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Posted 4/19/2016 5:49 PM (GMT 0)
Good afternoon - some of my friends at the Ulcerative Colitis forum mentioned I should post here.

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. :(
Posted 4/19/2016 11:16 PM (GMT 0)
Hi! I can only relate my own story and everyone is different. I suffered with UP (my disease was confined to my rectum) for twelve years. Like you, I tried most of the meds, 6MP (on it for seven years and didn't do squats, except to increase my liver and pancreatic enzyme levels), Remicade (failed after 3rd infusion) and Humira (no change after three months). I became prednisone dependent and it gave me prednisone induced diabetes and uncontrollable high blood pressure. My GI doctor refused to send me to a surgeon, so I found one online. The surgeon I chose was head of colorectal surgery at the Univ. of Penn. Hospital, trained at the Cleveland Clinic and had over thirty years experience. At my very first visit, he told me I was NOT a candidate for jpouch. Didn't matter to me because I was just so sick of being sick. He also would not clear me for surgery unless I passed a stress echo cardiogram. I was 63 yrs old at time of surgery. I had to be off the Humira at least six weeks prior to my surgery. I tried to taper down my prednisone but began flaring at the 20 mgm level. So, I was on 20 mgm of prednisone at the time of my operation. However, unknown to me, my surgeon left the anus. This was disappointing because my rectum was the culprit and by leaving a rectal cuff and the anus, my disease has reoccurred in that area..ugh. My operation was in June of 2010. The UC came back inside the anus in Aug of 2014. Of course, with my luck, my surgeon retired in 2013! I am now seeing a colorectal surgeon locally, here in south Jersey. He did extensive biopsies and there is no dysplasia or cancer, but the disease is there. He said surgery is only a LAST resort. In his opinion, it would be too much of a surgery for me to have to go through AND I still may have "issues". I tried the rectal meds and they seem to squirt through to my vagina! So, I know I must have a rectovaginal fistula in there somewhere, probably under that cuff, but, they can't seem to find it. My new surgeon suggests I have biopsies every two years. At the moment, I am not in much discomfort. I don't use the anus to evacuate, so that is a good thing. I did ask my original surgeon if he were going to do the surgery laprascopically and he said "no way".

To answer your questions....in my opinion, I do not believe only 4 procedures a years is that much. Is there a way you can find out more info about your surgeon? Do you live near a large teaching hospital? Usually, these facilities are better. There was no way I was going to have my surgery in Jersey. After a hospitalization in 2008, for my UC, I sought a colorectal surgeon here in Jersey. He said..."NO Surgery" huh? Isn't that how they make their money? I think he was referring to a jpouch without even asking me. He told me with a jpouch I would probably be running to the bathroom more often than I was with the UP. Sometimes you just have to wonder....
Posted 4/20/2016 7:29 AM (GMT 0)
Hi Help!
I was diagnosed with UC also, and went through all of the meds very quickly. Literally nothing worked, besides oral pred, which after one course of for 8 weeks, I really never wanted to take again!
My surgery was semi-emergency. Basically I was transferred from my old GI to an IBD clinic in a teaching hospital because I had run out of all treatments and he thought in a multi-disciplinary clinic I'd be better looked after in the condition I was in. I met with my new GI and he told me to come back in 5 days for a scope & to have a chat with the surgeon. I deteriorated badly in those few days, probably should have taken myself to the hospital, but knowing I'd be back in a few days anyways - I figured I'd be better at home! When I arrived, I was admitted instantly. I hadn't eaten in days (i couldn't!), my temperature was very high, I was severely anaemic, my inflammation markers were "impressively high" (surgeon's words!). And I had surgery two days later.

With regard to your questions: in Ireland we wouldn't have the same range of surgeons that may be available in the US for example. Though when I met my GI and we were discussing surgery, he said to me that there would only be two colorectal surgeons in the country that HE would allow operate on him if he needed it, and one was my surgeon - so I was happen enough with that! And he trained for J-pouch surgery in the Cleveland Clinic. So I didn't really have time to research for any other surgeons, and I'm not even sure that there would be many more in Ireland to look for; but if you have the time & resources, then it would probably be a good idea.

If you're going for a J-pouch, then it's 2 or 3 surgeries. I think it depends on what your surgeon prefers, and also your health going into the surgery.
I wasn't on steroids before surgery, but if I were to get a J-pouch, I would still be getting 3 surgeries. I am not going to get a J-pouch though, I'm sticking with my ostomy! Though my surgeon left my rectum, which has been flaring since last November (semi-under control with pred suppositories at the moment), so I will have to have one more surgery to get it removed - I want rid of it all!
It's something to consider before, that you may want to stay with your ostomy. If you are getting surgery in 3 stages though, then after the first step you will have an end ostomy and can see how it goes. I was told by my surgeon that I could come back in 20 years and say I wanted a J-pouch then! If I don't get my rectum & anus removed that is!
Just make sure you're as informed about ALL of your options before deciding what you want! You don't just have to settle with a J-pouch, or settle with an ostomy, or with whatever your surgeon first says, if that isn't what you want!
Posted 4/21/2016 10:47 PM (GMT 0)
Thank you all very much for the kind words and suggestions. I met with my regular GI yesterday and he gave me another referral for a surgeon. I'll get a 2nd opinion just in case. The first surgeon sounds good though; found out some more info. He does a lot of laproscopic surgery besides the colostomy and j pouch. Well see I told the GI doc I'm going to interview with at least 3.
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