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Fistula attached to my appendix

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Crohn's Disease
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Posted 4/12/2015 11:21 PM (GMT 0)
Hello,

Has anyone ever experienced a fistula that has attached to your appendix? Just wondering how that was dealt with?
Thanks!
Posted 4/13/2015 12:17 AM (GMT 0)
No, but that sounds awful. I am so sorry.
Posted 4/13/2015 12:36 AM (GMT 0)
Do you know where it goes from your appendix? It might attach to your large intestine. You will likely need to see a surgeon. They can remove your appendix with a scope, so hopefully they can take the fistula as well.
Posted 4/13/2015 12:49 AM (GMT 0)
I think it's from my ileum.. Along with many others from my ileum to small bowel. Just curious how they are going to want to deal with it...
Posted 4/13/2015 1:08 AM (GMT 0)
My guess is remove the appendix and try to close the fistula while they are in there. But I honestly have no idea. That really sucks, I am so sorry. What meds are you on for your Crohn's? Have you tried the SCD diet? I know some people on the forum have had a ton of success with SCD diet for healing fistulae, and Remicade is supposed to be the best med out there for helping fistulae heal.
Posted 5/5/2015 11:31 PM (GMT 0)
I am on no meds right now.. I have recently started seeing a new doctor at Mount Sinai in Toronto.. I only recently found out that they have an amazing IBD team there so I got a transfer... I had a colonoscopy a couple weeks ago so I am waiting to hear back... He did come see me right after and said that I will probably have to have a resection of Ileum due to all the fistulas... Also because of this one attached to my appendix. They meet with a panel of doctors and radiologists once a month to determine how to treat each patient.. That is happening this week.. So I am anxious to hear the outcome.. We all know the waiting game.. Great thing is I feel like I am in very capable hands...
Posted 5/6/2015 12:43 AM (GMT 0)
Glad to hear that you have good docs. I had an ileo-colic resection last year. They removed part of my ileum, which is attached to the appendix so they removed that as well and re-attached the small bowel to my colon. It can all be done laparoscopically. I didn't have any fistulae, so your case is more complicated, but hopefully they can surgically correct it all and then you can start on medication to prevent it from happening again.
Posted 5/6/2015 1:05 AM (GMT 0)
I hear that after an ileum resection especially when the ileo-valve is removed more then likely you will have extreme diarrhea possibly for life?
Posted 5/6/2015 1:53 AM (GMT 0)
It depends on how much small intestine they have to remove. I had 22 cm of ileum removed and the ileocecal valve. I had some D as I recovered from surgery, but now I'm back to primarily constipation (IBS) which is how I was before surgery. You should ask the surgeon how much intestine needs to be removed. They also have bile-binding medication you can take if D becomes a big problem. I worried about the same thing, but it did not become a problem for me.
Posted 5/6/2015 9:44 AM (GMT 0)
That's great that you're attending Mount Sinai now. I've heard nothing but good things about the IBD Doctors there. We even thought about taking our Daughter there as well. If anything were to change with our current GI, we'd be headed there.
Posted 5/6/2015 2:21 PM (GMT 0)
Gumby - It's nice to hear someone say the opposite.. Thanks, it's reassuring that maybe I won't end up with D forever... I think and possibly am just hoping it will be a small amount... I should find out more by next week...

73monte- How old is your daughter.. Are you from South Western Ontario? When I was looking into a new doctor I discovered that McMaster in Hamilton has a pediatric IBD team!!! How amazing..

Also does anyone know if they have to take the Ileo-valve no matter what with an Ileum resection?
Posted 5/6/2015 2:52 PM (GMT 0)
If they have to take your appendix, they will have to take your valve. I know that puts us at higher risk for bacterial overgrowth because the bacteria can reflux back up into the small intestine. It has been almost a year since my surgery. I had one bout of c.diff, and bad IBS, but otherwise I did ok. Try not to worry about the D too much. If you need surgery to get rid of all the fistulae, then you might not have a choice. I guess if you can try medicine like biologics first then you should, but from your description it sounds like they are going to recommend surgery. ( Of course, I'm not a doc, so see what they say)
Posted 5/6/2015 3:31 PM (GMT 0)
Well the docs exact words were "I'm not going to fark around with meds at this point" I think the fistulas must be a concern ...

Funny thing is I am not that sick!! I have had a few bad flares.. The worst one was about 15 years ago.. I have never experienced anything like that since.. Weird...

I trust his opinion so I am anxiously awaiting a phone call to see what the plan is... It's a 2.5 hour drive for me to see him.. So hopefully he will discuss over the phone.. Will see...
Posted 5/6/2015 3:57 PM (GMT 0)
Let us know what you find out. Good luck with everything. It's great that you don't feel that sick, but you don't want to mess with this...I think it needs attention soon.
Posted 5/6/2015 4:57 PM (GMT 0)
I hope all goes well for you, Dawn. I didn't have this type of surgery, but I was told that with a third of my colon gone that I'd have life-long diarrhea and that hasn't been the case. I guess everyone is different.
Posted 5/6/2015 5:44 PM (GMT 0)
hey dawn,
hopefully you surgeon has done a few colon/rectal op`s, if so you`ll be fine, I`ve had 3 total, lost a good bit of intestine, sigmoid, 1/2-rectum, ilieum, and had quite a few stricture`s opened up, and a few bad ones taken out, i had 3 fistula`s at my last op. and the recovery was real rough and long, just try and get your vitamin levels up now before you go in, it`ll help when they close you .. they really won`t know what all they will do untill they open you up? because scans and test only show so much, but they will probley open you up because of the fistula`s.. but that will be good for you.. that way they will be able to run the whole bile track and see it all, they very well could catch something that they didn`t see in one of there test, you`ll do good when you have a team looking at the problem, they tend not to miss anything.. just let your feet hit the floor as soon as you can so every thing drops back into place, and you`ll get home sooner.. good luck..
Posted 5/6/2015 5:57 PM (GMT 0)
Okay, good info.. Thanks..
When I know more I will post more info.. Fingers crossed it's nothing too drastic...!
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