Flap advancement - how can you tell if it fails? - Fistula Support - IBD Support Group Forums - IBDsupport.org

Advertisement

Jump to content


Photo

Flap advancement - how can you tell if it fails?

flap advancement

  • Please log in to reply
36 replies to this topic

#1 healthquest

healthquest

    New Member

  • Members
  • Pip
  • 14 posts
  • Country:Canada

Posted 13 January 2014 - 06:00 PM

Advertisement

Hi there, can anyone offer any information on how you can tell if flap advancement has worked or has failed? I am exactly two weeks post op and still getting colour greenish brown tinged discharges but not with the same odor as pre op. Unfortunately after one week I passed four stitches and a skin graft so I don't know if that totally guarantees this has failed completely or if there is still a chance it will heal. In particular, I am interested in anyone's experience with discharges post op and how many weeks this continues. The surgeon's office basically said that they cannot tell until about 6 weeks afterwards. I am off work trying to take it easy but getting pretty concerned that I have gone through a whole lot of pain and time off work only to be right back to square one. Any help most appreciated. Thanks.  




Advertisement

#2 DCCrohns

DCCrohns

    New Member

  • Members
  • Pip
  • 1 posts
  • Country:United States

Posted 17 January 2014 - 12:49 AM

I had advancement flap surgery a month ago and am still experiencing quite a bit of discharge - from feces to blood-tinged liquid. Like you, I lost a few stitches early on and was concerned. I do have the issue of fluid, etc. building up down there after most BMs and then causing severe pain/pressure that lasts at least four hours after.

 

I have seen my surgeon (I actually had my CRS call in a plastic surgeon who has been the primary on this surgery) twice since and he has been encouraging and gave me a similar timeline of not really bring able to gauge success until 6-8 weeks out.

 

I hear your frustration, as I felt more in control of the drainage before surgery and I was not in such pain (still on Percocet to help me get through). I hope that it will all sort itself out in the end but I remain cautious.

 

Best of luck to you!



#3 healthquest

healthquest

    New Member

  • Members
  • Pip
  • 14 posts
  • Country:Canada

Posted 17 January 2014 - 02:12 PM

Thanks DCChrohns! 

 

The update for me is that the discharge has been decreasing all week so my optimism is increasing. Had a 12 hour period with nearly zero discharge yesterday, wow first time in about 7 months. I am going to summarize what I think has helped me so far:

 

SURGEON:

If you are contemplating a Flap Advancement surgery,find an expert who specializes in colorectal procedures. They must be involved. 

 

PAIN AND PAIN CONTROL:

There is no sugar coating the fact that there is pain after this surgery, but it gets better. You need good pain meds. I had 37.5 mg of Tramadol / 325 Acetaminophen. I took the max dose of 8 per day which worked to take the edge off but did cause some nausea. Note: I kept track of when I took these with a little notebook to make sure I had good coverage for pain control throughout the day and not over or under doing it. For the nausea, the physician suggested I take a gravol 1/2 hour before Tramadol and that helped. In addition, a very important element is taking a stool softener. After two weeks I weaned off the Tramadol taking 6, 4 and finally 2 on the last day.

 

*DIET AND SUPPLEMENTS:

I have modified my diet to eliminate pretty much anything packaged and try to eat really "clean". Fruits, vegetables, nuts, seeds and only organic protein limiting dairy to very occasional. Definitely no wheat. I have come to realize that food sensitivities are likely the root cause of my whole nightmare.. ie abscess leading to fistula. I don't have Crohns but it took two colonoscopies in six months before they would believe that, as it was SO suspicious. My life before was instant diarrhea after eating, crazy bloating, muscle aches and pains like fibromyalgia and sometimes constipation. Physicians could not figure out what was wrong with me. Eating this new way has eliminated all those symptoms and I feel a whole lot better. I actually have normal soft, formed stools for the first time that I can remember in a very long time. (Sorry for the "too much info"). Despite efforts to drink lots of water, juice etc to stay hydrated, my chiropractor suggested I was still dehydrated and to combat that, I add an electrolyte supplement. I opted for a capsule form instead of the one you mix with water (less additives). I can't say the commercial name but I have added a shake for breakfast that is superfood formula and has 6 gm of fiber. I have a glass of water with a tsp of psyllium husk plus, plus a supplement to support intestinal health with glutamine. Lastly I am getting B Vit injections. I have also now eliminated the stool softener, as supplement/diet regime seems to be working to keep me regular.

 

BOWEL MOVEMENTS:

I cannot emphasize how important it was for me to make sure that I had normal, soft BM (2 to 3 times per day). Note this is the hardest part of the postoperative period because it is painful but when I felt the urge ...I would bite the bullet and go right away. Putting this off just results in larger and harder BM in a few hours and a considerably worse experience. Trust me, the one time it happened was when I passed the stitches.  My routine for BM....they gave me a squirt bottle for day one post op instead of sitz bath. I have continued to fill this bottle with warm water and squirt on the area before, during and after the BM which made the pain MUCH, MUCH more bearable. Now I just use it afterwards to clean the area before wiping, and then I always have a warm sitz bath with epsom salts ready to go and I jump in that after every BM for 15 min or so. Then I shower off. My open wound was gaping, round and one inch in circumference so I wanted to make sure that was clean at all times. Probably averaged about 5 sitz baths a day with the epsoms salts.  My surgeon did not give me a seton nor was was I on antibiotics. At this point I have a small amount of post BM feces that leaks but this is very minor and manageable with wipe.   

 

REST:

I thought I was only going to need to be off a week but then found out it was 6 weeks minimum. On one of the threads in another forum (and I think I have read them all)  someone said they basically did nothing or as little as possible for 6 weeks. I have followed that exact approach and it has been hard but I have forced myself to rest, rest, rest. A couple times a day I leave the area uncovered so air can get at it for healing and I think this is really important too. 

 

My family physician said after a surgery like this, you are in the hands of Mother Nature, Father Time and God. Good luck and quick healing to DCCrohns and anyone else suffering who is reading this, contemplating Advanced Flap surgery or recovering from it! 



#4 healthquest

healthquest

    New Member

  • Members
  • Pip
  • 14 posts
  • Country:Canada

Posted 23 January 2014 - 11:27 PM

At this stage, about 3 1/2 weeks post surgery, I am feeling completely confident that the advancement flap procedure has actually worked, despite my initial concern. I do still have some drainage however it has reduced to about 1/5 of what it was before the surgery and does not have a pungent odour. One nice relief it that it does not drain at night now whatsoever. This previously would wake me up as I was uncomfortable. Pads work when you have gravity in play but otherwise involved an elaborate bunched up wad of tissue.   My physician took a culture and the report came back negative... no bacteria present! If the fistula was still connected to bowel I would expect there would have been GI bacterial. I also got a copy of the OR report and discovered infection extended straight back to my tail-bone. 

 

If you read my first post about passing the stitches, I forgot to mention there was also a small filter paper disc about 1/2 cm attached... which I suspect was embedded with antibiotic to counter the infection directly at the site instead of getting IV or oral antibiotics through the blood stream. That may have been why I was not on antibiotics.  I am sure there are lots of little details physicians do not tell patients but I work in a hospital laboratory so I am curious about this. I believe the drainage occurs from normal wound healing but resembles the fistula drainage so much that I spent an excessive amount of time worrying about this failing and having to go through it all again. 

 

I have continued to be careful to rest.... A LOT. Although I am very busy I think 4 -6 weeks of lying low is a small investment in one's health. I have purchased a Book/Cookbook on the topic of meals that heal inflammation. This whole book talks ALL about the gut and it is certainly spot on for what I have gone through with my irritable bowel issues. I will wrap up this experience with a final post after I see the surgeon for my post op appt Feb 5.  



#5 PITA1

PITA1

    New Member

  • Members
  • Pip
  • 6 posts
  • Country:United States

Posted 31 January 2014 - 12:14 PM

Hi healthquest,

 

   I may need to go through a similiar procedure as I just has a LIFT in December that already failed.

 

   - Regardining rest, did you stay off your feet or was walking OK? I still need to work, though I am in an office so I can sit most of the day. Not sure if I should purchase a donut pillow to reduce pressure?

 

   - How bad was the pain and how long did it last? For the LIFT, I was in a lot of pain for 6 weeks and it's just starting to get better now (8 weeks). I really question whether I want to do this again since it hurt quite a bit.

 

    - Any issues or concerns with incontinence? I have read that 25% may have an issue and I am really concerned if I should try something less invasive like a plug if the success rates are similiar. My CRS didn't seem concerned.

 

  Thanks and I hope you are feeling better.



#6 healthquest

healthquest

    New Member

  • Members
  • Pip
  • 14 posts
  • Country:Canada

Posted 05 February 2014 - 10:46 PM

Hi Pita1

 

-I am very lucky that I was able to take time off work returning tomorrow after 5 weeks. I tried to be as horizontal as possible for at least the first three weeks or so, standing was OK but sitting was truthfully uncomfortable. I would try to get as much time off as you can but I suspect a donut pillow would help if you have not choice but to sit. If you have to work maybe try to rest as much as you can when not at work. I basically shut down my social life for four weeks. Then I resumed light activity including gentle hot yoga for the last week. 

 

-the pain was only really bad for 5-6 days when having a BM or sitting. Then it started to ease off. After a couple of weeks I was off the painkillers and managed OK. 

 

-last week I was still having some incontinence, particularly after a BM, this week much, much improved.  

 

Had my post op appointment today. The CRS described the surgery like this: he cleaned out a rather large infection at fistula site.  repaired a sizeable fissure that was likely contributory to the problem, sewed together the opening on the rectum/colon? end of things and then created the flap which was also stitched. So what that means is that there are basically TWO surgically stitched up barriers in this procedure.  I lost the flap after 4 days from a straining BM and he said that put me at risk of failure he said but luckily the second closure "held". His stats are...15-20% fail, higher in Crohns patients.  According to this fellow, one of the key aspects is to make sure that the wound is large enough at the external end and that it is open and allowed to drain. The reason for this is that there is still residual drainage and that is normal and expected. If the wound is too small and closes before the drainage slows down and stops then the drainage just creates pressure and the scar tissue or stitches or BOTH blow out causing the failure. So to anyone reading this and possibly worried about early post op drainage...STOP WORRYING this is a good thing. His analogy is that it is race...the granulated scar tissue must reach the end of the wound before the wound it closes. He did mention that all must be done without damaging the sphincter muscle, another big surgical objective. 

 

Re how it has healed....literally his jaw dropped and said that my healing has been nothing short of miraculous. He had this amazed look and said the the skin has even regrown already in five weeks, his words were..."Wow I can't believe this" (it was ONE big open wound). Looks like all of my obsessive efforts have paid off. I am not into the new age stuff but I really think the relaxation, meditation and finally yoga were key for me, mind over matter. All the best to you, let us know how it goes!



#7 Sorebumm

Sorebumm

    New Member

  • Members
  • Pip
  • 1 posts
  • Country:United States

Posted 07 February 2014 - 02:02 PM

[font="arial, sans-serif;"][color=rgb(34,34,34);]Hi All,[/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]First off - I don’t have CD. I know that makes a difference in treatment. [/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]Second, I nearly cried when I read these posts because I am going through the exact same thing and it's not the type of thing you can really talk about with people who aren't going through it. It's amazing how many people like us there are out there struggling with this yet before this happened to me I had never heard of a fistula or knew what one was. I have read many posts but this is the first time I am sharing. I hope that if nothing else, my experience will help someone in some small way as others have helped me deal with this through their posts. [/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]Pita1 - I know exactly how you feel! I also had a LIFT procedure that recently failed and my doctor has now recommended we do the Advancement Flap surgery. I am scared shitless after going through the LIFT because that one was pretty rough and the AF surgery sounds more complicated, invasive and, like healthquest mentions, you end up with stitches in the lining your rectum. That sounds scary like I could accidentally mess it up or it might get infected or something. [/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]healthquest - I think I am reading and following the same book (BTVC)? When you said, "I have come to realize that food sensitivities are likely the root cause of my whole nightmare." BOY YOU SAID IT! I have also completely changed my way of eating during the course of this thing and it has helped me tremendously. Also, I was very grateful to read your post about your experience with the AF surgery and I think you said many things that I really needed to hear RIGHT NOW (or have reinforced) in order to get through this hellish thing. So thank you, thank you, thank you for sharing all of that![/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]Here's my story...[/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]September of 2012, on my 40th birthdayPosted Image , I went to see my first CRS. I had a lump near my anus and it was quite tender. I also knew why it was there and was pretty worried. A couple of weeks earlier, I was on the loo straining again. I didn't pay attention to just how much I'd been straining lately. All my life I ate what I wanted even if it got me a stomach ache (was pretty much a junk food junkie) and never gave BM's much thought. Until this day. I was constipated again and thinking I was gonna push hard enough to move it out when suddenly I found myself in the most incredible painPosted Image I felt the tear that caused this. My god if only I knew then what I know now Posted Image. So after that I noticed this "sore spot" developing and thought maybe I had pulled a muscle. But as it got worse I realized I had to go to a proctologist (for the first time in my life) and reluctantly went. The first quack I saw examined me and found no lump. I said, what do you mean, you can't feel the lump, my gynecologist found it easily enough and referred me here?" He said, "Here’s a script for an MRI but I really think it’s a sore muscle so here's some cream too. Take some baths and relax." I really wanted to believe him, that none of this was very serious and especialy that I would never have to go and see a proctologist again (ha yeah right!!). So I took the baths and the cream and didn’t go and get the MRI until a month later when I was in so much pain I could barely walk. The abscess had then grown to the size of a fist. The next CRS I saw was the real deal. He lanced the abscess, told me I had a fistula and said it may heal but I may need surgery. When it hadn't healed three months later, the surgery seemed the only resolution. He told me that it could be a fistulotomy but if it ran too deep, he'd have to put in a seton because of the risk of incontinence. I woke up with a seton Posted Image . That was May of 2013. Then in July of 2013 I had the LIFT surgery. During these months, I read everything I could about the condition and about the Specific Carbohydrate Diet. It seemed to be the only consistent thing - no matter what forum I was reading - that helps people heal from this. I realized that even though I did not have crohns, it was probably only a matter of time before I might get it because I was not eating a healthy diet and I had lots of stomach aches and my constipation had become a full time battle, despite how much water I drank or how much I exercised. I realized that I had better change my ways or I was never going to beat this. So I did. It was hard to give up gluten, coffee, wine, soda and chocolate but the absence of these things in my diet has indeed helped. Also, I began cooking more and more so I could really focus on sticking to the diet 100% and have meals to turn to (good planning is golden). I was surprised at how many delicious things there are to eat that have no sugar or wheat or dairy! The diet has actually become somewhat of a new adventure and I experiment with different veggies and seasonings, almond flour, etc. I actually just purchased a yogurt maker and have been making my own yogurt which is said to be very beneficial and I'm feeling a little proud that I can say I make my own fresh yogurt! So after the LIFT, things were going really well. My surgeon was very happy with himself and I was healing "faster than anyone else he's done this surgery on." I was off gauze finally for the first time in a year. I thought it was all over. I started slipping on my diet. Coffee, chocolate, wine, sugar, bread - yummy but it’s also the devil! Then one night a couple of months after the surgery I felt a new lump down there in the same exact spot as before. I think I knew right then and there the surgery had failed. I went to see the doc a few times after that and he kept telling me that it just may take a very long time to heal and that the lump would settle down. But then came discharge and blood and finally we did a sonogram in December which revealed another internal opening. He said this time it looks superficial and we can just do a fistulotomy. So on 12/31/13 I went in for the fistulotomy. I woke up with a seton AGAIN Posted Image. Doc came to the bed as I sobbed and I said "I thought you said the sonogram showed it wasn’t that deep?" and he said "I'm sorry but I can't really tell for sure until I get in there and I have to do what is best for the patient. I could not keep cutting." So here I am facing the AF surgery which he says we can do in March. Since we discussed it, I have been reading about it and really kind of freeking out. I don’t' know why my LIFT surgery failed but I of course want to blame myself. I did have one strenuous BM right after the surgery (causing it to bleed) and I told the doc about it but he said all looked fine. Maybe I blew it right there tho. The only thing that gives me some hope is: 1) I am so on top of my diet now that I have not strained for a long time and going is easy and frequent enough. 2) I got SO MUCH better after the LIFT surgery that I feel I'm already heading into this thing someone better than before. There is no pain or discomfort with the new seton, maybe because its rubber and more comfortable than the last one but I forget it’s there most of the time, it even feels like it’s not that deep into the muscle like the first seton was (which always ached and bled and was a piece of surgical thread.) [/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]Concerns: [/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]- It's going to hurt and I'm gonna want that Percocet they're going to give me (still have plenty from the last 2 times) but it makes me constipated. DCCrohns up there says it’s a lot of pain! It sounds much worse that the LIFT[/color][/font]

[font="arial, sans-serif;"][color=rgb(34,34,34);]- I FINALLLY have by diet and BM's under control but if I am to be "resting" for 4-6 weeks, how can I ensure I keep everything soft and regular like 2-3 times a day??? 2 times a day is a good day for me, a day when I have exercised in the morning, walked the 3 miles commuting to and from work and then a regular work day in between (desk job). Healthquest, did the lack of exercise not affect you? I guess on top of tons of veggies I am going to do stool softeners as well, eh? Can things get too soft?[/color][/font]

[font="arial, sans-serif;"][color=rgb(34,34,34);]- Fear of ripping out the stitches. I mean what if I have just a BIG BM and not necessarily a hard one? I feel like the pressure of anything coming through there might stretch things enough to cause damage. I've read that if this surgery fails, I could end up in worse shape that I am now? [/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]Until I read more stories, I thought 4 weeks off from work was going to be enough and now I think I'm going to ask my surgeon if he can recommend six weeks so I can stay out of work and live in my bed and bathtub and spend all of my other time cooking and dealing with ugly painful BM's [/color][/font]

[font="arial, sans-serif;"][color=rgb(34,34,34);]I'm gonna see the doc next week on 2/11 and he's supposed to confirm that we will proceed with the AF surgery upon examining me. I hope to be on the table 3/3/14. I'll come back and let you know how it's going. [/color][/font]

 

[font="arial, sans-serif;"][color=rgb(34,34,34);]Good luck to you healthquest, PIta1 and DCCrohns! I wish you the best of luck healing and returning to a normal fistula free life. [/color][/font]



#8 hopeful one

hopeful one

    Regular Member

  • Members
  • PipPip
  • 69 posts
  • Country:United States

Posted 08 February 2014 - 12:05 PM

Sorebumm,

I know your post was directed to a couple of others on this forum, but I couldn't help but chime in.  I don't know if you have read any of my past posts.  I had the flap procedure done in Nov. 2009 by a CRS at USC/Norris Cancer Hospital in Los Angeles.  The LIFT was so new that it wasn't an option for me.  May I ask what big city you're near?  My flap procedure was also in conjunction with a plug.  Maybe you can ask your dr.  if there may or may not be any advantage to you if both procedures are done.  He also used a technique  called Transanal Endoscopic Microsurgery.  I did stay 1 night in the hospital and had a catheter for 12 hrs.  When released from the hospital,  per his instructions and the instructions from his team:  no excerising, excessive walking like shopping, no lifting of heavy objects, basically do as little as possible.  If you think about it, those dissolvable stitches they use are very fragile. They break very easily., so you can see why physical activity is limited.  As far as bm's, soft/formed stool, not runny.  I was on Colace (stool sotener) during my recovery.  Straining is a big no-no.  After any bms, I hopped in the shower and gently rinsed the area off with the shower hose.  I really didn't change my diet.  I believe I ate just less of what I normally ate.  If you can take 6 weeks off from work, I do think it helps.  I took 6 weeks off from work and pretty much was on my back that whole time, except to use the bathroom and things like that.  I started feeling well in about 2 weeks.  So well that I had to keep reminding myself to slow down and take it easy.  It wasn't until week 6 that I started to walk for excerise to get ready to get back to work.  I really didn't have much post surgery discomfort (I know we all react differently), I remember I took 1 Vicodin the first night to just try and fall asleep, not for pain.

I wish you the best of luck and hope you find a successful cure and a speedy recovery.

-hopeful one



#9 PITA1

PITA1

    New Member

  • Members
  • Pip
  • 6 posts
  • Country:United States

Posted 09 February 2014 - 06:36 AM

Hopeful one and healthquest...if you spent most of the day in bed, what did you do to pass the time? Did you just lay down all day or were you propped up? I have a recliner in my bedroom and I'm wondering if that would be ok? Is it just a matter of being off your feet and really limiting how much you walk? I'm trying to imagine how I would occupy my time just laying flat for that long but if that's what it takes, I will do it.

 

Sorebumm...I have all the same concerns as you. I am going to see if I can take off longer from work since I want to make sure I am doing everything possible for this to succeed. I am particularly worried about of the lack of exercise and trying to be "regular". When I was on the LIFT, I did go on MiraLAX, which I added to my morning cup of coffee and helped. I eat pretty healthy so no concerns there, but I am researching whether there are any supplements I could take to help speed up healing.



#10 hopeful one

hopeful one

    Regular Member

  • Members
  • PipPip
  • 69 posts
  • Country:United States

Posted 09 February 2014 - 12:39 PM

PITA1,

Thank goodness for television.  I got to know what was on at each 1/2 hr. and on what channel.  I also did a lot of reading, all I could about fistulas among other things.  Like I wrote above, it was hard because I felt good after a couple of weeks and I wanted to get out and start doing things.  Was I bored?  YES!!!  If the surgical procedures failed, I wanted to at least know that I did everything in my power to give it the best shot at being successful.  I didn't mean to mislead you, I did get up and hobble on to the couch and that's where I spent much of my time other than bed to sleep.  There are probiotic supplements that I may help.  To this day, I continue to take a probiotic as well as Benefibre.  I would talk to your dr. first though.  You might also like to ask your dr. if taking a stool softener like Colace would have any benefits.  I can give you my experience and what my dr. advised and instructed me to do, but follow your dr.'s instructions and I'm sure you'll fair well.

Good luck to you and get well soon,

-hopeful one



#11 healthquest

healthquest

    New Member

  • Members
  • Pip
  • 14 posts
  • Country:Canada

Posted 16 February 2014 - 04:29 AM

Hi all, 

 

First of all, I am happy the thread has generated some helpful dialogue, so thank you for the feedback Sorebumm! There are many silent sufferers out there and it is not a topic one talks about with friends, or even family, so it is definitely a lonely road. This was also my first post on a support forum. 

 

For the initial two weeks, I really was not up to doing much other than rest...so that was easy. As I started to feel better, it was harder to not just jump right back into my old life, pretty much same thoughts as Hopeful One.  After about three weeks, I did start taking the dog for very short slow walks, progressively longer over the six weeks, for exactly the reason you stated, just to keep things moving. My active life in the winter normally involves both cross country and downhill skiing, zumba, aerobic type exercise, gym and hiking. Take home message, if you are a Type A person, plan to shut it down for the healing period. 

 

At first I felt guilty for taking so much time off work but now I think it was a very good call and probably salvaged what could have been an operative failure (back to original post and the flap and stitches being passed in BM after a few days). [color=#9900ff;]I suspect this rest and restorative period has not only allowed me to heal from surgery but completely changed the trajectory of my health going forward.[/color] What I did to pass the time? ..... truthfully take a good hard look at how my life and lifestyle could have contributed to chronic constipation and diarrhea swings.... and try to educate myself about how I was going to change that. Beyond AF surgery, I knew I wanted to be healthier, eat healthier and reduce stress. I did not want to end up back in the same spot. I have started to do hot yoga, meditate a bit and now I set clear work life balance and never bring work home via checking email or anything like that.

 

The diet has been transformative for me and I will never go back to wheat or sugar, permanently eliminated. Anyone trying to heal needs to learn about eating anti-inflammatory foods. There is mounting evidence inflammation is the cause of MOST chronic illness, not just GI issues. I have been back to work full time for almost two weeks and it is still going great. One thing I do now is get up and drink a bunch of water in the am... three big glasses and substitute a tea for coffee. I pour the water at night so it is room temp as I read cold water bad for sensitive GI track. Well about 10 minutes after I do that I have a great (ideal) morning BM, it gets things moving. This is Cameron Diaz's trick in addition to high fibre food. On Oz., she showed how she just guzzled this huge bottle of water and told everyone that is her am routine and right after that has her BM. Her words where "Did I go, oh yes I did" that is how effortless and normal her BM are. It works!  He said he loves how honest she is about poop. haha a beautiful celebrity telling it like it is! Back to me...of course to pass the time post op reading, some TV, knitting and then the best part...planning a sailing trip to Croatia on the Adriatic in Sept. Envisioning myself healthy and well, getting through this was very motivating for me. In the summer, I race sailboats. Draining fistulas are horribly incompatible with being a sailor in a bathing suit on a boat....in and out of the water with no pads etc. Trip is planned, tickets purchased!!!

 

I think as most people recover they check into the forums less and less often and eventually not at all. I will try to make a commitment to drop back in from time to time. Sometimes it seems like most of the posts are from people with relapses. I am here to tell say "YES you WILL get through this and NO not everyone has failed AF surgeries!" 



#12 healthquest

healthquest

    New Member

  • Members
  • Pip
  • 14 posts
  • Country:Canada

Posted 07 July 2014 - 02:32 PM

Hi to anyone reading this six month post surgery status" . The fistula open up and drain again off and on for about three months and I have now been three months totally drainage free so I consider it healed as the scar is well formed now.

 

The one important  new piece of information I received was from allergy testing (IgG blood spot). I was still getting bloated for no reason and found out I am highly sensitive to dairy and eggs. I mistakenly thought it was gluten but finally paid the $300 to get the test and was surprised at the result. When I eliminated dairy I literally went through dairy DETOX. It happens. Really felt terribly with huge, bad bloat. The testing was done through a natural nutritionist who has been wonderful in providing ideas for diets. She said it is best to continue with my gluten free (mostly) diet. I have found a bread with no dairy that I have been able to introduce in a limited way. 

 

She believes I had Leaky Gut and that is something I did suspect. I have been on a mission to heal my gut for a long time and I can say I am really making progress now. I never have diarrhea anymore (previously explosive everyday). I found a dairy free shake supplement recommended by the nutritionist that is made from pea which is detoxifying for the liver (quercetin in it as well). When I have this for breakfast, I really don't need food until lunch. I have gone from big cravings for salt, sugar to craving only healthy good food. The only downside to all this is how much time it takes to eat right. The nutritionist gave me some tips that help manage how to pull this off. She said fish oils essential for me. I have continued on with vit B shots.   I was heading for autoimmune disease which the nutritionist confirmed is often where this kind of thing leads.  I would estimate I felt really lousy for about 5 to 10 years.  I know I am pulling a lot more nutrients from my food. My brain fog has lifted, sleep quality is better, energy better and I am not draining everywhere or anywhere anymore. I am so glad that I did not give up on trying to figure this all out. It is finally beginning to feel like I am going back to the health state in my early 20's. 

 

Good wishes sent to all. 



#13 karthik

karthik

    New Member

  • Members
  • Pip
  • 9 posts
  • Country:United States

Posted 09 September 2014 - 06:51 PM

Hi healthquest,

 

I hope you are still reading posts on this forum. 

 

When you and your CRS decided to have flap advancement, were you still having active pus drainage and pain from the abscess? 

 

My CRS is very clear about delaying fistula repair (LIFE, FA .. etc) until the abscess has *healed*. But the abscess has not healed for me - i.e. A teaspoon of thick pus is draining once a day and I have pain following bowel movement till that teaspoon of pus drains through the external opening. According to my CRS, my condition is not right for fistula repair yet.



#14 karthik

karthik

    New Member

  • Members
  • Pip
  • 9 posts
  • Country:United States

Posted 13 September 2014 - 04:57 PM

Sorebumm - Sorry to hear about your failure with LIFT. In your post, you were asking why did my LIFT fail? I am no expert, but I would wonder about the state of your abscess at that time of LIFT - Was your abscess actively producing pus? Did you have pain from pus collection everyday?



#15 healthquest

healthquest

    New Member

  • Members
  • Pip
  • 14 posts
  • Country:Canada

Posted 29 December 2014 - 01:41 PM

Hi all, here is a ONE YEAR post op update.

 

Sorry to have missed your question in Sept Karthik as I have not been on the site for about six months.  To answer, yes at time of surgery there was still drainage of several tsp per day or more and definitely pain. 

 

The healing from the surgery was described by my physician as "healing by secondary intention", eg no sutures. This has been a long process as it left a large hole but the surgeon was confident this would be best in the long term. The only complication I can say that I have had is the the scar issue formation has resulted in a few episodes of slight bleeding, eg only drops and only about six times over the year. When that would happen there was a little bit of pain but it would only last a day or two.  I went to my regular GP about 10 months post op concerned about this and he said this is normal, it takes a LONG time for the hole that size to fill in. I would definitely have a few epsom salt sitz baths whenever I noticed this and that got things back on track. 

 

OK here I am exactly one year post surgery and I have no pain and no pus drainage! I remember one year ago being very concerned about this surgery and my recovery. It is my guess that people who recover never visit these type of websites again, leaving those reading with all the failure stories and none of the success stories. 

 

My wish is that everyone reading this forum who is suffering will find someone who is skilled at this surgery so they can get fixed up quickly and get on with their "fistula free life"!  Happy New Year to all!

 



#16 Valdemar Marchal

Valdemar Marchal

    New Member

  • Members
  • Pip
  • 5 posts
  • Country:Puerto Rico

Posted 01 January 2015 - 02:43 PM

Thanks healthquest. I had the surgery 20 days ago. No pain . Today i bleed a little. Stil have some discharge after b.m. but just a tap on the gauze. The discharge is now pink. Never has been smelly. My fistula was less than a inch long and very superficial. Still im paranoid at some times. Im 43 active MTB and road bike fanatic. And in jan 12/ 2015 i start college full time again. Just a little bit scared. Thanks for youre post. It gives me hope and peace. One question? Some times my butt check feels like needles is it part of the process?



#17 lilly1982

lilly1982

    New Member

  • Members
  • Pip
  • 4 posts
  • Country:United Kingdom

Posted 03 January 2015 - 05:23 AM

Good morning all!

 

I had a total fistulectomy and advancement flap procedure for a high suprasphinteric fistula on 2nd December 2014. I completed a full bow preparation the day before and was in hospital for 4 days after on a liquid diet.
On day two I passed air through the tract and told my surgeon this on rounds. He was convinced that this was impossible as said that he had created such a good seal internally. Over the next few days I felt more and more air passing, and would tell doctors but was pretty much ignored! At day 7 I finally opened my bowels and that's when my doctor finally realised that the procedure had failed! Faecal matter passed through immediately and has since.
I didn't find the actual post op too painful apart from the first night, but afraid my symptoms are worse than ever.
I am now one month post op, the external opening is becoming smaller but I dread to think how big the internal opening is as a huge amount passes when I open my bowels.
Thankfully the surgery didn't cause any bowel function problems.
To say I'm disappointed is an understatement. I've seen my surgeon again and he doesn't know what to do next with me in fear that he will cause me long term problems.
So ive been referred to St marks hospital in London. I am hoping that the referral won't take long as it's really getting me down now and can't sleep!
I'm so happy to hear that your surgery has been successful. What we have is horrible and not what we want to live with x



#18 jo_islangirl

jo_islangirl

    New Member

  • Members
  • Pip
  • 2 posts
  • Country:United States

Posted 20 January 2015 - 01:05 PM

Hi all, I had AF surgery on Jan 2, 2015. I was given Flagyl and Cipro as antibiotics to be taken together for 7 days. Cipro every 12hrs and Flagyl every 8 hrs. I was also given Percocet for pain. However, strangely, I was not in pain at all! Just a slight discomfort and tenderness down there so didn't take the pain meds at all. I did have a little diarrhea the first 2 days but mostly because of the antibiotics side effect and also residue from my pre-op laxative. Last Thursday, I started bleeding at the external opening and I got really scared. I called my surgeon and she said it is normal. Two days ago, I noticed some drainage so I was checking around if that was normal. I get so paranoid about this fistula/access recurrence. Thank you for this forum as it is so helpful and provide some peace of mind while reading others experience. I have my 3 weeks followup appointment with my CRS tomorrow and I pray am healing OK. I have been off work for 3 weeks now just to make sure I give myself all the chance of success for this surgery (my CRS said It has 80% success rate).

 

History:-
On March 2013, my GP drained a peri anal abcess in her office. But I never healed completely and she said I have a fistula. She recommended, I find a good CRS. I did some research online and found that it is not 100% curable by surgery so did not want to go for that. I tried homeopathy instead. Turmeric supplement, oregano oil supplement, etc... but the it would still flare every 3 oor 4 weeks. I would then sit in hot water until it popped, relief and would continue on with my life. But what a poor quality of life:-( after 1.5 year, I just was fed up and decided to consult a CAR. She explained better treat it now I am still young and healthy otherwise (30s) rather than wait. So we scheduled
My first surgery. She also explained I had a complex fistula and the first surgery would be placing a draining seton. Oh that one hurt bad...so painful for two whole weeks and on and off during the other days. I was on Vicodin, then swapped to Percocet... she saw me twice in between first 3 weeks post then 6 weeks post. It's only then she scheduled for the AF.

 

I have to say she is a very good CRS And knows her stuff. So am confident that save did well..the rest is how my body heals I guess....



#19 jo_islangirl

jo_islangirl

    New Member

  • Members
  • Pip
  • 2 posts
  • Country:United States

Posted 21 January 2015 - 02:51 PM

Not good news:-( went to my first post AF surgery follow-up today. My wound is draining and my CRS is not sure if surgery was a success..she said bleeding OK due to surgery but drainage is concerning. She put me back on antibiotics but this time on Augmentin as Flagyl/cypro gave me rashes on my face. She will see me again 3 weeks and we will go from there... I read here that even there was drainage, the surgery was successful so am hoping mine too will be fine..so depressed right now. I just got married 2 years ago and just feel my life is on hold. Not to mention how many days I've been off work. I am independent consultant so if I don't work I don't get paid..another surgery sounds remotely impossible right now with all the financial implications..too much stress..praying hard as well.



#20 healthquest

healthquest

    New Member

  • Members
  • Pip
  • 14 posts
  • Country:Canada

Posted 03 February 2015 - 10:30 PM

Hi all, 

 

Valdemar Marchal, yes definitely pins, needles that type of thing for a long time as the site was large and open, healing with no stitches. 

Lily1982 - Awww, I am so sorry to hear that you went through so much with a poor outcome. 

Jo_islangirl - Don't know when you had your surgery but from a bunch of posts I read in other forums, many people experience some type of drainage that eventually goes away or is reduced to almost nothing. 

 

It is easy to get discouraged as it is not the type of thing we can talk about to friends, co workers even spouse / partner. One thing I did read before my surgery and tried to do as I was still waiting was to not let it define me. It is inconvenient and total pain in the "you know what" but it beats the heck out of so many other problems that do not have a good prognosis or limit mobility or mental capacity.  Try to celebrate all the other ways you are healthy, vibrant and well. I just asked my husband if he noticed the fistula when it was draining and if it bothered him at any time. He said it definitely did not get in the way of intimacy. Warm bath, scented candles etc go a long way. No one talks about this part but it is important to not let it get in the way of your relationship (especially the newlywed)  so I thought it was worth mentioning. You can still have a good quality of life. Life is too short, enjoy every day. Take care all. 







© Copyright 1995-2014 IBD Support All rights reserved.

About Us | Contact Us | Advertise With Us | Disclaimer | Terms of Service | Crisis Resources

This website is certified by Health On the Net Foundation. Click to verify. We comply with the HONcode standard for trustworthy health information: verify here