Should I get my rectum and colon removed?

[cookieoftruth]

I first was hospitalized december 2010 for about a week, then late jan early febuary 2011 for 2 weeks, again july 2011 for 3 weeks, then was in the hosp AGAIN april 2012 for 2ish weeks.

I have only been home a little over a month, well maybe 3 weeks, and i can feel myself getting sick again.

I mostly have problems with my entire colon, rectum and the last part of my small intestine, docs arent sure if i have crohns or uc, regardless though, should i get surgery?

I'm 17 at the moment, have insurance, i might not a few years from now but I feel like I am always getting sick and its terrible!

What would you reccomend?

Right now I am at a time in my life that IF i needed surgery, its the best time to get it. I have health insurance, medicare, and i just graduated high shcool and live at home still and havnt looked into schools yet, i would have the time needed to heal.

I am currenty on remicade, prednisone, asacol, 6-mp and some ant acid and always end up sick again.

 

[PsychoJane]

It's a big decision to make and your considerations are wise. I just wonder how long have you been on remicade? Would you want to give humira a shot (If you haven't yet) before making that jump? Do you know if a temporary ileostomy would be an option for you, let say, to allow your colon to get some rest? Maybe that could be something to take into consideration as well?

 

[cookieoftruth]

I have been on remicade regularly since october 2011 and since then my dose has been increased and I get it monthly

 

[sammies]

Sounds like you might need further study before making a decision. Have docs done a biopsy or any pathology of your tissue? The type of surgery you might consider will weigh heavily on the identification of your disease. Have you been for a second or third opinion? I've been with my GI for 28 but he has sent me to specialists twice. A specialist at Columbia in New York gave me several options that ultimately verified what my surgeon suggested. How about a colo rectal surgeon? What does s/he think?and finally do you have film (ie colonoscopy, MRI, etc) that is recent and has been viewed by such docs? What have the radiologists found?

But to answer a quality of life question anecdotally: my colon was about to shut down, my rectum perforated, I had so many fistulas they stopped counting. Truly, the removal of my rectum, anus, and colon saved my life. Before my surgery, I was running out of teaching classes, spending more time in the bathroom at Walmart than shopping. I was weak, malnourished, and In immense pain. The surgery changed my quality of life for the better hundreds of times over.

Keep us updated!

 

[PsychoJane]

Well yeah... hum might worth giving a try to humira, but even then, it's another anti-tnf. It can or not do the job better than the Remicade did. I know getting my colon removed allowed me to get a lot of relief as nothing was helping my case but it's for sure a big decision to make. At the same time, if you can just make the choice when your situation is not critical, it is easier to accept the surgery and your healing and recovery will be faster and easier.

 

[KazT17]

Hi cookie, I was diagnosed the same time as you, and was in and out of hosp until I had the op to remove my colon. Just noticed that you don't know if you have UC or crohns. Surely it must be crohns if it is in your small intestine. UC is confined to the colon.

It was a good decision for me, I am so happy not to have the symptoms I had. Take advice from your medical team and get as much info as you can.

Good luck xxx

 

[ian crook]

i have had the op to remove colon 4years later still leaking blood if can cope keep it

 

[ian crook]

i have had the op to remove colon 4years later still leaking blood if can cope keep it if u look back at my last post still in same miss

 

[Emily]

Hey cookie,
If your GI and colorectal surgeon are recommending it, I agree this is a good time. I had a less major surgery, just a resection, at the exact point as you are in life (post high school, fully insured under parents, not yet buried deep in college, etc.) and it was the right time for sure. Life was already "on hold" so to speak, since I was not yet in college, so I was able to get it over with a make a really fresh start once I started school.

But, of course, if you still have a lot of options for medication and the surgery hasn't been deemed essential, I'd wait, as you only want to perform surgery once the damage is irreparable with meds. What does your GI say?