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Saw the surgeon today

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Crohn's Disease
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Posted 3/7/2012 5:44 PM (GMT 0)
Had an appointment with a colorectal surgeon today to discuss surgical options. Except it was less a discussion of the options and more of an assumption that I would be having an ileostomy - when the surgeon moved onto talking about speaking to a stoma nurse, mentally I was like, "Hang on, I'm not ready for this!". But she did explain why joining diseased bowel together was not a good idea: it is far less likely to heal (particularly if you are on immunesuppressants at the same time), leading to a 30-40% possibility of a hole in the intestines and leakage of the stool into the stomach. I hadn't known that, so it was interesting. I asked about strictureplasty: apparently it's most suitable for several short strictures scattered throughout the small bowel, not one long single stricture like mine. And again there's the possibility of diseased tissue not healing either.

So the cliffs note version of that paragraph is that my consultant was right: ileostomy is the only viable surgical option for me :-/

Being an indecisive sort, I'm sitting on it for a while longer of course. Got an appointment to see the surgeon in 3 months' time, but if I want to move things along before then, I can apparently. She didn't think the elemental diet would work if Remicade hadn't. I asked (somewhat hopefully) if I could come off it and she said no: I was deflated >_>.

I'm kind of in limbo right now. I don't think the stricture will go away (even on this diet I can feel and hear stuff going through it), but I was hoping that my colon could heal at least. On the other hand, I can't help wondering if I will always feel under par as long as I have my colon (the principal site of my Crohn's). The surgeon did talk about that, about how ill people with colitis feel and how often they don't even realise it until they've had their colons removed.
Posted 3/7/2012 7:03 PM (GMT 0)
NCOT, I think if you cruise over to the ostomies board you will see that last sentiment repeated over and over.

It sounds like the meeting went well, and that the communication between you and the surgeon was successful. I want you to feel better.
Posted 3/7/2012 8:13 PM (GMT 0)
NCOT,
If you are anything like me, it is hard to absorb new information, especially if it is not good news. I agree with Kazbern that you might like to talk to the ostomy folks, but you also may want another opinion, or just to take some time to think about stuff. As long as it is not an emergency, you should do the surgery when you feel confident that it's the best decision for you. I am so sorry you are going through all of this....it really stinks and there's no way around it. That being said, the surgery may change your life dramatically for the better....imagine not having to live with pain and suffering! Keep writing....we are all here for you.
Posted 3/7/2012 8:42 PM (GMT 0)
NCOT, I was in same position as you when I was 20 yo and that was 20 years ago and had been in hospital for 5 weeks when they said you can either have an ileo or go home on pred and think about it. I bolter for the hills, the thought of having a bag at that age scared the living daylights out of me and I believed I would cope with the pain and lack of real life. Well within a week I was on the phone begging the stoma nurse to get me in for the surgery. She got me in within 3 days and as soon as I woke up from the surgery I wasn't in any pain from the CD and wasn't running hell for leather to the bathroom.

It wasn't until a good 6 months later when I had put on 3 stone in weight, eating anything I wanted and living my life to the full that I knew how ill I had actually been without really realizing it. Even though I also had small bowel disease and have had flare ups of this since I had never had the pain I had with the colon.

It is a very personal discission and one only you can make. All I can tell you is that despite having further surgery from CD as mine is still in small bowel and will always take the azathioprine I have never once regretted having the ileo done. I gave me my life back and allowed me to live it to the full and I have never looked back.

Posted 3/7/2012 9:12 PM (GMT 0)
fwiw, I think your doctor and your surgeon should get together and talk, and devise some sort of plan of action, instead of seemingly contradicting each other, and leaving the decision with you.

It's too big a decision to make unsupported; it's not fair.

btw, I highly recommend talking with an ostomy nurse. I went to see one when ostomy was a probability for me, and I'm so glad I did. The doctors thought I'd gone to see her too early, but for me, the timing was right. It cleared away a lot of my last doubts and fears, and made me feel so much better about the situation.

Ivy.
Posted 3/7/2012 11:44 PM (GMT 0)
I forgot to mention that my dad came to the appointment with me. He wants a second opinion and my mum is in agreement with him on that. If they are hoping to hear a different opinion, I can't help thinking they will be disappointed to be honest :-/ But that said, I don't mind doing it. Think it's better to see a gastroenterologist rather than a surgeon, however; GIs are inherently cautious about surgery, surgeons are not. Makes me laugh a bit at how eager surgeons seem to be to get straight in there with the knife! <_<

Anyhow, thanks muchly, folks :p

@kazbern - I will take a look at the ostomies board. I dunno if I'm ready to post yet, but I'll certainly browse.

@gumby - It annoys me that there's no way round of having radical surgery instead of a (comparatively) simple resection :-/ But on the other hand, at least it's not a bolt out of the blue for me. For the past few months, the prospect of surgery has been hovering in the background; it just became a lot more real today, I suppose. Even now I can't think of it as a certainty yet - not until the operation is actually booked will I think that.

@stripey - Your post was cheering, so thanks for that! It's really good to hear from a Crohn's person who had an ileostomy done and whose life improved as a result, even with the Crohn's coming back in the small bowel.

@ivy - Well, when it came to surgery, everything the surgeon said was in accordance with what my consultant had said, so I've not got problems with that. But she obviously felt the elemental diet wouldn't make any difference, whereas presumably my consultant must have thought there was some chance it would, otherwise why bother putting me on it? Not to mention doubling the dose of Remicade, which hardly comes cheap. So... I do not know. The only thing I'm certain about is that I want a colonoscopy before I have the surgery to check that my colon hasn't healed.

I'm quite happy to talk with a stoma nurse, too. Not sure when it will be; I should've asked the surgeon about that, but I think it's up to me to set the ball rolling if I want it to.

Phew. Shattered! *collapses* >_>
Posted 3/8/2012 11:18 PM (GMT 0)
How hard will it be to arrange a second opinion? Also, do you get to choose your surgeon? Hang in there. I believe you are very smart and will make the best decision you can!
Posted 3/9/2012 1:31 AM (GMT 0)
NCOT
It's so stressful having your first surgery. I remember being told they were about to do surgery and freaking out. I didn't have much of a choice though...so it took a lot of the stress out of it. I've had 2 since then and have had time ahead to stress over all the what if's and what all could happen.

I don't envy anyone having time to think and debate and stress over it all. It's a hard decision, and in the end, like others have said, it's up to you. You have to be comfortable both doing the surgery, and with the surgeon you have chosen to do the surgery. Getting a second opinion is a great idea, and most doctors agree with giving patients second opinions because over all...it's your body.

I'm thinking about you and wanted to with you many, many hugs and support.
Posted 3/9/2012 2:49 AM (GMT 0)
Gumby - It won't be hard to arrange a second opinion; we would have to go through my GP but I am pretty certain he wouldn't say no. The main problem is, how do you choose? We'll have to think about that one. Good question about the surgeon... I don't actually know! >_<. My consultant said she was one of the best, so I guess I am happy to go with her! That said, maybe I will do a google search on colorectal surgeons...

Becky - I must admit there have been times when I have wished the decision to be taken out of my hands by emergency surgery - there's something tempting about the thought of it being over, for better or worse. But that said, I do know that emergency surgery is generally riskier than elective surgery and also takes longer to heal from.

If it was a resection and nothing else I don't think I'd be putting it off, tbh. But the fact that a colectomy and ileostomy is involved, well, I'm scared to commit to that. Unfortunately I'm not getting any better; I think I may be relapsing :-/ I hope I am wrong on that, but I have not been very well the past couple of days.

My brother has also come to stay for a fortnight. I haven't seen him in about 4 years; he's the brother I get on with the best and I was glad to see him, but, ack, his timing is not good :/

Anyhow... hugs back to you and thank you for your support. It helps, honestly. The same applies to everyone else in this thread and those who have supported me in general, despite my, er, down moments on here... >.> (Venting does help me, but I appreciate it may not always make for fun reading.)
Posted 3/10/2012 2:18 AM (GMT 0)
I hope you feel well enough to enjoy your brother. Good luck with everything.
Posted 3/10/2012 8:23 AM (GMT 0)
i would get a 2nd, 3rd and 4th opinion if it were me. went that route unavoidably, and would never do it again even temporarily if i could get out of it. worst time of my CD experiance. just saying...
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