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Burada, Yüksek Riskli Adenom Hasta ve Hekim anketlerinden başka bir sonuç paylaşıyoruz. Katılımcıların hemen hemen aynı yüzdesi (% 42) ve doktor (% 44), polipektomilerin yıllarca bağırsak fonksiyonunu etkilediğini düşünüyor. Tartmak için anket bölümüne göz atın.

I live in Michigan!

I am from Turkey and I dont know english very well.Please you translate this kind of information to Turkish.It is important for me.Please please...

Türkiye'de siteyi bulduğunuz için çok mutluyum! Yüksek riskli adenomlarla ilgili olarak FAP'li hastalarla ve birkaç hafta önce FAP'li hekimlerle yapılan bir anket paylaştık ve sonuçların bazılarını paylaşmaya başladık (tam raporlar da yakında paylaşılacaktır). Bu belirli bilgi grafiği, hastaların% 67'sinin riskli polipozu önlemek için günlük hap kullanmaya ilgi duyduğunu paylaşıyordu. Fikrinizi söylemek isterse…Read more

Hey DaniCon - That's so cool that you got a photo. Did you ask for one from your GI or do you get good pictures automatically included in your annual report? Did your GI say the could be the source of your symptoms or that there was anything unnsusal about them? My GI doesn't even really mention them anymore in the two minutes I see him while in recovery from my scope (admittedly, I'm always pretty groggy then-- I don't know why they think th…Read more

I have never tried TPN although I have often wondered if I have short bowel symptoms and have heard it is used for that. I think I'm lucky with my current GI with regard to being approachable and going the extra mile at times

The fundic gland polyps are not causing the symptoms. pretty much everyone with FAP has them and unless they are totally coating the stomach we (docs) just biopsy a few and keep an eye on them. the symptoms sound like partial bowel obstruction either from adhesions, or a desmoid or maybe a hernia. If they are disabling perhaps a work up with an abdominal CT might be good

Surgery at age 4 is really really rare. We usually recommend starting colonoscopy in children with an APC mutation at puberty (10 or 11) unless they have symptoms (especially rectal bleeding but also chronic diarrhea and maybe abdominal pain [this is a bit tricky as lots of children get abdominal pain]). In patient who have not been genetically tested we start flex sigs or colonoscopy at puberty also. We don't like to operate in patients uoinger…Read more

Wow DaniCon . Was your polyp burden very high at the time or did your specific family history suggest you were at increased risk for developing FAP's colon cancer at such a young age?

Thank you so much for your insight kiwidoc . 4 definitely felt unbelievably early as it seems that FAP colonic polyposis usually begins around the teenage years as you noted. May I ask, are you from NZ? I'm just curious if the general screening guidelines are di…Read more

CHRIS thanks for the care! Hope you find messaging useful.

Hey- Thanks so much for mentioning this. I too have been having an on and off problem with low key nausea at meals but I've just attributed it to either the drug I'm on for a desmoid or a hiatal hernia I developed a while back. I too have fundic polyps (which is very common among FAPers) but haven't heard of them causing nausea in their non-cancerous state-- have you come across any literature or Drs who suggested otherwise? I wouldn't say it…Read more

Thanks for your reply, I have had obstructions before, so many in fact that I was put on a low residue diet which has worked so far - fingers crossed. I drink lots of peppermint tea as well. I had my surgery in 2000 but found that my problems increased over time I think as my adhesions increased. I also have endometriosis which hasn't helped the nausea.

I don't have any Desmoids that I am aware of. It is interesting that you mention that a lot of female FAP patients have endo as they also think that endo has a genetic link. The frustrating thing I find is that many of my abdominal symptoms get overlooked as my gynae doctors say it is because of the FAP and the bowel doctors say it is endo related. It seems that no one wants to be the doctor for general issues overall or even my extra colonic is…Read more

I have some polyps in my stomach but not many as you. I have adhesions though that cause me to have early fullness, bloating, pain, nausea. I take Compazine and Phenergan to help with the nausea and I try to eat small meals. I also take Bentyl to help with the pain. It doesn't eliminate all the issues but it does reduce them some. Good luck!

me again. In our experience about 30% of FAP patients with desmoid disease get ureteric obstruction. Some have both sides affected, others the right and others just the left. There seems to be no rhyme or reason to it.

Yes it can resolve on its own, either spontaneously or as a result of treating the desmoid and getting it to shrink. other alternatives include renal autotransplantation or nephrostomy tubes (really only if the ureter is completely obstructed)

Done! Welcome Susie Mitterman and Jen F. ! Don't hesitate to reach out if you have any questions about FAPvoice or just want to chat about/not about FAP.

Thanks so much for your earnest post about your bullying experience. As a de nover diagnosed after childhood, it wasn't a topic I associated with the disease and I can't believe I never considered the impact of needing to miss school on friendships (or enemies) as I focused on it so much when I found out I'd need to delay my post college job due to FAP (I didn't think of it so much in a bullying context but, feared it would make it difficult …Read more

This is super cool! Initially (ever the pessimist), I figured the only author would be you but hey, there's someone else too! It would be awesome to have a meeting of the minds with all of the FAP content creators (you, Toddy, Noelle, Kristofer Thompson, Kathleen from KA5THLEEN.com, etc.).

Hi debbiecamilleri - Welcome to FAPvoice. I'm sorry to hear about these recent complications. I haven't heard of prolapsed bowels specifically in relation to FAP however, bowel and/or rectal prolapse seems to be a complication of the j-pouch community in general. I did find this one case study in rareCurate of an FAPer who experienced bowel prolapse right after her colon resection which talks about what they did to resolve the issue: https://ww…Read more

Unfortunately this survey is now closed BUT fortunately, the survey about your experience with bullying is still up as well as a slew of polls for you to share your FAP insight! https://www.fapvoice.com/rarepoll-listing/

Hi Rubyinn First of all, it's nice to see you on here again a few months out of surgery. May I ask how often you're going to the bathroom during the day and at night? Did you have the colectomy and the reversal in one surgery or do you have an ostomy right now? Although it may not feel like it, you're still pretty early in the recovery process. It can take anywhere from a few months to two years for your jpouch to adjust (remember, it's used …Read more

Thanks for getting back to me. I go to the bathroom 15 times or more in a 12 hours span during the day; its the urge and moving around that seems to trigger some of the time. During the night, not so bad b/c the stomach med I take kind of binds me anyway. I have a J-Pouch which was done in one surgery.
The surgeon had me try Metamucil but that actually made things worse; it irritated the J-Pouch so now I am on an antibiotic which has helped so…Read more

I have an ileostomy and now that spring and the warmer weather has arrived combined with a high output I was feeling the affects of dehydration. I have started on loperamide again, and have been advised to start St Marks solution. On another note, with no colon I wonder if probiotics would do me any good ?

Hello Rubyinn, sorry to hear about your troubles. It's pretty early so that sounds like normal adjustment without being able to use Metamucil or Immodium. About 30 days out I was still going at least 15 times a day before taking stool modifiers, and now four years after the second surgery, I'm pretty much at 6-8. For me, the critical thing was sugarless Metamucil but not based on the label use (instead, I used like one heaping tablespoon in …Read more

I learned that marshmallows can make stools a lot more solid. Bananas too. Hmm, have you ever heard of Lomotil? Not sure if it's similar to Imodium or not...

I was prescribed Bentyl, Imodium (your allergy), and Lomotil post-op. Valium is also good for calming the bowel. Bananas and marshmellows thickened my bowel movements, especially while I had the temporary ileostomy. I hope things have slowed down for you some. Stay hydrated and eat smaller portions more frequently. Lidocaine topical ointment is good for fire extinguishing from going a lot. I always keep it on hand.

Hi Vanessa! It's lovely to virtually meet you (although I wish F.A.P. wasn't the impetus). I can totally relate to the "surprise, you have F.A.P....and you need to get your colon out immediately despite the fact that you're in your early twenties!" There's a lot to explore here so we completely understand that it takes time to get the hang of it! If you need any help discovering the different resources available on FAPvoice, don't hesitate…Read more

Hi Vanessa, I was diagnosed age 8 and have learnt more from resources like this website in the last few years than 20 years from hospitals etc and this community is really supportive

Hi DaniCon Thanks for sharing your experience! We're so glad you've found FAPvoice and the overall F.A.P. community helpful! I feel similarly to you as well although I'm only coming up on 5.5 years of experience.

DaniCon Yeah, 8 years old is definitely on the young side. Did you have a family history? Were your symptoms colorectal or extracolonic (there's the rare form of childhood liver cancer linked to F.A.P.)? You definitely must have a wealth of experiential knowledge (and entertaining stories) from your decades of healthcare experience though!