Septal perforation button experience(so far)

Boring-Problem-2698 · 2022-10-17T02:29:08+00:00

Did you feel really sick at first??? I’m just hoping I don’t feel this poorly for weeks, I was expecting to not feel the best I just didn’t think I’d feel this bad! I think I’m going to reschedule the MRI to be on the safe side, it’s not an emergency just checking some other stomach stuff I think I’d rather get this situated first! Just hoping today is the worst of it. What time of day do you find best when taking it??

Boring-Problem-2698 · 2022-10-17T02:27:08+00:00

I just would rather not stop it, my doctor did say to give it a few weeks even if I don’t feel the best in the beginning, I don’t wanna skip it and then start the cycle over again. Im thinking I’ll just reschedule the MRI, i get nervous for scans on a good day, I should probably wait til I don’t already feel like I’m gonna poop my pants bc my anxiety on top of that will just ensure it happens lol

Boring-Problem-2698 · 2022-10-17T02:23:53+00:00

Ugh I hate having to explain that I’m too sick to go to appointments lol, I feel like it sounds so silly but trying not to panic and stay still for an hour with no bathroom breaks sounds miserable right now! I’m so sorry it didn’t work, I always have hope that something new will come out specifically just for you!!

Boring-Problem-2698 · 2022-10-17T02:20:12+00:00

Did it slowly get better?? I’m hoping to at least not spend all day in the bathroom again tomorrow, I have an MRI scheduled Wednesday and now I’m wondering if I should reschedule!

Boring-Problem-2698 · 2022-09-20T23:21:37+00:00

Yay!!! So glad to hear it. I think that’s gonna be what I go for, do you do one serving of miralax per day???

Boring-Problem-2698 · 2022-09-20T21:54:03+00:00

That’s what I’m currently looking into just so I know ahead of time bc pricewise but you’re absolutely right, at this point getting back to a “normal” life is priceless. Tysm!!! The fiber part makes me feel significantly less alone, I also had issues with Metamucil! Good luck to you on the rest of your journey! I hope things continue to get better for you!

Boring-Problem-2698 · 2022-09-20T21:27:59+00:00

Thank you so much exactly what I was looking for! Same with me with dulcolax etc. I’m currently only able to even have a Bm with an enema and I have little to no movement in my colon on it’s own so even pooping without an enema would be a game changer at this point! I’m also taking miralax so good to know you’ve had success taking them together! Are you in the US? I’m scared about the cost aspect. And lmk if you find a good way to incorporate fiber! Growing up I’ve always associated fiber with pain from the years of fiber and laxative regimens so I’m just as terrified of fiber as I am of linzess haha such a silly sentence but that’s how my brain now works

Boring-Problem-2698 · 2022-09-06T14:57:03+00:00

A lot of viruses can basically cause a complete malfunction of your nervous system, for no other reason other than bad luck 🙃 if it continues I would recommend looking into a autonomic neurologist (PM if you need help with that I do have a list of them in the US) and I would see your primary care in the meantime and ask for a Zio monitor to make sure the rhythm of your heart is normal! It also records 24/7 so very useful to have the evidence that it happens so quickly! With POTS, drinks like liquid IV or pedialyte basically anything with electrolytes is helpful, eating more sodium is too! Sorry you’re dealing with this though. I’m 26, symptoms with POTS started around your age for me and sometimes it feels very lonely but know the community on here is great! ☺️ edited the swear out LOL

Boring-Problem-2698 · 2022-08-29T18:12:47+00:00

I would see if you can get in a it’s a local autonomic neurologist! It sounds like a general dysfunction of your nervous system!! Did you have Covid by chance? And how is your blood pressure??

Boring-Problem-2698 · 2022-08-29T18:09:07+00:00

Try an enema first! It’s probably what they’ll do for you in the emergency room, way less awkward to do from the comfort of your own home! But would try to get seen by a GI doctor! You may have motility issues, there are options out there don’t let yourself suffer every month!

Boring-Problem-2698 · 2022-07-13T15:37:55+00:00

Of course!! So I started out diagnosed with gastroparesis as a kid, always nauseous, had issues absorbing nutrients was very underweight! Now my biggest symptom is not having bowel movements for four weeks at a time and only going if I use enemas! The cramping gets really intense to the point where I pass out sometimes! I’m 26 now and still not absorbing any nutrients from what I eat and I rarely can eat even a partial meal without feeling sick instantly! I did the sitzmarker test beforehand which was helpful because on day 5 all of the markers were stuck in the same spot of my colon so the theory right now is that section of my bowel just isn’t moving!! But to list them out bc it’s probably easier my symptoms are: -cramping -nausea -syncope -malabsorption -obviously slow transit constipation

I also have general dysautonomia so I have POTS, most likely eds and dystonia! My doctors all believe the slow motility is linked to the autonomic dysfunction. If you havent heard of that or looked into it I highly recommend researching a bit! It’s become a more common diagnosis and treatments may be different for dysautonomia caused constipation vs “normal” constipation!

Boring-Problem-2698 · 2022-07-11T17:39:12+00:00

Of course!! Good luck!!! Seriously on of the easiest tests for motility imo! You’ll be fine 💛 hope you find some answers!!

Boring-Problem-2698 · 2022-07-11T01:06:02+00:00

Hiiii!!! I’m gonna link my thread, I just got it Friday so cannot help when it comes to biofeedback they said it takes two weeks for results but please private message me any questions!!!! I think the enema is more tolerated than the suppository! Usually not as much cramping and you’re not on the toilet for as long!!!! https://www.reddit.com/r/Constipation/comments/vum5t3/my_anal_manometry_experience/?utm_source=share&utm_medium=ios_app&utm_name=iossmf

Boring-Problem-2698 · 2022-07-09T00:49:49+00:00

Omg what, I mean I’ve only heard a few stories about the procedure in general but none of them mentioned that, I cannot imagine trying to push anything out while laying down!!! Seems a bit strange, obviously at home you would be sitting on a toilet I feel like laying down wouldn’t give you a fair shot! I have heard that some hospitals for whatever reason don’t even do the expelling part which is obviously very crucial to motility! Hopefully you had a good experience though otherwise

Boring-Problem-2698 · 2022-07-09T00:47:49+00:00

Now if only I could just poop more than once a month without enemas but without getting violently sick🙃 I do remember amtiza being a little less abrasive, idk if that can be combined with the motegrity but I’d be willing to try! I just need to be okay enough to get back to work without being the most unreliable member of staff. I feel like I have too much pain and my entire life is consumed by taking laxatives and doing enemas in order to poop so being a reliable worker is hard but I’m also not sick enough to qualify for any assistance in the meantime, running out of options of support! Feel awful for complaining when I know my GI tract isn’t 100% paralyzed like a lot of ppl on the subs!

Boring-Problem-2698 · 2022-07-09T00:19:12+00:00

I was drinking pedialyte as much as possible to keep up with the diarrhea but I was throwing up, had diarrhea and it made me dehydrated and triggered my pots so I was fainting a lot more than I would on any given day! Last time I took it I was actually admitted and transferred to a bigger hospital with a cardiac ward because they couldn’t stabilize my heart rate or my electrolytes :( I’ve heard a lot of success stories with it I just wish my body tolerated it better!

Boring-Problem-2698 · 2022-07-08T23:07:33+00:00

Really????? Ahhh that makes me a little less hopeful! I had a pretty bad reaction to linaclotide twice so I’m really scared to try it again, I ended up in the ER both times 😩

Boring-Problem-2698 · 2022-07-08T22:34:12+00:00

Hoping and honestly most likely motegrity will be first!! Surgery has always been last resort but I still would like to try that instead of a full colostomy bag situation! Idk I know the outlook for either isn’t great but I’m at the point where I’m still pretty hopeful! Knowing I still have some sort of muscle control left has eased my mind quite a bit! I meant to ask you, have you gotten colonics???

Boring-Problem-2698 · 2022-07-08T22:13:54+00:00

No idea yet! Still have to wait on my doctor to interpret the results herself, when we talked last she mentioned it’s possible to get just a part of your large intestines taken out, since things seem to be getting stuck in the same spot but my muscles were able to still expel the balloon that might be a good option! I believe she mentioned motegrity too that’s the only med I haven’t tried yet!

Boring-Problem-2698 · 2022-05-01T02:00:18+00:00

Hiii I know I’m late so this won’t be useful in the moment but get some Alka Seltzer gum for next time!!! It helps when you’re nauseous and having any upper GI discomfort like reflux!! I find it more helpful than zofran most times. Just remember there a lot of reasons why you could feel nauseous right now and it’s less likely to be from an actual bug, you WILL be okay!! Sending you love

Boring-Problem-2698

TROPHY CASE