Recently I got some news that was not so great about new complications with my FAP condition, that has challenged my positivity and made me once again come face-to-face with the devastating and unfair disease that FAP is.
A large part of FAP is the growth of polyps in the large bowel, duodenum and ampulla. I’ve had my large bowel removed eliminating any chance of bowel cancer, and every year I get scopes to check the duodenum and ampulla. For the last 3 years there has been no growth and all polyps have been small. Until the last scope in August this year… when they were significantly larger. I’ve seen the photos and even to my untrained eye I can see it has grown much larger and needs to be taken out.
The problem is I haven’t had to deal with any bad news for the last year. Things have been good, my desmoid tumour is behaving and I’m getting on with life. More significantly, I haven’t had any polyp/FAP associated complications since my diagnosis and bowel surgery, so I’m really feeling this as a significant new progression and having a reality check that this is the condition that keeps on giving, but not in a good way.
Throughout all of this I’ve always known and appreciated how lucky I am to have no pain and to be able to fully function around my treatment and care. At the same time it also makes it harder to stomach that things are so wrong inside of me, yet I can be fine on the outside and am able to do active things like bush walks, holidays and jogging the city2surf. I’m going to keep holding on to this zest for life and normality because without it I will be a mess I’m sure.
The next step for me is to see a new senior gastroenterologist who has a lot of experience in resecting ampulla polyps. I look forward to meeting with him and working out a plan of when I will have the procedure. I know how my mind works and I think by having the appointment and knowing when it will be taken out will make me feel much better and at ease about the whole situation.
Until then I’ve got to navigate the waiting game until my appointment later this month.
Hi, just came across yourblug and I thought I’d reach out as a fellow fap person.
I’m a bit older than you (41) and gave known I’ve had fap since I was a teenager. Had colectomy when I was 21. And started having endscopies at 23- which was young at the time. I’m 3rd generation failed – and have 2 siblings and a cousin with it. Cousin is 23 – so younger than you. We are based in Sydney. My sister and brother have managed to find people who married them knowing if condution. Fap hasn’t affected the fertility in my family ( my mum had 6 kids, my uncle 3)maybe the desmoidamight affect fertility but fap generally not in our experience.
My brother and I have had acute pancreatitis caused by polyps blocking ampulla, I’ve currently got a stent in to help pancreas recover. I’d had 3 endscopies last year. I’ve got a great upper gi surgeon, and I’m at point where they want to do a operation . More than a bit scary but it seems I don’t get much choice. Surgeon is trying to encourage my 29 year old brother togave whipples soon also – seems. Dry early to have one.
Sometimes I feel like I’m going to cremated one organ at a time. But generally I’ve found it easier to cope as I get older.
When I was your age all my friends had issue free lives – but now most have caught up and have serious things they need to live with. Although still most don’t have to face quite as scary.
I’ve not had any desmoidussies but we all have other contrition that make things more complicated in my family… enough that my brother was part of the fellowship exam for surgeon last year – they weee expected to identify 2 of his 4 conditions.
Anyway I thought I’d reach out – because sometimes it’s nice to hear from people dealing with similar things.
Thanks for reaching out! It’s nice to hear your perspective having lived with it for longer and that how you cope changes as you get older. I met up with someone with FAP when I was first diagnosed but haven’t come across any others in Sydney recently so it’s nice to know I’m not alone. It’s funny you mention your brother being a case study in the surgery fellowship exam, I did the same thing and I was very confusing for the drs who were already very nervous.