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Posted 3/13/2013 3:48 PM (GMT 0)
shocked  I put a call in today to schedule my Perm Ileostomy Surgery.  At first I talked about it like it was no big deal, went and seen the surgeon and now called to make the official date.  Now I am scared.  At first I was going to put it off because I was in remission due to the Remicade.  God must have sent me a sign, because no sooner did I feel that way, I started seeing return symptoms.  I am maxed out on Remicade and most other drugs, but not prednisone.  I would rather get this taken care of then wait until I am prednisone dependant.  Hopefully I am making a good decision.  Any help or advice would be greatly appreciated.
Posted 3/13/2013 4:19 PM (GMT 0)
You are probably going to second guess yourself right up until you go into the room. That's just how it is. You may find that as you get closer your colon will sstart to behave, don't let it trick you! Make a pro and con list, your pro list will be way longer, and keep it with you. Or keep a mental one. When you think of something you want to do and can't do right now because of being sick, think ok in a few weeks I can do this, or eat this or whatever. You might come up with some weird reasons to not have surgery, just remember all the reasons to have surgery.
Good luck!
Posted 3/13/2013 7:03 PM (GMT 0)
Don't stress too much...it's a difficult decision to make but so worth it!

My reason for having an Ileostomy goes off to college in the Fall...time flies when you can be the parent you want to be!!

I would also suggest a pro/con list...and a 'post surgery list'! It will make your day when you can accomplish things you couldn't do before surgery...and getting off the drugs should be at the top of the list:-)

Let us know when the date is set and you'll get so many great suggestions for before and after surgery from everyone here.
Posted 3/14/2013 12:54 AM (GMT 0)

A "Pro & Con" list can be very telling, at least mine certainly was.   My "Pro" list far outweighed my

"Con" list.

I was pretty much housebound and 90% incontinent and so horribly miserable that I was counting

the days until my surgery, so I had no second guessing.    However, I do believe that it would be

very normal to second guess such a life changing event as this surgery.  

Once I made my decision, I thoroughly researched and poured over the archives on this board and

a couple other ostomy boards.   I kept a word file on my desktop and would cut & paste & save any

tip, product recommendation, application procedure, etc,  that I thought would be helpful.  You

Tube has some very helpful and encouraging videos by ostomates.

I did not know a single soul with an ostomy, nor had I ever even seen an ostomy pouch.  So, I

contacted all of the major companies and requested samples of pouching systems & any products

they thought would be helpful, to help familiarize myself with what was to come.  They were very

generous with samples and a couple even sent me nice canvas kits with scissors, mirrors, etc.

Good luck and keep us posted.  Everyone here is wonderful with helping with any issues that may

arise :-)

Posted 3/14/2013 2:31 AM (GMT 0)
I am only 10 days out from my first of 3 step J-pouch surgery so I know exactly what you are going through. It is terrifying. But even in only 10 days, this post-op pain is a walk in the park compared to what I was going through before. I bet you it would take you only a few seconds to ramble off hundreds of things that you didn't do, places you didn't go to, events you ducked out of early because of your stupid illness. And today, I can tell you I sat outside in my patio in the sun for 3 hours and just watched videos on my computer. And not once did I think about the bathroom. And afterward, when I reflected on that it was just crazy. A pro and con list is an amazing idea. I didn't have one, but it makes total sense. And just remember that there are way more people out there with ostomies than you may think. Plus, at least you'll get a chance to be you. You can do what you want to do and make plans and follow through with them. You can be the person you want to be.

I know I don't know you personally, but I am so proud of you for making this decision. Seriously. And if there's any way I can help, let me know.

PS. I'm still new to this, but this forum is amazing and everyone else here is amazing. Stick around =).

Ekta
Posted 3/18/2013 12:04 PM (GMT 0)
I just wanted to say thank you to all of you for your encouragement. This is a very hard decision even when your quality of life is not the best. My doctor called me back on Friday and told me my surgery is scheduled tentively for the 19th of June. I work for the schools, so I will have about 8 weeks off to recover. My husband and I have been viewing utub videos left and right. I do have a question though...I always have severe gas pains/cramps even if I am not needing to use the restroom. Do you experience gas with a perm. ileostomy? I have read so many posts and I am hoping and praying that I am one of the people who feel better without my diseased colon inside me as soon as I wake up from surgery. My fear is I will feel worse. Just scary when you have no way of knowing your outcome.
Posted 3/18/2013 1:11 PM (GMT 0)
Kim. congrats on making a decision. You WILL feel so much better once that diseased colon is gone. And yes, one experiences gas with an ileostomy. But it is far different than with a colon.
Posted 3/18/2013 6:31 PM (GMT 0)
Kim,

I think you'll be very happy with your decision. I was happy from the moment I woke up to have that nasty thing out of my body and I didn't even care if the ileo was temporary or permanent. Two years later, I still don't care and am both, happier and healthier than I have been in many years.
Posted 3/19/2013 7:13 AM (GMT 0)
I have made the decision too but haven't yet actually made the call. I am having trouble sleeping due to the decision, in fact. Wife, understandably, says she wont believe me until the anasthetic IV starts flowing... I keep second guessing thinking that maybe this or that will finally give me a multiyear remission, in time for new drugs. But I am going to make the call and get this done too- congrats on the decision. I think it's the loneliest decision ever really, no matter how many people you have supporting you, but as has been posted, we need to focus on the countless positives and not the few negatives.
Posted 3/19/2013 12:52 PM (GMT 0)
Probiotic,

It is a very lonely decision. The crazy thing is you know there comes a time when the decision has to be made and then you start second guessing yourself like crazy. I had my remicade infusion on Friday. Today I am feeling really good. Last night I got a call from my doctors office that my platelet count is low and he wants me to do labs again this week along with a pathology report. I am not worried, because I know it is the remicade, but it is just another push in the surgery direction. I read on this site that your colon will start acting good when you make the decision. Boy, how true that statement is becoming. Still even though you do get all the little pushes it is still a bitter pill to take.
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