Met with Surgeon

Hi my fellow UC friends...Here is my saab story:

I am at the 15 year mark with UC. Last scope detected polyps for the first time. I have been on prednisone off\on for the last 5 years (Only thing that kept me out of the Hospital) and have gained 50 lbs. The pain has increased over the last 3 years and I now have osteopenia, high blood pressure and pre-diabetes. This means the end of prednisone for me as it has poisoned my body. The Docs think\hope the Sugar and BP will come back to normal when I get off the Pred. It has been the only thing that has half way kept me in re-mission.

I have tried everything as far as pharmacy... Pentasa, Sulfa, Prednisone, Asacol, Lialda, Uceris, 6MP, Humera, Remicade, Simponi, Entivio, Steroid enemas, VSL probiotics, etc I have also tried diets, Gluten free, Atkins, Specific carb with no luck.

GI doc wanted to do one more scope and see if there is any improvement from last year. If no improvement send me to a surgeon. I am in daily pain cramping, joint pain, blood, the usual UC crud - getting harder to cope. For the first time I am actually considering surgery as an option.

Recently got out of the Hospital following the colon-scope. (Spent 6 days in there) I actually waited too long and my BP dropped to 70\50 and I had to be rushed to the ER by ambulance. They found sepsis aka high white count, high heart rate, even bad cardiac enzymes showing. I am lucky to be alive. They put me through a round of IV antibiotiocs, IV steroids and checked my Heart with xrays, echo and cardiac cathedar. They found no blockages just slightly increased right side of heart. They claim I had a possible ischemic attack in combination with the UC trouble. I am somewhat better with the 40MG of daily pred now; still having blood though and 6-8 trips.

So, I met with a Surgeon yesterday; he seemd very kind and professional - went over my history and let me know that first I have to be checked\cleared by my Heart\Cardiac doctor for the surgery. As I am steroid dependent he said would have to do the surgery in 3 stages to ultimately end up with a proper J pouch if all goes well. He does surgery with latest Laparoscopic methods.

I have questions for the folks that have had the surgery:

The Doc says he does 4 of these procedures a year; is that a lot?
He has been doing them for 10 years and never had a complication of failed J-Pouch. Does this sound good?

How many surgeons did you meet with before picking the best one?

What is the average amount of surgery's? I've read that it usually 2.

Many thanks for any advice.

Diagnosed 2001. Tried and failed with almost everything. Currently taking Prednisone 40MG, Entivio, Uceris, Lialda, Hydrocodone, Vitamin D supplement, Lorsapan, Just added: Fish oil pills. Considering Surgery. :(

I meet with 2 surgeons. I really like the first surgeon but he didn't take my insurance (very common for surgeons where I live) so i waited another 6 years. My GI moved hospitals and I was ready for surgery again.

My GI and I were discussing surgery and he leaned over to me and said that he'd use this surgeon for himself or any of his family members if they ever needed surgery. That was good enough for me, I went to my initial consultation with the surgeon and it was awful, the surgeon got up, looked at his watch, said that he could do my surgeries and that he had no more time for me and left.

The surgeon did not make a very good impression on me but I told myself that I was choosing the surgeon for the time that he was operating on me and not for his bedside manor. He had all the credential, Chief Surgeon of a Major Metropolitan Hospital, a crohns surgical procedure is named after him, my GI who I respect recommend him and he accepted my insurance.

It's nice to have surgeon who is friendly and has a good bedside manner but I don't think it's completely necessary, I made it through it without it. I'd look for the qualifications and more importantly how many j-pouches the surgeon has preformed. I think that my surgeon did 600-700 at the time I went for surgery. I think he said that he did about (1) a week.

I had a 3-step surgery, I personally don't think I could have managed a 2-step because I was so sick at the time. I was also on 40 mgs of Prednisone before surgery. The 2nd step was really tough on me, step-1 was much easier than I expected.

They tried to do my colectomy Laparoscopically but my skin failed from the Prednisone and they had to do it as an open Surgery on me. My surgeon was more upset about it than I was, I was just happy that I felt so much better after my Colectomy.

You have done your best-seems time for the next logical step. Don't get sicker and create more damage to your body-some things cannot get fixed. This one can.
3 step is safest with pred dependence.
I hope that you consult elsewhere to a team that does them weekly. Chances are if they do lots, they have seen lots and will have the support staff you will also need( stoma nurses, supply lines in house,understanding the degrees of "normal"). I don't care about bedside manner either- I want a self assured big shot who thinks no one is better than him/her, and that no better care can be found than what his/her team can do. Best to you.

I honestly don't remember how many procedures my surgeon had done at the time I was going in for surgery. I know it was a lot though. I interviewed two different surgeons. One very well known in NYC and the surgeon I went with is in Philadelphia. (I'm in NJ so equal distance to both cities). I just felt more comfortable with the surgeon I ended up choosing even though the surgeon in NYC probably had done more j pouches. I let my gut decide. (no pun intended!) I chose well because my surgeon made me an awesome j pouch.

I had a 2 step laparoscopic procedure. I was very ill going in. I had one complication after my first step....an abcsess/infection. Not fun but in the grand scheme of things, it cleared up rather quickly. Step 2 was takedown and that went off with no issues. Start to finish it all took 4 months.

I'm very happy with my j pouch. No meds, no pain, no urgency and I can eat real food! And of course, no UC !!

The surgeries are tough. No sugar coating it. But for me it was all worth it. Best of luck to you.