I have type 1. And have IBS c. I take linzess daily and that helps before that I took Amitiza only stopped this med bc insurance no longer covered it. I will say I went through several GI doctors before one actually investigated my symptoms.

Hi, thank you for your response😊 for the past six weeks I have been troubleshooting it with my G.I. doctor over the phone because I can’t afford an office visit right now, and my doctor did prescribe Linzess, ironically, I think it made my situation worse, because it definitely did not help, even when I doubled the 72 dosage. Wow, it’s sad how incompetent G.I. doctors are in my opinion, and how tone deaf they are, considering the effects of a nerve disorder on the gastrointestinal system, which is run by nerves. (if there are any gastrointestinal doctors with experience with nerve disorders reading, I would be more than happy to hear recommendations from you 🙏) At discharge from my emergency visit The doctor recommended pearl barley, did she go to medical school to recommend food as a solution to severe constipation? Silly me this whole time I have been eating prunes and apples every day hydrating every day, taking a stool softener every day MiraLAX, four times a week being active most days of the week not eating a lot of binding foods like red meat and fried foods, and this doctor recommends pearl barley, which must be the solution😂 wow thanks for nothing doc! That is great that Linzess is working for you, I am hoping for some thing just as effective for myself. Thank you for sharing

Oh goodness ! Amitiza might be effective for you. That literally worked instantly when I use to take it. Linzess takes longer to get working so to speak. But I use to go weeks without a BM it's terrible. I'm sorry you are dealing with and even more sorry for the dr who tried to suggest a nutritional item. Like those would work if the GI system was normal, but it's not hence why help is needed. Have they done a colonoscopy yet? I'm not exactly sure with type 3 but with type 1 colon cancer is a greater risk. I had my first one at 24. I hope you and your provider get down to the bottom of it. If you haven't seen a doctor through the NF clinic that may be helpful as they may be better equipped with answers.

I have IBS C as well, Amitiza okay great thank for the suggestion I will keep this medicine in mind for my next G.I. doctor visit, I need a second opinion, because the symptoms have been persisting for years during my duration with my current G.I. doctor, and I think this may be out of the scope of their experience. I was at the emergency room twice this weekend because my symptoms were so severe and I can’t let my symptoms get as bad as they were and also the medical bills that accompany all this treatment. I told the two ER doctors last night I am not leaving the hospital until I am cleaned out 😂 They finally took me seriously because they gave me a go litely and an enema and I am Much better. Thank you for being so understanding with my situation 🙏Yes it was very disappointing for that ER dr to recommend barley, I can almost guarantee that her patient who recommended this item does not have a nerve disorder.We have different G.I. systems than everyone else And require a more specialized treatment for IBD. Exactly, if my G.I. system was normal, of course more fiber would help. The only time my G.I. doctor took my NF3 diagnosis into consideration was recommending a colonoscopy when my IBS first started four years ago. I had one done and the results came back normal, Thankfully no structural concerns like polyps or schwannomas. And that was the last time my nerve disorder was ever mentioned, or taken into consideration with my IBS treatment. I did not know that there is a higher prevalence of colon cancer with NF1. Are you okay? if I may ask what type of symptoms do you have with NF1? are your symptoms manageable? Seeing an NF dr is a great idea and I’m going to look into it, thank you😊 I live in New York and I’ll look into what resources are close to me. Thank you again for your understanding 🙏

Ah I have an enumerable( meaning too many to count) amount of tumors internally have had brain tumors, spinal tumors the works. I get yearly MRIs and every two years I have A PET scan. I'm not great but I'm not bad either if they makes sense. I am in NY too, not sure your location and I don't recommend posting exact whereabouts on the post but of you go to the children tumor foundation they have a section to help locate a doctor. And course happy to be of maybe some help even if it was just letting you get the frustrations out. Yes I can't speak to all types by NF1 does pose a higher incidence of certain cancers. Like breast cancer and colon. So I am already being monitored for that.

Thank you so much for your reply, I have been attempting to respond, but Reddit is not allowing me to comment my response. There’s response is a test and then I will respond my full response if it goes through..

Reddit hates me.. I just dictated a long paragraph and read it is not allowing me to post it

Long story short thank you for taking the time to respond to me and I wish you the best with your care and treatment and if you ever need someone to vent to, you can always message me :)

I'm nf type 1 and cycle between B/C. Have cycled between bristol 1 all the way to bristol 7. "Peeing" out of butt was a new feature I learned about my body in the past 4 years... So far Amatiza has really helped during my constipation phase, though it makes me nauseous. I also noticed if I don't take my zoloft the chance of constipation is higher—and you probably know SSRIs are often added for IBS-C med regiment. I've tried miralax, stool softener and magnesium powder (that actually really helps some folks). I know some folks that are IBS-C that always take miralax no matter what with other meds/diet-adjustments they make. Food can definitely impact constipation and some fiber-rich foods can actually make situations worse, esp bulky fibers that just add to the volume of poop. For example, apple skins have insoluable fiber and that can make constipation worse by adding dry bulk. I'd try eating peeled apples instead of whole apple w/ skin while constipated. This sounds funny, but have you tried eating sugar-free candy? Sugar-free candies contain alcohol sugar that result in more water being drawn into the gut making the stool softer and therefore easier to pass. When you don't have constipation, do you know how long it takes from eating to poop? Constipation is often due to multiple causes but if you have really slow gut transit, it'd lead to constipation because your colon is just sucking out more moisture from the poop as time passes. In terms of GI docs, IBS is tricky, even for them. Besides physiological causes there is brain-gut connection and sometimes it's not just something off in the way the bowels should work, but also stress, anxiety, depression and just all the normal-living human condition can add to the whole complex situation. It will take a lot of trial and error because no solution works for everyone with IBS-C. You just have to find a GI that is willing to work with you as a team, rather than having a 'you do what i tell you' paternalistic approach. My GI admitted that FODMAP is really hard to follow and for someone like me that really love many of the 'bad' foods on the FODMAP list, that it isn't worth following if the brain part of brain-gut connection will suffer as a result. That said, my IBS isn't that bad, I only went triggered a GI visit because of a long period of bristol 6/7s that included having accidents at home... but the D phases aren't that bad so at worst I get some 6s, but mostly hangs around bristol 5 if I do get diarrhea

I switched G.I. doctors and one for a second opinion to someone more experienced with IBS, and he prescribed me a higher dose of Linzess, and when that didn’t work, he right away, referred me to a gut motility specialist, no time wasted, and I was diagnosed with type one dissergenic something and the doctor recommends going to biofeedback therapy so that’s where I’m at. Yeah I agree, I would have a hard time following the FODMAP diet as well, we still have to make sure we’re eating what we love to eat or else we’re gonna be miserable eating like a rabbit. yes, the brain - gut connection is very apparent. I have found out and become more aware of for the past few years When I would feel anxious more frequently when I was constipated, and completely relaxed after having a bowel movement. That’s great that your IBS is not that bad, believe me, IBS can be a nightmare. Thank you again for sharing and for responding to me, I hope your symptoms stay manageable :)

One of the effects of the pandemic is that I now am back to being poop-shy in public or shared toilet situations. It took college and working 9-5 for years to teach myself to poop in not-home bathrooms. I lost it over pandemic having access to home bathroom 24/7 for a while. My work is forever hybrid so I will probably never regain my public bathroom pooping ability😂 Oh ya... I know just a hint of how bad it can get---what triggered me to seek help was having accidents at home and needing to go every time I ate out, which then was rare in 2021. Bathroom was only 10 steps away when I had the biggest accident at home. That was sitting wHumbling experience for sure.

Thank you for your response and for sharing all of this information. Sugar-free candies is a great idea, I will keep this tool in my back pocket. When I was in the emergency room for constipation, I was giving in an Enema with a percentage of sorbitol, so that makes sense that it would have a laxative effect. From eating to pooping usually takes me a few days, and I understand I have a very slow G.I. system, always have I’ve noticed with age, and other factors like stress, and NF it has gotten worse over the last few months. I do my best to keep stress under control. I do meditate every day yoga every day I do not smoke, do drugs or drink alcohol.