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Posted 8/7/2014 2:06 PM (GMT 0)
Hello to all! I am a 35 female diagnosed with ulcerative colitis in 2002. Like everyone to find the right drug for me was a challenge. I physically feel fine with about 2-3 bowel movements a day. I had a colonoscopy done at the end of June 2014 which they possibly found precancerous lesions. They however didn't know the extend of it because of the inflammation I had (currently taking remicade, colozal and azathioprine) I had to be on cortifoam for a month to relieve some inflammation. I had another colonoscopy last week..yesterday I went to the doctors to hear results on the biopsies that were performed. The pathologist concluded that there is possible dyspepsia but couldn't fully diagnose me because there is still some inflammation.
My doctor proposed surgery...removing my colon! of course I freeked out and I am scared. I have a 15 and 7 year old girls.

I still feel that maybe there is a chance that it's probably nothing since the pathologist couldn't give a diagnosis. but my doctor says she knows me and my history.

any words of encouragement? what does recovery look like? my family depends on me so much....I live 20 minutes from their school....will I be able to drive a week after surgery...is this is the route I choose? How many bowel movements will I have after surgery? will these be urgencies?
Posted 8/7/2014 2:35 PM (GMT 0)
I don 't know much about your particular issue. I'm guessing you're in the US ? I'm in the UK snd after my recent surgery for bowel cancer, removing part of the small bowel, I was not allowed to drive for 6 weeks after surgery - even then (2 weeks ago) being left with a stoma, I find driving quite uncomfortable and avoid if possible.

The only thing I know about UC, when I was having my surgery, the guy in the next bed was having his whole bowel removed and a permanent stoma - he was obsoluteky delighted. I got the impression that he had so many problems over the years with UC, that having this done was a huge improvement to his quality of life.
Posted 8/7/2014 2:53 PM (GMT 0)
Hey there!  I had my colon removed two years ago.  I did not opt for the j-pouch, so I still have an ileostomy.  I can't answer the questions of how many bowel movements, since we on't have those once we get an ostomy.  However, as far as surgery recovery, most people feel pretty well again within just a few weeks, and can return to all normal activities in six weeks after surgery.  I was off of pain killers a week after surgery.  However, it took me a while to regain my energy because like you, I was very sick for a long time with UC. 

Two years later, I have no regrets!  I gave birth to my first child last year and now have my second one on the way.  The surgery truly gave me my life back!

Posted 8/7/2014 3:20 PM (GMT 0)
Not sure which surgery your doctor is proposing - J-pouch, ileostomy, etc. - so the answers will vary. I have Crohn's and had my colon removed and was left with an ileostomy at my surgery in April. You will not be driving a week after surgery. You will likely have just been released from the hospital. I started driving again about 3 weeks after surgery and was back at work (part-time in my cubicle-sitting job) 4 weeks after surgery. It took me about two months to regain my stamina and I'm still not at full strength. Of course, my Crohn's had been flaring since last August so that factored in as well.
Posted 8/7/2014 7:24 PM (GMT 0)
I've had my permanent ileostomy for seven weeks (tomorrow). I was permitted to drive as soon as I felt able, as long as I wasn't on any pain medications. That being said, I didn't feel able for at least 2 weeks from the surgery date, closer to three. But I was sicker and older than you...about 20 bowel movements/day. Don't you have some friends who could get them to and from school?

Recovery is not that bad....I felt better and got stronger every day. It's nice not having to take ANY medications and no longer having the fear of being told I have colon cancer. Plus, no more colonoscopies or the prep is a real bonus!!

Whatever you decide, you'll find a lot of support here. :-)
Posted 8/7/2014 8:11 PM (GMT 0)
I've only had the first step of a 3 step procedure. I was, essentially, in a constant flare for the past 10 years. My doctor said my colon looked terrible, stove pipe, ulcerated, lesions. Just awful, strangely I was still functional. I watched my diet very closely which helped a lot the past few years. But, if I had it to re-do I would have gotten the surgery sooner.

I'm not quite 6 weeks out and I'm feeling better than I did before surgery overall. Bowel movements with a successful completed pouch are around 6 a day. It may sound like a lot and I can't speak from experience but rumor has it they are quick and painless so it's very livable.

Part of the reason I say I would have gotten the surgery sooner was because I had lesions but was never really made aware of the significantly increased risk for cancer at that point. I was diagnosed with cancer on my last scope in May of this year. I'm 29 and it freaked me out to say the least. To say I would have been happy to avoid that would have been an understatement. Now, I will be receiving monitoring over the next few years (and life but, more so the next few years).

I feel blessed at the same time as it forced me to make a lifechanging decision and in the nick of time (I was diagnosed Stage 1). It put a lot of things in perspective for me as well. I'm only on Stage 1 of 3 and had a lot of pain and some difficulties with the surgery, but I do not regret it. I can eat a relatively normal diet. I don't run to the bathroom. I don't fear going out and seeing friends because I don't know when "it" will hit me. It's a pity you sound like you're well controlled on your meds, so the "curing" of the UC will be less of a benefit. I would recommend talking to a doctor about your risk of colon cancer and maybe somewhat of a timeline.
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