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06-08-2016, 02:19 PM   #1531
christina57
I was just wondering if any one knew the answer to this question.Why do they put setons in you then you have to wait then you have another surgery? Why can't they just do the surgery with out the setons.Thank you For Your Ears)
06-08-2016, 04:47 PM   #1532
Ann Morgan
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Veronique : I agree with staying informed and taking action. I have learned a lot here on this forum than anywhere else. I had an anal fistulectomy in 1992. I knew nothing at that time. Little by little over the years I have learned more. An anal fistulectomy, an upper GI, a lower GI, a Flexible Sigmoidoscopy, a rectal abscess and yellow-watery diarrhea I finally had a diagnosis of UC in 2006.
I agree, do not wait, become informed and be proactive.
06-09-2016, 09:18 AM   #1533
MeLee38
 
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I was just wondering if any one knew the answer to this question.Why do they put setons in you then you have to wait then you have another surgery? Why can't they just do the surgery with out the setons.Thank you For Your Ears)
My understanding is they can;t do surgery when there is an active infection going on. The seton keeps the fistula tract open so the infection can drain and heal, then they perform the surgery. Hope this helps.
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Surgeries/History:
- Bartholin Cysts, Acid Reflux, Hemoirrhoids&Bowel issues, skin rashes, fatigue, joint pain
- Anal Abscess Removed (cut through sphincter muscle) Dec 2014
- Formation of Recto-Vaginal Fistula Jan2015
- Hemorroidectomy & Advanced Flap Repair Dec 2015
- Colonoscopy May2016
- Removal of peri-anal cyst Sept 2016
- MRI July 2017
- Anal abscess Aug 2017
06-09-2016, 12:56 PM   #1534
christina57
Hi Melee,
Thank you for the answer maybe they think every one has an infection with the fistulars and they put the seton in first to make sure the infection is not there and then they do surgery.This will be my third surgery this year for the same two fistulas I pray they will be fixed once and for all.Have a great day...Christina
06-10-2016, 08:30 PM   #1535
mellie
 
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I am grateful to have had three months without my fistulas....having the relief from a dose of high strength antibiotics. I got cocky and actually questioned if I even had Crohn's! Funny how Crohn's likes to knock you back down to earth when you get cocky . Yesterday I met with my GI and was discussing how wonderful I felt, we discussed rye trickiness of this disease and scheduled a follow up for a year from now and a continuation of Humira. This morning I woke up, got in the shower and (sorry for the graphic) felt the familiar knots of pain as I was cleaning myself. I literally stood in the shower and cried. They are not opened yet and that makes them the most painful and now I'm in bed on my stomach for relief. They came back literally the day after I had my appointment with my GI!!! Like, "HA!" We'll show you! I'm also having more typical Crohn's symptoms today...running to the bathroom so I've been afraid to eat. Blech!
06-19-2016, 11:34 AM   #1536
Starnett
 
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Hi all,

Having a frustrating weekend with my fistula. I mentioned on another post that my consultant suspects I may have Crohn's and I'm currently awaiting a colonoscopy and upper GI series to see if this is the case. I'm also still awaiting MRI results for the fistula. I've had lots of drainage and bleeding this weekend though and some pain too. Is it normal to see blood and occasional clotted looking blood with a fistula?

Andy
06-19-2016, 11:42 AM   #1537
ronroush7
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I think blood in general is normal during a fistula. Sending support.

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06-19-2016, 12:43 PM   #1538
christina57
Hi Starnett,
Sorry your having a frustrating weekend with the fistulars they can be a real pain.I get blood and a lot of discharge every day I have the 2 setons on the two fistulars so no infections.I hope they find out whats wrong with you they did a cat scam,stool tests and blood work on me no answer good luck.
06-19-2016, 12:59 PM   #1539
Starnett
 
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Thanks for your replies.

I'm new to this stuff so I was getting a bit worried when I was seeing more blood.

I really hope I get some answers too Christina. I'm just so fed up with it all and I'm feeling pretty worn out at the minute. Not much energy for anything but going to work. Things could be worse so I try not to dwell too much on it.

Sorry to hear you didn't get any answers from your tests. What did they suggest as they found nothing from those tests. I'm not sure if I'm more worried about the finding something, or not finding something.
06-19-2016, 05:36 PM   #1540
christina57
Hi Starnett,
I brought my blood results in to my colorectal surgeon I never heard back from the GI office they were not good not good at all.I since just keep on living as best as I can and will have a third surgery in September hopefully to get rid of the fistulars forever.From what I have heard its not always easy to find Crohn's I think they do a biopsy when you have your colonoscopy and look for things like inflammation.Hugss Christina
06-19-2016, 07:38 PM   #1541
bumprump
 
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Well my second surgery turned into a Fistulotomy, instead of reducing the size of the seton. Let me say it is no walk in the park... I now have a crater 2 inches long an inch wide and almost an inch deep. The last week has been hell... has anyone else had a fistulotomy? No one can give me answer when I ask how long it takes to heal. The surgeon and nurses all say it differs from one person to another. Today was the first day that I didn't take any morphine until suppertime... So I guess it's getting better. Any input would help.
06-19-2016, 08:04 PM   #1542
christina57
Hi Bump,
I am sorry your having a lot of pain.I am sure it does vary person to person for healing.I have to have a bip list or a advance flap surgery in September keep in touch let us know how you are doing....Christina
06-19-2016, 08:06 PM   #1543
Ann Morgan
Senior Member
Bumprump: I had an anal fistulectomy in 1992. It was outpatient surgery. After I got home I decided to look at the surgery area with a mirror and I was horrified by what I saw. I think looking at it was a bad idea. I wish I could erase that picture from my mind.

I did the sitz baths daily and follow-ups with my doctor. I do not recall being prescribed pain medication. I cannot remember how many days I missed from my job or how long before it completely healed up. I wish you a speedy recovery and hope you feel better soon.
06-27-2016, 03:43 PM   #1544
MJD
 
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Ok, new to this group although I've had Crohn's for 25 yrs and a permanent Ileostomy for 9 yrs. Most of the time, I'm ok. But starting in March, I developed sharp abdominal pains and fevers, but no nausea/vomiting/ diarrhea. Threw me for a loop since that's how Crohn's usually appears. Saw my pcp, an urgent care dr, and my gastro over the next couple mths until on May 20, a CT scan showed several abdominal abscesses. Hospitalized with IV antibiotics then dc'd home on oral ones. Lasted a week, pain came back, repeat CT done showed more abscesses & a "contained perforated small intestine". Back in hospital for 7 days on different antibiotics, sent home on PICC line with home antibiotic infusions every 6 hrs. My question (finally, I know!)--it's been 11 days since I've been home, and I only have 5 days left of my IV antibiotics. I still feel drained, tender, fatigued, lethargic...when am I supposed to feel better? I thought I had a decent understanding of my Crohn's & this has really shaken me up.
06-27-2016, 03:58 PM   #1545
MeLee38
 
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Unfortunately with Abscesses they differ in each individual. Some people finish the antibiotics, they heal and they are fine. Others like myself got no relief from antibiotics. I had surgery to drain the abscess (they had to cut through my sphincter muscle so was risk of incontinence, but luckily I healed fine that way). However the abscess filled back up and I developed a fistula from the abscess out through my skin. And have been dealing with that now for 18 months. Sorry there is no definite answer, but hope everything works out for you and you feel relief soon. My abscess kept flaring up and draining through the fistula. I am now waiting on surgery to have a seton placed. I already had an advanced flap repair which didn't fix it. And have done 3 courses of Cipro and Flagyl which also did nothing.
06-27-2016, 03:58 PM   #1546
ronroush7
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Wishing you the best


06-27-2016, 04:30 PM   #1547
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Sorry to hear of your problems with the abscesses MJD. It's sound like you've had a horrid time recently. I too can't say how long you will take to feel better. All I can say is you are not alone and I am sending my support.

I've not had as many problems as you so far but I have a recurring fistula / abscess which is a huge pain to deal with, both physically and mentally. It's also starting to make me feel quite drained most days. Having an active job in a school helps to keep my focused and takes my mind off things but that in itself can be hard because of my low energy.

Hope you start to feel better soon. Are you seeing your specialist before your antibiotics run out? Perhaps they may extend the course if they don't think you've improved enough on the current course?

Andy
06-30-2016, 10:01 PM   #1548
dave13
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I am approaching two years with draining setons. I do feel the fistulotomy was/is worth it,in my opinion. I went misdiagnosed for years and suffered the pain of abscesses and the damage to my rectum. In my case,surgery stopped the damage being done. You have to be careful the fistula does not 'burrow' elsewhere.
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07-05-2016, 02:58 PM   #1549
MJD
 
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Thanks so much for sharing your experiences. I am on round two of IV antibiotics, still off work, and am having a repeat CT tomorrow to get an update on what's going on inside. I still feel tired A LOT, but the pain is better. If there is no improvement, then surgery will be an option. Hope you all are doing ok...hang in there! Again, thanks for listening and sharing. Each Crohn's case is different, but at least in sharing, we aren't so alone!
07-09-2016, 11:35 AM   #1550
Starnett
 
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Well I've received my MRI report back and it says it's a simple fistula. Got to have a follow up with my consultant when I've finished having tests to rule Crohns in or out then I will discuss surgical options.

On another note, I had my colonoscopy today too. The endoscopist told me right away that everything was clear, even several inches into the small bowel. He said the bowel looks very healthy. I'm due to have a small bowel barium follow through with X-rays next month and I'm just wondering if this is necessary? What chance is there that this could be Crohns now. Can anyone enlighten me as to what symptoms you may expect with Crohns in the small bowel?

The doctors today suggested my issues could be triggered by food, despite cutting out gluten and having a period of relief (about 6months).

Not sure what to do now really. My GI consultant said if all the test came back clear he would refer me to a dietician to look at food related issues.

Andy
07-09-2016, 11:56 AM   #1551
ronroush7
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Well I've received my MRI report back and it says it's a simple fistula. Got to have a follow up with my consultant when I've finished having tests to rule Crohns in or out then I will discuss surgical options.

On another note, I had my colonoscopy today too. The endoscopist told me right away that everything was clear, even several inches into the small bowel. He said the bowel looks very healthy. I'm due to have a small bowel barium follow through with X-rays next month and I'm just wondering if this is necessary? What chance is there that this could be Crohns now. Can anyone enlighten me as to what symptoms you may expect with Crohns in the small bowel?

The doctors today suggested my issues could be triggered by food, despite cutting out gluten and having a period of relief (about 6months).

Not sure what to do now really. My GI consultant said if all the test came back clear he would refer me to a dietician to look at food related issues.

Andy
Most of my Crohns is in the small intestine and I can go to the bathroom a lot.

07-09-2016, 06:25 PM   #1552
Starnett
 
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I think I'd better get that last test done to be sure then.
Thanks, I'll let you know how it goes.
Andy
07-09-2016, 06:34 PM   #1553
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Last July I experienced some excrutiating pain inside my anus. I'd had hemmorhoids before, but this was a 100 times more painful. After googling around, I figured out it was an abscess. Internal hemmorrhoids don't cause such pain as there are no pain receptors in that area of the anus.
I had to go to the ER three times until they listened to me when I said it wasn't hemmorrhoids, that it had to be an abscess.
Mine was located internally, between the rectum and my vagina, directly under the perineum.
Finally I was admitted for surgery where they opened and drained the abscess. They left it open (internally) to clean itself out and heal (no idea how they thought it would ever get CLEAN in that spot, being constantly bombarded with feces).
In December, it still hadn't healed and was still oozing puss, so they sent me for an colonoscopy to check if I had Crohn's. They saw no signs.

Finally in March this year, my surgeon decided it was time to close it up. I went in for surgery and got a week's worth of anti biotics.
Almost immediately after my AB course finished, I experienced excrutiating pain down there, and it spread to my right buttock. I went to the hospital on Good Friday, and was sent home with more AB and painkillers.
The next day I was getting even worse and went to the ER. While I was lying in the ER waiting for my turn at a CT, I needed to pass some gas, but instead I got this piercing stinging pain like it was trying to go into my buttock instead of the usual way. The CT showed my buttock had a pool of puss and AIR inside it, guess it DID go there.
I was sent in for another surgery. A fistula had formed. They put in a seton, kept me overnight with AB via IV and then discharged me on Easter Day.
I went back 2 days later, I was still in a LOT of pain. I was examined under GA, but nothing was done. They were going to discharge me again, but I put my foot down and was allowed to stay one night, getting morphine injections regularly - I must say it was the freakiest night I ever experienced (half asleep hallucinations etc). I was then discharged with a week long course of ABs.
9 days later I had a checkup with my surgeon. She felt everything was going good and gave me more ABs. 12 days later I got worse again, this time further into my right buttock. I went in and my surgeon cut a hole in my buttock under local anaesthesia. A lot came out. A LOT.
She ordered an MRI. I live in a small country and there is a 3 week waiting list, unless it's life or death.
2 weeks later I feel pain on the left side. I go in, but the doc that saw me didn't want to do anything as I had an appointment the next day with my surgeon. He gave me ABs to last 'till the next day.
I went to see my surgeon for my appointment and she sees it's spread to the left side and forward on each side of my vagina. She doesn't want to do anything until she has a clear image of the entire fistula system. This was on a Wednesday. I had my MRI appointment a week later, but she decided to make a call and have it moved up for Friday.
On Wednesday the next week I was back for surgery. She added another seton, created an opening on my left labia majora and inserted a drain, and also inserted a drain in the incision on my right buttock. I'm discharged the same day, as usual.
2 days later I go in again, the drain next to my vagina caused me a lot of pain. Turned out it fell out almost immediately after the surgery and was hanging by, and pulling on, the suture keeping it in place. Surgeon removed it. 5 days later she also removes the drain from the buttock.
Now, for 2 months I'd been taking Tramadol hcl for pain. I lowered my dose a bit, and didn't know it at the time, but I was experiencing some withdrawal symptoms. I felt like I was experiencing arrhythmyia, shaking etc, so I went to the cardiac ER. They couldn't find anything so they sent me home.
6 days later I go back for a checkup with my surgeon. She schedules another surgery. She feels my fistula isn't draining enough.
On May 26, I come in for the surgery. 7 hours later I wake up in the ICU, intubated on a ventilator.
They'd had some problems getting me properly anaesthetized and needed to give me more Propofol than usual. I went into a bronchospasm and needed more air pressure and oxygen to keep me breathing. They did the sugery, then kept me under for 5 more hours so my body could recuperate. I was kept in the ICU for 24 hours for observation, and a second night in a general ward.
I now had 3 setons and an open, draining wound on my buttock.
I have ups and downs. I take paracetamol + codein for pain and all openings are draining quite a bit. No further surgery has been scheduled yet, probably won't happen for another month or two.
One thing I've noticed is I seem to be passing a lot of gas, and I mean A LOT. About every 5-10 minutes. Most of the time it goes either through the opening in my buttock or along the seton on my labia.
I'm getting tired and frusterated. I work in an office and can't sit all day long while I'm like this. It's really affecting my mental health, and I was severely depressed before this whole thing, needing the maximum allowed dose of Prozac.
07-09-2016, 06:43 PM   #1554
ronroush7
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I am wondering if they have to drain it again if maybe they should keep you in the hospital longer and give you antibiotics by IV? I am not a doctor so ask your doctor.

07-10-2016, 04:55 AM   #1555
dudah84
 
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I am wondering if they have to drain it again if maybe they should keep you in the hospital longer and give you antibiotics by IV? I am not a doctor so ask your doctor.
I've asked repeatedly. The problem is the health care system in my country. Lack of beds, staff and funds mean you really don't get to lie in the hospital unless you're old and unable to care for yourself or have a life threatening health issue. The hospitals are full of old people that are waiting for a spot in a nursing home and have nowhere else to go.
My doc says ABs really won't help anything as the bloodstream can't reach the infected area which I find weird 'cause there is plenty of blood and that it only helps to prevent the infection getting worse, which it isn't at the moment.
Throughout this whole ordeal, over 6 operations with repeated complications, I've always been sent home the same day, save the broncospasm incident. Is this normal practice everywhere else? I've seriously considered seeking medical attention outside the country!
07-10-2016, 05:50 AM   #1556
ronroush7
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Over 20 years ago, I had an abscess that bled for three months. I went to the hospital and had it drained. They sent me home the next day even though my wife begged them not to. A week and a half later, the abscess was acting up again. This time, they kept me for a week and used intravenous antibiotics because the strength of the medicine they gave me would have been too strong by mouth. I hope they can get you under control soon.

07-10-2016, 12:33 PM   #1557
MeLee38
 
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I've asked repeatedly. The problem is the health care system in my country. Lack of beds, staff and funds mean you really don't get to lie in the hospital unless you're old and unable to care for yourself or have a life threatening health issue. The hospitals are full of old people that are waiting for a spot in a nursing home and have nowhere else to go.
My doc says ABs really won't help anything as the bloodstream can't reach the infected area which I find weird 'cause there is plenty of blood and that it only helps to prevent the infection getting worse, which it isn't at the moment.
Throughout this whole ordeal, over 6 operations with repeated complications, I've always been sent home the same day, save the broncospasm incident. Is this normal practice everywhere else? I've seriously considered seeking medical attention outside the country!
I am so sorry you are going through this. I too had an abscess, which led to a recto-vaginal fistula, lots of anti-biotics, 3 surgeries and am now waiting on a another surgery as a second fistula has popped up. I live in Canada where healthcare is free, but free doesn't equal great...I had in hospital stays for 2-3 days after every surgery. However, the wait times here are ridiculous, this started for me in Dec 2014. Here you go for a test, wait 3-6 months for results of the test, then wait another 6 months or more for the surgery you need. So my last test was in May, I am scheduled to get the results in September. I signed waivers and paperwork for the surgery I need in March, and am still waiting for the surgery date!!
07-10-2016, 01:00 PM   #1558
ronroush7
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I am so sorry you are going through this. I too had an abscess, which led to a recto-vaginal fistula, lots of anti-biotics, 3 surgeries and am now waiting on a another surgery as a second fistula has popped up. I live in Canada where healthcare is free, but free doesn't equal great...I had in hospital stays for 2-3 days after every surgery. However, the wait times here are ridiculous, this started for me in Dec 2014. Here you go for a test, wait 3-6 months for results of the test, then wait another 6 months or more for the surgery you need. So my last test was in May, I am scheduled to get the results in September. I signed waivers and paperwork for the surgery I need in March, and am still waiting for the surgery date!!
I am sorry


07-10-2016, 03:49 PM   #1559
dudah84
 
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I'm bleeding a lot this weekend, mostly through the wound on my buttock (it's deep, over 2 inhes straight in, then a long fistula tunnel to my anus).
I have a large absorbant pad dressing on the wound that I need to replace once a day. Thankfully my fiance is willing to help. Just now I stained our couch with blood as I was bleeding so much, the pad couldn't keep up.
07-10-2016, 04:12 PM   #1560
ronroush7
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I'm bleeding a lot this weekend, mostly through the wound on my buttock (it's deep, over 2 inhes straight in, then a long fistula tunnel to my anus).
I have a large absorbant pad dressing on the wound that I need to replace once a day. Thankfully my fiance is willing to help. Just now I stained our couch with blood as I was bleeding so much, the pad couldn't keep up.
Contact your doctor tomorrow and try to get in to see him as soon as possible.

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