Second Surgical Consultation Scheduled

I had a J-Pouch consultation back in Jan and I'm going to get my second one next week. It seems now the last drug that has always worked for me (Prednisone) is failing. I've been on 40mg for a month and it's not controlling my symptoms like it used to. I've had countless accidents over the last few weeks, seeing bloody mucus, bad gas pains etc. I'm also on 6mp which obviously isn't helping either. I know the surgeon wants me off steroids for surgery, there is no point on me staying on Prednisone being that it's not helping at all. I've begun taper down. My body will more than likely make the surgical choice for me. We'll see how bad I get once I get down to lower doses and then completely off. After 15 years, this disease is getting really old

I had to wait about 10 weeks for the surgeon to operate on me due to his schedule being booked solid. I was only on Predisone going into the surgery, my GI wanted me off of Simponi because it didn't improve my symptoms after switching from Humira.

Are you going to the same surgeon as in January? or will this be a new surgeon?

Pluot said...
I wouldn't start tapering until you pick your surgeon and schedule your surgery. There's no benefit to being off of steroids if it means your health is destabilized.

I was on 40 mg of prednisone when I had my first step and my surgeon told me emphatically *not* to taper at all before surgery. He rapidly tapered me with IV steroids after the surgery so that I could safely be discharged on 10 mg per day, and then very gradually tapered down from there over six weeks.

I already have my surgeon chosen, he did my sisters J-Pouch 22 years ago. I've had one consultation already with him and have a few more questions. The first consultation he wanted me off steroids, the 6MP he said was fine to stay on it.

Dikid said...
Have you tried other forms of medicine to stabilize you until you can have surgery
Have you been on remicade? Have rectal medicines ever helped?

I've been on virtually all drugs available :( I was on remicade for a while and it helped but failed, I tried Entyvio not long ago and that never worked. My GI has nothing left to prescribe me. He's done everything in his power to control my symptoms. My previous surgery is also a reason for the J-Pouch. I have 15 inches of my colon already removed from my left side. The way my colon is now, it's a straight shot down to my rectum and I can't hold in loose or soft bowel movements.

It's preferable not to be on prednisone when undergoing surgery (faster recovery period) but not always realistic to be steroid free on surgery day. While on steroids, it is commonly a 3 step process (that is three separate surgeries) rather than 2.

You don't even have a surgery date yet, I wouldn't get ahead of yourself.

as each day passes this decision for surgery becomes more and more easy to make in the yes direction. Every trip to the bathroom, every accident, every pain and knowing I'm out of medications to control my disease is making it much easier. I haven't seen remission in years. My condition has been calm at times but has always been short lived, especially after my first surgery in 2013. I'm a prisoner to my house, especially the last 3 months or so due to the accidents. I'm only 42 and look ahead and ask myself do I want to deal with these issues the rest of my life. They aren't going to go away and without an effective drug treatment, why continue to go through it in hopes prednisone will make is subside for a period of time. I went through a brutal painful surgery already and I'm naturally nervous but the pain was only temporary. Seems like a small price to pay in order to try and get my life back.

ks1905 said...
I was the same as you, I was basically begging for surgery by the time I went in...I had just had enough of UC.

I had never had surgery before but I was surprised how little pain that I had with my colectomy. I was off all pain meds within 2 weeks of my colectomy. I did have more pain when I had my j-pouch built, that was to be expected but was manageable; that pain took about a month to completely go away.

Overall I had considerably less pain then I expected from all 3 surgeries. I just felt so much better but I was really tired after each step; especially step-2.

I had epidurals for my first 2-steps and a regular pain pump for the take-down.

How are you doing with your J-Pouch?

ks1905 said...
I love my J-pouch, I empty it 3-5 times a day and can do whatever I want. I do have chronic pouchitis but it doesn't affect my life too much except for needing to take antibiotics daily.

What about your diet? Any restrictions / limitations?

Best of luck to you blksteeda, I know you've been struggling for a while. I can't see living with this forever. It's just too challenging, limiting and unpredictable. Prednisone is the worst too. I can't live taking that, accepting to hate the way I look, feeling insecure, ruining my bones. It's just not worth it.