morning. I have suffered from IBD since my teens after 10 agonizing years of anorexia, bulimia, and laxative abuse which has left me with permanent upper, lower, and colon damage though I've been recovered for nearly 13 years. I am ambivalent about getting my hopes up with this new medication because I have literally tried every medication that can be prescribed for my chronic constipation (literally cannot have a BM without laxatives :( ) If this does not work I will be sent to UCLA yet again. I'm only 35 and my condition along with other health problems control my life. I want to live life again so badly and I'm hoping this may give me some solace until my next UCLA visit. Any suggestions? Also I am a strict vegetarian who pays close attention to my food triggers and I don't drink on account that it hurts my stomach. Suggestions welcome...
I feel for you. I just posted below on another discussion on this site. You're not alone. It's tough not to give up but I'm in my 40s and not willing to live this way if there is a better way. Hang in there. Every body functions and is built differently. My stuff may end up being more mechanical rather than about diet and meds. The hardest part for me is dealing with the debilitating times because its not something I want to share with others. I might look normal so explaining why I can't do something, like go hiking, is a bummer.
Good to see feedback on this medication. It helps me to know what others are experiencing. Been on it for month now. As I noted in earlier post, I had six pound weight gain in first week. Was hoping it was fluid and mostly it was. I always read PI on any Med and was a bit concerned that I was alone in the bloating and weight gain. I even stopped taking it for a few days and stomach was flat again. Pretty much in observation mode now. Will update Dr in next week or so. Since this is one, if not the, last resort Med for me, not sure what will come next.
There may be better forum for this part, but this Med is only one that has relieved C. ( I will move this part if I find one ). It works some days and not others. When does work, it's with six or so trips to bathroom over course of half to one hour and starting within few hours of taking in morning. Dr and PI say take 30 minutes before breakfast on empty stomach. For me, doesn't matter if I take with or without food since get same effect either way. After that bathroom time, little problem for me later in day. Between jobs now, so not sure I can chance taking this if working since when it hits its urgent and time consuming. I may use it intermittently ... like on weekends or when C is most severe. Just would have to decide if the bloating and water retention (even with taking 90 + ounces of water daily) is tolerable. Jury is still out but less than optimistic.
History Chronic severe C. 2 colon surgeries in last five yrs. Sigmoid and another piece of colon removed and rectopexy to remedy rectal prolapses. No obstructions or diverticulitis, but have small rectocele per recent dynamic MRI and ultrasound. No surgery needed. No gluten or lactose allergies. Tested negative on both. Have had both biofeedback and physical therapy (including internal and external rectal work) which helped some... more than most things. Have had SIBO test which was positive and treated with antibiotics. This definitely helped with bloating. Followed this up with prescribed probiotic VSL (heavy duty and expensive, but OTC through pharmacist ) to replenish good bacteria after antibiotics. Long term VSL not continued because no effect on C for me. Have taken meds and other things with little or no effect: zelnorn, amitiza, different probiotics specifically for C, stool softeners, Magnesium, FODMAP diet which helps a little with pain, various fiber supps Miralax, benefiber, metamucil, acacia senegal etc including various combos of them, enemas and suppositories which sometimes help a little, but mostly enemas don't even come out. Next steps per my diligent Dr. are allergy testing although allergies unlikely since so hives or breathing issues with food. Tests for intolerances not clinically validated yet according Allergy based medical societies (different results from different labs using same samples and false positives resulting in unnecessary food restriction which could impact nutrition - labs tested include those used by alternative docs and pharmacists.) Still may do blood and stool intolerance testing on my own, not as diagnostic, but as starting point for trying elimination diet (again). Last resorts per Dr are interstim implant then more surgery if interstim not successful. Doing nothing is not option because of incontinence related to severe C.
- Linzess Information for Consumers
- Linzess Information for Healthcare Professionals (includes dosage details)
- Side Effects of Linzess (detailed)
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