Introduction to Naomi:
Hi, I’m Naomi. I’m 51 years old and had ulcerative colitis since I was 25 and still going strong.
Frequency and lower back pain and pain in the joints
I was diagnosed when I was 24 years old. Took me about a year before that to pluck up the courage to tell anyone that I was bleeding. Finally took that big step and told my house doc who sent me for my first colonoscopy, one of many to come. You would think that with time that one gets used to showing it all, my doc who I have been seeing for the past thirteen years fondly refers to it as “his” butt. I have been lucky in having a wonderful doc who is available to see me at any time. Just a call and he will help me if he can. I have also been lucky in having a very supportive family with whom I can be very open with and who are extremely supportive of me and put up with my numerous and noisy toilet habits. Had a total colon and rectum removal 13 years ago. Had a bag for a couple of month and thereafter had the reversal. Have to say it was a difficult time but definitely made the right decision as by that stage I was needing the toilet constantly and of course always at the wrong time, in the shopping centre or car.
I did pretty well for quite a few years after the op but unfortunately I started developing fistulas and abscess a couple of years ago which normally is not associated with UC but with Crohns. I have had the fistulas drained at least ten times and had a seton in place each time for a couple of months. Needless to say this is not conducive to a good sex life. In my last op they opened the fistula and as a result I have damage to the sphincter muscle leaving me with an incontinence problem. I manage this problem with good barrier creams and pads, have the occasional oops when I am caught out as an odd sneeze or sudden movement can really cause a huge problem and now just in case I carry extra clothes.
The best way to handle it
is to go to the toilet as often as possible.
I still try and find the most remote toilet and wait till everyone else has left. Everyone else in the office uses the toilets in the office, don’t think they would be happy if I used them. Not the kind of thing you want to share with everyone. My option at this stage would be to revert to the bag but I am hanging in there as long as I can. I know it is inevitable but I am reluctant at this stage to take that final step and want to continue to manage the situation as best as I can. It is not all doom and gloom could be worse. I am otherwise well.
Where I’d like to be in 1 year:
I would like to just be able to continue as I am, would like to get the pain in my back and joints under better control and hope my incontinence does not worsen.
Taken a lot of meds over the years, don’t remember having much success with any.
written by Naomi
submitted in the colitis venting area