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Am I making the right decision?

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Posted 11/10/2014 4:28 PM (GMT 0)
Hi everyone!
So surgery is about a month away. Ive just been thinking a lot about if I am making the right decision. My problem is worrying if I will feel worse afterwards. The reason I worry about that is because going into surgery I feel fine. This is only because I am on Prednisone though. Once I try to taper the prednisone I see how I feel and think surgery is the right decision. However, I feel like if I could stay on prednisone and feel the way I feel right now I would rather do that than surgery, but I know I cant stay on prednisone forever. I see stories of these people that were very very bad off, in and out of the hospital and the wish they had surgery sooner however I have never been that bad off (but only because of prednisone.) Everytime I tried to go down and felt bad my GI doctor had me go back up on my dose. Even though I know I cant stay on prednisone forever I am just worried about feeling worse after surgery than I do now. Anyone think this is possible and I am jumping into it? Or am I overthinking it and surgery is really my best option? I have been on fluctuating doses of prednisone constantly for 2 years.
Posted 11/10/2014 6:18 PM (GMT 0)
What do you mean about feeling worse after surgery? In what way?

The surgery and recovery process isn't fun, but I can say that after my colectomy despite all the pain I was in, I didn't feel like I had this lurking sickness or disease in me anymore. It wasn't even something I realized I'd felt for so long until after it was gone.

It's extremely terrifying making the decision to have surgery, mostly because it is so final and there are a lot of unknowns going into it. What makes it even worse is that your body is lying to you right now because of the prednisone. I was the same way - everytime I'd start to see any signs of remission I'd be all, "nope, nope, nope, I'm fine, see?!" with regards to surgery but within a few weeks of going off cyclosporine (the only induction med that ever worked for me - I failed all maintenance medicines, as well as prednisone) I'd inevitably start seeing symptoms again and land back in the hospital until even that no longer worked, and it was causing damage to my kidneys.

I wish I had better advice to give, but ultimately you're the only one who knows what is right for you. I re-read your other post and it sounds like you've tried just about everything. The truth is you can't stay on prednisone forever, and you are doing your body much more harm in the long run in doing so. Truthfully, I haven't kept up much with any newer medicines/treatments in the last year since it really isn't a concern for me anymore, so I don't know what else could possibly be out there.
Posted 11/10/2014 7:12 PM (GMT 0)
Amanda -
Yes, surgery is scary because it is so permanent. And it is scarier because it is often presented as a choice to the patient. So it is on us to make a decision to have this permanent life-changing surgery. Your subject says it all - "Am I making the right decision?" What I realized when I "decided" to go for surgery, and others here have concurred, is that there is only the illusion of choice. When you are so sick and all of the meds are not working, there really isn't a choice. Surgery is the only option. And let me tell you, most people here (myself included) are very happy with their "choice" to have surgery. You are also dealing with another illusion - that of the prednisone. You may feel better when on it, but you are not getting better, and you cannot be on it forever. (Take it from me - this past year on it gave me osteoporosis at age 38.) Good luck, and try not to overthink too much.
Posted 11/10/2014 9:08 PM (GMT 0)
I only had a week and a half between my surgery consult and the operating table so I didn't have a lot of time to sit and dwell about it. It sounds like you have had a lot of time to sit and think and you still have a month to go. It's totally normal to second guess yourself but in the end I think you know deep down the answer is you need to have surgery. That prednisone is absolutely horrible for you to be on long term but you already know that.

The whole process is no picnic but I would do it over again in a second. That's how much I hated having UC and love my new life with my J pouch. I couldn't imagine going back to living with Uc again. Try not to worry....you will do great!
Posted 11/10/2014 11:58 PM (GMT 0)
I got to the point where pred was the only thing that worked at all for me.... gi said it was a matter of when not if I would get diabetes or glaucoma or a host of other serious pred complications. Pred long term is not an option.... I used to call it "the devil that I know," and my gi's response was, "it's still the devil."

So, I think you have to keep it in the mix just how bad long term prednisone use can be. That's hard.... because it's a theoretical possibility compared w/a very real surgery.

On the other hand, after surgery, I realized just how sick I had been, when I felt so much better.... you get used to being sick..... so you might find that you didn't realize how sick you were....

Hang in..... definitely hard.
Posted 11/11/2014 6:37 AM (GMT 0)
Undergoing a surgery is really a hard decision to make, but in my case, it's the only option I have after diagnosed with Chron's. Adjustment period was also difficult but with the help of my family and those people around me I was able to survive it. I've been living with stoma for 10 years now and I'm happy that I made that decision.
Posted 11/24/2014 3:17 PM (GMT 0)
Thank you everyone! I feel so much better knowing I can hear other people's stories that have been through it(: I seriously cant believe that it is only about 2 weeks away. I have my pre surgical appt on Dec 1! Just wondering how long afterwards everyone was able to go out and do things? For example, surgery is Dec 11, and my job is having our christmas party on Dec 22. Is that long enough to go? I know I wont feel 100% but I really want to try to make it. Again, thanks so much for responding, it means a lot!

Post Edited (Amanda_Leigh09) : 11/24/2014 8:27:38 AM (GMT-7)

Posted 11/24/2014 4:08 PM (GMT 0)
Hi Amanda, my daughter's 1st (of 3) step surgery was a few months ago. If you are having the same, she was out of the hospital on day 5. The next 2 weeks were pretty low energy days, not much pain unless she over exerted. I'd expect you can attend a party, if you sit thru it and have a driver both ways.
I know surgery is frightening,and the body image issues count, but a good surgeon is key to a good outcome. Keep asking questions. My info is fresh, so ask away. Not far enough ahead of you to know the distant future, but I am at your service. I do know that Pred. is not an option. Every day on it risks more. You will be on a short burst of it for surgery, then taper. Soon, you will be enjoying food you could not touch before, and your body will have new life.
"Our" second surgery is Dec 5th.
Posted 11/24/2014 4:28 PM (GMT 0)
HI Amanda. Well, I'm 6 weeks post-op Step 1 of 2 tomorrow. I know exactly how you feel re: prednisone...that was the only thing that kept me going for the last year. And like you, I would start thinking I feel fine, why have surgery? Well a week pre-op (even on 2.5 mg of pred still) I started flaring badly and really couldn't do anything about it...just suffer thru and wait till surgery. It was like the UC gods were reminding me why I was going thru this! I was in the hospital for 6 days, pain was very manageable (I was completely off all narcotics on day 3 in hospital). My biggest learning curve was and still is managing the loop ileostomy. Make sure that your first order for wafers is "cut to size". Medical supply company ordered me 20 wafers that I never even used because the stoma shrunk. Of course, I developed some skin issues but they have been resolved with the help of a great WOCN. I was driving 10 days after I got home and then started getting out to lunches, etc. I have found my energy level is definitely still affected, but gets better each day (just listen to your body...if you need to lay down do it!). And gaining weight back with the ileostomy isn't easy either (although I pretty much eat what I want!). Don't know how old you are, but I just turned 58 and if I can do it you certainly can! I am going to make a guess though and say don't plan on the office Christmas party...you may have a JP drain when you're released (I did for the first week!)...you won't really feel like partying! But just think how much fun you'll have next year when this is all over!!! Good luck!
Posted 11/24/2014 5:09 PM (GMT 0)
You probably *could* go to the office party, if all goes very well after your surgery. You likely would need to sit a lot of the time, wouldn't feel like staying very long and would need a driver since you'll probably still be on pain meds. You also wouldn't be able to eat everything there, since we're supposed to stick with a low residue diet for 6 weeks after surgery.

For me, I was in the hospital for 1 week after my surgery for total proctocolectomy with end ileostomy. I didn't come home with drains or anything, but was still on a little pain meds...though my pain wasn't bad. I think my first outing was about 11 or 12 days after the surgery, and it felt great! My Mom and I went shopping and out for lunch. I was never very tired during the recovery, so getting out and about was good for me and didn't wear me out. 3 weeks to the day after surgery, my Mom and I took a road trip to visit family. That was a 7 hour drive each way, and I did a lot of the driving.

Good luck with everything!
Posted 11/24/2014 7:36 PM (GMT 0)
Amanda,

I was able to postpone surgery twice because of Cyclosporine but in the end I really needed surgery, all the meds were just a bandaid and not a solution to my problem (severe UC). I'm happy that I had surgery, I only wish that I had surgery 9 years ago when I first needed it.
Posted 11/25/2014 3:33 AM (GMT 0)
Thank you everyone! Yeah the christmas party is just a small little thing we do each year. It isnt like a huge party or anything like that. It is fairly laid back, so I guess I will just have to play it by ear and judge if I go or not based on how I end up feeling afterwards! Oh and Ladygolfer, I am 19! Thanks for the advice about the cut to size wafers, i'll have to keep that in mind!
Posted 11/27/2014 6:00 PM (GMT 0)
Was in a similar position to you. I was okay while I was on steroids. For a few years I got away with taking one course of steroids per year. But in 2011 I had a massive relapse which put me in hospital for nearly 2 weeks. After that I had to stay on steroids near continuously; every time I tried to get off them I'd be back in the hospital and on the IV steroids.

I put up with it for nearly a year and a half, then a flare up shortly before my birthday made me snap and I booked surgery. I'm not gonna lie: I'm not totally thrilled by the results, but I'm here and I'm alive, I guess. I'd rather have stayed on steroids, but they are too dangerous - like you said.
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