Hello, I am not sure where to start, I have never posted on any forum before, but after browsing this site for a few days it seems to be a friendly place, also one with people who have a lot in common with me. I have begun to think I would like to share my story, as over the years I have gained a great insight and experience of all things FAP.

But what appeals to me most is finally finding a place where I do not have to deal with everything all by myself any more. I have waited 30 years to speak to others with this condition just someone who truly understands. Saying that, I do still have my mother, but sadly apart from the FAP we have nothing in common. Also because my mother is a “medical miracle” and the family’s hero, I have never had any help or support from my family. 

I don’t know if this is the right place, for me to share things, maybe you could let me know. 

One thing that surprises me greatly though is, that how many of the people on this forum have gone straight to pouches. I had my first surgery at age 21 which was a total colectomy with ileo rectal anastomoses (IRA). In fact my surgeon at the time would not consider a pouch at such a young age. After my initial recovery period of 2-3 months, I continued with my career in the Army for another 7 years. I know that medical opinion has varied over the years, but I am very happy I had my rectum for those extra 20 years, I wish I still had her I miss my rectum very much. Although it was not always plain sailing it was certainly much more manageable than my pissy pouch.

I had my rectum ‘excised’ and pouch created in a two stage procedure nearly 10 years ago and have never been well since. I am now aware that it is probably due to some of the drug trials I naively participated in, that changed the polyp loading in my rectum, which necessitated in the removal of my beloved rectum - oh the Follies of Youth !

Rather a longer post than I anticipated,  also a little more serious at points than intended, but more than enough for now. I am just happy to have found a place speak.

If anyone has got this far I thank you kindly 

Rachel

Original Post

Hi Rachel,

Can I just say how brave you are for talking on here! I also have FAP but I'm very lucky that I have family who support me even if they don't know specifically how it feels. Unfortunately, aside from one family member who has memory issues, all of the other members who had the gene have passed away. I know what it's like to struggle for answers.

I'm having to decide between a  J-Pouch or a stoma bag as my second op. Which is the reason I joined this forum early this morning. I was 17 when I had 95% of my large intestine removed. 

I hope you are doing better and I'm happy to talk about my FAP knowledge with you. Over 22 years of screenings have definitely given me a huge insight for a 33 year old.

Kind regards,

Laura

Hi Laura, Because I currently am dealing with a family emergency, I am going to do a quick reply just now. Then when I have more time, I shall do more detailed response. 

My quick answer in go for the pouch, things have greatly improved in that department In The last ten years. Then as you will have a temporary stoma for a while, before take down is done, you will have gained experience of living with a stoma and how you feel about that. The option of a permanent stoma is always an option for the future, if necessary. If you are in Uk only go to St Marks, or there is another good place in Edinburgh. If else wear in the world I will give you my knowledge of others later. I hope I get to explain more before your surgery, if not I can still speak to after. It can be a long and difficult journey after Pouch surgery. But worth the time in the long run. 

I will be out of internet coverage for maybe a week, but let’s stay in contact when I am back on line. I have much more info that may help. Also I would be grateful to share and help anyone in our situation. 

Sorry so brief but family calls.

Chat soon

Regards Rachel x

 

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