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So frustrated, surgery plans changed!

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Ulcerative Colitis
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Posted 9/23/2015 9:31 PM (GMT 0)
So I had surgery scheduled 10/9, total colectomy with iliostomy. I was ready and had come to terms with the bag and ready to rid myself of the colon!

Met with both my surgeon and GI today together and they don't want to do it. Two reasons, main one being they think it is Crohn's again no longer UC or it is not UC or Crohn's. The other being that they said I am too small right now and not a good surgical candidate. They said they had several different doctors review my case and no one is sure what happened to my upper descending colon. My Dr actually said it looks like something "weird" happened and maybe isn't your IBD. Which is part of the reason they are hesitant to remove my colon especially in my current condition. I did tell them I am having zero symptoms but my CT looks horrible. It is weird!

I have a sigmoid on Friday and then they are going to decide if I should have a divertying loop iliostomy to let my colon heal and see what it does or do a resection and just cut the weird/bad part out(less likely).

I don't know what to think. I was so ready to be rid of my colon.
Posted 9/23/2015 9:42 PM (GMT 0)
At times like this we have to have faith in the doctors that they know what they're doing and that it is in your best interest. Do you trust them? Maybe a second (or third) opinion? Sorry for your frustration.
Posted 9/23/2015 9:52 PM (GMT 0)
I do trust them. The GI is a second opinion from this spring when I got so sick and my doctor referred me to her. My GI and surgeon are part of an IBD center at a large teaching hospital. My parents have even asked some medical friends for options or referrals and they all say I am at one of the best spots. So short of going to Mayo I'm not sure a second opion anywhere else would do much good.

Not to mention I'm stuck on TPN and no eating until some sort of surgery is done! Feel like I'm out of time!
Posted 9/23/2015 10:10 PM (GMT 0)
I'd vote for a resection based on what you describe; sounds like crohn's. It's certainly weird for uc. Have you thrown antibiotics at it? Have they biopsied it?
Posted 9/23/2015 10:23 PM (GMT 0)
Yes, as soon as they saw the CT I was started on Cipro and Flagyl. My pain stopped right away and I have been on both for the last three weeks. They are the only drugs right now and I am not having any symptoms. Although I'm also not eating!!

It has not been biopsied. From what i understand a scope isnt a good idea right now. They are doing the sigmoid to confirm if everything below the weird spot is normal. if sigmoid and rectum are clear od inflammation they are thinking resection.
Posted 9/23/2015 10:52 PM (GMT 0)
I saw your post on the dark side. I am so sorry. I can imagine how upsetting it would be to wrap your head around the idea of surgery, both the emotional and physical aspects and then have the option taken away... I know you've been spending time researching, asking questions, watching videos and thinking positive for the future and now this. I know it's a tough blow but it is probably for your benefit. Everyone wants to make sure you're getting the best care possible. If it is Crohn's, it is important to hang on to as much of the intestines as you can.
Posted 9/23/2015 10:59 PM (GMT 0)
Met with both my surgeon and GI today together and they don't want to do it. Two reasons, main one being they think it is Crohn's again no longer UC or it is not UC or Crohn's.

This was my GI's biggest fear when I asked his opinion about surgery a few years ago, as he was not able to rule out crohn's in my case. In retrospect, giving him the benefit of the doubt turned out to be good for me.

If there is indeed crohn's pathology, why should one through the surgery process only to end up on the same medications again? It seems very counter-intuitive to me.

I would get a second opinion if you can. You owe it to yourself to seek all possible options -- even if it means traversing the alternate route.

Best.
Posted 9/23/2015 11:13 PM (GMT 0)
Makes sense. It sounds like you have a good plan. There's no reason to fret that you're not getting a total colectomy. You're best to keep as much of your large intestine as is possible, especially if your symptoms aren't bad.
Posted 9/23/2015 11:13 PM (GMT 0)
Awe that sucks! I can't imagine getting all mentally prepared for something like that then being told it's not going to happen as planned, but better safe than sorry plus there's still a chance depending on what more they hopefully learn, that you may still be able to go ahead and get it done, or better yet, they figure out for sure what's going on and you don't have to have surgery after all.

Keep us updated!
Posted 9/25/2015 9:12 PM (GMT 0)
Finally some good news!!! Had my sigmoid today and all 30 centimeters below the bad spot and my rectum are totally healed from the simponi! No signs of inflammation or disease and at one point my Dr said my rectum looked like hamburger meat!!!

So this means I can stay on Simponi and don't have to switch meds!!! And that I can have the resection!!! So resection 10/9!!! Also excited that they can finally do some pathology. My Dr said the portion of my colon they take out they will chop up and do extensive pathology to hopefully determine if I have Crohns or UC!!

I feel like something is finally going right and that we have a firm plan that everyone agrees on!!!
Posted 9/25/2015 9:42 PM (GMT 0)
Glad you've got some good news.
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