So my colostomy reversal is on hold for a few reasons, mainly I have a rectal/vaginal fistula and I need to find the right surgeon to correct it. Consulted with a very experienced albeit old school if you will surgeon. She's been doing colorectal surgery since the 70's. She says to go in abdominally, fix the fistula and do the reconnect then divert my upper GI with an ileostomy for 8 weeks. I really don't want ANOTHER ostomy, jeezzz. This one was supposed to be temporary too but I'm almost 6 months in and now I have an ostomy hernia and a kidney stone that's got to go too. Another doc who sorta specializes in fistulas initially thought fixing the fistula vaginally would be most appropriate but he's kinda wishy-washy and wants me to see another colorectal surgeon. How many consults should I go on? I think they are all liars and thieves and I don't want to end up with a, oops, sorry we can't reverse your ileostomy, situation, one ostomy is one too many for me (mine was a result of trauma). Anyone know of an awesome colorectal surgeon in NW Oregon? What would you do?
pojo
Jun 28, 2011 1:28 am
So my colostomy reversal is on hold for a few reasons, mainly I have a rectal/vaginal fistula and I need to find the right surgeon to correct it. Consulted with a very experienced albeit old school if you will surgeon. She's been doing colorectal surgery since the 70's. She says to go in abdominally, fix the fistula and do the reconnect then divert my upper GI with an ileostomy for 8 weeks. I really don't want ANOTHER ostomy, jeezzz. This one was supposed to be temporary too but I'm almost 6 months in and now I have an ostomy hernia and a kidney stone that's got to go too. Another doc who sorta specializes in fistulas initially thought fixing the fistula vaginally would be most appropriate but he's kinda wishy-washy and wants me to see another colorectal surgeon. How many consults should I go on? I think they are all liars and thieves and I don't want to end up with a, oops, sorry we can't reverse your ileostomy, situation, one ostomy is one too many for me (mine was a result of trauma). Anyone know of an awesome colorectal surgeon in NW Oregon? What would you do?
Past Member
Jun 28, 2011 9:32 pm
Pojo,
Your say your ostomy is the result of a trauma, is the fistula due to trauma as well? So in other words, the tissue would still be relatively healthy as opposed to a radiation-induced fistula, which I have had to deal with surgically. Just wondering what the situation is before commenting...
Orchid
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Posted by: iMacG5
Hi Crossley. Ya know, I think it’s all about feelings. I don’t mean the pain feelings which could control everything. I mean the feelings inside our heads, our hearts and even our souls. I mean the feelings of who we are now compared to who we were; how we accept our situation or maybe we don’t. My wife asked how I felt and I said, “like crap”. She asked what hurt and I answered, “Nothing hurts, well, everything hurts, I don’t know, It all sucks.” That was a long time ago. You question if your feelings are normal. How normal is it to relocate your butt hole to your belly where it’s usually in the way of your belt and, you know. But that’s where we are and for lots of us we are so much better off than we were before, physically. Emotionally, psychologically, well, that might be a different story. I believe talk therapy is wonderful if we could find a real empathic or sympathetic listener. So guess what! I found MAO and began “talking” with a keyboard with some of the wisest, kindest most sympathetic and compassionate folks on the planet. Regardless of where we’ve been, lots of folks here have been there and worse places and found their way back healthier and happier. We really do help each other.
Keep “talking”,
Mike
pojo
Jun 29, 2011 5:10 pm
Yes, my colostomy and fistula are a result of trauma. First, I had a hysterectomy, which ended up being really aggressive as a result of excessive scar tissue, supposedly everything in my pelvis was stuck together with scar tissue and the surgeon had to do a lot of dissecting. The surgeon nicked my bowel during the hysterectomy, and I had to have emergency trauma surgery three days later. That's when I got my colostomy. The fistula was discovered months later; it runs very low in the middle of my vagina to the rectal stump. So, yeah, the tissue is pretty healthy overall and not deteriorated due to radiation. I do have IBS and diverticulosis, but both are managed fairly well, and they are going to take out a little extra colon to clean up the diverticular pockets whenever the takedown surgery occurs.
o:p /o:p
The complexity of this situation is how to correct the fistula AND reconnect the colon. My GYN says the fistula is so low that going in abdominally isn't ideal. So, he suggested trying to correct the fistula vaginally then waiting for it to heal then doing the takedown later. But, he's kinda wishy-washy and has referred me to a colorectal surgeon for another consult. Then separately I met with a very experienced colorectal surgeon who says to do the fistula and the takedown at the same time, thus the need for a temporary ileostomy. I don't think she wants to cut me twice abdominally because of my tendency to have a lot of scar tissue. I have one other consult coming up. I just don't know whom to trust. I spent a lot of energy looking for the right surgeon and surgical approach to my hysterectomy, and I ended up picking a surgeon who basically butchered me. I am scared that I'll end up with a permanent ostomy of some sort due to scar tissue and these seemingly endless cascading complications.
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Past Member
Jun 30, 2011 3:56 am
Wow, Pojo, you've been through a lot! I'm so sorry to hear of the complications. I wish I had had this site and had asked your question before my 3 surgeries regarding this issue, so I want to offer what in hindsight I wish someone had said to me.
Sounds like radiation or no, we both dealt with the complication of scarring. From my experience I think it's key to have the rectal side of the fistula tract handled by a specialist so the chances for reversal/success are best.
Especially since it's so close to the anal muscle ring, which mine was too, which if treated incorrectly often cannot recover or remain properly aligned.
In my case, I had many techniques attempted- three surgeries - to close what started as a very small fistula, and each surgery made it worse, ending up with my temporary ileostomy being now permanent.
From my experience I'd be inclined to go with the specialist, do it in one surgery and let the temp ileostomy happen so it can have the best chance to heal up properly.
Personally, I would request both the colorectal surgeon and a GYN both participate in the surgery. A team is better, and they commonly team up. The last surgery I had had a good team of three dr's, but did not include a colorectal specialist, and I believe that was a major mistake.
However I would first try the least invasive least risky fixby seeing if it might be appropriate to insert a Fistula Plug to first fix the fistula.
Dr's don't always think of it or offer it for some reason, but it has a decent success rate and it won't do any harm if it fails.
http://www.cookbiotech.com/productinfo.php?product=fistulaplug page=3
I think you're wise to consult the colorectal surgeon actually, and every specialist you get referred to, since now is the time to do information gathering.
What I would ask all of them:
(I write down my questions and take them with me)
I'd ask them what advantage/disadvantage they think their procedure might have over the other options you've been presented with.
I'd be sure to ask: how many of the specific surgery has the dr done and what has been the outcome/success rate?
I'd be sure to ask them to describe some of the worst-case results that could occur, even if they're not expecting them to occur.
It amazes me they don't tell you unless you ask.
I think the more questions you ask them the more you get an idea of if they're treating you and your situation carefully. It helps you evaluate them.
Though I'm sure you're anxious to be done with it-- take your time.
You're smart to not just trust.
My initial surgeon didn't represent the chances and facts of the surgery accurately at all, and gave me very unreasonable expectations. It felt like such a betrayal!
But I wanted to believe him. I wish now I'd taken more time and talked to more Dr's about various options.
I agree, many of them will do an operation for their own agenda.
And many do the best they can and are good and it still does not go as hoped for.
All the best to you and keep us posted! Feel free to write me with any questions if you wish to.
To Vibrant Health,
Orchid
Sounds like radiation or no, we both dealt with the complication of scarring. From my experience I think it's key to have the rectal side of the fistula tract handled by a specialist so the chances for reversal/success are best.
Especially since it's so close to the anal muscle ring, which mine was too, which if treated incorrectly often cannot recover or remain properly aligned.
In my case, I had many techniques attempted- three surgeries - to close what started as a very small fistula, and each surgery made it worse, ending up with my temporary ileostomy being now permanent.
From my experience I'd be inclined to go with the specialist, do it in one surgery and let the temp ileostomy happen so it can have the best chance to heal up properly.
Personally, I would request both the colorectal surgeon and a GYN both participate in the surgery. A team is better, and they commonly team up. The last surgery I had had a good team of three dr's, but did not include a colorectal specialist, and I believe that was a major mistake.
However I would first try the least invasive least risky fixby seeing if it might be appropriate to insert a Fistula Plug to first fix the fistula.
Dr's don't always think of it or offer it for some reason, but it has a decent success rate and it won't do any harm if it fails.
http://www.cookbiotech.com/productinfo.php?product=fistulaplug page=3
I think you're wise to consult the colorectal surgeon actually, and every specialist you get referred to, since now is the time to do information gathering.
What I would ask all of them:
(I write down my questions and take them with me)
I'd ask them what advantage/disadvantage they think their procedure might have over the other options you've been presented with.
I'd be sure to ask: how many of the specific surgery has the dr done and what has been the outcome/success rate?
I'd be sure to ask them to describe some of the worst-case results that could occur, even if they're not expecting them to occur.
It amazes me they don't tell you unless you ask.
I think the more questions you ask them the more you get an idea of if they're treating you and your situation carefully. It helps you evaluate them.
Though I'm sure you're anxious to be done with it-- take your time.
You're smart to not just trust.
My initial surgeon didn't represent the chances and facts of the surgery accurately at all, and gave me very unreasonable expectations. It felt like such a betrayal!
But I wanted to believe him. I wish now I'd taken more time and talked to more Dr's about various options.
I agree, many of them will do an operation for their own agenda.
And many do the best they can and are good and it still does not go as hoped for.
All the best to you and keep us posted! Feel free to write me with any questions if you wish to.
To Vibrant Health,
Orchid
Pinky
Jul 03, 2011 10:22 pm
Hi Pojo - If your insurance will allow it, I would recommend getting another opinion at Oregon Health and Science University hospital in Portland. My surgeon in San Diego, who is world-renowned, will be referring me to one of the surgeons there if and when I move up.
How to Manage Emotions with LeeAnne Hayden | Hollister
pojo
Jul 05, 2011 3:16 am
Thanks Orchid and Pinky, you both helped... FYI, the doctor I mentioned who wants to do the reconnect and the fistula at the same time is from OHSU. She's been a colorectal surgeon since the '70s. She has devised a plan even though I don't like the sound of it, with the ileo. She can build a team too because she has so many connections. I firmly believe that I would not be in this boat if my first surgeon had listened to my concerns about my colon and added a CR surgeon to the team, but ego or something, I don't know, left me maimed. My second surgeon, who is general and who did the emergency surgery and created my colostomy, was the one who referred me to the OHSU doc. He studied with her, so they have the same opinion. I still have the one more consult scheduled. I need to hear another opinion. I guess my biggest fear is that while not in the plan and frankly a horrific experience for me (not having Crohn's, etc.), I have a colostomy that works really well. The unknown of the ileo is scary, and I am even more terrified of getting stuck with it if something else goes wrong. It's the scar tissue and the diverticulosis that could throw a wrench in at any point. This next week, I am having a ginormous kidney stone removed, must do so before the ileo anyway, if that's the route I take. So wish me luck on that first. After what I've been through and headed towards, this seems easy, but we'll see...