Healing from Anal Abcesses and Fistulas?

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bluemom51
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 7/27/2009 3:43 PM (GMT -7)   
Hello, I just discovered this site and have been encouraged from hearing about others who have experienced the unpleasantness (being polite) of an anal abcess and fistula.  Lately I have been feeling like I should just give up and end it all, but then I have read the courageous stories of those who have suffered much longer and much more pain than I, and so I am trying to "buck up" my courage and learn to deal with this.
 
I had a large abcess at the end of March and had day surgery.  Then in mid-June surgery where the surgeon put in setons or c-tons?  I saw her last week and she said just to sit in water a lot and she was leaving them in for now.  I wish she would communicate with me more - all she ever says is that I had a large abcess (golf ball size) and these things are "complex".  She never does anything but look at me with these sad eyes. I guess I have a fistula but she never has said one way or the other.  I don't think I have Crohn's, but I may have a little IBS.  She didn't give me any antibiotics or other medicine.  Should I be taking something?
 
Is it really possible to ever have these things heal?  I just feel so discouraged and hopeless, and then I feel guilty for feeling that way - It's really driving me crazy.  Any hope you could give me would be greatly appreciated.
 
Female, 58, scared and anxious in Texas.

chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 7/27/2009 4:52 PM (GMT -7)   
So sorry you are going through all of this! And welcome to healingwell!!! What does your gi say about all this? Have you been to one? Why do you think you don't have crohns?

If you have a seton in, then you definitely have a fistula. The seton goes in a fistula. I have a seton also and it will be 3 years old in Sept. I have had about 8-10 abscesses (which the first one was the size of my surgeon's fist!), and about 5 fistulas over the last few years. I just have the one fistula now with the seton in it. As far as meds go, you need to ask your gi. My surgeon doesn't have me on any, but my gi does. I would look for another good colorectal surgeon who will communicate better with you and help you understand what is going on.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 7/27/2009 5:18 PM (GMT -7)   
Hi Bluemom51!

Welcome to the forum! Unfortunately, anal abscesses and fistulae are common whether you have Crohn's disease or not. My colo-reactal surgeon said about 50% of the population gets an anal abscess in their lifetime. He said you don't hear about them because they aren't exactly dinner party conversation material(!).

It sounds like your doctor does know about proper treatment if she placed a seton. These little thing keep the fistula and draining rather than closing and abscessing. It is quite possible that eventually it can be removed and the fistula will close. But for now the abscess area just needs a lot of time to heal (which I am hoping was properly cut open, scraped out, and left open to heal). I had a very large abscess and it took several months. I am giving two good links that describe the treatment of abscsesses and fistulae. Make sure you click on all the pages.

http://emedicine.medscape.com/article/190234-overview

http://emedicine.medscape.com/article/191975-overview

I strongly suggest you search previous posts on the setons and abscess. We have had excellent discussions of how to treat, clean, and live with these things.

http://www.healingwell.com/community/default.aspx?m=1371374&f=17&p=1
http://www.healingwell.com/community/default.aspx?f=17&m=1244150

Patience is key! It will heal! You will get better! Believe me when I say I went through the ringer and now am doing quite well!

Let us know how you are doing. Take care!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


bluemom51
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 7/27/2009 6:48 PM (GMT -7)   

Thanks for the responses.  My gastro doctor doesn't want to be involved - he just said to let the colon-rectal surgeon handle it.  I did see one other colon surgeon to see if I could find someone that would talk to me, but she got mad and mean when I mentioned that I was very anxious about all this.  She said "let's just stick to the physical facts and not get involved with any emotional issues" in a very mean and abrupt way.  Did not go well, obviously.  I like my colon doctor and suspect she won't talk to me because the last time she said we had to do surgery again, I shed a few tears, and I think it made her uncomfortable.  I don't think she really knows how all this will go - good or bad - and she doesn't want to upset me talking about the "unpleasant" possibilities - just a guess, but she is nice and is a partner with one of the most respected colon surgeons in the area.

Based on what I've read on this forum, these things can take much longer to heal than I had assumed.  I had thought I would have the surgery and be just fine in 4-6 weeks, but this area must be different than surgery in other parts of the body - lucky us.  I need to figure out a way to be a "big girl" about this, but I don't handle surgery well - the IVs are always a disaster and I don't recover well from anesthesia.

One other question - does anyone know if it's ok to exercise a little when you still have setons in?  I'm way overweight and can't do anything really drastic, but was just wondering if it would be ok (like walking slowly on an elliptical) or if exercise would upset everything down there.  Thanks for your input and suggestions.  It means everything to know you're not alone - it's certainly not a condition you can go around sharing with everyone.

 


bluemom51
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 7/27/2009 6:52 PM (GMT -7)   
Oh, I forgot, I don't think I have Crohn's because I don't really have any of the symptoms like diarrahea (sp?) and others.  I had a colonoscopy 2 years ago and everything was fine, and my surgeon didn't see any evidence of it.  She just keeps mentioning that I have some sort of spasming down there.  I do have a fissure that hurt a lot until I started using Miralax for slight constipation.  The Miralax has seemed to help things settle down and it's easier and less painful to go to the bathroom now.

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 7/27/2009 6:58 PM (GMT -7)   

Hi Bluemom,

 

I just wanted to say welcome and that things will get better, they just take time. You are lucky to have had a seton inserted, I was left with a negligent GI who had me returning to the ER again and again to have it drain a bit and then re-abscess, I was in excruciating pain for months and could barely walk before I took it upon myself and tracked down a great colo-rectal GI. I’m 23 and was trying to hold down a fulltime job so it was difficult, to say the least.

 

I have just come off antibiotics (flagyl and amoxicillin) which I have been on for about 7 months. My abscess first appeared in November of last yr and never really left me alone, kept coming back. After a long journey, it is doing well (I ended up having a mushroom drain inserted into the abscess cavity as it continued to gather sepsis even after the initial seton was inserted). Those setons are wonderful things. I pleaded with my old GI to let me see a colo-rectal surgeon (my GI didn’t even know about setons and their existence, he told me ‘we don’t do that in australia’!) – I am glad you have one in there because they are blessings in disguise. Mine is bright red! My mushroom drain is a large tube and it has been in for a couple of months, it helps things heal from the inside out, and hopefully, if all goes well, my drain and mushroom will be coming out in the next couple of months.

 

My advice would be to monitor the situation (my initial seton worked for a week and then more abscess began to form, so I got in there quick-smart and got another drain inserted) – and try to track down a colo-rectal surgeon who specialises in crohn’s/inflammatory bowel diseases…. They really understand. As for the meds, I am surprised they didn’t put you on any anti’s to lower infection and help control it – I have been on antis for months. Maybe It would be worth asking your dr next time why they did not think this was necessary?

 

How is your pain level at the moment?


ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 7/27/2009 7:44 PM (GMT -7)   
It might cheer you to know that abscesses and fistulae have a much better chance of healing in patients who do *not* have Crohn's, so I think you'll find that your long-term prognosis might be good :-).

In terms of exercise, I'm pretty sure that should be ok. Of course, you can ask your doc if you're concerned, and always start slowly and gently until you can find a level of activity that doesn't hurt you.

fwiw, I'm usually out and walking around pretty soon after any of my seton ops. I think it's important to stay active and healthy. Remember, you lose 3% of your strength for every day of inactivity! (I read that yesterday; scary, isn't it?)

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 7/27/2009 9:13 PM (GMT -7)   
Exercise is fine with a seton...I started a week after mine was inserted. I wouldn't have excpet that I had signed up for a body challenge. So for the next 6 weeks I worked out hard, and I mean hard! It paid off, I came in 5th place even with crohns and a new seton. :)

For the record, I have constipation issues also, and just because you had a clean colonoscopy 2 years ago doesn't really mean anything anymore. There are alot more tests out there for crohn's...not trying to be a downer, but just wanted you to be aware.

bluemom51
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 7/27/2009 9:34 PM (GMT -7)   
Thanks, everyone, for your comments.  Am I the only one whose doctor said not to bother with antibiotics?  It just seems logical that if you have an infection that is still there and you are still recovering from - shouldn't you be on antibiotics?  Maybe that's an area that it doesn't make much difference? - but it seems like there are a lot of people on them.  Maybe if you have a seton you don't need them?  I'm still confused about this cause it doesn't make sense to not be on antibiotics???

bluemom51
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 7/27/2009 9:43 PM (GMT -7)   
Oh, I forgot again.  The first surgery I had was for the large abcess.  She said since it was in the direction of the vagina, she did not want to make a big cut.  So she made 2 small cuts - one at the top and one at the bottom.  Then she put drains in both areas for 2 weeeks, and then took them out.  Six weeks later, there was some infection drainage, so in the 2nd surgery, she checked to see that it had not gone into the vagina, and she cleaned the areas, and put the seton drains in to "hopefully allow the body to heal from the inside out".  I was freaked out that she was leaving the setons in "for a while" until I read comments on this forum and learned this is not a horrible sign of healing failure, but sometimes normal procedure.  She keeps talking about some "flap of skin", but I can't understand what she's talking about - only that she is "trying" to let stuff heal up without "laying things open" and causing unnecessary damage to the area?  She's never used the words "cutting seton" or said anything about "tightening" the setons.  What's weird is that I remember coming out of recover the second time and my husband telling me that I did not have a fistula.  Maybe she put the setons in to help what was left of the abcess to heal cause it was "large and complex".

PSA
Regular Member


Date Joined Jan 2009
Total Posts : 498
   Posted 7/27/2009 11:13 PM (GMT -7)   
Hi Bluemom51

Sorry to hear about your abscessing fistulas. Well I too have a complex horse shoe fistula, communicating with my J pouch and hitting the root of my pe... I know it is quite painful, but I have not been able to find a proper cure so far. Anyway, have become used to. My abscesses used to be as big as a cricket ball, on both sides of my butt.

If it is not crohn's then the treatment is much simpler and you need not worry at all. Another thing which I realised is that in case I eat too spicy or sour food, my fistula becomes an abscess and causes lot of pain, the very same day.
45 years Male Attorney
Diagnosed UC October 1989
 
Had two stage J Pouch Surgery Nov 2005; Take Down March 2006
Complications after surgery - Incisional Hernia and Ano Fistulas
 
"There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle: Albert Einstein
 
"What you are aware of you are in control of; what you are not aware of is in control of you."
 


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 7/27/2009 11:20 PM (GMT -7)   

Hi bluemom,

 

My abscess was large too, and I also had to have a second drain put in because there was left-over sepsis. My seton has been in for over 4 months now and I don’t even feel it there. I have heard they can be left in as a life-long thing too, just changed every few years, but it sounds as if yours are being put in as temporary measures.

 

I initially had 2 setons, but one was a ‘cutting seton’ (looked just like other one), and it laid open a bit of skin in between the abscess and my top skin…. I didn’t even realise it was doing this until it came out during my 2nd surgery.

 

I do think the lack of antibiotics is strange. When I was recoving from my 1st surgery, one of my drs told me I could come off the anti’s, so I did, and man, in that week I went downhill and fast – the infection grew at such a faster rate, I could see it blackening beneath the skin, and things got worse so much quicker than they would have if I’d been on the antis.

 

A GP could prescribe you flagyl and amoxicillin if you are worried about asking your GI again, but I am not a dr so I would definitely ask them first why they have not put you on antis to help control the inflammation. I know with abscesses they are pockets of infection, so the antis can’t get to them like they can get to normal infections, but I am sure they can still help control the sepsis. They did in my case and I’ve been on them for months.

 

Mr drs were also hesitant to cause damage to that delicate area, the muscles are very tricky I do believe. In my case they were worried about unnecessary damage causing incontinence. At least your dr sounds like she’s being cautious and not just going in gung-ho and cutting away at things. I hope you find some answers and relief soon; these things are just awful to deal with.


*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 7/27/2009 11:22 PM (GMT -7)   
I just had a thought: maybe they're not prescribing antibiotics because you don't have crohn's? Perhaps us crohnnies have been prescribed antis because we have so much inflammation already running around in our blood and in those downstairs areas.

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/27/2009 11:27 PM (GMT -7)   
I just wanted to let you know that fistulas CAN heal. Mine healed with Remicade, Imuran, and 6MP. Unfortunately, they reopened eventually when I stopped the meds. Most recently, my fistulas healed when I started eating the Specific Carbohydrate Diet. There is still a tiny, hard, scar-like spot where one was, but it has been closed for a few months. The other 2 have have completely disappeared *knocks on wood*.

Also, I believe the antibiotic Flagyl is helpful for some people to close up a fistula. But if you go the antibiotic route, definitely make sure you take some probiotics too so that the good bacteria in your gut don't all die off.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


Music Mom
New Member


Date Joined Jul 2009
Total Posts : 1
   Posted 7/27/2009 11:29 PM (GMT -7)   
This is my first post on this forum. I'm touched and amazed at what many of you have gone through. I am the mother of two children with Crohn's Disease. My daughter was diagnosed when she was 9 years ago. She has been on Remicade for the past 6 1/2 years, and she is now 18. Remicade has been a miracle drug for her, even though she has had some setbacks along the way. My 21 year old son now has Crohn's and was diagnosed about two months ago. Our whole family is reeling from the fact that we now have two children with Crohn's; it doesn't seem real to us, but it is. My son had surgery last Friday to have a seton placed in a fistula that exits to the left of his rectum. He had his first Remicade treatment today. He has been in a lot of pain, physical and emotional, over the past two days. I guess I'd like to know how any of you coped with having this foreign object (the seton) placed in your body and its constant presence and interference with bowel movements. He is on pain medication, but he almost passed out tonight from not only the pain of a bowel movement but the whole "weirdness" of having this THING! He is very athletic and has his own lawn care business while going to college; I'm so thankful that he does live at home and commutes to school. He's always been able to do anything he wants to do and is feeling really down right now because he's not just bouncing back from this. He has good doctors and a wonderful surgeon, but I don't think they prepared him very well for the pain and the emotional difficulty he would have with this procedure. The drainage is another annoyance. His GI doc said that he should see improvement after the second Remicade, which is in two weeks. He is also taking Entocort, Flaggyl, and Cipro.
I can honestly say that each of you needs strong support from a family member. I am on the phone daily with medical professionals because my son just simply hasn't felt like dealing with this new world he's been plunged into. Taking medications, setting up appointments, asking questions, and getting information has been a full time job over the past two months. You also need a doctor that is a GI/Crohn's specialist who will work collaboratively WITH your surgeon. Blue Mom, it sounds like you've had some jerks for doctors. The one who only wanted to deal with the facts of your physical symptoms and none of the emotional issues truly doesn't get it! That response to your concerns was totally unacceptable. Don't accept it! You deserve BETTER than that, and I encourage you to settle for nothing less.
Any advice on dealing with the seton would be most welcome. God bless each of you as you deal with your own unique version of Crohn's Disease!

*Phoebe*
Veteran Member


Date Joined Sep 2005
Total Posts : 769
   Posted 7/28/2009 12:21 AM (GMT -7)   
Hi music mom and welcome to the forums!

I feel for your son, I just had my 1st seton experience a few months ago and after dealing with such excruciating pain for so many months, I was relieved to finally find a GOOD surgeon and dr, but gosh it took years to find them, and I was neglected until that point, my condition saw me in and out of ER’s with little or no answers and this hellish abscess, just more antibiotics and sent home again…. I am so grateful I finally found an excellent, trustworthy team. I am only 23 too and 1st got crohn’s when I was 19 and in my 1st semester of uni. I know how awful it is, how scary it feels, to have this weird thing in your butt, but just tell him it is definitely for the better, and pretty soon he will forget it’s there and won’t feel it at all.

After finally getting my seton surgery, I, like your son, was really withdrawn. I didn’t speak to anyone for a couple of days. The ‘hole’ it left looked enormous. When I 1st got home from the hospital and took the dressing off, I nearly passed out I was so shocked at the hole I saw, and these plastic things in there. I was so freaked out. Going to the toilet is very painful for the 1st wk or two after surgery. I cried every time. Someone on this board recommended I buy a flexible shower head which can be attached to a bath, and I am so glad I took their advice; because this is definitely the most sensible option when you’ve just had a seton put in. Use the showerhead with warm water instead of wiping. It is embarrassing and feels weird at first but your son’s poor bottom will thank him for it, and allow him to heal.

Make sure he has saltbaths (warm ones) too! I used a big bowl which I could squat in, provided much needed relief and encourages healing…

More than anything I just wanted to welcome you because I know how scary it is, both for you and your son. Just remind him: this is the hardest part, it is uphill from here, he can begin to heal now!

PS86

spookyh
Veteran Member


Date Joined Oct 2008
Total Posts : 1342
   Posted 7/28/2009 1:06 AM (GMT -7)   
I second the epsom salt baths! Even though my fistulas are healed, I still take them because they're so comforting and help make the aches and pains go away.
34 years old, Crohn's disease for 15 of them
Current Meds: Humira since 7/08, Pentasa, Effexor XR
Supplements: 3 kinds of Fish Oil, Multi-Vitamin, B-Complex, Vitamins D, E, & K, Calcium, Magnesium, Enzymes
SCD since 12/01/08 - eating Stage 3 foods


chroniemomx2
Veteran Member


Date Joined Apr 2005
Total Posts : 2346
   Posted 7/28/2009 6:45 AM (GMT -7)   
Music Mom...so sorry to hear about your kids! There would be nothing worse than watching your kids have to deal with this disease. A few seton tips for your son. I buy 4x4 12 ply gauze sponges at a medical supply store. I take 2 of them and fold them inhalf and then tuck in my crack up against the fistula/seton. It collects the drainage and keeps my skin from getting irritated. Then I just just change it whenever I go to the bathroom. At first I always used a handheld shower head to clean the area after I pooped...for the first week or so because it is tender, but after that I just wipe away with no problem or thought to my seton. I do what I want with it and it doesn't interfere at all. My seton will be 3 years old in Sept. Also soak in the hottest water possible as many times a day as he can....for the first few weeks. Tell him to hang in there...it will get better!

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 7/28/2009 7:30 AM (GMT -7)   
I totally agree with everyone that there is a great emotional toll that comes with abscesses, fistula, and setons. It really can knock you off of your feet and slam you to the ground. Abscesses take a long time to heal. Fistula make it worse because of what continues to drain out, and seeing the seton just leaves you speachless.

One of the hardest aspects to deal with is that during this season of time, your life will change. You will feel fatigue because of the infection and inflammation. You will spend more time with doctors and with dealing with physical issues -- it will feel like a new career. You will feel so impatient!! And you will cry. Unfortunately, this is all typical. I think doctors do a great diss-service by not warning us about all of this. Think of all the people who don't find a forum like this one. They must feel so lost and perplexed. I found I had to re-set life expectations. It was going to take months to heal and that was normal. I was going to be fatigued and that was normal. And I wasn't going to be physically active for a while and that sucked but was normal. I just came to the realization that what while some surgeries and problems heal in a matter of days or a week -- this was definitely not one of them!!

Music Mom - I so feel for your son. So young! I am so glad you are there for him! Sitz baths several times a days really do promote healing -- and this means sitting in a hot tub of water for 10-15 minutes at lest 3 times a day. Sitting in hot water gets the blood moving into the damaged areas. I definietly recommend a hand-held shower sprayer to use after every toilet use. I put one foot in the tub and one foot out, then sit on the side of the tub, and gently spray everything clean. Get soft clean guaze 4x4 inch and fold it around both sides of the seton. This pads the seton so it won't shred your skin. You will go through a LOT of guaze - go on-line and buy it in bulk. He will get used to walking around with guaze wedged between his butt cheeks. And wear a light pad to catch and drainage. If his skin get irritated from the drainage, use baby diaper rash ointment. I am sure he will find this humiliating, but no one will know except you, and what are mothers for except to know embarrasing things?? ;-) Once he learns to manage this, he will do just fine. My doctor said you can do as much physical activity as you feel up to. Create a supply kit he can carry in the car -- a small spray bottle to spray around the setons (not a mist, but one that sprays), guaze, pads, and flushable alcohol-free wet wipes. This kit makes me feel I am ready for anything!!

Hi Blue mom. My surgeon says that if the tissue is not infected, then you don't need antibiotics. If you are running even a low-grade fever, I would press for antibiotics. Flagyl is great for infections with rectal involvement -- it is strong but has has side effects you just need to deal with (they go away once you stop). Cipro or Levaquin are often used in combinaton with flagyl. I personnally would ask for them just in case. Just being pro-active based on my experience. I am praying that you don't have an underlying disease like Crohn's but are just one of the millions who get one abscess in their life and then never have one again!!

Take care everyone!
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


bluemom51
Regular Member


Date Joined Jul 2009
Total Posts : 25
   Posted 7/28/2009 11:25 AM (GMT -7)   

Since my doctor gives me no info, I need to ask a couple of more questions.  When you have had an abcess and then on a 2nd surgery, the doctor puts in seton drains, is it normal when you press on that area with damp toilet paper to not really wipe hard but just to sort of clean, that there's a small amount of blood every single day.  Her nurse said not to worry about it unless it was a lot or not bright red, but I was wondering about actual other patient experiences.  Every day it really upsets me and I start freaking out and my anxiety just skyrockets, because it seems like there shouldn't be any blood six weeks after the last surgery.  But maybe since the setons are still there and supposedly things are staying "open" it is ok.  But does that mean that nothing is healing?  I feel like I'm losing my mind with worry.......aaaaaaggggghhhh. Also, does anyone else find that the drainage, even though small, irritates the skin down there even with the gauze which also feels kind of irritating.  Everything down there kind of burns all the time.

Thanks for your help.

 


Iram
Regular Member


Date Joined Jul 2003
Total Posts : 145
   Posted 7/28/2009 11:41 AM (GMT -7)   
Dear all, let me share my experience. I first discovered that I CD only by developing an abscess and fistula (periannal), over a period of almost a year I went through several drainage surgeries, antibiotic therapy. When I first had, I used to severe night chills, sweats, fever, and I was so badly fatigued and could not move a limb. Eventually, they placed two setons and the fistula drained, but since then I have been dealing with CD and perdnisone treatment. I haven't tried remicade yet, I am saving it for eventuality, but all indications suggest that it is very good in treating fistula. Yes, sitz bath helps a lot, I did a lot of reading in the bath and sometimes I would even fall sleep in bathtub.

Now each persons CD is different from one another, they way inflammation works in ones body varies by person. So in my case, it is a soft tissue inflammation which periodically blocks the small bowels and it requires hospitalization and it is concentrated on the ileum. Overall, dealing with CD is such a challenge. I second what music mom has said earlier, every week I deal with some doctors appointment, some medication, procedure, something or the other. I also spend a lot of time researching and reading this forum, looking for the magic bullet (which I know does not exist). The biggest challenge is to realize that we are going to live with this thing rest of our lives and take it to grave with us.

FallColors
Veteran Member


Date Joined May 2007
Total Posts : 1220
   Posted 7/28/2009 1:01 PM (GMT -7)   
Hi Bluemom,

Actually the little bit of blood sounds normal to me. I think the body is getting rid of old infected tissue and other stuff as it heals. Remember the body brings in blood and the red and white blood cells heal the area -- reforming it. It needs to get rid of old junk tissue, so it drains out the seton. It seems worrisome because we can't see or control what is going on (and that is what often drives us crazy -- not being in control). Think of the renovation work your body is doing!! So just relax (stress can slow healing). Now if something changes and it starts going in the wrong direction (fever, the area becomes ouchy), then do not hesitate to call that nurse. They understand how stressful this can all be. They usually are very compassionate and can guide you through it.

As for the irritation, this is quite normal too. Try liberally applying baby diaper rash ointment with zinc oxide. It is soothing and creates a barrier between the skin and the drainage. If it doesn't work after a couple of days, you may need a prescription. I got the worse case of diaper rash! My doctor's nurse practitioner gave me a prescription for an anti-yeast/fungal because that is what diaper rash is. It curred it fast!!! Once the yeast/fungus is in the skin (not on top), you need more than a topical treatment. I would call that nurse about it.
Diagnosed with Crohn's in early 2007.  Several peri-rectal abscesses and two fistulae with setons.  Allergic to Remicade and Humira.  Currently on 6MP, and vitamins D and B-12.


Ali-D
New Member


Date Joined Nov 2006
Total Posts : 14
   Posted 8/31/2009 11:33 AM (GMT -7)   
I am so glad to see this thread- I am 47 w/ Chron's and 3 weeks post fistula seton drain surgery. Having this disease for 20 years and being a health care professional did not prepare me for this. I never heard of it as a complication until I woke up out of my anesthesia- and then to see it- that hole- was completely emotionally devastating. I am trying to wrap my head around the *goal* is healing and it can take several months or longer! I feel like a freak- I cry everyday and have secluded myself inside my house. I feel like I'm in mourning. I realize now I need to come to grips with it all- that is at least accept what has happened and figure out a way to move forward.

Tcapp
New Member


Date Joined Oct 2009
Total Posts : 2
   Posted 10/3/2009 8:02 PM (GMT -7)   
Hi everyone. My name is Tony. I am a Crohn's patient. I've had the disease for 47 years. I am reading your sad experiences with abscess and fistulae. I have suffered with these complications and have had numerous outpatient surgeries to alleviate the pain. I've been advised to soak several time a day and all this was helpful to a certain degree. My gastro guy said I would NEVER have complete healing and implied that I just might as well learn to cope. He wasn't being mean just realistic. Then I was introduced to Remicade by this same gastro doctor. I resisted this new treatment at first because it's expensive and it was new, as in no long term trials. After the outpatient surgeries there was always a brief period of healing and relief but because of the continuing disease and primarily because the area is always moist and there is the ever present drainage. Maintenance was a constant part of my daily routine. After my first treatment of Remicade I experienced the most dramatic healing possible. That night I could feel the healing taking place. That abscess was healed completely in a matter of days.That was 6 years ago. I have not had to have additional Remicade treatments since. I don't wish to bring false hope to anyone because as it was explained to me not everyone will respond so dramatically, however, many do. I continue to wash the area with warm water and an antibacterial soap at least twice a day this is helpful because the diarreah has not gone away. There is also an accompanying feeling of well being months after the Remicade treatment. I really hope this brings some badly needed relief to many of you. I wish through this posting to enlighten many. If you fit the profile for Remicade use and your doctor hasn't suggested it to you perhaps you should go shopping. Be proactive in your care and this disease can become far more tolerable. Best wishes. I am not a doctor. I have no affiliation with the manufactures of Remicade.

jobell
Regular Member


Date Joined Feb 2012
Total Posts : 29
   Posted 2/19/2012 11:14 AM (GMT -7)   
My issuses with a perianal abcess which had to be operated on 4 times now, has turned into 2 fistulas.  I have had the fistulas banded Nov 2011 and have had 2 follow up appt with the surgeon for him to retie the bands as they had come untied. My last appt was this past Thurs Feb 16th in which he had to retie the bands incside the incisions.  It is now Sunday and I awoke to go to the toilet and the bands had fallen out. The were still looped and tied so this means the went through the fistulas.  I had extreme pain from Thurs til Sun.   Is this normal for them to fall out???  According to my surgeon I was to see him again in 6 weeks to have them tightened
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