It’s been probably about a year since my last comment on here. Hello all, when I first found this site I was 15 years old, turning 16 in a month and having my complete colectomy in about 2 weeks. I was terrified. And I commented on this site acting strong and curious in what was to come. Honestly I was terrified, and after all my surgeries were done I was depressed. About a year ago I commented on here again being almost 18 I felt enough time h…Read more
+ care 12+ hugs4+ thanks2+ prayers2I had j pouch surgery along with complete hysterectomy including both ovaries 14 months ago. I have a polyps that has engulfed the end of the ampulla in the duodenum, removing it will also involve removing a little of the ampulla and putting in temporary stints. I can't do the procedure now because I recently was put on blood thinners due to a 90 % blockage in an artery .my question is diet. To keep my bowels under control I do best eating eve…Read more
+ care 4+ hugs1+ thanks0+ prayers1+ care 4+ hugs1+ thanks0+ prayers1- Dan D
There are some great resources re: diet right on this platform! I did a quick global search (magnifying glass on the left navigation bar and the term "diet") and found several: https://www.fapvoice.com/rcuratenew/foods-ok-eat-j-pouch-surgery/
- LifesaPolyp
Since you tolerate meat, poultry can be cut up into small sizes that would be easy to eat on the go and be alright without being warmed up. There's pouches/cans of tuna, some even flavored that would be quick. Deli meat. Hard boiled eggs, egg salad sandwiches, tuna/chicken salad by itself or as a sandwich, baked egg cups, frittata, peanut butter
I’m having my colon removed, a little of my rectum, the jpouch, and a temporary ostomy bag. I’m worried about people bullying me I mean I am in middle school
+ care 8+ hugs5+ thanks0+ prayers2+ care 8+ hugs5+ thanks0+ prayers2- Dan D
You are nothing but brave. Unfortunately bullying is all too common, especially in Middle School. We conducted a survey among FAP'ers about bullying and found, among other things, that FAP'ers are resilient and the vast majority found a way to handle the bullying. You are smart to be aware of it. Be sure to tell a trusted adult if it is happening as soon as it does happen.
- Debbie Turner
One thing you must always remember is that ALL bullies are very insecure. They feel bigger and stronger by bullying and usually grow up to be bullies and don't amount to anything. There is nothing wrong with you and you must remember this. My sons ages 12 & 16 had their colons removed and only one was bullied one time. I went to the school to make not only the teachers aware that they may need extra bathroom breaks but to have the teache…Read more
- psycatozzy
One of the good things about this surgery and having an ostomy is that no one really needs to know unless you tell them.
- Nick W.
Hi lily! My names Nick. I went through something very similar to you. I was the same as you finding a website like this to ask questions on. The really great part about the type of surgeries your having is that when it’s all done you can walk around with everyone else and nobody will know your different unless you want them too. And when you find people you do want to tell, they will be so understanding for you. Going into something so big and …Read more
- LifesaPolyp
I was 9 when I had my first surgery. I had an ileostomy for 6 years before having it reversed when I was 15. No one at school was able to tell that I had an ileostomy or a reversal unless I told them. My parents worked with my school counselor to allow me accommodations for restroom access whenever needed and I was able to go to a private bathroom where I could keep supplies and could change my ostomy there if needed. It's scary but I'm sure it…Read more
So I have a question. Because of FAP I have frequent stomach aches from anything really and I’m going to get a total colectomy in the next month or so will that make my stomach aches better worse or will it stay the same???
+ care 0+ hugs0+ thanks0+ prayers0+ care 0+ hugs0+ thanks0+ prayers0- LifesaPolyp
Everyone's different. I had stomach pain before my surgery but it was because I was pre-ulcerous. I didn't have stomach pain again until I had my reversal 6 years later. Now I have chronic stomach pain, worsened when I eat or drink, due to my adhesions.
- Lily
Ok thanks.
Sorry 😟
Hey I just joined bc I went to the doctor today after having a colonoscopy and endoscopy last Tuesday and they found a whole bunch of polyps in my large intestine and some on my stomach. Today I went for biopsy results and they said they were Precancerous and that I had FAP I’m 12 btw I didn’t know i had this until last Tuesday bc I’m adopted I have to do a Total Colectomy but good news is they said there’s not a 100% chance I will need the bag
+ care 4+ hugs3+ thanks0+ prayers0+ care 4+ hugs3+ thanks0+ prayers0- wsh_caps43
Hi! I had a total colectomy at age 11, less than two months after receiving my diagnosis of FAP, so I totally understand where you are coming from. Stay positive!
I was just diagnosed 3 weeks ago and I am 49 years old..I have to remove my Colon,Rectum,Gallbladder and complete Hysterectomy within 2 months and I will be doing BCIR it's safest for me at Olympic Hospital in Los Angeles with Dr Pouya-benyamini..I am very terrified.
I wish everyone all the Strenght and Love.🙋♀️❤🌹🌹💪👊👏👏👏
Cece+ care 5+ hugs2+ thanks0+ prayers2+ care 5+ hugs2+ thanks0+ prayers2- LifesaPolyp
I don't have any experience with BCIR but it always sounded like a great option to me, good luck!
- Cece
Thank you so much.
I was diagnosed with FAP at 18 in 1995. I had a total colectomy with jpouch. I have many symptoms that go along with Gardner's Syndrome. I have osteomas and cysts. I have also had thyroid cancer as a result of FAP. I recently had an MRI to check the growth of my osteomas and a small tubercular sellae meningioma was found. I am currently waiting for a referral to a neurosurgeon. Has anyone else with FAP been diagnosed with a meningioma?
+ care 2+ hugs1+ thanks1+ prayers0I was diagnosed with FAP at 13. I was adopted so I had no idea this would happen to me until I had a very scary episode. I decided to have my colon removed when i was 22 due to noticing my body changing and tumors forming. I had the j pouch for 3 years. Now recently at 25, on October 25th I was told my j pouch was not able to be saved due to my surgery from a tumor being removed in September 23 ever since I been fighting a infection because the j…Read more
+ care 4+ hugs1+ thanks1+ prayers1+ care 4+ hugs1+ thanks1+ prayers1- Cece
Hello Asweet,
I just discovered that I also have severe FAP and I am going to do the BCIR surgery instead of a jpouch here in Los Angeles California. I am afraid of have a bag unto my stomach and way scared of the complicated of the jpouch knowing that my DNA can produce polyps there. My mother has a jpouch for 7 years and no complications thank God.
My Dr is Pouya-benyamini at Olympic Hospital. I will do the surgery sometime in December.
…Read more - LifesaPolyp
It's difficult adjusting to an ostomy especially when it is so unexpected. The good thing is no one can tell you have one unless you show it or tell them. It's helpful to keep a change of clothes and supplies just in case you have a leak and it can be changed in a bathroom stall in an emergency. Fortunately, it doesn't have to stop one from doing the things they want to do either. Wishing you the best!
I'm 17 and yesterday I had my "yearly"colonoscopy(I haven't went since 2017) and I obviously had polyps and I had some changes since 2017,I have polyps in my duodenum(like my dad) and I also have something that might be polyps in my stomach(also like my dad). It had me stressing out before it and yeah it didnt really turn out as well as it could have. I am about to switch from the children's side of the hospital to the actual like hospital s…Read more
+ care 1+ hugs1+ thanks0+ prayers0+ care 1+ hugs1+ thanks0+ prayers0- asweet
Hey there I read your post just advice. Try and get checked regularly with this disorder. It can get so nasty in no time. So always go for check ups and scans. If I didn’t do the scheduled procedures I’m sure I wouldn’t be here today. Your only 17 so stay positive!
- LifesaPolyp
I had such a hard time changing from my pediatric GI doctor to an adult GI that my pediatric GI kept me as a patient for over 20 years! I was lucky though and found a great adult GI doctor and staff who helped me with the transition and I'm very happy with them. Good luck!
The company that has made my Kock Pouch Ileostomy catheters for the past 38 years (yes, thirty eight years) has gone out of business and neither the VA nor can I find a replacement. I have used a 24 inch long, 31 French 2 slot catheter. Any help out there? I kind of need them and that's like saying the Titanic got slightly wet.Lol
+ care 5+ hugs2+ thanks1+ prayers1+ care 5+ hugs2+ thanks1+ prayers1- CHRIS
I’m not finding anything, but I did find this site that you can request free samples. Maybe you could use it to contact the company to see if they have an equivalent cath or similar product. There is a toll free # to call. I’m going to call my former stoma nurse to see if she has any ideas.
- Nortonrene
Thank you! Nope, liberator doesn't.
- Cece
Hello Nortonrene
Yes, Dr Pouya Benyamini at Olympic Hospital in Los Angeles California. I have Severe FAP I just found out about it and I am choosing to do the Kock Pouch instead of the jpouch to avoid complications.
Please google the Dr and get that help.
Stay Strong
Cece
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Hello Nic
You are absolutely amazing . Thanks for sharing your story and pictures you look so awsome. I am inspired by you.
Thank you🙋♀️❤🌹👏👏👏👏👏💪👊👍👍✌
You're doing awesome!!
You're awesome, you're inspiring, you give meaning to the lives and work of those of us who work with kids and young adults with FAP, stay strong