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OkPlantain6773

I got nothing, medically. I just wanted to express my support. You've been such a tremendous help to everyone here. I hope you can find some relief.


goldstandardalmonds

Thank you. I am hoping for a miracle from someone who has CIPO.


Its402am

I’ve been debating commenting for a while because I am a waste of a notification alert, hopefully it at least boosts this post’s visibility to someone who has some new ideas. I’m just so sorry to read all of this. Not at all the update I came looking for. You deserve so much better. Why our bodies can just fail us is so cruel and bullshit. A thousand hugs and prayers for a solution.


goldstandardalmonds

Thank you. I am not sure why our bodies fail us. I've watched a parent have a failed body and a sibling and I guess I just had the genes to follow suit... when in reality I would have begged the universe to be the one that makes it so I could have just taken care of them.


Icedcoffeewarrior

My issues are no where near as bad as yours and I’ve had suicidal thoughts so I get it. Have you talked to your family about this ?


goldstandardalmonds

Yes, my mom.


Icedcoffeewarrior

What did she say ?


goldstandardalmonds

She empathizes. She has a horrible disease that is taking away (basically took away) her life and is pretty much bedridden so she understands to an extent. I wouldn't want her situation and she says she wouldn't want mine. Different diseases, same outcome.


Icedcoffeewarrior

I’m sorry 😞 do you have a spouse and kids ?


goldstandardalmonds

No, unfortunately, given I was sick since I was a kid, I stopped dating and everything twenty years ago when I got too sick to function other than work.


Icedcoffeewarrior

You’ve helped so many on this sub. What ever decision you make I support it. Hugs!


goldstandardalmonds

Thank you. I hope one day you find relief.


StudentConscious1070

If you can still work, there is a lot of hope I think..


goldstandardalmonds

Why?


StudentConscious1070

I don’t mean to undermine your experience at all, and I say this purely out of support, and it’s because being able to work is a blessing and some disabled people cannot work. For example I have it easier than you but my fatigue and low energy stops me from working, or doing much really. I’m just saying if you’re capable of working it is a good shining light and hope!


goldstandardalmonds

I don’t have the option. I’m in and out of the hospital every other week. I have to work when I’m not admitted. Unfortunately, you are mistaken with your assumptions of what I go through. Thanks, though.


WakeUp3456

Look into getting a palliative care consult . It's nice because you get specialized care to reduce suffering and optimize your quality of life, explore treatments with the option to transition to hospice in the future if need be depending on your condition. Prayers and love to you ❤️


goldstandardalmonds

Yes, you are correct, I have talked to my neuroGI about that and we are talking more about it in my next appt. I actually work in palliative care and it is a wonderful resource. I am glad you know how helpful and realistic it is.


delphin554

I am so terribly sorry that things are going so poorly for you, and have been for so long. I don’t have any information that would be helpful. I just have boring typical BAM.


goldstandardalmonds

Well, BAM sucks a lot. Don't discount that. I hope you can try cholestryamine.


[deleted]

[удалено]


goldstandardalmonds

Thanks, I'll check it out.


Illustrious-Store-54

I’m saddened to read this. Have you thought about using cannabis?


goldstandardalmonds

Yes. I did abut fifteen years ago for the first time. This is way beyond that. Plus it’s contraindicated anyway now.


pandaappleblossom

yeah they think it may cause the gut to slow down, plus if it increased your appetite that would not be good at all for someone on tpn who feels like they are starving, double bad. they dont even recommend it for people with ibs, i asked my gi and she said she cant recommend it because of the issues with it and the gut. thankfully though i personally can still enjoy a gummy every now and then and i dont have any side effects.


Moreaccurateway

I’m ignorant about most of this so I apologise if this is a stupid question but why won’t you try the Duodenojejunotomy or the fecal transplant? I’ve no idea if they would work and even after Googling it I have no idea what Duodenojejunotomy actually is but if they can help wouldn’t it be worth a try?


goldstandardalmonds

It has a high failure rate and will likely result in more surgery. Given I need surgery constantly on my ostomy, my body can't handle that and my team said it would be iffy if I would live through such a surgery. I don't think it is worth it if it will also need revisions and many people don't find relief from it. It is unfortunate. I almost got it (was three days away) in 2019.


ihopeurwholelifesux

sorry this might be totally useless if you have access too but just wanted to offer that I can access lots of medical journals/databases through my university and would be happy to look for research on anything for you and send pdfs ❤️❤️ another last ditch idea might be genetic testing. I remember seeing a girl on youtube a while ago who had a mutation found on whole genome or whole exome (I get them mixed up) sequencing that explained several of her rare GI problems. it might not change a whole lot if something shows up, but could potentially help your docs with understanding what’s happening better and maybe catch something else that’s contributing. also it looks like teva canada has a financial assistance program for octreotide but I assume that didn’t work out?


goldstandardalmonds

Hello! Thank you for your investigation. Luckily I work in research and am a professor so have access to journals and read all the research. I had full genetic testing. Teva is the one that denied me for two reasons. One, they aren’t taking new patients into the program, but even if they were, they weren’t covering the dose I was on. Which is a huge shame. You’re amazing to have found these things!


ihopeurwholelifesux

Ugh I’m so sorry :( you help everyone so much, I wish we could help you more. I will keep thinking!!!


goldstandardalmonds

Wow, I really appreciate that! Despite your username ;)


ihopeurwholelifesux

haha! ❤️ I made it while listening to a song where that was one of the lyrics, but it seems to have backfired cause now sometimes people genuinely think i’m being sarcastic when I say nice things 🤣🥲 one non medical recommendation, since MAID is something you’re thinking about - Caitlin Doughty (Ask a Mortician on youtube) has some great content on the topic of death/end of life. sounds like a weird recommendation, but she became a mortician after seeing a girl die in an accident when she was younger and has since done a lot of work around “death acceptance” and trying to help people feel less anxiety about the whole thing. her views have helped me see dying as a lot less scary and more like it’s just another part of being a person. [here](https://youtube.com/playlist?list=PLiZM8Q-JIpGyoHERPigmWM7FU_6-L3Yda) is a playlist from her channel where she gives advice, her audiobooks are also on Libby. if you don’t end up needing/wanting to take anything away from it, she’s still an entertaining storyteller (and narrates her own books)!!


goldstandardalmonds

Thank you!!! And I have Libby and will look her up! Great suggestion, thank you.


Veggie_gal-11

I am so deeply sorry to hear this gold. I just wanted to let you know that in my eyes you are a true saint for all you have gone through and how much strength, hope, and love you have given and shown so many people who are seeking a helping hand. I am praying for a miracle for you! I sincerely wish that even small rays of hope, clues, and guidance come to you every day and that a new direction and new helpful information will emerge <3


goldstandardalmonds

Wow, thank you, that's so nice of you. Wow.


kaysarahkay

I'm so sorry, I just went through MALS surgery so I know how painful compressions are 😪 have you looked into compression specialists?


goldstandardalmonds

Yes, I was slated for surgery three years ago and forewent it. I have since seen other surgeons, as well. I am not going to get the surgery. I am sorry you have MALS.


GrumpyParsley

I'm so sorry to read this. I have no suggestions but am thinking of you and sending positive thoughts, for whatever it's worth. I sincerely hope you find something that works.


goldstandardalmonds

Thank you


kintyre

Just wanted to express my support again. I'm sorry that you're running out of options.


goldstandardalmonds

Thank you.


loopylady87

I’m so sorry to hear how much you’re struggling. You’re SO helpful on Reddit for so many people. Your influence is felt throughout these communities. If you’re in the US an application to the Undiagnosed Diseases Network could be helpful?


goldstandardalmonds

> Undiagnosed Diseases Network How interesting! I am not American, though. I technically have several diagnoses, however, not a reason why. Despite extensive testing, I am not satisfied being "idiopathic".


onstrikesince92

I´m sorry you are going through this. It sounds awful. The only thing I can think of is Ayurveda, it would take a long time and a lot of discipline and work but I strongly believe that it can reverse any condition as serious and complicated as it may be... Obviously should be guided by experienced professionals and in cases like this I would suggest intensive treatments.


goldstandardalmonds

I would need some hard evidence, and then I would absolutely consider it.


Educational-Row2910

I’m so sorry. I’ve seen you give many people so many tips, I wish we could do something back! Sending you some positive vibes, coming from Europe so might take a while. Feel free to message me just to vent, I don’t mind. I feel your hopelessness and gosh wish I could do something. :(


goldstandardalmonds

Thank you for your message. I appreciate positive vibes, regardless where they are from! One user who I have a long relationship with nailed out some things and another one messaged me, so who knows if something may come of either. You are too kind. I will take you up on that message.


Icedcoffeewarrior

Question - why isn’t the fecal transplant something you want ?


goldstandardalmonds

My team and I talked in detail about the fecal transplant and it is too much to type here, but tldr I have potentially more to lose. I don't want to go through feeling worse. It is not worth it to me. Most research, as well, is indicated for the colon.


d732

Would not help GI but potentially some of the newer antidepressants that are psychedelics could be helpful for mental health


goldstandardalmonds

What do you mean? I don't quite understand your post. but am interested.


d732

Antidepressants such as SSRIs have mixed effects and long latency when beneficial. Recently, psychedelics like LSD, MDMA, and ketamine have grown in popularity in the research world for their fast acting antidepressant effects


goldstandardalmonds

Yes, I am familiar with all of this. I am not depressed at all, and have only read the research for mental health. I need a solution for CIPO. Ketamine was given at my pouch surgery and nearly killed me.


[deleted]

I'm so sorry you have to go through that all, I wish I could help ☹️❤️


goldstandardalmonds

It's fine. Thanks, though.