Fistulas, Fissures and Abscesses Support Group

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I appreciate everyone's words. I'm currently healing well from my 1 seton placement 3 weeks ago. It really doesn't bother me much but I hate the no wiping. Are you all using a water spray, wipes, other? Grrr...hate that question.

I get nervous when it seems my drainage is slowing too. I agree though it could be a good sign.

My prep for colonoscopy was so much better when my Doct did a stool softener and full bottle of mailbox w/clear juice. It was a breeze. I guess there are a few options when needing to clean out colon.
 
That sounds so much better... I did Pico-Salax for my colonoscopy, and it tastes the best out of all of them, but I was still in a ton of pain with my fistula for a few days after. :( After that it went back to normal though.
 
Suehelb said:
Are you all using a water spray, wipes, other? Grrr...hate that question.
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I have been using witchazel hemorrhoid pads when at work.They work well for me.

I'm happy to hear your doing well adjusting to the seton.Just an adjustment to the daily routine,right?

If I was draining I'd be worried about draining too much.I'm not draining so I worry about that.:ybatty:

theOcean-I am encouraged,even though they have only been in for a little more than three weeks.My surgeon wants to see me every three months,so maybe he will see enough progress to warrant them being in for a shorter time.He originally said a year or more,if it turns out to be less,I'd be happy.
 
justbreathe- I don't think I can do both at the same time... do you have any tips on preparing for the colonoscopy? Its on Thursday so I am thinking that I shouldn't eat today and do clear liquids.. I need to have enough calories because I am breastfeeding. Any tips on what to eat??
 
To prepare I just ate normal food and then the day before was on clear liquids like the doctor said to do. To be honost, I don't think doing anything else special would make a difference. With eating normal, after the 2nd round on the toilet (lol) everything is loose anyways. The thing that bothered me most was when it was just liquid coming out because that's when it burned. But it's not unbearable so you should be okay. I took a Norco about 2 hours before I started the prep. I'm not sure if that's okay or not but I think it helped with the pain and it helped mentally as well. Don't psych yourself out. I imagined it to be way worse then it actually was. You should be okay. :) good luck!
 
To get enough calories for breast feeding Ensure makes clear liquid shakes. So they have calories and vitamins in them. But check with your dr first if those are ok to drink. I didn't find out about them until I had to be on a clear liquid diet for 2 weeks after surgery.
 
I'm having a colonoscopy on August 21st. The last time I had one was five years ago and the prep liquid stuff was just horrific to swallow. It looks like the prep stuff is different this time. I already picked up the prep stuff from my pharmacy. I am supposed to eat liquids ( clear ? ) two days before my colonoscopy. What is the point in buying Jello and broth and things like that if you are just going to poop them out ! I might as well drink water for two days. I know that water has no calories. I have prep instructions that were given to me on a piece of paper so that I know what to do before the colonscopy. I have never had a colonoscopy with a fistula, but it sure sounds complicated. I had an anal fistula in 1991 and I did not go to a doctor a about a year after I got it. I had no idea what is was and it was draining and I wore a panty liner every day to work. I think my insurance coverage sucked back them when I was sick. Finally I did get the fistulectomy in 1992. I hated the doctor that did the exam and the surgery. I had a very bad experience with him during an exam and it is something I will never forget because it was very painful. He was a colon and rectal surgeon. That was 24 years ago and I wish I could forget him. When I went in for my rectal abscess surgeries the doctors would look at my anal/rectal area and say "there is a lot of scaring here ". Yeah, that doctor in 1992 really did a butcher job on me. My first rectal abscess was very, very painful ( I had no idea what was going on ). I went to my PCP, then the next day I saw a General Surgeon and the General Surgeon sent me right to the hospital from her office ! For the second rectal abscess surgery I felt like an abscess was starting and I could feel it coming on.....so I just went right to the Emergency Room and they admitted me to the hospital right then and there and I had the surgery the next day. Sorry for talking so long. I am off track right now ? Later.
 
Ann,

So sorry to hear about your challenges. Hope you are no longer dealing with these challenges other than the scaring emotions that are left behind. That's big enough.
 
Suehelb said:
I appreciate everyone's words. I'm currently healing well from my 1 seton placement 3 weeks ago. It really doesn't bother me much but I hate the no wiping. Are you all using a water spray, wipes, other? Grrr...hate that question.
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I started wiping again around the 2 week mark. It was such a production to use the peri bottle all the time! Hopefully you will be healed enough soon to go back to the TP!
 
Seton in today. Much deeper abscess than originally thought so had general anesthesia instead of just twilight, which I didn't expect but ok I guess. Just nausea all evening. Dread that first bowel movement but so far pain isn't bad. Yeah for Percocet and Phenergan!
 
@maxwell- the first BM won't be as bad as you think…at least it never was for me :)
@harper- how did the prep/colonoscopy go?!
 
Thanks justbreathe8. I had a seton in 2012 but this is much different. Seems larger this time plus more extensive of a surg. I've had a lot of constipation recently and partial SBO so that's probably where my nerves are coming from. In theory now that abscess has been taKen care of things will pass easier. Praying this time it works!
 
Question! I had a cutting seton placed 7/11/14 for a high transphincteric fistula. The external opening was layed open for drainage. I am now noticing new hyper granulation tissue around the seton. Is this normal? Should I be worried or is this a sign of healing?
 
Hi beegirl,
I have a rvf and had it during my 2nd pregnancy. I had a seton drain in place and it didn't give me much trouble. It is much worse now. My surgeon suggested I'd be better off have a C-section, but after having a 34hour labor and hellish delivery with my first bub I had no problem at all with a C-section. The seton stayed in place for a few years after until the surgeon took it out, as he said it wasn't really serving any purpose.
Is yours giving you trouble?
 
Thanks Mrs. W for replying. I wrote you a private message.... thanks... Definitely any input on rvfs are so welcomed.... thanks all. b
 
hi everyone... had my colonoscopy.. ugh.. it was fine except for not being able to go to the bathroom after and having this fistula!! I looked "down there" and saw a bubble and touched it and it popped! TMI.. but is that normal for a fistula to swell and then pop? Fistula surgey is next... within the next couple of weeks...
 
Has anyone had a bowel to bowel fistual? how do they fix those Im getting ready to have a Proctocolectomy and she said they are tricky to deal with. What does that mean"tricky"?
 
Harper05 said:
hi everyone... had my colonoscopy.. ugh.. it was fine except for not being able to go to the bathroom after and having this fistula!! I looked "down there" and saw a bubble and touched it and it popped! TMI.. but is that normal for a fistula to swell and then pop? Fistula surgey is next... within the next couple of weeks...
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Yes, common.
 
Harper05 said:
Hi everyone... I had an abscess drained about 5 months ago.. I have had a small fistula that I will be getting surgery on soon.. but I am getting a colonoscopy first.. I am so nervous the prep kit is going to make my fistula flare up and im going to be in a lot of pain! Has anyone had a colonoscopy with a fistula?
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Hi yes, I had a colonoscopy when I had 3 fistulas which were very active (if you know what I mean) the prep I would say isn't the best experience I've ever had. It left my backside quite sore and I felt a bit sorry for my self. The procedure it's self wasn't so bad, the sedation defo worked wonders and I think I chatted there socks off the whole time!
I'm due for another colonoscopy in the next few months and I'm a bit apprehensive because I have 3 setons in place right now.
The solution does not taste very nice either. I ended up with a tube of toothpaste.:lol: Every time I had 250mls I had I small amount of toothpaste, I guess mouth wash would do same. Just don't swollow it! Can u imagine minty smelling poo! :ylol2:
Hope it goes okay for you.
:ghug:
 
This disease just sucks! Right now my seton has been tolerable. The surgeon said the best way to control the fistula is with a seton. If I go on heavy Crohn's meds there is a chance it will heal but lots of side effects to consider and no guarantees of course. So.... Try the meds or live with the seton? Thoughts?
 
Suehelb said:
This disease just sucks! Right now my seton has been tolerable. The surgeon said the best way to control the fistula is with a seton. If I go on heavy Crohn's meds there is a chance it will heal but lots of side effects to consider and no guarantees of course. So.... Try the meds or live with the seton? Thoughts?
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What medication are they meaning? Biological therapy? X
 
Suehelb said:
This disease just sucks! Right now my seton has been tolerable. The surgeon said the best way to control the fistula is with a seton. If I go on heavy Crohn's meds there is a chance it will heal but lots of side effects to consider and no guarantees of course. So.... Try the meds or live with the seton? Thoughts?
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I'm finding day to day living with setons to be tedious,tolerable,but tedious.You aren't on a biologic? Remicade or Humira?

I just had my second Remicade infusion this week.I have noticed an increase in drainage.I also just saw my colorectal surgeon and he said the drainage was good and the setons were doing there thing along with the Remicade.A bigger challenge to stay clean,especially at work.

Fatigue seems to be the only side affect for me right now.I'm told it takes from a few weeks to quite a bit longer for side affects to happen.Knock on wood,right?

I did have a reaction after my last infusion that was odd.The vein around the infusion site swelled and was very sore.This happened after I got home.I was told to put warm compresses on it.I was worried about clotting.By the next morning the vein was back to normal but my arm was still quite sore.There is no bruising,just soreness.This,or something similar,happen to anyone else?
 
They discussed remicade and humira. I have not researched either one and am currently on asacol and have been for 14 years. Waiting to see the GI Doct.

I have been wiping w/TP at work and it seems to be working ok. Can this seton fall out? I really can't complain much about the seton. Except I think I need to invest in a hot tub so at least my hubby could join me.

Xeridea...very interesting article. Thx!
 
Wow... That is promising info thanks Xeridea.

I am a week post op with 2 setons that are making me crazy. Thank goodness for pain meds. Do have issue with constipation probably due to pain meds. Not too sure what to do about that yet. Was a little nervous about the pain involved with going anyway, but not too bad. I have found over the last 2 years with abscesses and fistulas that puffs with lotion are the best replacement for TP, even better than the softest. Had remi today and I am praying for some real results this time. So far just have my usual post remi headache.
 
Harper05 said:
hi everyone... had my colonoscopy.. ugh.. it was fine except for not being able to go to the bathroom after and having this fistula!! I looked "down there" and saw a bubble and touched it and it popped! TMI.. but is that normal for a fistula to swell and then pop? Fistula surgey is next... within the next couple of weeks...
Click to expand...
Hi Harper, I'm also have periodic swelling of my fistula that causes a lot of discomfort until that " bubble" pops. I was also wondering if this was "normal".
 
Suehelb said:
This disease just sucks! Right now my seton has been tolerable. The surgeon said the best way to control the fistula is with a seton. If I go on heavy Crohn's meds there is a chance it will heal but lots of side effects to consider and no guarantees of course. So.... Try the meds or live with the seton? Thoughts?
Click to expand...

the other advantage stronger meds could do is prevent other fistulas from forming and keep your CD under best control. I have no experience with them but it seems quite common to get more than a single fistula. You could ask your doctor what are the risk of developping other fistulas or your CD to reactivate with or without meds.
 
Suehelb said:
This disease just sucks! Right now my seton has been tolerable. The surgeon said the best way to control the fistula is with a seton. If I go on heavy Crohn's meds there is a chance it will heal but lots of side effects to consider and no guarantees of course. So.... Try the meds or live with the seton? Thoughts?
Click to expand...
Sue, My GI had recommended Humira immediately for perianal Crohn's but I am also undecided. I have three fistulas-two with setons & the third is scheduled for seton placement in September. I'm currently on Rifampin for latent TB getting everything in order prior to starting a Biologic. This has given me 4 months of serious time to ponder Biologic or not. I also find the setons very tolerable & have concluded I can live with them for life.
With regards to a Biologic, however, I'm still undecided : ) I'm thinking if I can live with setons for life why start the Biologic...I'm scheduled for my second Colonoscopy in September when the surgeon places the next seton. For me, I think that the next Colonoscopy will be my decision point. If the Colonoscopy results show signs of Crohn's I will proceed without further delay to Humira. If the Colonscopy results are good I will maintain my current course of fistula treatment with setons only. Since the manifestation of Perianal Crohn's & developing these three fistulas I have made radical, consistent changes to my diet & supplement routine. I have been in a remission period since January, 2014 which coincides with my dietary & supplement changes.
 
Maxwelljax said:
Wow... That is promising info thanks Xeridea.

I am a week post op with 2 setons that are making me crazy. Thank goodness for pain meds. Do have issue with constipation probably due to pain meds. Not too sure what to do about that yet.
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I took stool softeners after my seton placement in December to help with the constipation from pain meds. Made a big difference. You have to drink lots of water with them, though! I took Colace, which you can get over the counter, but ask your doctor first.
 
Suehelb said:
I have been wiping w/TP at work and it seems to be working ok. Can this seton fall out? I really can't complain much about the seton.
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They can't really fall out. The surgeon ties them in a knot and then sips the ends of the seton off. Should be pretty secure. Mine were in for 7 months and after I healed I wiped (A LOT!) and the knot never loosened.
 
lgpcarter said:
They can't really fall out. The surgeon ties them in a knot and then sips the ends of the seton off. Should be pretty secure. Mine were in for 7 months and after I healed I wiped (A LOT!) and the knot never loosened.
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I find the knots to be irritating,even painful at times.Getting in and out of a vehicle is slow and uncomfortable.My surgeon told me to clean with tp and water through out the day.I was using wipes with witchhazel and it seemed to aggravate them,to astringent maybe?I asked my surgeon about them and he said not to use them,just tp and water.I'm doing the tp and water through the work day and that does not irritate and cleans quite well.

I take it having setons knotted is a common practice? They would be more comfortable if they were not knotted.Would they fall out if not knotted together?The knots make the nightly Canasa a bit challenging.
 
When I had my setons the surgeon put the two ends together and then tied them. So they weren't really tied on a knot. I was pretty comfortable most of the time because I was able to grab them and readjust when needed.
 
dave13 said:
I find the knots to be irritating,even painful at times.Getting in and out of a vehicle is slow and uncomfortable.My surgeon told me to clean with tp and water through out the day.I was using wipes with witchhazel and it seemed to aggravate them,to astringent maybe?I asked my surgeon about them and he said not to use them,just tp and water.I'm doing the tp and water through the work day and that does not irritate and cleans quite well.

I take it having setons knotted is a common practice? They would be more comfortable if they were not knotted.Would they fall out if not knotted together?The knots make the nightly Canasa a bit challenging.
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My setons are currently secured with titanium surgical clips NOT knotted. I had thought perhaps the titanium clips was the standard surgical practice for securing setons? Sounds like many of you have knotted setons?
Anyone else have setons secured with titanium clips?
 
Jay Woodman said:
My setons are currently secured with titanium surgical clips NOT knotted. I had thought perhaps the titanium clips was the standard surgical practice for securing setons? Sounds like many of you have knotted setons?
Anyone else have setons secured with titanium clips?
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Are the clips comfortable? If I have it right,my three setons are bundled together.
 
Finally got my appointment today with the colorectal surgeon to properly assess my fissures... Its been almost 3months of rectal pain and bleeding from the fissures and more recently from crazy abdominal pain! I'm really nervous that he'll dismiss it as a regular fissure without checking out properly why i had 3 fissures suddenly and y i have unbearable abdo pain! Do colo rectal surgeons pay attention to all symptoms or do they just focus on getting rid of the fissures??
 
dave13 said:
Are the clips comfortable? If I have it right,my three setons are bundled together.
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Hi Dave, I currently have two double tract fistulas. That means there are two setons bundled together in each of two separate locations. The separate tracts require that each of the setons have their own titanium clip. So, in each location I actually have two titanium clips for a total of four titanium clips. I find the titanium clips are absolutely painless & comfortable! I did find upon their initial placement the titanium clips embedded in the skin & caused initial tenderness. After about a month of healing, however, the soft skin became accustomed to the clips & adjusted well. I have not had any experience with knotted setons but am finding with the titanium clips I am absolutely unaware of their presence : )
As an added bonus, I just learned that I don't have to have them removed for an MRI! Titanium is MRI safe...
 
Maxwelljax said:
I can't imagine how a clip could be comfortable but I know the knots certainly aren't.
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Maxweeljax, I give you my assurance that the clips are totally unobtrusive & comfortable. My surgical notes indicate that both fistula tracts were delineated with double loop vessiloop seton sutures, tied with medium size titanium ligaclips X3 each. I hope we can share my comfortable seton ligaclips experience with others. If this option for securing setons is not standard procedure it should certainly be! I would like to share my experience if it provides other seton patients an advantage with comfort : ))
 
After years of undiagnosed GI-related episodes, I got myself a fissure after a particularly horrible flare and since it was originally caused by too much uncontrolled D, it's been a &%$#@ to get rid of because each episode that comes has the potential to aggravate it... so here I am.
 
I'll have to ask my surgeon about clips.I want to hear why he chooses knots over clips.Is it an option for all setons? Does it depend on the procedure?

H,m,m,m...
 
Me too! I see the surgeon on Monday and I want to know why I'm spending so much time either in pain or sleeping because of pain meds due to knots when clips may have been a better option.
 
Harper05 said:
hi everyone... had my colonoscopy.. ugh.. it was fine except for not being able to go to the bathroom after and having this fistula!! I looked "down there" and saw a bubble and touched it and it popped! TMI.. but is that normal for a fistula to swell and then pop? Fistula surgey is next... within the next couple of weeks...
Click to expand...
Harper, The fistula "bubbles" cause discomfort. I always get a surge of pressure when I feel one developing.
 

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Maxwelljax said:
Me too! I see the surgeon on Monday and I want to know why I'm spending so much time either in pain or sleeping because of pain meds due to knots when clips may have been a better option.
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Maxwell, I'm sharing this pic of the ligaclips in the hopes that they can provide you & others with an option to alleviate the pain due to the seton knots. I thought the ligaclips on each seton were actually a single clip but when I reread the Surgical Notes I now understand that each seton is actually secured X3 medium sized ligaclips. One of the double tract fistulas is external to the anal area. The other double tract fistula is actually tied off inside the rectal area with the ligaclips! So I also have the ligaclips inside my rectum. Yet I am not in pain with them. Wishing you much luck with your surgeons appointment!
 

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Wow...Jay that is totally different. My setons are more like rubber bands. Those are huge! But I do see how the clips would be different than knots. I wonder if it's something in the US verses Canada. I'm definitely going to ask about it.
 
my setons are more like surgical sutures.I figured a seton was a seton was a seton...CD,what a learning experience.
 
dave13 said:
my setons are more like surgical sutures.I figured a seton was a seton was a seton...CD,what a learning experience.
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Dave, I just read an article posted on the U.S. Department of Health and Human Services. http://www.guideline.gov/content.aspx?id=36077 Guideline Title: Practice parameters for the management of perianal abscess and fistula-in-ano.
The seton (i.e., suture, rubber band, Silastic vessel loop) is passed through the fistula tract to convert an inflammatory process to a foreign body reaction causing perisphincteric fibrosis. Setons may be of the cutting type, for which progressive tightening will produce a gradual fistulotomy with scarring of the tract, over the course of weeks. Alternatively, a loose seton may be placed to promote drainage and avoidance of recurrent perineal sepsis, and may be left in place long-term or removed with ultimate cure.

The article outlines acceptable practice parameters for treating perianal fistulas. Setons may include sutures, rubber bands or silastic vessel loop. It appears that each of us has been treated with a fistula seton loop that runs the gamut of all of these acceptable options!

Complex anal fistulas may be treated by the use of a seton and/or staged fistulotomy. Grade of Recommendation: Strong recommendation based on moderate-quality evidence 1B.
 
Your a font of information Jay Woodman :) I'm definitely draining more since infusion #2. My colorectal surgeon checked them out and said the setons are doing well and the increased drainage is a good thing.A little more time consuming to stay clean...but a good thing.

Who ever thought happiness could be found in the draining of multiple fistulas?Gotta appreciate the positives when we can,right?

Maybe I'll answer the rhetorical "how are you today?" by my co-workers and say 'Awesome! My three fistula are draining and that's a good thing.How about you?".
 
dear jay: I had an anal fistula back in 1991. I had no idea what is was or what to do about it. This may sound gross, but I popped the "bubble" and liquid came out ! The pressure was so uncomfortable and I thought that popping it would relieve the pressure, and it did. I don't know why, but I did not go to the doctor for several months after discovering it. I had no idea what it was.( I wore panty shields for the little bit of drainage that came from the fistula ). My insurance plan sucked at the time, so maybe that was the reason for not going to the doctor. I went to the doctor in 1992 and I had an anal fistulectomy. I got a bad vibe from the colon doctor when I first met him, yet I still let him do the surgery. I think that was a big mistake. The fistula did not come back. I wish after my first colon doctor visit that I would have researched fistulas and learned about them and then changed colon doctors. Instead I just went ahead and had the surgery without knowing anything about fistulas and not feeling confident about the doctor who did the surgery.

I am more careful now about having surgery in a hurry. Back in 2007 I had a cyst on my left kidney ( found on a CT Scan that I had at the hospital. ) I was in the hospital for some other health issue and they found the cyst by accident). The hospital doctors made it sound like I needed to have the cyst out as soon as possible. That it was a life or death situation. I had major surgery to remove the cyst and was in the hospital for 5 days total. It was benign. I have a big scar now and when they cut through nerves you lose sensation where they cut, so you cannot feel anything. I won't be letting any more doctors talk me into surgery any longer.

I recently had an ultrasound of my kidneys and a CT Scan and a cyst was found on my right kidney. I talked to my new kidney doctor about it and I told him of my previous experience with cysts and surgery. So we are going to monitor the cyst with CT Scans every six months to see if it grows. It is only 1cm ? I am glad that my new kidney doctor does not want to rush me to the hospital.

Thanks for listening. Sorry this is off topic ?
 
dave: I love your joke about people asking you "how are you today ? " !!!!!!!

I do not work any longer, but when I was working everyone knew I had a colon disease and that I had to make many trips to the restroom. I said I was having a "gastric anomaly".
 
cleuger said:
Where is that fistula located at?
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Cleuger, I assume you mean my mysterious graphic seton pic? Let me check my surgical notes & I'll give you the exact documented notes. I posted the pic because I was trying to help Dave and Maxwell who were having significant discomfort with their setons. My setons are secured with titanium ligaclips & I just couldn't find a medically documented illustrated graphic....so I provided mine .....Without this Forum & its members who have been kind enough to help me with my questions I would feel that no one else could possibly be experiencing perianal fistulas : )
 
cleuger said:
Where is that fistula located at?
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Cleuger, The surgical notes indicate 2 separate cutaneous sinuses, both approximately 2cm radial to the anal verge, one located at the 2 o'clock position and the other located at the 10 o'clock position. Both noted as 2 intractable anal fistulas.
 
Ann Morgan said:
dear jay: I had an anal fistula back in 1991. I had no idea what is was or what to do about it. This may sound gross, but I popped the "bubble" and liquid came out ! The pressure was so uncomfortable and I thought that popping it would relieve the pressure, and it did. I don't know why, but I did not go to the doctor for several months after discovering it. I had no idea what it was.... we are going to monitor the cyst with CT Scans every six months to see if it grows. It is only 1cm ? I am glad that my new kidney doctor does not want to rush me to the hospital.
Thanks for listening. Sorry this is off topic ?
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AnnMorgan, That's o.k. Off topic is acceptable. I think we all have a lot to deal with & then sometimes when we think we have enough along comes another surprise : )
 
Saw the surgeon today had he really had nothing good to offer. Discussed several procedures, most that have only a 15-20% success rate with someone having small bowel Crohn's. These range from fibrin glue, plug, flaps, and pretty life changing surgeries including colostomy. At this point we are continuing with setons. He will take one out in a month but the other will remain long term. Didn't seem too optimistic that Remicade was going to close anything, but did say the fistula wouldn't close with the seton in but would allow me to safely have Remacaid without the complication of abscess and infection getting out of control. Completely deflated my hope and determination that this could now heal with the drains in and remi going.
 
Hey all, I have a rectovaginal fistula, it has never abscessed before and usually it doesnt hurt too bad. Right now though my entire vaginal opening is burning as is my other end, I looked and where the fistula used to be pinkish red skin with a tiny hole, it now looks like white gray skin with a bigger hole. Sorry to be so graphic, but I feel I can openly communicate with you guys since you truly understand. I have a jpouch so I go a lot more frequently than most so I dont know if its just skin irritation from that or a bacterial infection, but it looks to me like I have a new fissure in the anal opening and a much different looking fistula. How do you know if your fistula is abscessed?
 
Hi Aimeey
Big hugs to you!

I didn't know my fistula was abscess sing until I started to feel a lump - the lump was internal so was only felt with prodding and probing ( my fistula was undiagnosed at this stage, but I was mid test and had all the symptoms ) for me the abscess came on slowly, it was absolutely huge and was showing massively externally at the end as well as internally, but this was all over a couple of months...
I never felt it at the pea size stage, it was a walnut size before I was aware of it, and grew to 4inches by 6 inches....

I can only tell you my discovery of my abscess caused by my fistula, but I'm guessing we will all be different.

With your symptoms, in my opinion, I would get it checked over by your doctor, just to be on the safe side.

XX
 
Sazzle said:
Hi Aimeey
Big hugs to you!

I didn't know my fistula was abscess sing until I started to feel a lump - the lump was internal so was only felt with prodding and probing ( my fistula was undiagnosed at this stage, but I was mid test and had all the symptoms ) for me the abscess came on slowly, it was absolutely huge and was showing massively externally at the end as well as internally, but this was all over a couple of months...
I never felt it at the pea size stage, it was a walnut size before I was aware of it, and grew to 4inches by 6 inches....

I can only tell you my discovery of my abscess caused by my fistula, but I'm guessing we will all be different.

With your symptoms, in my opinion, I would get it checked over by your doctor, just to be on the safe side.

XX
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Hi Aimee, The origins of my third abscess-fistula was a similar experience to Sazzle's. It took from months (December to April) for the abscess to finally present & require an I&D. It lay relatively dormant, causing significant discomfort but slowly growing in size. A CiproFlagyl combo would stagnate it but it would never go away. It finally declared after 5 months. I am now scheduled for my third seton in September for this remaining fistula. In the interim while awaiting for seton surgery the fistula drainage also causes a "blister-like" formation & very tender swelling around the fistula area. Perhaps some may reference this as a fistula in an "abscess state" but it is mild in comparison to the pain & size of the original abscess at this site. I can not always easily find medical reference materials or images that mirror my experiences. I'm sorry I can not be of more help to you. I hope you are able to find some answers & seek medical guidance for your current questions.
 
Hi guys, I just kinda decided to come here bc I have no one else to talk to who understands. I got diagnosed with crohns about 5 years ago, and the only symptoms I had were hemorrhoids and peri-anal abscess. I had already learned to deal with it by the time I told my mom and we went to a doctor, but I was always so scared so I lied and said the meds were helping but they weren't, so I wouldn't have to go back. Now I've let it go too long, I know it was stupid lol. The abscess turned to fistula, and I've just been dealing with it in secret til now. But the reason why I decided to go to a doctor again was because I started feeling the pain and swelling again on the other "buttcheek" so just got colonoscopy and endoscopy last week, and CT scans yesterday.

The reason why I am posting this is because I just looked in the mirror and saw my worst fear, a red spot exactly where I've been feeling sore, and I started crying and haven't really stopped. I'm supposed to be sleeping before work but I can't stop thinking about what I just saw. I don't know if this seems childish or not, everyone on here seems to be so well spoken and smart and mature, it's hard to imagine anyone else feeling like this. Am I the only one?? 😢
 
Oh Melissa
You are far from alone..... If you look at other areas on the forum you will see posts on emotions and you will see you are far from alone...
I cry often, die of embarrassment when people ask why I can't go swimming or I'm in hospital again, I hate my hubby seeing my scarred bottom knowing there's more scars to come...and so on....

BUT - you need to get it treated! Because we would all be in a worse state if we didn't..... It's difficult I know, but you have to get past the embarrassment and shame, because it's not your fault, it's life and it happens.

Look at some of the success stories on here to make you realise there's light at the end of the tunnel ( no pun intended!!) ........ I'm still in the early stages of a series of ops etc, but this wonderful site has and still is helping me through...

Big hugs xx
 
Hi Melissa,
I am NOT smart or well spoken & cry often cos of my peri anal crohns issues. It can be down right depressing & there are many ppl on this forum who have experienced your symptoms. You need support medically & emotionally.
Sending big hugs your way :ghug:
 
I am not well spoke either! I type like I talk, and that works for me! You are def not alone! My fistulas, abscesses, and surgeries to fix them caused me SO MUCH sadness and depression and even embarrassment at first! However, you would be surprised at how many people you know that are dealing with or know someone dealing with a similar thing! People just choose not to talk about it because of the location of the issues. This forum is filled with people who just started dealing with this and people who have dealt with this their whole lives. You MOST DEFINITLY need to get it taken care of and get everything under control. Once you do, it will be so much easier to deal with. It took me almost 2 years and 5 surgeries to feel okay. Feel free to PM me if you need support or need to talk. Hang in there and don't be embarrassed! :)
 
Melissa, you are not alone. We've been their. Some of us are farther down the road on our IBD journey. Sending you my support.
 
Melissa as you can see from all the posts there are many of us in the same situation. You have to hang in there and seek the medical help you need. Many of us are on this same path and some days are better than others. Hang in there. Hugs!
 
Melissadempsey728 said:
Hi guys, I just kinda decided to come here bc I have no one else to talk to who understands. I got diagnosed with crohns about 5 years ago, and the only symptoms I had were hemorrhoids and peri-anal abscess. I had already learned to deal with it by the time I told my mom and we went to a doctor, but I was always so scared so I lied and said the meds were helping but they weren't, so I wouldn't have to go back. Now I've let it go too long, I know it was stupid lol. The abscess turned to fistula, and I've just been dealing with it in secret til now. But the reason why I decided to go to a doctor again was because I started feeling the pain and swelling again on the other "buttcheek" so just got colonoscopy and endoscopy last week, and CT scans yesterday.

The reason why I am posting this is because I just looked in the mirror and saw my worst fear, a red spot exactly where I've been feeling sore, and I started crying and haven't really stopped. I'm supposed to be sleeping before work but I can't stop thinking about what I just saw. I don't know if this seems childish or not, everyone on here seems to be so well spoken and smart and mature, it's hard to imagine anyone else feeling like this. Am I the only one?? 😢
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Welcome Melissa! I'm glad you have joined our Forum. My first abscess occurred in 2012 & I had to go to Emergency to have an Incision & Drainage. I remember going to my Doctor who said I need to go to Emergency..My Family Dr. is a amazing young female & I was embarrassed telling her my bum was swollen, red & painful...I really had no idea what the problem was..Then she sent me to Energency. I had to repeat for the Admitting Clerk that my bum was swollen. Then I had to repeat & be examined & treated by the Emergency Dr. The whole time I'm thinking who on earth has abscesses on their bum? This must be a really odd problem...That was 2012. I've had more abscess, more fistulas & more surgeries since then. I think I was most upset the first few times I had to be treated. I think time has helped me adjust. It's a medical problem, my abscesses & fistulas needs to be treated..I still get upset when another one develops. I was very upset & frightened when the GI Doctor said the next step is treatment with Humira. This Forum has been really helpful. Please feel free to ask absolutely any questions you have. I'm sure many of us will try to answer & help in any way we can : ) I always find other people sharing their experiences very helpful to me!
 
Thank you everyone! I appreciate your support and hugs, and I do feel a tad better :) I guess just because reading through the posts, most of it goes over my head as far as the terms and surgeries and medicines, I'm learning more and I'm sure this will be a continuing process. And you all are very helpful! I'm so glad to have found this forum, and am very anxious to get this all taken care of. I'm not due to see my Dr back until September 11th, wish it could be sooner, and from there we're going to be discussing my options I guess.
 
Maxwelljax said:
Me too! I see the surgeon on Monday and I want to know why I'm spending so much time either in pain or sleeping because of pain meds due to knots when clips may have been a better option.
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Maxwell, I'm wondering how the discussion went with your Surgeon on discussing the titanium ligaclips versus knots as an alternative option for securing your setons?
 
Melissadempsey728 said:
Thank you everyone! I appreciate your support and hugs, and I do feel a tad better :) I guess just because reading through the posts, most of it goes over my head as far as the terms and surgeries and medicines, I'm learning more and I'm sure this will be a continuing process. And you all are very helpful! I'm so glad to have found this forum, and am very anxious to get this all taken care of. I'm not due to see my Dr back until September 11th, wish it could be sooner, and from there we're going to be discussing my options I guess.
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Melissa - I've only been on here since April/May time - I'm still lost in all the terminology etc..... But we will get there!!
XX
 
So I called today and got a copy of my reports from my CT scan from Tuesday, and here's what it says about the fistula: Perirectal and perianal inflammatory changes are identified. Several complex soft tissue inflammatory tracks extend from the perianal inflammation posteriorly, one of which reaches the skin surface of the medial gluteal fold likely representing a fistula. Several of the tracks are blind-ending. No contrast is identified opacifying the tract. No loculated fluid collections are evident. No discrete abscess is identified.

So with that being said, it says no discrete abscess is identified. That just means that nothing else has broken the skin yet, correct? And the red spot I noticed today very likely is the beginning of that starting? I know most people on here are just patients like me and not experts on reading medical diagnoses lol, but any insight is helpful!
 
Jay- never actually got to the point of asking about the clips specifically. I was so stunned by what my options are, or should I say arent! I did talk about the irritation of the knots and seton and from what I understand the setons are small almost like rubber bands and the clips are probably too big to work with those. I will be having 1 seton removed next month and thats the one with the larger knot and is so uncomfortable. The other will stay indefinitely and will have to see how bad that is. At this point I'm taking pain meds and also benadryl at night which helps with the irritation so will see what happens. I see the gi tomorrow so will see if he has any better info to offer.
 
So was still freaking out so I figured I would call my Dr's office to get some peace of mind, figured it can't hurt. So I called and talked to my Dr's medical asst, and she was like okay I'm going to just have him call you and speak to you directly. So he did (he seems like such a nice Dr) and he said that the CT scan showed multiple multiple fistulas because of the inflammation in my rectum and colon (OMG I just about had a panic attack) but then he said that he is already starting to work on the insurance company to get me approved for remicade, he said with confidence that it will change my life and believes 100% that it will heal me. I am a little uncomfortable believing 100%, but I am relieved that he is so sure that it will help.
 
It's not 100%, more like 50% that it will totally heal your fistulas and control your inflammation
It worked for me, 100 % remission for 9 years. Then stopped working
Do everything you can to help it.
like living a very healthy low stress life style good diet plenty of exercise.
Take anti oxidants to help mitigate side effects resveratrol, astxanthin, vit. c,d,e.
If it works it will change your life.
Me I am moving on to entyvio
Doc is putting in papers today
Good luck
 
Maxwelljax said:
Jay- never actually got to the point of asking about the clips specifically. I was so stunned by what my options are, or should I say arent! I did talk about the irritation of the knots and seton and from what I understand the setons are small almost like rubber bands and the clips are probably too big to work with those. I will be having 1 seton removed next month and thats the one with the larger knot and is so uncomfortable. The other will stay indefinitely and will have to see how bad that is. At this point I'm taking pain meds and also benadryl at night which helps with the irritation so will see what happens. I see the gi tomorrow so will see if he has any better info to offer.
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Maxwell, Why are your options compromised? I thought that we could continue to treat our fistulas with draining setons indefinitely? Is it that you also have bowel inflamation & fistulas concurrently that makes your options more complicated? On another note, can the Surgeon switch out the rubber bands that he has placed to drain your setons & replace them with surgical siliastic loops so he can use the titanium ligaclips to secure them instead of knotting the rubber bands?
 
Robrich said:
It's not 100%, more like 50% that it will totally heal your fistulas and control your inflammation
It worked for me, 100 % remission for 9 years. Then stopped working
Do everything you can to help it.
like living a very healthy low stress life style good diet plenty of exercise.
Take anti oxidants to help mitigate side effects resveratrol, astxanthin, vit. c,d,e.
If it works it will change your life.
Me I am moving on to entyvio
Doc is putting in papers today
Good luck
Click to expand...

Where is your crohn's located and where does it affect you? I found out that mine is only located in my colon, rectum, and anus, and everything else has no abnormal inflammation. He said that's perfect and that's what you want, so now I know I don't need to worry about being nutrient deficient as much, besides the iron from bleeding. He seems to believe that since it is all located in that region, and with the multiple fistulas, said that remicade would work very well for me.
 
Robrich said:
All in the colon. Remicade is the right choice
Click to expand...

Thanks! I'm so sorry to hear that it stopped working after all those years, that must have sucked to realize your body was going backwards again. I was reading through your posts about how much remicade helped you immediately within days! I am really excited to get started. I saw you said healthy diet and exercise, I am already eating healthy but I haven't worked out in years, it causes pain so I don't do it, but I really really long to! Maybe with remicade I can get to a point where I can actually do it! :)
 
Sucks big time, thought I was in the clear but as I have learned its rare that anything works forever with this disease.
Fortunately there are quite a few promising treatments becoming available in the next few years.
Hopefully you will be able to exercise and more after the remicade. Just start with LoNG walks.
I think it is very important to keep your metabolism active and your body strong and sweating out toxins and clearing the drugs from your system. Men clear better than women for this reason. People who are stuck in bed and don't keep themselves otherwise healthy or who have multiple health issues seem to suffer more drug side effects.
Truthfully I feel like crap most of the time lately but still manage to get to the gym once or twice a week when I have a few good moments of feeling ok.
Good luck and anxious to hear how it works for you.
 
What exactly is eating healthy? Wouldn't it be different for everyone here ? I cannot eat raw vegetables at all or else I am in the bathroom within 15 minutes. The same with fruits. The only fruit I can eat for sure is bananas. And the only vegetable I can eat for sure, cooked, is carrots. I can eat potatoes. I don't like to eat meat. I was iron deficient and taking iron pills for a long time ( I even had a blood transfusion in 2009 ) but my new PCP doctor said my iron levels looked okay and he said I no longer need to take the iron pills. I AM on B12 and D3 now. I am B12 deficient and I have been for a while. I used to get the B12 shots. I also have arthritis/ osteoarthritis, so another one of my doctors said to take D3 in addition to my Fosamax. Anyhow,I don't see how I can "eat healthy" if so many foods make me have diarrhea. There is no way I am getting all the nutrients I need. Starting in May, though, I started to make a healthy smoothie every morning and I gave up the coffee. The smoothie has 1/2 banana, 1 large apple without the skin and the core, 1/2 cup real carrot juice, 1/2 cup of plain yogurt or plain Greek yogurt, 1 cup milk or soy milk, 1 tsp real vanilla extract and one tablespoon of honey. Sometimes I substitute the carrot juice with a small cucumber without the skin and the seeds. I went to a Nutritionist in May and she gave me a paper that showed me what kind of ingredients should be in the smoothie - - fruit, vegetable, dairy, protein, flavoring, etc. In the beginning I also used flax seeds in my smoothie but I quit that. And I also tried whey powder, but then I read somewhere that you can get constipated from eating that unless you drink a lot of water.
 
Those smoothies sound good ann, if you can't tolerate eating vegetables, smoothies certainly are the way to go! Try get some broccoli and kale in there if you can, they're very good for you, maybe hard to digest in raw form but in liquid form should be a lot easier
 
Yeah, I need to experiment with different vegetables and fruits in my smoothies so that I can see what my body can tolerate. I am not following my Nutribullet recipes because I did not think I could tolerate any of the vegetables that they used. I sent the recipe book to my Aunt because she was thinking about buying a juicer. I thought the NutriBullet would be a better option for her. Juicers are expensive and blenders are messy. I can still look up recipes on the Internet. Thanks for your support.
 
Ann have you ever tried raw soups? I have a recipe for cucumber soup, it's cucumber acacia do, dill, garlic, lemon and it's blended together and it's AMAZINg! When I had my setons I couldn't eat fruits or veggies either but blended I did better :)
 
Jay- the surgeon was basically going through surgical options to close or plug the fistula. Everything from plug, glue, to relocating my rectum, to colostomy. With the exception of colostomy all have a very slow success rate in small bowel Crohn's. He was basically suggesting it would be best to keep drain in indefinitely and said it would not close as long as drain was in and if he took it out another abscess would occur. I saw my GI today and he disagrees. He still thinks Remicade is the best hope and may want to add 6 MP too. As far as the clips I guess if this really turns into a long term thing I will address it. Not too keen on the idea of replacing it though. Will have to see what happens next I guess.
 
Well looks like I have another r ectovagional fistula which makes two that we know of, and I have a new anal fissure. I had forgotten how painful fissures can be. Can anyone share their experiences with fissures with me I.e., what you did for treatment, what helped with the pain, what helped it heal. Also I guess because of the methotrexate and/or cimzia I have several mouth sores right now. Has anyone experienced those? Seems weird that the medicine is working well enough to cause mouth sores but instead of healing my flare im growing new fistulas/fissures. Pain shared is pain lessened I hope!
 
Melissadempsey728 said:
So was still freaking out so I figured I would call my Dr's office to get some peace of mind, figured it can't hurt. So I called and talked to my Dr's medical asst, and she was like okay I'm going to just have him call you and speak to you directly. So he did (he seems like such a nice Dr) and he said that the CT scan showed multiple multiple fistulas because of the inflammation in my rectum and colon (OMG I just about had a panic attack) but then he said that he is already starting to work on the insurance company to get me approved for remicade, he said with confidence that it will change my life and believes 100% that it will heal me. I am a little uncomfortable believing 100%, but I am relieved that he is so sure that it will help.
Click to expand...

I can totally relate to your first post. I have one peri-anal fistula, and worry the original abscess turned into a fistula because I waited too long to go to the doctor because of feeling embarrassed about the location. I have a seton and am on Remicade now, for over a year. Unfortunately the fistula as not healed, but the Remicade has made me feel much better, and I don't have pain any more down there. I'm not sure if they'll keep me on Remicade though if things don't improve (I also have stricturing in the small intestines that doesn't seem to be going away either). They added 6MP about six months ago, but I can't tell any difference. It's very disappointing and frustrating, and I struggle to stay positive about it, but I do feel pretty good otherwise, so things are not that bad really.

A few months ago I got a new abscess, and that was VERY discouraging. I couldn't stop myself from crying in the doctor's office when they told me, which I hate doing. I was just so shocked and couldn't believe with all the medications and baths and diet changes, this was happening yet again. But after a few weeks on antibiotics it went away, and I haven't felt it come back, so I'm very relieved.

I still worry that I'll get more fistulas now though, and wonder if the one I have will ever go away. It's hard emotionally, and since this disease seems to get worse with stress, worrying about the disease seems like a catch-22.

Wishing you lots of luck and sending hugs!
 
Please add me. New to the forum but not to Crohn's disease. Feel like I've been kicked in the crotch with all the disease in that area. How do they treat abscesses/fistula? Had a fistula 20 years ago and the fixed it sugicallybut I think I have another, any new modern treatments?
 
Well I am now inpatient at the UVA digestive health center. There going to fo some tests and if all goes well ill start my first entyvio infusion here. This is the first time ive experienced Crohn's mouth ulcers and they are horrible. The inside of my cheeks and lips are so inflamed that my whole face is swollen.
 
aimeey17-does the Entyvio infusion take a couple hours like Remicade? Hope it works for you! :ghug:
 
aimeey17 said:
Well I am now inpatient at the UVA digestive health center. There going to fo some tests and if all goes well ill start my first entyvio infusion here. This is the first time ive experienced Crohn's mouth ulcers and they are horrible. The inside of my cheeks and lips are so inflamed that my whole face is swollen.
Click to expand...

Mouth ulcers are awful. Hope you start feeling better soon.
 
uceris, baths, and stopping the diarrhea healed my first 3 anal fissures. I have another one now and im in a bad flare so i have to wait for my bowels to calm. then its baths, nitro cream, a and d cream, and or wheatgrass cream. Dont forget the baths!
 
dear livingthe life: I also had a fistula ( an anal fistula ) quite a few years ago ( in 1992 ). I had an operation to take care of it. I have not had another fistula since, but I have had two rectal abscesses and I had surgery on those too and I have not had an abscess for five years.
 
dear aloe: I read your story. Every time I feel some sort of sensation or anything down there in the anal/rectal area I freak out. I keep thinking that it could be another rectal abscess ( I had surgery on one in 2002 and again, on another one, in 2009 ). I honestly hate anyone touching me in that area unless I am totally sedated. I had a bad experience with a colon and rectal surgeon back in 1992 and so now I am afraid of examinations in that area. The first abscess I had was terribly, terribly painful and I did not know what it was. When I got the second abscess I knew exactly what it was and I actually went right to the Emergency Room, I did not wait days or weeks to see a Specialist Doctor.
 

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