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01-23-2015, 08:55 AM   #1
Elizajp
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Ileostomy for fistula

I've posted quite a bit lately about my fistula. I've had it for almost a year now- the dr said it was one of the worst she's ever seen. I have four setons. My GI symptoms are minimal but I'm in constant pain from the fistula almost all the time. I've been on SCD for forever it seems with no results, now I've moved to a semi elemental diet in addition to the SCD. I recently started Humira after developing antibodies to remicade and have seen no results so far. I saw my colorectal doctor and she said the fistula has slowly got the tiniest bit better but not great. I asked her if a temp ileo would help the pain and she said it really only helps for people who have diarrhea all the time. I go like twice a day, and then randomly will go like three times which of course will set the pain off so much worse. But now it's getting to where just going once a day causes tons of pain afterwards. I am so, so discouraged and tired and over this. I've got a toddler to take care of, I'm young, and I am tired of not being able to sit, stand, do anything without so much pain. I'm so tempted to just get an ileostomy and be done with it even if it's permanent. I just don't understand why my surgeon said it won't help or get rid of pain because from what I've researched it seems to do just thAt. I guess the question is how long do I keep waiting on something to work? I've been waiting forever and nothing works. I'm so tired and over it. Any suggestions?
01-23-2015, 09:14 AM   #2
nogutsnoglory
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Your surgeon is right because it's a very slow process for Yalung and even with a diversion the pain will still exist. Diversion is helpful when the abscess/fistula keeps grimy infected and never has a chance to heal and close up. Diversion along with a biologic is the best chance for a recovery. You could certainly get another opinion but don't rush to an ostomy if it won't help you.
01-23-2015, 09:39 AM   #3
Elizajp
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I'm just confused as to why the pain will still exist? If there is nothing passing through how can the fistula drain? Mine always drains more if I've gone to the bathroom a lot so it just seems like if I wasn't going to the bathroom it would get better.

And I know everyone says to make an ostomy your last resort- but how long do you wait? At some point you have to draw the line. I get that an ostomy is a big decision and life changing. But constant pain is also extremely life changing.
01-23-2015, 09:47 AM   #4
Elizajp
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And to clarify- you are talking about a temporary ileo right? A permanent one with removal and everything WOULD get rid of the pain right?
01-23-2015, 10:27 AM   #5
nogutsnoglory
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It's good you are asking the questions because you are right you are suffering too long. Of course it's not a surgery to jump into especially if it barely helps.

Yes, temporary so the abnormal structure will still be there but not drain as much. Do you only find pain when draining? The fistula in itself can be painful as an abnormal structure and connection or pressing on a nerve.

I think a temporary ileostomy may help you a bit because certainly it let's the area heal without fecal matter. I would consult another surgeon to see what options you may have in terms of fistula surgeries that don't involve an ostomy fIrst.
01-23-2015, 02:00 PM   #6
Elizajp
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The reason I feel that the pain is very much related to drainage is because going to the bathroom always makes it worse and it always drains a lot more after it has been hurting if that makes sense. It seems to go through cycles of inflammation, pain, and then drainage. Also, there have been random periods of time when it doesn't hurt that much and whenever it doesn't hurt much it also doesn't drain much.
01-23-2015, 02:01 PM   #7
Elizajp
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I had always thought they wouldn't do any other surgical procedures for fistulas if you had crohns? I have four setons. Is there another type of surgery they can do?
01-23-2015, 04:11 PM   #8
nogutsnoglory
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There are different fistula surgeries http://en.m.wikipedia.org/wiki/Fistula scroll to treatment. They involve glue, resection and skin grafting and corking the fistula.
01-23-2015, 05:29 PM   #9
Elizajp
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But can those procedures be performed on Crohns patients?
01-23-2015, 07:48 PM   #10
nogutsnoglory
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Yes.
01-24-2015, 12:46 AM   #11
Sailorluna
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I think its fair to add that in Crohns patients they have a much higher risk of failure dependent on your level of inflammation etc
__________________

Symptoms since 98
Resection and diagnosis June 2010
3 fistulas
abscess drained 6 times (so far...)
currently 2 seton in place 1 since 9/11 the other 4/14
1 strange small air pocket with an 8 cm sinus track leading into the great unknown
methotrexate weekly
folic acid
2 lomotil
2 Welchol
B12 injections (monthly)
Remicade

_____
Goodbye Humira
Goodbye Cimzia
Goodbye Azathiprine
01-24-2015, 08:26 AM   #12
nogutsnoglory
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Right, the disease being controlled is the biggest factor in healing a fistula.
01-24-2015, 06:25 PM   #13
Lilly1982
 
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Hey!
I feel the same way as you. I was diagnosed with a suprasphinteric fistula in August 2014 but have actually been living with it, misdiagnosed as a gynae problem, since 2009.
Last year I had three setons put in and removed as caused me too much pain. In December I underwent a fistulectomy and advancement flap procedure which failed on day 2, although at the time my surgeon didn't believe It. On day 8 whilst still in hospital I opened my bowels and then he believed me!
I was diagnosed with ibs at 19 and have a gastro appt in March. I have always believed I have Crohn's but am yet diagnosed. This is why I believe the surgery failed so quickly.
My crs always said if it as diagnosed with Crohn's that he would suggest a temp stoma prior to repair and I have been advised that I will require this if I go ahead with another attempt at repair.
I have been referred to a specialist hospital in London called st marks and have an apt in two weeks so I will let you know what they suggest. I also hope they will help with a diagnosis or not.
Much like you if another repair doesn't work then I think id rather a bag so I can get on with my life!
Sending positive thoughts x
02-01-2015, 11:30 PM   #14
dgg
 
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Hello Elizajp,
I know what you're going through. I'm also a mom with a toddler who developed a horrible complex fistula that was giving me constant pain. I had multiple setons placed, was on remicade, and nothing seemed to help. After a few years I couldn't take it anymore and a few doctors suggested trying an ileostomy. I know that this is often a last resort (and I was so scared when I first heard about this) but I finally went through with it and it has changed my life for the better. I am FINALLY out of pain and my ileostomy is 100 times better than living with my fistula. I was not having diarrhea issues (I actually usually had constipation!) and I found that the ileostomy did help with the pain, although not entirely.

I will say that in my case, I had a temp ileostomy placed and after having this I still had some drainage and some pain, but then 2 months later I had a follow-up surgery which was a flap procedure. About 6 weeks after the second surgery (the flap) the drainage stopped, like a dream come true, and I have been feeling great since then. About 1.5 years later I had an MRI which shows that everything is healed up so I'm deciding if I should try to reverse it. I'd suggest you see another doctor to get another opinion since I know that several doctors (who are very good, associated with Mt Sinai Hospital which is known for its expertise with IBD) who suggested the ileostomy route.

If you have an ileostomy, you might still have some stuff pass through you (since your colon still works) and every so often I have some mucous pass, which I was told is diversion colitis. It doesn't bother me much but just something to be aware of.
02-02-2015, 11:59 AM   #15
Elizajp
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@dgg thanks for sharing your story! I know the ileostomy is considered the last resort and that the doctors want to kind of "try everything first." But for how long? Like am I just going to go through every Biologic drugs until each one doesn't work or stops working and causes all these side effects? I haven't had diarrhea in months. Most days I iust go to the bathroom like a normal person. I feel like my fistula is just sensitive to absurdly anything and everything. I'm so tired of the pain.

You mentioned Mt Sinai. I'm interested in kind of going anywhere for second opinions/help. We are looking now at Johns Hopkins. Do you specifically recommend Mt Sinai? Why? I would like to talk to a doctor that doesn't have this every-Biologic-first approach.
02-02-2015, 11:59 AM   #16
Elizajp
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And when you say pass through you- like a lot of stuff? And do you have to use the bathroom and is it controllable? Or is it leakage like with the setons?
02-02-2015, 01:45 PM   #17
AndyL
 
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Hi all I've had crohns for 20 years now coming up, started when I was young, hopefully what I share can help some of you. All the symptoms of crohns I've had perineal abscesses and fistula about 10 years ago, it's hard to deal with the pain and emotional stress that comes with it, but I truly believe the right surgeon is the best step after 9 unsuccessful surgeries and experimenting with every drug I could to help. Found a semi-retired surgeon whom said that this would be the last of it after 5 years of suffering he did what others simply seemed to fail at, I had 3 abscess superficial and one fistula tract, by de-bridging tissue down further then any other surgeon would I believe made all the difference and it healed over with no reoccurrence which I'm grateful for and understand is not always a success. I honestly wish I would have found him earlier and pushed harder to figure out a solution living with it is not one and there are ways these professionals can aggressively help but I find that sometimes a sick patient under control is better for the system then a cured one, which Im sure you all know in some way. I now am suffering from a high out fistula that's draining from my abdomen below my belly button which is a connection from small bowel to skin that formed spontaneously, it's extremly painful fecal matter, gasses, pus, blood, coming out a pen hole size unnaturally would be for anyone. I figured I would learn from my past but when you're sick you don't think straight and it's been a year coming on the second year now, which is too long and has taken it's toll on me, what doesn't kill you makes you stronger is true. In this case Ive had a perk drain, then debridgin tissue carefully down to bowel, also exhausted the medicine side of it Humira once a week along with methotrexate, and standard flagyl and cipro, also light cortisteriod along with it. Need a resection done with possible stoma like always, I should have done it sooner and a lot of times Docotors are reluctant to send you off to surgery because some have success the medical route with closure and healing of the fistula tract, but I believe that was a hopeless one when its high out put chances are much slimer it may only slow down drainage. If you're draining above 200 ml daily I think chance are a resection is the best option at that point. I have surgery for next week it's been a long wait and I'm sure there's more to come. It's a daily battle and the way I see it is you can give in or fight on and be strong hope all of you have better days to come and I will be after this surgery trying a new drug for crohns that has promise of cure that was found accidentally with patients whom had cancer and the ones with underlying crohns had significant symptom changes quickly. The study proved that a huge percentage went into remission and no reoccurrence of the disease which has some promise from what I know so far it is some sort of bacteria, I will obviously be on here if there is any success I also find that medicines like this are kept in the dark and only available to those that are financially capable because not covered by any drug plans. All the best to everyone and stay strong
02-02-2015, 02:18 PM   #18
dgg
 
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Hi Eliza, Where are you located? I suggested Mt Sinai since it has a lot of expertise in Crohn's and you can find out about the IBD Center there by just doing a search for IBD Center Mt Sinai. I know there are other great hospitals focused on Crohns in other parts of the country (like Mayo, Cleveland, etc) but Mt Sinai was the closest. Some of the doctors there are involved in the latest procedures and medical treatment options and they have a ton of experience in this area. If you decide to go there I can give you the names of good GI doctors and colorectal surgeons.

I agree it's also important to find a surgeon who has good experience and someone who comes highly recommended since some fistulas are VERY tricky to treat, according to doctors I've met with. As for stuff that "passes through" now (since having my ileostomy), it's pretty infrequent, every 2-3 weeks and I don't have any drainage afterwards. It's mostly mucous and is from diversion colitis.

Also, have you tried eliminating goods from your diet? Before my ileostomy I found that getting rid of dairy helped somewhat.
02-02-2015, 02:40 PM   #19
Elizajp
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I live in Georgia- but really I will go anywhere.

and how do you get a second opinion from a CRS? I know you can see the setons from the outside- my CRS always checks from the outside. But to really see don't you need an exam under anesthesia? How do you do that when you're just getting a second opinion?

And yes I have tried all sorts of dietary things. Originally went gluten free years ago which made a huge difference. Now I'm SCD/paleo and I see no difference. I've also tried eliminating dairy and it made no difference either
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