Hi, my name is Ellen. I am pretty new in here, first time asking questions.
I have UC, and currently considering a surgery to be cured, but some people in my family and my non-surgeon doctors think I should keep taking medications and should not work the job I want because of the stress. I am choosing the surgery(ies) simply because I do not want to be in another huge flare, which I exprienced last summer. I was hospitalized for 3 months, loosing spring and summer completely last year. I dont want to be in the exclutiating pain that caused me to be disabled going to bathrooms so many times, had to wear diapers, going to bathrooms at night with bloody Ds and Drs had to stop my food intake for 1 month. Even when I was drinking water just to take medications I would go to bathrooms within 5 min. of drinking water.
I know some people get surgery because they have exhausted their medications and in an emergency situations they schedule a surgery, but for me I would like to get the surgery to be cured, while my medicine is still working (though very dangerous immuno suppressant) because I read and heard that Drs recommend an elective surgery instead of emergency one, so that the patient can be on a relatively good health and the body has a chance to go under a big surgery, and stand more chance on positive result avoiding more complications.
I wonder if there is anyone here decided to get the surgery due to UC because they do not want to be on the dangerous medication till rest of their life or I dont want to risk myself on getting diabetes due to steroid and IV feeding (luckly last time I didnt get diabetes while on steroid...)
I am also scared how the recovery would be like. I am scared of getting J-pouch surgery but if it worked well its nice, but on the other hand it may be better with permanent illeostomy rather than risking J-pouch based on horror stories I have read (I dont want to be taking immuno-suppressant after J-pouch due to pouchititus or take anti-biotics for the chronic pouchititus.)
When you get an ostomy (illeostomy), how long would I be out until I can go back to work? For illeostomy I understand that it makes noises, fart noises and such. I am afraid of leaks and smell while at work in front of clients/colleagues or fart in front of them in a very quiet office where I can just hear people typing keyboard...etc.
How long did you take to get used to your ostomy?
I commute by train, and sometimes trains are packed. Can I still commute by train? I am also scared about
the blockage. The bad thing is I am still single, and it may be very hard to date, having illeostomy?
Compared to the last year where I was extremely malnourished, now I am fine and not loosing that much weight (gained back some).
Once I get the surgery and an illeostomy, how long would I have to be out of work (I commute 1hr each way by train)? I dont know if I would be able to stand with a stoma in a packed train.
If I need to fly for a business trip to overseas for long distance flight, would I be able to do that?
For those of you with J-pouch, how long did you take to get to the point to the BMs to be stablized? How many times do you go to bathrooms, do you have leaks at night? Do you have to be on a strict diet, or do you have to have dinner early at night? I work long hours and I have to work till 8 p.m. sometimes... I know for J-pouch there is always a risk of failure, how long would that take to put me back on an illeostomy in case I develop chronic pouchititus, fistulas...? How long do I have to be hospitalized for that? Has anyone here experienced J-pouch failure, and if they go back to illeostomy how long did you have to take off work?
Sorry for so many questions.
I am seeing a surgent next week, and I really am worried what to expect. I would like to know what to expect from actual people who experienced UC, illeostomy or complications. I may loose a job because of UC...I am so worried about
this. Have you felt the same way as I am feeling right now? I mean I am not married, nor has someone to take care of me, really. I feel like why me right now at this time, why this disease? A sigh.
Also if anyone has advice on what to ask a surgant regarding UC treatment?
Thank you so much for your time in advance.
Diagnosed since 2012 Janauary.
Hospitalized for 3 months, without food for 1 full month!
Current Medications: Prograph, Sulfasalazine, Probiotics via Prescript
Medications Tried: Asacol, Prednizone (enema and oral form), Pentasa (enema and oral form), GCAP
**Currently thinking towards surgery.
Post Edited (UCThereIsCure) : 2/20/2013 8:32:24 AM (GMT-7)