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Basically I have not been diagnosed with Crohn's but suffer with simlar symptons, unfortunatly as I do not have Crohn's I cannot gain access to drugs used for Crohn's. So why am I writing on this forum? 1). There is no FAP forum and 2). I am looking for advice from Crohn's users who have gone with an ileostomy which is what I am looking at doing
I was diagnosed with FAP as a child and had an IRA (Large bowel removed but Rectum remained) in 1996 with a temp Ileostomy for 6 months. I then had the best 22 years of my life, near perfect control of my bowels without loperamide, certified scuba diver, traveled the world and got married.
October 2015: I had a relatively new procedure called a mucosectomy of my rectum, this removed the mocosa layer from the rectum which stops polyp growth. I needed this done as I had thousands of polyps by now and the chances of Cancer in one of them was too great a risk.
Unfortunately the healing process as taken 9 months so far much to the surprise of my Surgeon, my symptoms are frequent loo visits excess 15 times a day, feeling empty and then full within minutes, soreness around the back passage, possible acidic stool, depression etc
I use Metanium cream to help with soreness as a barrier cream, take 4mg Loperamide 30mins before a meal.
June/July 2016: I had 2 Pancreatitis attacks as a result of gallstones, July 1st I had my gallbladder out.
I am starting to really think that my quality of life is a dismal and really wondering of getting the ileostomy.
I think my problem is I see the ileostomy as a method of gaining/returning my lifestlye, being able to socialise and getting back to work etc.
Does having the ileostomy make medical sense? I'm not sure and possibly not to doctors, my current symptoms are below.
15+ visits to the bathroom (Used to be 4-6)
Sore bottom (Creams do not help the pain
Unable to eat properly (IE start eating but then go to bathroom, try again but need the bathroom so I stop eating)
No social life ( I can manage the cinema on a good day, but even then today for example I used the loo twice during the film)
No work (10 months off work so far, 2 months left on half pay)
Depression (Never had it until after the surgery)
Feeling empty on the loo but then feel full minutes later. (Never had it until after the surgery, I always had confidence on the loo and knew when I was done and that I wouldn't need another visit for 3-4 hours)
I am basically scared with the permanent decision of am I making the right choice? Will the ileostomy solve my symptoms? What will my recovery be like, how long will it be, will it be painful and how long for? How my times will I need the empty the bag, can the surgeon refuse the operation?
Can anybody offer advice/guidance?
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