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Help-No RX meds help with consitpation


Nomoremeds

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Hello, first time poster to any board. At my wits end trying to figure out what is happening with me. I will start from the beginning.

At the age of about 14 my bowel movements changed and suddenly they were only happening twice a week, however, they would start with SEVERE pain in my mid abdomen for about a whole day before finally the pain would move into my lower abdomen and I would have to sit on the toilet for 3 to 4 hours before anything would come out, and the stool would be normal. I never knew when the pain would start, but once it did I could not go anywhere for the day. This continued until the age of 26 until after my second child. Then I could not longer have a BM on my own.

Since the age of 26 I have struggled with chronic constipation. I am now 40. I had tried EVERY medication to help with this and only 4 dulcolax tablets seemed to help by producing a small bowel movement once a week about 24 hours after taking them. All fiber supplements and similar medications fail and make me feel extremely sick. I have failed more than 4 two day prep colonoscopes due to the medication given not working. (My most recent one in December 2023 only finally worked after I gave up and ate food about 18 hours before my procedure. The doctor said I was completely cleaned out). Long story short, in 2017 I was put on Linzess. This was a game changer at first. I was put on the lowest dose and for about 6 months I was having sporadic BM's that were painful, crampy and all diarrhea. But hey, I was finally have success with a medication as I had been on about 12 standard IBS and IBS-C OTC and RX medications throughout the years, that had all failed.

The Linzess started to not work as well and I was put on the 290mg dosage. It worked again for about 6 months and then nothing. I was back to needing Dulcolax to help. The Linzess did help with bloating and daily pain so it was continued. In 2019 I found a regimen of meds to help me have complete bowel movements. My day started with a 290mg Linzess, 4 Dulcolax tablets two hours later, food two hours after that, Linzess 290mg 4 hours after that and that would typically start diarrhea bowel movements the next day. Once starting this regimen I could not plan to go anywhere in the later afternoon or the next day as I did not know when it would start working.

I continued this regimen until March of 2024. This is when I was given a new gastroenterologist who said I had idiopathic chronic constipation and put me on Motegrity. I was so excited. The hope a medicine that actually worked! Except it didn't. At all. All it did was cause my migraines to be worse and sever pain in my back and stomach the first few days I was on it. I was also prescribed Senna to take twice daily, which I found funny since they whole point was to stop taking laxatives (mind you, I only took 4 once a week, not daily). The Senna made me feel sick as well. I started these med on March 8, 2024. Nothing happened. I did have to switch to taking them at night which the doctor said was fine. After a week and a half of nothing, I added in my previous medication regimen above of Linzess and Dulcolax. Finally had a complete BM. Went back to Motegrity and Senna and nothing happened. I had to go back to adding in my previous regimen again. This is the only way I can have a bowel movement. I am currently still on Motegrity and Senna but they do not do anything without the other medications.

I am at a loss at to what to do and how to figure this out with my doctor. No meds are working and all tests say there is nothing wrong (well, once colonoscopy in 2014 said colitis confined to the rectum but all doctors I have seen since say I do not have it). I have had multiple colonoscopies (most recent 12/2023) and upper endoscopies (most recent 12/2023). 

Health history that may be relevant. Gall bladder removal due to functioning at 6% (only found after fighting for a HIDA scan as all other tests were normal) in 2017. ERCP due to Sphincter of Oddi (actual cause of gall bladder not functioning properly) in 2017. Unknown cause of Pancreatitis in 2018 and 2021. Had hysterotomy in 2018 and symptoms are the same as before and after so not a hormonal issue.

FUN FACT! In August 2023 I was placed on a ten day regimen of a low does of Prednisone for a sinus issue. For the first time since I was 14 years old that I can remember, on the second day of taking the medication I was having normal bowel movements! This continued the entire ten days as well as for about 4 weeks after taking the medication. Then all my previous symptoms came back and I had to go back to Linzess and Dulcolax. I mentioned this to my doctor as I was excited that maybe this could help figure out what my bowel issues really are and how to treat it. He simply said that Prednisone should not do that and that was it. I was heartbroken as I really thought after so long I might have shot of getting a better quality of life regarding my bowel habits.

If anyone has any idea what I can try, what might be going on or had a similar experience, please respond! Thank you!

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I am glad you shared your story.  So many of us are in the same sinking boat. I have basically the same problems than you, just change up the medicines a little bit. I am at the problem of laxative dependence and I don’t know what to do at this point either. It seems the slightest thing change my constipation and it is unbearable. I do recommend the FODMAP diet because it decreases the bloating and the pain. It doesn’t make me move my bowels, but it makes life less painful. Prescription drugs never helped me, even if I could afford them. I do acupressure with the benefit that it increases. My bowel sounds thus showing me that the stool is moving. I am trying MiraLAX again, but having very limited success. Heat, walking, and meditation. (calm your happy gut.)

 

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I can’t go anywhere, just like you. I try and try different combinations of OTC medication‘s like you. We are in the same boat and it’s nice that we can share our stories.

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Jeffrey Roberts

Hello @Nomoremeds,

Thank you for sharing your story. I am suspicious of the diagnosis of IBS-C and/or chronic idiopathic constipation. I wonder if you have IBD and you have narrowing or inflammation somewhere in your digestive tract. The clue is that motegrity did not work. It is a very different medication as it is a 5-HT4 agonist. It increased the amount of serotonin in your bowel. There is actually more serotonin in your bowel than your brain. In any case, increasing serotonin in your bowel causes the bowels to move things more quickly. It did not. That is suspicious.

While there is another medication called Ibsrela for IBS-C that you probably haven't tried, I think you should have either an MRE or CTE (MR enterography or CT enterography) of your abdomen. It will get a very close look at your bowels. You do not have to clean out your bowel before it. You will drink metamucil or a sorbitol drink 1 hour before they do the imaging. I'd push for the MRE because of your age so that you don't get a lot of X-rays from the CTE. I would rule out that your problem isn't higher up in your small bowel.

Prednisone is one of the first treatments for active IBD. It reduces the inflammation in your bowel. That is perhaps why it worked.

You wouldn't be the first person diagnosed with IBS only to find out that you have both IBS and IBD. I was diagnosed that way. It wasn't until I was 40 did they find my Crohn's disease in my colon. You also mentioned that a colonoscopy showed once that you had colitis in your rectum. That's not usual and a lot of doctors feel it might have been the prep. What if it wasn't.

I hope this is helpful and perhaps gives you some hope.

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