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crohns and perianal disease, fistulas, abscesses

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Posted 10/19/2009 5:25 PM (GMT 0)
Is there any one that has crohns with perianl disease, fistulas and abscess. What therapy/treament are you receiving?
Posted 10/19/2009 5:41 PM (GMT 0)
remicade treatment early for fistulas may help..My experience is any abscess in vicinity of anus can be drained, ... for abscess with bowel complication the treatment is surgery with affected bowel removal. After disease reoccurance at reconnection, i got an illeostomy, the remaining issues were alleviated (all areas around anal area healed also had subsequent rectum removal, even though my rectum was somewhat spared by crohns). Time span between first surgery and last is about 24 years for me. The treatment other than surgery, doesn't matter if you ask me. Unless you go on a very serious lifestyle change (such as 1 year off paying 100+% to your health, and diet) surgery is the treatment. just my opinion and experience.
Posted 10/20/2009 12:28 AM (GMT 0)
Hello Comfort! Welcome to the Forum!

You will find lots of us have perianal Crohns Disease (CD). I am on 6MP right now and doing well. I had three abscessess with surgeries over an 18 month period, but have been abscess free for 18 months now. What is your story?
Posted 10/20/2009 1:20 AM (GMT 0)
I have a question for you all. I was diagnosed with Crohn's primarily in the rectum and it seems to respond relatively well to canasa. I've been on 6MP for 4 months, haven't noticed any changes for the better and I'm tired of feeling like a chemo patient all day long.

Here's my question: I know that most peri-anal abscesses are very painful and once they are drained the pain is significantly reduced. I have had several abscesses that drained on their own and I have a little build up in scar tissue where they drain on occasion. At the 9 o'clock position I have what appears to be a fissure looking ulcer that is hidden in the folds. My doc claims he can never see it, but I know he isn't looking hard enough. Most times I can produce slight pus discharge if I push along it. It is well hidden, and a little farther into the canal. The discharge is more pronounced on the days when it hurts. Some days I don't notice it all. There is no palpable mass or abscess that I can feel. Only the little ulcer looking fissure. Do you think this might be an abscess in one of the glands that just drains all day or a relatively pain-free fissure. I've had an anal fissure before and it hurt like crazy!! This is relatively benign with regards to pain.
Posted 10/20/2009 2:23 AM (GMT 0)
Hello Former58D,

I am not a doctor of course, but your symptoms sound very much like mine did when I first started having problems. I had no clue then, but I had an abscess that drained. Even after the abcess had drained, I kept getting drainage out of a whole in the perineum. I ignored it like an idiot, but it didn't seem that bad. I thought I had a vagina ueast infection. I could push on the area and get drainage. I had never been sick before and just thought it would go away. Well, the drainage stopped and within days the whole area got inflammed!! Ouch!! A trip to the ER and then on to a general surgeon who in my humble opinon was a bigger idiot then I was. He totally miss-managed my condition and mis-diagnosed what I had. I was very, very sick. I finally got in with an experienced colo-rectal surgeon and he turned things around for me! I learned I had a fistula that continually drained the abscess area. I needed surgery to open abscess so it could be cleaned out. Now I have a seton to keep from getting another abscess there. I feel so much better!!

Does this sound at all similar to what you have?? Are you seeing a colo-rectal surgeon who knows Crohns? Also, I am on 6MP and it does take up to 6 months to really kick in. But it or antibiotics won't get rid of an abcsess. It takes surgery to open up infected area the body has walled off (which prevents antibiotics from getting in).

What does your doctor think you have? By the way, some fistulas are hard to see and they can use dyes to find them (they take you into the OR and put you out and then infest dye and see where it comes out.)

I hope this helps. Take care!
Posted 10/20/2009 2:48 AM (GMT 0)
FallColors: I'm thinking that it might be a fistula that drains an abscess but I never pass anything other than pus. No stool or anything like that. Did your fistula connect to any bowel or just the abscessed area? I don't really have pain except it feels "tight" every now and then which is marked by more drainage. I also don't have fevers or anything. Once you got the seton in, how did your situation improve? Do you have inflammation in the rectum? If so, did the seton help with anything other than the abscess? How was the seton recovery? Here's another weird thing: when the canasa suppositories start kicking in, the abscessed area feels worse although my BMs get much better. It's like I'm healing the rectum and sealing in the abscess from the inside so it has no where else to drain but through the other outlet (even thought I don't pass any stool). Thoughts?

I'll see my doc again tomorrow and I also have a referral to see a colo-rectal surgeon in the works.

Here's another strange thing (I think they are all connected): I had shoulder surgery in March and I had IV antibiotics during the procedure. For the next several days post surgery I had the most normal BMs that I have ever had post diagnosis. My doc thought it was just because my "mind was preoccupied" with the surgery, but part of me believes that the IV antibiotics did something due to the immediate but short lived change for the better. Those antibiotics are not the normal ones used with gut bacteria, but the change was so drastic I was amazed. I've done cipro several times but it doesn't seem to do anything but tear my stomach up.

I really think the 6MP makes me feel like crap. We'll probably discuss Humira and Remicade tomorrow.
Posted 10/20/2009 4:31 AM (GMT 0)
Former58D: I have had a seton put in and it seemed to help with my abscess for a while but soon I just formed a new one. I have had a number of surgeries to drain one abscess that keeps coming back. I also drain continuously, I eventually had to get a colostomy in the hopes that if I stopped passing bowel movements it would lower the amount of infection in the area. I wasn't passing any bowel movements through my abscess but I went ahead with the colostomy and I can tell you that after having surgery every month or two for almost a year I have been abscess free for almost six months. I still drain though but I am beginning to feel much better. I can also tell you that Remicade was a dream drug for me in the beginning but after a few months of being on it it hasn't seemed to do much.
Posted 10/20/2009 11:32 AM (GMT 0)
dreamer06 - How have you adjusted to the ostomy? Did you have crohn's in places other than your colon?
Posted 10/20/2009 12:45 PM (GMT 0)
Dreamer! I am so happy you are feeling better!! Hang in there! It takes way too much time to heal but you will get there!

Hi Fomer58D. I had an abscess in my rectum, and a fistula tube formed from the abscess to the perineum. I would get white/yellow/brown pus stuff, sometimes bloody, draining out of the fistula, but never real stool. This means the fistula isn't large in diameter. I didn't have a fever either, but when the fistula got blocked, all heck broke loose!

Also, once when I was ignoring whatever was going on down there, I developed a bad sinus infection and went on a month of antibiotics. The sinus infection cleared, the drainage down there pretty much stopped, and I felt great! I know now that the antibiotics helped the infected tissue around the abscess but didn't cure it. Abscesses are walled-off pockets of infection and the antibiotics can't get in them. After stopping the antibiotics, the drainage started again -- the abscess cavity was still there and the tissue around it and around the fistula was infected. The abscess would fill and then drain sometimes several times a day. Surgery got rid of the abscess cavity (they cut it open, scrap it out, and let it heal from the inside out). I still have a fistula tube that runs from the rectum to the perineum, so stuff from the rectum still drains out. Once I got the setons, the stuff freely drains and doesn't not clog up and abscess. For this reason I love my setons! Placement and recovery isn't bad, and there are plenty of people here on this Forum that can help you through it if it comes to that.

about suppositories, I once used an enema and OUCH!! The liquid came through the fistula and it really burned!! I am wondering if this is hapening when you use suppositories.

The main thing is for you to get this taken care of ASAP. Please believe me that the longer you wait the worse this can get. Much worse. You really don't want to go there. Please see a colo-rectal surgeon who knows CD. I suggest ones associated with teaching hospitals. They tend to be up on the newest procedures and collaborate with other doctors. They also are on a salary, whereas surgeons in private practice get paid by the procedure -- so guess what they like to do (cut!). People with inflammatory diseases like CD don't heal the same way as non-CD folks, and surgeons experienced with CD know they have to treat us differently than regular people who get rectal abscesses (which are common, by the way). You can check out doctors on their websites and ask them what their experience is with CD.

I know this is all so uncomfortable and scary. Having doctors even examine you down there is uncomfortable at best. But I wish I had been smart enough to see a doctor early. The darn infection nearly killed me! This is why I am so concerned when I hear of others who have these problems. Please see a competant colo-rectal surgeon ASAP.

Take care and let us know how it goes!
Posted 10/20/2009 1:02 PM (GMT 0)
Former58D- this sounds so much like what I have been going through!
I've posted a few times about my saga, going on 4 years now that no one really knows what is going on with me. After suffering for 3 years, they FINALLY found a chronic rectal abscess, which was surgically drained. I had been going to PT for months because they thought I had pelvic floor dysfunction, and I'm convinced all that pushing and stretching caused the abscess to spread, and track around the back of my rectum, to the spot where I am now feeling discomfort. I do have a lump, on the right side of my anus, that wraps around to my tailbone. When I push on this bump most of the time I get a discharge of what I call pus- my doc is not sure what it is. It is also sometimes tinged pink or has tiny dots of blood in it. I think they have missed it over and over because the opening must be so close to the anus, and I think they are always looking up higher.
I also had an unrelated surgery, with IV antibiotics, which made me feel loads better for about a week.
I've been on cipro and flagyl for about 2 months, weaned off the cipro, tried to wean off the flagyl, and my bump enlarged again and started giving me real trouble.
Now I'm just waiting... for my two surgeons to get together on the phone to figure this out. I've never run a fever, but have felt horrible pain for years- no sex, no more running- just waiting to feel better... curious to hear what happens with you!
Posted 10/25/2009 4:00 PM (GMT 0)
Well my story is I was diagnosed with Crohns in 1997 at the age of 41. Started taking meds sulfasalzine/alzafadine this medicine was very effective for 7 years. In the year of 2005 the meds begin to lessen it's effectiveness, during that time I began taking Reimcaid, which worked well for 2.5 years. At this time I have been referred to the Mayo Clinic in FL. due to developing perianal D. Doctors there perscribed Humiria and prednisone as of September. I've not seen the effect of Humiria. In the mean time I am experiencing dehydration, fatigue, nasua, diherria, cramping, hot/cold and sweats. I have learned with some patience, it can take up to three months before the effects of Humiria will show. Due to the having all these difficulties; I had to be hospitailzed for some comfort. The cramping and nausa has been controlled with pain meds and zopren. Right now! my biggest concern is the feeling of nausaous, cramping, and the waiting period to see if the Humiria will be effective. In spite of all I believe, I am going to be alright, in time!
Posted 10/26/2009 1:46 AM (GMT 0)
hello Fallcolors how old were you when you were diagnosed with Crohns? and have you experienced nasua feelings.
Posted 10/26/2009 1:47 AM (GMT 0)
hello Fallcolors how old were you when you were diagnosed with Crohns? and have you experienced nasua feelings.
Posted 10/26/2009 11:18 AM (GMT 0)

Good morning Comfort,

I was 48 when I was officially diagnosed.  On my birthday too.  Happy Birthday!  shakehead shakehead shakehead

I haven't had nausea as a symptom.  No real symptoms besides the abscesses and fistulae, and being low on vitamin D.  I have heard from others on this Forum that nausea is common in typical CD and also can be from some medications.

Take care.

Posted 10/26/2009 11:23 AM (GMT 0)
Hey Fall - did you ever D associated with your other symptoms?
Posted 10/26/2009 12:59 PM (GMT 0)
Hi Former58D,

I am not sure of your question -- are you asking about vitamin D or D-diahrea? The only D I had was with antibiotics. I was on flagyl and levaquin for several months (5) and, interestingly, the D lessened as time went on. I've been on levaquin several times since then and really haven't had D.

What I did have is effects from low vitamin D. Maybe that is my only normal CD symptom -- fatigue, muscle soreness, and feeling stiff and several thousand years old. Anyway, going on 2,000 iu/day solved all that in a couple of months. I still have a bit of fatigue and some brain fog, but I am getting old anyway!

My GI even questions whether I have CD -- except that a biopsy of tissue around the ulcer in my rectum showed granulomus tissue, which means CD. My GI said that it almost doesn't matter because the meds used to keep fistulae calm are used in CD and non-CD folks. Unfortunately, without typical CD symptoms, My GI and I can't tell whether the 6MP is really doing anything for me -- not that I want typical CD symptoms! But I haven't had another abscess since I started on 6MP, so I will stay on it. So what I have is rectal-CD, but I am blessed to not have the even the typical rectal CD symptoms.

Take care.
Posted 10/26/2009 1:48 PM (GMT 0)
I've been the fistula route and would COMPLETELY agree with FallColors about a teaching hospital....don't wait, abscesses do need attention and the sooner the better. A ColoRectal Surgeon is a MUST, don't settle for anything else...your health and preservation on muscles depend on it!!!

Remicade did the most good for mine, but sadly my body rejected it. I did live for 10+ years with many setons, Imuran, Cipro and an ileo...and that kept things under control for quite some time. It wasn't until things started flairing up again that I had my colon/rectum removed and really found relief:) My Crohn's had been primarily in my colon/rectum for that time, so I was comfortable with the surgery.

If you don't think your doc is finding it, find a doc that will...good luck!
Posted 10/26/2009 3:12 PM (GMT 0)
Hi Ohio,

Question for you -- were you on cipro long-term? Every couple of months I start to get cellulitis in the perineum. I'm guessing it is from the fistulae and or old abscess spots. I pull out the levaquin and it takes care of it quickly. My GI said maybe I should be on it full time (he said he has several parients on cipo all the time). I'd rather not take it all the time because I am concerned about bacterial resistance and loosing it as an antibiotic (I can't take flagyl anymore). Just curious about what you went through. Also, did you start with only rectal CD?
Posted 10/26/2009 4:32 PM (GMT 0)
Hi there, just wanted to reply to Comfort's original question.

My 16 year old son was diagnosed in the summer with Crohn's with his symptoms being mainly perianal abscess and fistulas (although he did have nausea and diarrhea in the beginning, that seems to be all taken care of with diet change).  Back in March when this all started he was put on Cipro and Flagyl which knocked the abscess back but when he came off of it at the end of June it came back even worse.  We started the Maker's diet in the middle of July and Low Dose Naltrexone at the end of  August, we've now kind of morphed into SCD instead of going to phase 3 of the Makers diet.    His abscess continues to shrink (but it is still draining), and one of his fistulas feels *dead*, the other one is now only tender at the drainage hole because a little skin sticks out, his good days continue to get better on this combo and his bad days are not as bad.    Hopefully in a few more months things will dry up completely and heal.  

 The pain and drainage was so bad in the summer that he didn't know if he would be able to sit in school all day - and believe me homeschooling my straight A grade 11 student was more than a little daunting-  we have seen so much improvement since starting the LDN and SCD, and can only hope and pray that it will completely heal the fistula.  After all the reading and studying I did on fistulas/abscesses I felt this was our only chance of healing it without pulling out the big gun medicines.

Posted 10/26/2009 5:11 PM (GMT 0)
FallColors--yes, it was 10 years of both:( I am allergic to Flagyl so that was no go for me, too. My CR Surgeon wanted things to stay as quiet as possible...I had had a year+ of surgeries every 4-6 weeks for abscesses and ended up with 5 setons at one time and slowly got down to 3 that stuck around. It did work really well for that time but eventually I decided for the final surgery. I would do it again, probably not for 10 years though, but I wanted every chance to reverse the ileo if things improved. My Crohn's started in my small bowel 20+ years ago and stupidly I went 'med free' for 10 years (I was young...silly me) so when it came back...it keeps on giving... it was mostly colon/rectal...I did have one resection about 11 years ago and most docs say that 10 years is a bench mark so I took my chances with the perm ileo.

comfort--dms40 brought up a good point of mixing meds and diet. I know it is very hard finding what works for your body and remember 'quality of life' is very important!
Posted 10/26/2009 5:32 PM (GMT 0)
Thanks Ohio. I may eventually try the advancemetn flap procedure, but for now I will stick with my setons.

Hello DMS40! Welcome to the Forum! I am so sorry about your son. Abscesses are difficult enough for adults to deal with, but at 16 it must be especially hard! Did a colo rectal surgeon open up the abscess?
Take care.
Posted 10/26/2009 6:26 PM (GMT 0)
Thanks for the welcome FallColors - yes my son has had some real downer moments dealing with the abscess, but as things are moving along now he is also in better spirits.  No surgery to open up the abscess - in fact we were pretty much left on our own from March - July (even after repeated calls to the Children's hospital Gi dept)  I learned later that they had lost his file, which was pretty upsetting at the time - but things work out the way they are supposed to right?   His abscess started draining at the end of June (fistula broke through to the skin),  it was about 3 - 4 inches long at that time, and is now less than a 1/2 inch.    (not that I'm checking - but he gives me updates once in a while - that was about a week ago, hopefully even smaller now.)

Does anyone know what those little pieces of skin are that stick out of the abscess?  The GI told me it was part of the fistula, just wondering what you guys think?  Also, is there anything to put on it to make it less sore? 

Posted 10/26/2009 10:54 PM (GMT 0)
Hi DMS40,

I had an abscess that popped and drained for a long time. I sort of successfully ignored it until the fistula clogged resulting in a huge abscess. Unfortunately, the infection spread alot down into surrounding tissue (huge cellulitis -- nearly sepsis) because the abscess hadn't been properly opened up and scraped out. I am not trying to scare you, and I don't know your son's situation, and I certainly am not a doctor, but I strongly suggest you take your son to see a colo rectal surgeon very soon. Based on my own experience and several others on this forum who have had serious complications from untreated abscesses, I do know that abscesses do not go away on their own even with antibiotics. Abscesses are pockets of infection that the body has walled off -- so antibioitcs can't really get in there enough to get rid of it. It is possible that your son may get a fistula where the abscess drained out which will not close on its own without surgery.

I urge you to get him into see a colo rectal surgeon -- not a general surgeon but an experienced colo rectal surgeon who knows Crohn's. I suggest one at a teaching hospital because they are up on the latest ways to treat people with Crohn's (different then normal people because we just don't heal the same way). Please read my posts above where I discuss this in more depth.

Here are good websites that talk about abscesses and their treatment:

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

http://www.gitract.info/articles/anorectal-problems/anal-abscess-fistula.php

Take care!
Posted 10/29/2009 10:21 PM (GMT 0)
Thanks FallColors for the info, I have talked to the GI a couple of times about a colo rectal surgeon - even have one in mind that we would like to use as my brother in law is his patient and he is more than happy to meet with us.  Problem is GI won't refer us at this time, (cannot see one without a referral)   he feels that the abscess is steadily shrinking, I live in BC (Canada) ad the only Pediatric GI's are at Children's hospital in Vancouver, so it is almost impossible to switch GI's, and to be honest, this one has been pretty good to us. 

 Before going on LDN his inflammatory markers were very high, after being on LDN for 5 weeks all of his blood work was so much better, imflammatory markers were normal, hemoglobin was normal, WBC normal, so at this time he wants us to stay the course with diet and LDN and re evaluate in February, I'm good with that, but definitely will keep in mind if the abscess walls off, or he gets fevers etc, to get him in ASAP.  

My son told me today that the one fistula he had first is now soft and he can't feel it at all, nothing poking out of it anymore.  The other one is still tender (this one arrived about 2 months after the first one) so we're really praying that this one does the same and by Christmas he'll be feeling even better. 

But again, thanks for the info, and we will definitely keep an eye out for anything unusual.

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