MY LIFE | LIVING WITH PEUTZ-JEGHERS SYNDROME

[@calcunha]

Being with this since child, and having a long journey, I'm now over 45, I can say with confidence that we can have a normal life away from hospitals. Not going to all details, otherwise I would write a whole book, but giving you all some love change tips for handling this disease : 1. Daily fasting, from 16 to 18 hours. Once a week a 24h or more fasting. This one alone is a life changing. 2. Go sleep with empty stomach, always. 3. Zero sugar, grains, generic modified good, pasta and very low starch. One rule is, if it came from a factory, it's garbage, not food. 4. Paleo diet based on animal food, and very low on vegetables. 5. Small amounts of nuts daily. They are very good for this disease, but dangers if overusing. 6. Adaptogenic herbs are great, like ashwagandha. But cycle then like every 3 months. 7. Cold showers The main reason for the above advises relates with apotheosis, which is the failure process in the disease that we need to force in other ways. Sice I started the above, I said good buy to doctors.

[@hadilbenneni]

Hey , thank you for sharing your journey with us . I have pjs too and it's kinda scary when you feel alone in this but finding your video and these comments really is great . Pls share with us any news about this . I hope you're well and healthy 💙

[@nomis9913]

Oh my gosh, where have you been all my life? 20 y/o female with PJS here. Was diagnosed at 8 (sporadic case), had emergency surgery at 12 (intussusception), have been having countless scopes/balloon assisted endoscopes/colonoscopies ever since. Had a failed balloon endoscopy last month so going in for surgery July 30. It’s honestly such a relief to finally find someone I can relate to!!

[@kiraeliza811]

Oh bless you, it’s scary thinking you’re the only person with it isn’t it!! Sounds like we have very similar stories too. I’m so sorry you’ve got another op coming up, I know how scary they are. I’m more than happy to find another platform we can talk on properly if you ever need to talk to someone who knows exactly what you’re going through xx

[@emilylittlechild7274]

Me too! Hi guys

[@mitchellwalker1331]

I also have peutz-jegher syndrome as well and I found out when I was 14 (20 now). I had 3 polyps on top of each other so I had 6 inches of my small intestine removed. I had another surgery a few years later and had another 4 inches removed. It also doesn't help when I have to explain what it is when I see doctors but at least have 1 who actually has an interest in helping me along and hopefully something comes along to cure or minimize the upkeep.

[@kiraeliza811]

It's a horrible condition to have isn't it, especially when it's so rare and so many people haven't heard of it. I also have a consultant who's so good that I also work with, I'm glad you've also found someone who keeps on top of it for you. We actually found some surveillance guidelines that I'll link if you haven't seen it already as I know there isn't much information out there. www.ncbi.nlm.nih.gov/books/NBK1266/table/pjs.T.screening_and_surveillance_guideli/

[@Jenshe123]

Thank you for the link I will share it with my doctor this is really scary and it sucks 😔 what can you do for the pain it never goes away and when I sit for a long time bad stomach pain 😷😣😫

[@mitchellwalker1331]

Thank you for the link. I'll be sure to bring this up when I see my doctor next time and see if this prevents further problems.

[@BrokenDucks17]

Well my story , i had an operation when i was 3 and ive never been back since 😕. God knows the state of my stomach these days im 34 now and feel fine im just going to leave it until i die and accept the cards i was dealt

[@davidoakes1245]

I’m 64 have pjs. I’ve had 3 surgery to remove polyps. Am full of polyps again. The reason I’m writing you is I take natural colon by Greek island labs. It makes my stools easy to pass and regular. I still have pain but never sure if it’s from previous surgery or the polyps . Surgery cause adhesions. I hope this helps you.

[@lacampbellmd1]

As one of the first kids in the United States they found it in . I have half my small removed . Another part sectioned off to heal . Colonoscopies every 2 years since i was 5 I’m now 45 years old . You know when it starts to act up

[@carsnob]

Did you ever get partial disability at least? Idk how it was for you but idk if i can keep working at 26

[@lacampbellmd1]

@@carsnob nope . I don’t get it

[@morganblack4367]

Where are you because my mom was diagnosed at 8 years old back 1949😅 so how you the first child my whole family has it basically and most are older than you and me I have PJS as well. And do you know any good treatments. I’ve suffered thru many surgeries and procedures to where I’m on TPN infusion due to developing short gut syndrome from multiple surgeries and removal of a large portion of my small intestine

[@christinasaucier6514]

My mom had this. She had polyps in her bowel as well as nasal passages. Her nose also bleed constantly. She had to get them lasered off every year. They always grew back. She also had red dots on her lips. I was so young and I had no idea the extent to which she had to deal with. So sad.

[@AL-qc1is]

I also have Peutz-jeghers syndrome and I was operated when I was 5 years old. Same also vomiting and alot of pain and been going for colonoscopies ever since I'm 24 now.

[@kiraeliza811]

It's horrible isn't it. Me and my consultant found some surveillance guidelines, I'm not sure if you've already seen it but I'll link it in this just in case, as I know there isn't much information out there! www.ncbi.nlm.nih.gov/books/NBK1266/table/pjs.T.screening_and_surveillance_guideli/

[@danielmartinezhernandez6851]

I also have peutzjeghers too

[@asapmoa7598]

Bro it's the same for me but I got operated at 7 and been doing colonoscopy and I'm 24 now.

[@dancooper3951]

i have this too, had an operation when i was 12. Good to know that im not the only one and that it sucks:(

[@nomis9913]

I’m right there with you! Had emergency surgery when I was 12. It totally sucks. You’re not alone.

[@asapmoa7598]

Bro I had my first surgery in 7 and another in 20 cause of this😔

[@yeyaroman6291]

I also have Peutz-Jeghers syndrome

[@danielmartinezhernandez6851]

I also have peutzjeghers too

[@MAYMAI1937]

thank you so much for making this video

[@noahmeijers2769]

I also have the condition. Nearly my whole family has it. So everyone found out early that we all have it. My granddad (alcoholic)was the only one without a polyp ever found. Also never knew him. I hope i will also never get anything from this fkin condition. Stay strong and know you are not the only one

[@dancooper3951]

Kira Ackling me too!

[@emilylittlechild7274]

Me too, I’ve known since I was young and most of my family have it

[@bruceepperson5033]

I also have PJS and am 58 y.o.. 1.5 months away from last operation. I only have 1/3 of small bowel left. Eating is an all day snacking affair.

[@keomalahamer108]

How are you coping now? I also have PJS

[@hadilbenneni]

I'm sorry to bother but did they have to cut a portion of your bowel everytime you had surgery ? Is it because of the polyps growth ? I have pjs and they had to cut 1 metres of my small bowels too that's why I'm asking .

[@juliawalkerthompson3259]

Giving your bowel a break is a wonderful description Keeps us updated

[@jtjames]

Hello and Best wishs from Canada, thank you for your video .I have pjs also, stay strong and take care of yourself Bless your heart Cheers

[@leannewheeler5351]

I have PJS as well, so does my 6yr old son. Hope all is well. Praying for you

[@danielmartinezhernandez6851]

I also have peutzjeghers too

[@TipsyTurtle169]

I also have PJS, Thank you for sharing your story.

[@keomalahamer108]

I have PJS also.

[@kevinnourry2230]

Jeune homme français atteint de peutz jegher peu de médecins français qui on connaissance de se syndrome depuis ma naissance je subit des batterie de tests On m'a retiré 15 centimètres de l'intestin grêle, emoragie internet et j'en passe bref voilà j'ai les tache sur les lèvres à l'intérieur de la bouche et un peu partout sur le corps et sur le visage

[@maithilypatel104]

hope you are doing good! thanks for sharing

[@teresacesario6247]

Thank you for sharing.

[@jillf6732]

I have Peutz Jeghers Syndrome too

[@brycecswt2247]

Hi. I have PJS. 38. Five surgeries in my life. Mine is a rare case as it’s sporadic. I’m here to talk if you want

[@dancooper3951]

i am so sorry to hear that:(, wishing you good health

[@nomis9913]

20 y/o with PJS here. Mine is sporadic as well. Obviously I wouldn’t wish it on any of my family but it is difficult in the sense that no one can relate to me.

[@brycecswt2247]

@@dancooper3951 thanks

[@brycecswt2247]

@@nomis9913 yeah it’s super rare so it’s hard to relate to anyone. Bless you

[@hadilbenneni]

Hi , how did you know it's sporadic ? I have PJS too and in my hometown it's really rare and doctors aren't really with great knowledge about it .

[@Jenshe123]

Thank you for this video I'm so happy your here! I have had stomach pain for years and always been told it's acid reflux I switched doctors and now seeing the right people yesterday I got my results and I have it to so positive "they never seen anything like it" they are sending me to a specialist at Yale New Haven hospital I'm always in pain and my stomach is full of polyps and my intestines...did your diet help with your pain? Did it help at all I need ideas as well I think my son has it as well I'm very scared and worried about all of this anything you know will help I appreciate it

[@mitchellwalker1331]

Well on thing I have always wondered is if you just replace everything with a colostomy bag. Meaning no polyps or stomach pain, so I would ask the doctors if that is an option if you are up for it.

[@Jenshe123]

@@mitchellwalker1331 ughhh no not really I'm only 32 I'm not really ready for that yet my mind is still in shock that I actually have this they removed the large ones and said the only thing they can do is monitor me and take them out as they grow larger....I just wish there was something that can help with this horrible stomach pain make it just go away they gave me like a rx zantac but they recalled all of them even the over the counter ones...not that that helped much anyways but there has to be something that can be taken to help with it?

[@mitchellwalker1331]

Well hopefully you find something that helps your stomach pain and something is made for pjs and we don't have to deal with it anymore.

[@Jenshe123]

@@mitchellwalker1331 thank you!! You to we all need a cure or something to help with this...good luck on your path...I will try to check back on here from time to time to see if anything new comes up...I hope you have a great night thank you for talking with me about this

[@mitchellwalker1331]

@@Jenshe123 your welcome, have a good one

[@emilylittlechild7274]

I have pjs too! Are you treated at St Marks?

[@intanputri6534]

Hello kira eliza, hope you’re doing well. Im intan from Indonesia. My son has PJS since he was 10 months. But my family dont have this PJS at all. His last gastroscopy and colonoscopy was last 3 weeks and they found 3 polyps from the duodenum and 3 polyps from near rectum. Why the polyps is increasing by number? I am worry about if this could lead to cancer.

[@manojsamal1483]

Thank you for sharing your experience. I am 39 years old. Even i am suffering from pjs syndrome. Since last 10 years I have undergone 2 surgeries , polypectomy, and endoscopy/colonoscopy every 2-3 years. Searching for last few months any alternative remedies or treatment for it. Can’t the growth of polyps be stopped?

[@iza6282]

I also have peutz jeghers syndrome. Please contact from Poland with PJS

[@juliawalkerthompson3259]

Lovely presentation Look forward to your Murder etc posts 🙌 Bye for now

[@SERENAP0083]

Can you please share your Instagram? My son was just diagnosed with this and I want to reach out to other who also have this disorder. Thank you so much for sharing.

[@kiraeliza811]

Of course. My instagram is @xkiraeliza

[@Simo-te4mn]

Please share the instagram with me, thank you!