Hi everyone.
I’m new here, but I hope some of you may have some suggestions for me, with my current issues. But before I go into detail about those I’ll just say a little about my background.
I have FAP, which was diagnosed in February 1989, which was very quickly followed up by my first surgery, in March 1989. This was the removal of my colon with ileorectal anastomosis. I had regular endoscopies, at least every six months, more often when needed. Eventually, by 2008, my polyp loading began to increase dramatically and whereas I usually had about 25 polyps ablated every six months, it became 70 or more every four months. On my last endoscopy appointment, at St. Marks in Harrow, Suzuki, the endoscopist guesstimated that I had over 400 polyps in my little rectal stump. Obviously it had to go.
So very quickly after my last appointment I had the first of my two stage J pouch surgeries. This was August 2009. With the second surgery in December. I had severe complications following all my surgeries but especially after the final one.
My pouch has always been problematic with frequent episodes of pouchitis and the need to use a catheter, in the early years. So I became very adept with the use of the catheter although over time I was able to stop using it. Also I rarely get pouchitis now.
So finally, my current difficulties. Like everyone I have from time to time needed to poop overnight. (Grateful that mostly I wake up in time.) However, from October, last year, my need to poop overnight became more frequent and by February it was every night. Then I began experiencing “cluster poops”, initially this was once a night, then twice a night. For me cluster poops were a period of about 90 minutes to two hours, where I would experience great urgency and pain and visit the toilet between 6-8 times. During this time I was still pooping 8-10 times during the day as well.
This continued until April, when I had a general anaesthetic as I needed to have a polyp removed. The night after the anaesthetic, I must of had an adverse reaction, as I had the most bizarre experience of my life. Between 10pm and 7am the following morning, I had to poop every 20 minutes, or so. I have named this episode “A Poopathon”. I roughly calculated that I pooped 30-35 times.
The next day things returned to the same as before the anaesthetic. 8-10 poops during the day, two episodes of cluster pooping at night. Then one week later everything suddenly stops. Immense urgency, as usual, sat down, not able to evacuate anything from my pouch.
So the current leg of my journey begins. Since the beginning of May no matter how urgent the feeling or how full my pouch, I cannot empty sufficiently or satisfactorily. I keep trying, using every technique I’ve learned over the years. The medina catheter was my only hope, this is currently not available in the NHS, but just recently I was able to purchase some.
So all my hopes turned to despair, when I do finally manage to insert the catheter, I am still unable to get a satisfactory clearance. It feels and preforms entirely differently to my past experiences with it. It is near impossible to insert, mostly I have to give in and try later. What it feels like is that the catheter will fit in my anal canal but then it touches a solid mass and sometimes I can manipulate it in, often I can’t.
Is it possible that my pouch has “fallen over” and is now lying on its side and no longer aligned with my exit ?
Although I know an ileostomy would be one solution, because of my personal circumstances it is not really a viable option for me. So if anyone has any suggestions that I could try, to get a better outcome with the catheter, I would be grateful.
To be honest, I am about ready to throw in the towel, but I really don’t want to.
I look forward to any and all suggestions, thank you.
Rachel
P.S. I am not very experienced with any form of tech, and some may ask for more information, I don’t actually know how to respond and answer any replies but if you give me time, I hope that I figure it out.