSRI is a looser stool. Low dose SSRI's are a common treatment for someone with IBS-C. We list all the different anti-depressants here.

Does this get worse as you age? Good question. We understand that constipation becomes more pronounced as we age, but not necessarily worsening IBS-C.

I'm not familiar with lichen planus. I do know that skin conditions are not uncommon with IBD rather than IBS. Something to be mindful of.

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On 10/1/2020 at 11:02 AM, jbondgirl2 said:

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I am in desperate need of advise. I have tried every med prescribed-Linzess, Amitiza, Motegrity. You name it I have tried it. They work for about a month or two then stop. The only thing I have found that really keeps me on a somewhat regular path is Mag Oxide 400mg 3caps about every 2-3 days. 

I guess I just want to know if this is what I should expect with this condition? This diagnosis is new to me. I have altered my diet. I do low fiber, I am a very healthy eater (I am actually a Registered Dietitian). 

Should I expect this to get worse with age? 

I also recently had a diagnosis of lichen planus and I didn't know if they are related at all. I could not find any literature on it.

Thanks,

Desperate 

 

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Hi.  I, too am a dietitian with IBS-C (but GI has never been my area of practice!).  I am sorry that you feel desperate. It's important to find a gastroenterologist who engages with you, and is interested in trying different drugs, modalities with you for IBS.  After a few years, I realized that my  first gastro really was interested in Inflammatory Bowel Disorders.  Now I am fortunate to work with a GI interested in IBS treatment options.  Everyone IS different, but I am helped some by Motegrity, and 1-2 doses of Miralax per day; lots of fluids.  Magnesium certainly can be helpful when needed.  If I need something more aggressive than my ~ gentle Miralax, I use a low dose of Milk of Magnesia.  

Also, I can attest to the helpfulness of SSRIs, which are sometimes prescribed for depression/anxiety, but are shown to be effective for many per the literature.  Along that line, any relaxation technique can help -- yoga, mindfulness, meditation, getting outdoors, journaling.  Exercise can be helpful.  You might be surprised to know that there is quite a bit of literature supporting the benefit of Gut-directed Hypnotherapy.  

I hope you will not imagine that this is sure to get worse as you age.  New meds come out periodically.  Some IBS patients like myself experience pain with colon spasms. But, I am encouraged to know that there is a medical device on the market for adolescents that reduces pain.  That same device is currently being investigated for adults; I like to think that will help me in a few years.   BTW, if you are an RD in the US, and a member of the Academy of Nutrition and Dietetics, you can contact headquarters. This group of RDs used to be called the Knowledge Center ( some new name now).  You can call or email them to research any connection with lichen planus.  I wish you the very best. I don't know if there is a way you can personally respond to me, but if so, please let me know if you have any further concerns.  

 

 

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  • 3 months later...

jbondgirl2, I have only CIC, for 10 years, and no prescription has helped me. No GI has helped me.

I have been relying on Dulcolax, but the pain is sometimes excruciating. My GP prescribed Lactulose and it helps with the cramps.

I fear it getting worse in terms of the current meds no longer working. 

 

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Jeffrey Roberts
On 1/30/2021 at 5:29 AM, primosprimos said:

I have only CIC, for 10 years, and no prescription has helped me. No GI has helped me.

Have you also tried Motegrity or Zelnorm? They are quite different than the other IBS-C medications.

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  • 1 month later...
On 1/31/2021 at 10:31 AM, Jeffrey Roberts said:

Have you also tried Motegrity or Zelnorm? They are quite different than the other IBS-C medications.

Jeffrey, I'm sorry I didn't see your question.

Motegrity, yes, and the same reaction as Amitiza, Trulance, and Linzess. Alone, nothing. One of them made me dizzy, don't remember which. With Dulcolax, still the pain.

Zelnorm, I read that it is not recommended for those over 65, which I am. Am I correct in my reading?

I will need to find yet another GI, since Lactulose is not helping with the pain from Dulcolax. 

Thank you for responding.

 

 

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