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Posted 3/19/2009 2:08 AM (GMT 0)
Hello,

I think I posted here once before but am so overwhelmed I can't remember!  Sorry!

I have uc - pancolitis- since 2002  and had a colonoscopy last week only to learn that my GI found pre-cancerous cells in upper colon.  I am having a repeat c-scope done in a few weeks.  If the same is found I will need surgery.  I am almost leaning towards the surgery anyway because of the extent of my disease and the increased risk of cancer.  Surgery has always been a possibility for me because I have never managed to go into remission longer than a few months.  Most drugs only work for so long and keep my disease "at bay" but I am never symptom free.

I am terrified and have lots of questions I  am hoping one of you brave souls will help answer for me!

1 - can the surgery to remove the entire colon be done via laproscopy?

2 - how long is hospital stay?

3 - how bad is pain immediately after surgery and in days to follow?

4 - how likely is it to have a "bag" permanently?

5 - how bad is subsequent surgery to remove bag and have j-pouch?

6 - anyone elect to have the surgery?

7-  anyone have surgery due to pre-cancer cells?

8 - how likely is it that pre-cancer cells will turn into cancer and if they don't find them in repeat c-scope, how likely is it they will come back?

I am sure I have more but those are the immediate ?'s I have.  I am sorry in advance if I am not using proper terminology!

Posted 3/19/2009 3:07 AM (GMT 0)
1. yes it can be done that way, not all drs will do it that way,, youjust have to check with each dr.

2. usually 5-7 days, but it can be longer if it takes longer for your stoma to start working.

3. not gonna lie here, the pain from surgery is pretty bad, but it only lasts for the first two days or so. and the minute you wake up, you can feel that UC pain gone! Its amazing. Plus you will have pain meds at the hospital and then they will give you some to take home and it will help alot. I got through it by thinking, ok this pain is gonna last a few days, UC pain would last forever!

4. Some people choose to have the bag permanently, i did. Sometimes things happen with a jpouch an dyou have problems and you have to go back to the bag, that doesnt happen alot though. But trust me on this, the bag is NOT bad at all, actually very convenient, lol.

5. dont know abotu this one, i have a perm ileo. But it seems like most complaints are of butt burn.

6. I elected to have the surgery. I had had it with being sick and missing out on life!

7. i did not have pre cancer cells yet, but there are some on here that did

8. I dont know about that either, sorry

I saw on another post where you felt like you were missing out on yoru kids, and thats one of the reasons i cchose surgery, my baby was growing up in the bathroom! And now he has his mommy back and we can play and do whatever we want and its awesome.
I promise you that life with a bag is not a big deal, its pretty cool actuallly, when "normal" people have to poo they gotta sit in thebathroom for 5 or 10 minutes, takes me 2 minutes, lol. Anytime someone i know gets an upset stomach and is runnign back and forth to the bathroom ithink, wow this is nice, i dont have to do that!

Anyway just wanted you to know that surgery is a good thing for most of us and it does CURE you! and you will feel soooo much better!
good luck!
Posted 3/19/2009 3:38 AM (GMT 0)
I am not nearly an expert, but was in your shoes a few months ago, struggling with the surgery question.

I did not have pre-cancerous cells, but had never been in remission, had failed all meds, and was being barely maintained on high dose prednisone and cyclosporine. I was in major pain, was very fatigued and lethargic, primarily bed-bound.

My surgery to remove my colon was done laprascopically, using my c-section scar!

I was in the hospital for 5 days, which was much shorter than my previous visits for UC which averaged 2 weeks at a time.

My pain was managed well with the pain pump and on oral meds. Frankly, I had less surgical pain than I did pain from my inflamed colon prior to surgery.

I will be having 3 surgeries total due to the effects of the prednisone on my internal organs. Surgery #2 will be to form the j-pouch, and surgery #3 will be the reconnect. I am not in a hurry, and am wondering whether I even want to go thru with subsequent surgeries, as I feel SO good right now, and am completely med-free.

I chose to have surgery over trying Tsabri, the last med my GI would offer me. Am so glad I did. It took me a few weeks to get used to having a pouch, but by 2 months after the surgery I was well adjusted, and at nearly six months I am very comfortable with everything.

Hang in there, I know the decision-making is excruciating. You will make the right decision! You are far ahead of where I was, I couldn't even bear to read this board prior to surgery!!
Posted 3/24/2009 2:20 PM (GMT 0)
I opted for surgery due to my Crohn's disease eating away at all of my colon. My surgeon said that it was all scarred and gross when it came out. Still not sure if I'd want to have it reversed as I've heard about bother with scarring and such. I put off having the surgery to try the Adalimimab drug, but it ended up not working.

I opted for a morphine drip and spent most of the first week after my op in a drug induced coma :p The pain was quite bad, but once I could walk it helped to ease off the pressure in my stomach a bit. Caught a urine infection off the catheter and ended up spending 2 weeks in hospital. Wasn't allowed to eat because I kept throwing up and my bag didn't work until a week after my op.

However, I'm glad I had the operation. I now have more energy, been getting up earlier in the mornings and such, though I can't really remember what it feels like to have energy. It took a while to get used to having a stoma, I named him Stanley to annoy my boyfriend so I could say stuff like "Stanley kept me up all last night"!

Hope everything goes well with you, and good luck if you decide to have the surgery!
Posted 3/24/2009 3:18 PM (GMT 0)
Honestly Stanley and Me, its people like you who can maintain their sense of humour who give me hope to carry on.   Keep it up !

Posted 3/24/2009 3:44 PM (GMT 0)

Stanley and me said...

 It took a while to get used to having a stoma, I named him Stanley to annoy my boyfriend so I could say stuff like "Stanley kept me up all last night"!

Hope everything goes well with you, and good luck if you decide to have the surgery!

I was really curious as to what your "name" meant, but felt stupid asking.   That is HILARIOUS!!!   I love it.  I need to be more creative like you.  I have never really named my stoma, but I AM doing so right now.  So, what name would you recommend?! tongue yeah
Posted 3/24/2009 8:28 PM (GMT 0)
I was terrified too but being informed really helped me face the surgery and

1 - can the surgery to remove the entire colon be done via laproscopy?
yes. Be sure to ask ahead of time. I had 2 surgeons--one doing the colon removal and the other removed the rectum.

2 - how long is hospital stay?
I was in 5 days but was told to anticipate a week or more.

3 - how bad is pain immediately after surgery and in days to follow?
I am told I was in a lot of pain directly after and the next day but I don't really remember. After that, the pain was not terrible-I was comfortable. It was a few days after coming home that I truly felt pain and had a hard time adjusting the pain meds. At my first post op appt, doc gave me the med that helps the most.

4 - how likely is it to have a "bag" permanently?
best to ask doc regarding your specific case.

5 - how bad is subsequent surgery to remove bag and have j-pouch?
I had proctocolectomy and ileostomy so I don't know. However there are some great books out there and a good deal of info on the net.

6 - anyone elect to have the surgery?
I was out of options. Humira didn't work after 6 months and I was depleted, weak, an very unwell. Had a second opinion which I highly
recommend for peace of mind and becoming more informed.

Best of luck to you. Deciding on this surgery wasn't easy--even when I really had no other option--ultimately, I am btter today one montha from the surgery than I have been in almost 2 years.

Best of luck to you.
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