were you very sick when you had surgery?

  I have an appt. with my GI tomorrow. My colitis was at the point where it would get worse now and then but overall was pretty tolerable. I found out I am anemic at a regular doctors appt.  I will not use any of the high powered dangerous drugs that have terrible side effects. The 5 asa drugs do not work on me so I take cortenema since my inflamation is only left sided. I plan on telling my doctor that I want surgery if the anemia is going to be an ongoing thing but I am scared he will say no way. My family doctor is behind me 100% and does not blame me one bit for picking surgery over those drugs. So do I have to be very sick to get surgery? Do I need my GI's blessing for surgery?

I was sick off and on for three years and none of the drugs worked and i finally told my doctor i just wanted the surgery, that i hated side effects of the meds and the constant pain coming and going. soo after talking forever i got the surgery. After that ive felt better than the world on its first day. "weird way to say i feel great."

I think this decision is very courageous of you!  I too was quick to opt for surgery; however, I was on 40mg prednisone for over a year, 5asa, and Remicaid (had just one infusion before surgery talk with my GI).  My UC was absolutely unresponsive to all of it...I was hospitalized for staph infections because of the side effects of the medications...it was crazy.  I was more than happy to get rid of my diseased organs and have never ever regretted it!  I was sick when I had the surgery, but my immune system was even moreso.  If I knew then what I know now I would never have taken the prednisone for as long as I did and I wouldn't have taken any other treatments and gone straight to the surgery.  I was diagnosed with UC in the spring of 2007 and had my surgery the end of winter 2009, so it was a wham-bam-thank-ma'am kinda thing. 

I would hope that your surgeon would respect your wishes not to attempt the immunosuppressants and schedule you for surgery.  The anemia is concerning and I agree with you completely, why not just nix the issue that causing you troubles and go on with your life?  That's exactly what I did and I love Love LOVE my ileo!  I've had Penelope (stoma) for a year and a half and I wouldn't trade her for anything...she's given me life.  I did opt for a permanent ileo too...just seemed like the best route for me to just pick back up and get on with life. 

Now.  Don't let that pesty colon fool you...it seems that once we do decide on surgery and a date has been set our colon's are suddenly on their best behavior!  I had three of the best UC days ever (for never having remission) immediately following my surgeon appointment...I kid you not!

Sorry this is long winded...I have a horrible tendency to ramble!

I wish you the best!!

I was sick and anemic for 7 years leading up to surgery and have not been sick or anemic since. I think if you have been diagnosed with colitis, are anemic, don't want to take drugs with dangerous side-effects, and want to have surgery, then the surgeon should honor your wishes, even if you don't have your GI's blessing. Good luck tomorrow, and keep us posted on how it goes!

Cecilia

Wow, if you've had a nonstop flare for over a year, then you are sick enough to need surgery. You're right, colitis just doesn't go away. And, since you've had a temp ileo before, you already know how things work, which will make things much easier for you post-surgery.

 Thank you, yes I do believe you have told me that before. I am really hoping that my GI sees it that way too.  Although I did find out that my family doctor understands completely and agree's with me. He said he had a friend who went through every single medication only to see each one fail and end up with surgery anyways.

 My insurance does not require a referral but I have heard of surgeons not doing the surgery if the GI does not think it is needed. That is my fear.

We should be in charge of what we want done to our bodies shouldn't we?

I finally got out of the hospital last night after being there 14 days for a very stubborn flare. I agreed to 3 Remicade infusions basically to get out of the hospital and get my colon healed and off steroids so I could pursue surgery under healthier terms. (I was not responding to high doses of steroids so I didn't have much choice.. I probably would have withered away in the hospital or had to get my colon removed under less than ideal terms had I not tried the drug).

The Remicade worked to end my flare and did get me out of the hospital. So yesterday I was talking to the GI and he said something about the surgeon probably wouldn't be willing to remove my colon now that they knew I was responding to Remicade. My heart sank. I do not want to take these drugs every 8 weeks for the rest of my life. Why is that so hard for them to understand? How can this be forced upon me? I am under a health plan where I can't really shop around for different opinions and surgeons. It is more of a team approach... all the GI's and surgeons know each other and consult on your case.

My first infusion the Remicade has had painful side effects for me. I was fine for the first several days, but by day 6 I was having sharp pains shoot down my lower back and into my knee. The doctor said it was just from lying in bed so much, which did seem reasonable. Then last night around 2 a.m. I got excruciating, stabbing pains in my knees that made me writhe in agony and cry... with no relief from my pain meds. The pain was so bad that I couldn't stand and my hubby had to help me walk to the bathroom. I almost went to the ER, but they finally subsided. In the morning I called my GI. She confirmed that it was likely from the Remicade but that these pains should go away in a few days. I sure hope she's right as I don't know if I can take another sleepless night. I go in for another infusion next week. I am more than willing to give these drugs a try to heal my colon, but not as a lifetime choice. I am so frustrated. My GI doctor did set up a referral with a surgeon (and a very top notch one) for me in a few weeks, so I hope I am just being paranoid and that he will hear my case and be willing to do a permanent ileostomy surgery. Otherwise, I guess I have to sign up for the Remicade for life plan or go back into a flare. I am trying to stay positive and not worry about it at this point. I need to put all my energy into recovering from the flare I just went though... I lost 22 pounds in a few weeks and look like a skeleton.

Blueheron,

I'm glad that you're out of the hospital, but am sorry that you've been so sick and are now going through this with the Remicade and your GI. (((BIG HUG))) The last thing you need is more pain and stress right now.

Do you have the name of the surgeon and an appointment date yet? Once you get that information, I recommend calling the surgeon's office and asking to have your appointment moved up. They get cancellations all the time and can work you in sooner. Tell them that you have been having a bad reaction to Remicade and are scared to get anymore infusions. It's YOUR body and nobody can force you to take any medicine, especially one that is causing you to be in excruciating pain.

If you have not gotten an appointment with a surgeon yet, I would call your GI's office and put a fire under them to make sure that they are working on getting you one.

I believe that once you meet with the surgeon, and he or she learns how sick you have been and that you are having a bad reaction to Remicade, they are going to want to schedule you for surgery, especially since that is what you want, as well.

Take care and keep us posted.

Cecilia

P.S. - I live in Florida and think the Blue Heron is one of the most beautiful, majestic birds.

I don't need to play up the effects of the Remi. Last night was even more unbearable. I was up for 5 hours crying in pain before the aches finally subsided in the morning. I am not going to agree to any more infusions. Where that leaves me I do not know. All I know is that my body is sending me a huge red flag and I am not ignoring it. My UC flare was less painful than this.

I didn't mean to hijack this thread so I am going to post something about the pain in the main Ulcerative Colitis forum.

Thanks!

Here's what I'll tell ya.... I was diagnosed at 18.... I had 3 HORRIBLE flares before age 20... after my 2nd I promised myself if I got into another flare ( I was on remicade which worked for 8 months!) that I would get surgery with no hesitation...

Well I was racing motocross/wakeboarding/playing soccer living an awesome life, and then the 3rd flare hit and I was just tired of it. i was in the hospital within 3 days and lost 50 pounds in about a week and a half

I am 6 foot tall and was 118 pounds going into surgery, the surgeon said my colon was one of the worst looking cases he's seen, and he's been a top surgeon for 30 years. I went into the Operating Room SMILING!

Good luck on your surgery, i've had my ileostomy for 4 months and I haven't felt better in YEARS, I feel completley normal and am schedule for takedown the beginning of next month! Which i'm kind of dreading and anxious for it at the same time since I feel sooo great now!