Meeting with a surgeon tomorrow, need some advice/have questions

Hello,

I've been dealing with UC since August 2012. I've taken Asacol, Apriso, and am currently on 2.5 mg of prednisone, trying to get off of it, and on Imuran. I've also been doing the SCD diet since August of 2013. I've lost a ton of weight, and being on SCD hasn't really helped all that much. Recently I stayed with some friends who are in to nutrition to help me get my weight up. Things were going well, until I came home for Thanksgiving, and got a stomach virus and promptly lost all the weight I had gained and more. I still deal with D and bleeding on a daily basis.

My most recent GI doctor appt. didn't go well, as I suspected. He's quite upset at my 95 pounds (I'm about 5.5) and insisted that I meet for a consultation with a surgeon, and told me that I need to start playing by his rules or find a new doctor. I understand his concern, and as much as I don't want to have surgery, I'm very tired of being sick and tired all of the time.

I also meet with another dr. who is more nutritionally based on January 2nd. Regardless of what I eventually decide, I've already said no surgery until at least February.

So, a few questions...or just some feedback would be great.

I have quite a few questions for the surgeon, but are the any other suggestions out there on what I should ask about before I go there?

I'm 28, single, but someday, I want to have kids. If I have this surgery, how much will this affect things? I'd love to hear from some ladies on if they were able to become pregnant after the surgery etc. Or if you weren't able to. I really don't want to have a bag forever, and so I'm guessing that means a j-pouch.

How many surgeries are needed? Seems like I always hear about 2, but some searches indicate 3? Anyone ever able to get it all done at once?

How long did recovery take for some of you? I'd love to hear back from someone my age as well.

I've considered doing Remicade as well, but honestly, I'm just not sure I want to keep dealing with meds and diet and wonder if it's time to do surgery. I just want to feel better and have energy again.

I'm sure there are some other questions I have...but I'd like to start with these and just get some feedback from people who've gone surgery route, and hear some positive things.

Thanks!

Amanda

Hi there :)

Ah... the life of having UC. It sounds like you've become an expert very quickly, in under a year and a half you're almost to surgery. You have my sympathies completely, as I know how devastating this disease is first hand.

I am not the contact that you need to discuss surgery as I have not had it, but please let me add a few good words here...

First of all, ByeBye is right... it seems as though most surgery patients come away with this "Duh, why didn't I do this sooner?!" feeling about things. It gives them their lives back.

As a person who has repeatedly considered surgery I will say that it is definitely a struggle to accept that you need it because it is not reversible. If you could get a colon back some day this would be an easy choice. Admitting to yourself that you are sick enough to permanently reconstruct your body is a difficult task. I can say however, that with enough struggle you begin to look at surgery with realistic perspectives... and as you weigh out the good vs. bad you begin to realize that surgery is an awesome blessing available to us. It could be that we just are sick for life, but no... we have this awesome option of removing our disease! This is amazing, really.

What I can contribute to you on is Remicade. I have a very intelligent doctor who doesn't scoff at alternative ideas, but gives me the news straight. His #1 choice for UC treatment is Remicade. If you have not given this drug a chance then in my opinion you are doing yourself a disservice.

A lot of people are scared of the potential side effects of Remicade, and this is not undue. Rarely something bad can happen. One lady in my ccfa support group almost died because of Remicade... but she was one of only 7 or so in the history of Remicade that had her certain reaction. I personally spent three years avoiding the drug due to worry about side effects. However, since beginning the drug I have gotten my life back to a point where worry about UC is very small, or none, each day.

I am on Remicade, and I see hopeful new medicines coming out in the future. You'll have a choice between trying a drug with side effect possibilities, or having surgery with some of its own risks.

The good news is that I believe either way you will be happy. I mean that sincerely. I spent years trying everything under the sun to help with my UC, and in the end what my GI doctor recommended is what helped the most. They are looking at your life with quality of life in mind, and most of the time they really want to help you. If I end up needing surgery I will feel sad at first, scared a bit, but then hopeful... and eventually ecstatic that I don't have to worry about UC anymore!

Good luck with it all. You are definitely not alone.