HELP! Being cornered into surgery!

Warning: This is a long post.

A bit of background info:

I've had Ulcerative Colitis for about 3 years and officially diagnosed with it in Dec '10 which happened to be my first real flare up requiring hospitlisation. The flare was under control after a course of Prednisone and Asacol. However in April '11 I flared again, this time requiring stronger measures to get it under control resulting in me being put on Remicade and 6mp at the start of October.

My blood work hasn't been amazing while receiving both of these drugs so my GI wants to go to surgery now. However, I have only had a loading dose of Remicade (back in June '11) and had to wait 3 months for my next dose. In total I've had about 5 infusions. As for the 6mp, I've only been on it now for about 7 weeks.

Now here's my concern; I don't feel I've exhausted all my options so I DO NOT want to go down the surgery route. I will when all else fails but I don't feel that is the case now as all I've had is Asacol, Remicade (which my GI initially stopped after the loading dose which I don't understand?), Prednisone (which my GI will not prescribe for me anymore as it might mess things up for the surgery) and 6mp (which even my GI said we should wait the whole 16 weeks until we decide whether it's working or not).

On top of this, after two biopsies taken at different times this year they have not been able to distinguish whether I have UC or Chrons but are leaning towards UC saying they're 95% sure it's UC. I would hate to have my colon ripped out only to find out I, in fact, have Chrons.

So my question is am I right to not want to go to surgery? What other options are available for me to try before I have surgery?

Sorry for the length of this post again, just really freaking out. I do not want to lose my colon without good reason.

PS I am 19 years old and currently studying at university.

Post Edited (gavin92) : 12/1/2011 5:18:22 AM (GMT-7)

I'm being treated by an IBD Nurse and a GI Dr. They confer with each other, but I most often see the IBD nurse.

Dont let ANYONE push you in to surgery. YOU have to be ready because it's a huge thing. Having said that, it is not the end of the world to have surgery to rid yourself of UC. It gave me my life back but I had to be ready to make that leap. My family and friends pressured me for 3 years to have surgery and I just wasn't ready at that point. Then one day I woke up and realized I couldn't go on the way I was anymore and scheduled an appt. with my surgeon to talk about the procedure....the rest is history.

By what you are saying, I think you have the option to try other things because you don't sound nearly as bad as I was. All the best to you.

I agree with everything Judy2 said.

You could also consider alternative treatments. I know I will try fecal transplant before I'll do surgery.

I also tried to buy some psyllium seed powder after hearing how great it was for UC but since I live in England, I have to buy it online. And while it isn't too cheap the shipping costs from America mean that I have to pay upwards of $60 for one bag/jar of psyllium seed powder, which is too expensive IMO.

i was pushed hard towards surgery, I fired my GI doc and found another one I could work with.
Almost 10 years later, I am as healthy as I've ever been, no surgeries, no problems except for seasonal flares that are (reasonably) well controlled with meds.
Do what feels right for you, and take great care going over all your options.
Doctors are human, they make mistakes and give wrong advice all the time!

No one can make you have surgery. You need to be your own advocate and tell your GI that you aren't ready to pursue that option and if he/she is unwilling to work with you, find another GI.

However, I do believe that anyone who is on Remicade or Humira should have a surgical consultation. It doesn't mean that you are electing to have surgery, it just means you are getting all the information you need. So many people who are on those last drugs eventually will need surgery so it's best to select a surgeon instead of just having to take any surgeon, if the time comes up. Be proactive in both pursuing other treatment options and researching surgery in the event you need it.

Sue

Re-read what I wrote, BeatUC. I said if you are on Remicade or Humira, which are the last drugs of choice for UC. Those drugs are given when ASAs and immunosuppressants fail. And the failure rate for the biologics is very high. You can meet the biologic failures at www.j-pouch.org if you don't believe me.

Sue

Honey, three words for you... New Doctor...fast.

My GI puts imuran in the "biologic" category, so I'll stick with his opinion.
Also, this thread is a current example of what happened to me, I came within hours of having a total colonectomy due to pushy doctors and surgeons. We must advocate for ourselves, many times the professionals don't have our best interests in the forefront. It's sometimes easier for them to pass you on to a surgeon, who always wants to do surgery.
Here I am many years later doing great with maintenance meds, I still believe surgery is pushed too hard and done way too often for sufferers of UC and it needs to stop,

I think you need a new doctor. I switched as soon as my doc wanted to kick me upstairs to 6mp. I wanted to maintain on Asacol and add for the second flare, enemas and suppositories. That worked and my new doc respected my way of approaching UC.

With that said, I think you should be seeing a doc at your level of UC instead of an IBD nurse.

Where is your inflamation?

Yep -you are right I stand corrected.

Your story is so simliar to my daughter's. She was diagnosed 12/10/08 at age 10. We tried everything and she ended up having her colon removed 2 months ago. Me, my husband and daughter felt we had exhausted all of our options. I would have never agreed to surgery if we hadn't tried everything. The bag has not been fun, but it has allowed her to live her life outside of the bathroom~! she goes for takedown surgery next week. She is also worried about going to the bathroom many times, but our dr told us that after the adjustment period, the bathroom visits decrease. Just knowing that she will never have to be on steroids again is worth it. I also agree that you should get a surgical consult...ONLY because you do NOT want to be making that decision when you are in the middle of a flare. It will ease your mind to know your options and it does NOT mean you are agreeing to surgery. This way you can screen the doctors...our surgeon has made this journey so much easier for us - it is important to have someone you like and trust. Good luck to you