Trying to get the ball rolling on surgery is hard

Just got done talking to my GI and lets just say he seemed mad over the phone. A while back before he put me on Remicade, I told him Imuran was causing a lot of hair loss for me and at that point he put me on Remicade but its not doing much for me. Prednisone is the only thing that helps and I've been on it for way too long. Pretty much 5+ yrs 5-60mg, majority of time at the 20mg range.

Anyway he said Remicade might not be working because I wanted to be off Imuran and that I might need a combination of drugs but tbh Im done with all these drugs and want to get off everything if its possible with surgery. So basically from my conversation with him, I was told that I might have been sabotaging my health and inability to reach remission.

He hung up pretty abruptly but said he will get me an appointment with the collorectal surgeon. Lets hope she has a better attitude. I was kind of happy before he called, now Im unsure. I dont know why so many GI's feel that surgery is not necessary and that they somehow failed me if I cant find remission with their meds. I do wish I had a GI that was more favorable towards surgery from the start. I really didnt need the 5+ years of meds that make me feel like I aged 15-20 years in the process.

Just venting a bit..

If I didn't read that you were from CA I would have sworn that we had the same GI doctor. However, I live in south Jersey.
I suffered with UC for twelve years. My GI doctor had me on 6MP for seven years. At first, I did enjoy a two year remission but then started to flare yearly and the past two years have been Hell. Remicade failed after my 3rd infusion. I went on Humira for three months..nada. I was prednisone dependent.
After Remicade failed my GI doctor mentioned surgery...BUT he didn't actually think I would consider it seriously. At my last visit to his office he told me he felt that he failed me! Why he took things so personally is a mystery to me. As a matter of fact, when his associate came in my doctor actually left the office very upset. He would not refer me to a surgeon so I took matters into my own hands and searched the internet for a GOOD colorectal surgeon in Philadelphia as I don't trust these south Jersey doctors.
I am three weeks to the day post op. The surgery went well, but I have to admit, it took a LOT out of me. I have fatigue but then I am also 63 yrs old. The ostomy nurse who comes to my house twice a week said she thought I was doing great. Being on prednisone for such a long time..since January and for 16 out of the last 24 months....did a number on my overall health. I am now down to 10 mgm and tapering 5 mgm per week but will taper to 2.5 mgm the last week. Great to be off the Colazal which I took for over ten years too. That may have kept my UC confined to the rectum instead of traveling further into the colon. I opted for a perm. ileo....well, actually the surgeon would not do a j-pouch on me because of high risk. He said I made the right decision as my rectum was badly diseased.
Sorry to ramble on but you have to do what is in your heart and right for you. Make sure you find a GOOD colorectal surgeon.
God bless and good luck.

i was 29 when i had surgery! i was the same way as you i missed all my 20's i wasnt missing the rest! and im making up for it now, lol. woo hoo for dancing and baileys :D

It's good to hear things seem to be going well for you, Christine.

Doz:  about a year ago, I had had enough and was ready for surgery.  However, I had a GP who was dead set against surgery and a GI who was on the fence.  They conferred and sent me to a surgeon in the same health-care system, a close colleague of theirs.  He was on the fence and thought I was too young (pushing late 30s these days!) to make that decision.  Once the three of them started conferring with each other -- arguing, actually -- they decided I must try Remicade before I could have surgery, which was a complete non-starter for me.  That's the short story; it got rather ugly. 

Their argument took so much time (three-four months) that the window I had planned for surgery closed.  At any rate, I had to start over with a new GP and GI, both of whom know that my preferred treatment is surgery and that I won't consider Remicade.  I am in something like remission now, but the next major flare, I expect to have surgery.

This is all to say, don't be discouraged from doing what's best for you even if you find some resistance.  If your GI's referral drags his/ her feet based on your GI's misgivings, you may need to make arrangements on your own.  Just keep it in mind.

Good luck.

Doz79...my son was 18 when he had his colon removed and the reason that both his GI and surgeon wanted to go that route was partially BECAUSE of his age. His GI did not want to see him on decades of heavy hitting drugs, knowing the toll that they would take on his body. Also, he was very sick but that did not mean he could not have a J pouch. It just meant that first they removed the colon, gave him an end ileostomy and time (about 4 months) to regain his health. He has since had his pouch built. He is 5 months post reversal and is doing so well.....we have almost forgot what those awful days were like!

Thanks guys. I dont feel bad about my decision at all now after a good nights sleep. Im just surprised how every GI seems to treat UC differently and some are dead set against surgery and others promote it. Kaiser called me this morning and Im supposed to get the call from the surgeon this afternoon. I guess she wants to talk to me on the phone before setting a real appointment.

C_G_K I've tried going the probiotic route. It offers me little relief and I cant find anything natural or otherwise that can help me go into remission and stay there without taking prednisone.

Sue I agree with you. GI's can try to treat UC but until they live a day in my shoes, they have no idea how it feels to deal with UC on a daily basis. I'd love to see them even get out of the house with the anxiety/cramps/bowel control issues let alone work 12hrs a day 6 days a week.

Talked to the general surgeon over the phone just now and she assured me that surgery is a good choice for me. She set me up for an appointment with the collorectal surgeon in mid August and said I'll likely be getting the surgery sometime in September if the August appointment goes good. The phone call definitely made my day.

Sorry didnt mean to make this post into my own personal blog but figured Id put as much info in it as I can for others in the same shoes.

susans53 said...
I live in the NYC suburbs. My orginal GI never once thought I should have surgery and in fact he told me he never had any patience of his do sugery. So, when things were not getting better after 5 months ( pred and 6 mp ) he basically told me to find another doctor ( I guesss that is why he had such a good track record-lol) I headed into the city and the doctor took one look at me and said I had 2 choices ( this was 10 years ago and remi was not an option ) clycosporan or surgery. I jumped at surgery cause I wanted no more evil drugs. It was hard, had complications-good 8 years, now more complications. I made the right choice for myself but the only thing looking back I would have done different is gone with an perm ostomy. While I am grateful for the j-pouch, too much drama, ie chronic pouchtis, now have to deal with adhesions, more surgeries. I lost enough years. Your young though so I would go with the pouch. 5 years on pred-shame on that GI.

Wow that sucks, Im really hoping everything goes well but I do have pretty rotten luck. The 5+years of pred was the previous GI, this one has been a little over a year of pred. Hes tried hard to get me off but just hasnt been successful.

Thanks for the heads up, Summerstorm.  All evidence points to getting better results while not in a flare, but given my past experience, I just don't want to argue the point right now and go through all that rigamarole.  Should I start to overtly flare, I don't intend to let it get very far along.

I mentioned that the surgeon thought I was too young to make a decision about surgery, but I forgot to mention I'd prefer a permanent ileostomy.  They were all pretty much horrified by that decision.  If I wasn't convinced beforehand, I knew afterward that lots and lots of folks in the medical profession (professionals who should know better, at that) really don't understand what IBD patients go through.  They also seem to have butt and poop issues, for lack of better terminology.

Speaking of keeping up with a hectic work life, it seems medical professionals opt for surgery sooner than the general population.  In fact, when I met with the surgeon, he had just put a j-pouch in a cardiologist who had made that decision within a month of UC diagnosis. . . .  Go figure.