Share your bad experience with surgery - please

Are you in the US? I know things can work differently in other countries but here if you have a surgeon who is willing to perform the surgery you absolutely do not need your GI's permission.

Dude (or... lady?) I've been there. I know! I had my first surgical consults in the ER when I was suspected of toxic megacolon, but I "pulled through" and stayed alive (kind of) for another two months before I asked for surgery.

Ultimately this is your decision and yours alone. Your GI can advise you, a second opinion GI can advise you, surgeons can advise you. But it's your body. There are bad outcomes to this surgery, even the permanent ileostomy, some of which you can find in the archives here, just as there are bad outcomes to medical management like Imuran and Remicade. You've educated yourself, so now you need to go with your gut (no pun intended).

Umm, it's your choice whether or not you even take Remicade or Imuran. If you have researched the drugs and make an educated decision, I don't see why you can't choose to have surgery.

I'm surprised about the surgeon's reaction. I have heard people on several boards comment that they didn't have "extensive" UC, but it was severe. I myself had 29cm? of inflammation before surgery. That's not a ton, but it was spreading. In addition, when I went to my consult (10 days before surgery) I told the surgeon that I wasn't very symptomatic at the time. But I was done with meds. His response was that they are treating me for the long term disease, not specifically how I am doing the two weeks before surgery. I was still rather sick, just not very UC symptomatic.

Some GI's feel like they have "failed" if they let their patient have surgery. Maybe that's going on here? In addition, you are on Humira AND steroids?? Remicade has some increased effectiveness in studies over Humira, but people get intolerant of Remicade after a time if it even works on them.

Do you live in a big city? Could you find another surgeon?

My two cents for what it's worth: Forget about the drugs and have surgery. Doesn't even matter which, j pouch or perm ileostomy....Which ever you are more comfortable with doing. You will be much better off. If these heavy duty drugs aren't working then chances are it's the end of the road. Remicade was the last one I tried and now I can happily say I'm glad it didn't work! Best of luck....

I had inflammation in only 36 CM, but meds failed and I was stuck on the pred. My GI disagreed w my decision on surgery, but the surgeon said right away if my quality of life was suffering that bad (4 hospitalizations in a year) and meds didn't work, surgery was the logical step.

Any chance of finding another surgeon?

You do not have to keep taking meds! If your surgeon doesn't respect your opinion, go to another one!

Sue

Imuran takes at least 3 months for any real result, and often longer. And trust me when I say the side effects can be devastating. I took it for more than 6 years, until successive runs with meningitis from my blown immune system (the infectitious disease doc said I basically had no functioning immune system) and pancreatitis. Then it was on to remicade, which did nothing for me. So glad to be done putting those poisons in my body .... only 3 weeks til prednisone freedom!

I am 39 for a few more days LOL.

But I do keep hearing that I'm so healthy (uh - then why am I here & on all these drugs??) and that surgery is life altering (and so is crapping 20 times a day & lots of drugs)...

I'm actually hoping that the scope will show a spreading of the inflammation. The GI is so stuck on it being the rectum involved & the entire colon removed along with it. I'm going to come right out and tell him that - yes, it's my colon - which is attached to an entire person who's life quality is suffering!

My current GI appointment is on the 28th and I really hope to get it moved closer - will call tomorrow.

I really dislike giving advice but I also feel you need different doctors.

In my husband's case...after switching from a local Dr who put in a referral to Mayo Clinic as she felt he needed better intervention and more specialized treatment......after going to Mayo Clinic and being on Imuran along with Asacol and also trying and failing Remicaide (4 infusions) his GI suggested surgery. It took 2 years for my husband to finally accept and embrace the idea. His Dr didn't push but strongly advised it since the drugs just weren't cutting it. Fortunately he was totally off the prednisone well over a year prior to surgery which was a help in of itself.

Two days after surgery his GI Dr suprised him with a visit and my husband said to the Dr....I wish I listened and did this 2 years ago....the Dr. said "you were not ready 2 years ago"

The gist of all this is you know when you are ready and in your case it is the reverse of my husband's and I feel badly that you are not getting the support you really need.

Granted you haven't tried those other medications yet and the doctors aren't misleading you as they want to try to see if they will help and get you that remission you all chase and hope for. Those meds scared the crap out of me (as I read too much about them on the internet) and I wasn't the one taking them but my husband wanted to try everything so I didn't stand in the way. The UC boards was a lifeline and very helpful for the 5 years he was going through all his trials and tribulations and he had a few periods here and there when it was more manageable than others but never a real remission either. Far more suffering than good times in his case.

Yes this is a new lifestyle but like everything else you adapt. Hopefully if and when you have surgery everything will go very well and once you heal and get on with life you will be happy with no longer being so sick and all the unpredictability that goes along with the UC suffering.

music,

I had a disastrous gyn pelvic organ prolapse surgery that ended with a very needed end ileostomy.  That doc saved my life and I had 4 super years........BUT after 4 years my abdominal wall slammed shut and i developed a severe stoma fascia level stenosis.  I have had 3 stoma revisions slam shut on me all at that fascia level.  It may not have to be moved to the other side.

I am attempting to live on boost vhc and have developed cachexia.  hair falling out, general malnutrition starvation symptoms.  Think about this.  I know you have a disease that I did not.  So not the same scenario but things can go wrong with stomas.  Most on here have been fine.  So just my horror story.

Had a stoma dilation and ended up in the ER with a bag of blood last night just to add to the "merriment".  I cannot win.  RJ

if you have UC, wouldn`t an ostomy end your problems permanently ??. my surgen and future ostomy nurse gave me some reading material`s.. Tell me if I have this right? An ileostomy with a LOOP / or J pouch is for people that are going to have the ostomy possibley reversed in the future?.. and the END or perminant Ostomy is for people who will have the ostomy for the rest of their lives.. just want to be sure. If I go through with the operation?. I`m not going back.....and the surgen said they have better and faster recovery times, just by leaveing the rectum and stump I only have--half left anyway (rectum). he said they would take out whats left of my colon if it looked bad?. said he would go in laproscopic with camera and light, the decide were togo from there. could wind up with a left side colostomy?. with what little large intestine I have left over from last resection.. or they will open me up and cut out bad.. then go out through the right side with end ileo..I guess I`ll know when I wake up..but back to your case.. if all I had was UC?.. I would have done the bag the first year I was diagnosed.. good luck with what ever road you decide to go down, surgical decisions are always stressful..

Music, that just seems so odd for your docs to do that to you. You need to definitely keep your wishes the top priority. After my surgery, my arthritis symptoms completely went away! I believe it was the UC that was causing my body to go all haywire. Everyone is different, but your wishes should be the first consideration.