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At a loss

I've posted here just a couple of times, and I'm back wondering if anyone has any input for me. My daughter is 17, has had Crohn's for 2 yrs now, and has been on Remicade almost that long.

Since February she has had a recurrent peri-rectal abscess that we can't get a handle on. Each time, they have placed a drain, which would drain out the pus, then it would heal, drain would come out, and in about 3-4 weeks, it would come back. The last drain they placed, we decided to leave in for a "long" time. Over the last few days my daughter noticed that the drainage is more serosanguinous, not the pus like drainage she had before. She also said she can feel the abscess forming and moving up, away from the drain.

We are in the process of starting 6mp to hopefully get this under control. One thing we noticed is that there is a direct correlation between her monthly cycles, and when the abscess recurs. I'm convinced it isn't a coincidence, it has happened 4 times this year, and once last year.

Obviously, I'll be calling her docs in the morning, and we will start the rounds again--we've had IV and by mouth antibiotics, a few MRI's, 2 surgeries to place drains, and one placed in the office. Is there something I'm missing here? How come we can't get this thing solved? At 17 she is really not thrilled to be dealing with this!


I'm so sorry to hear about what your daughter is going through. I am suffering from a perianal abscess myself right now which is not responding to antibiotics. I wish I knew the answer for you but it seems abscesses can be difficult to treat. It's really not fair that a young girl like your daughter should suffer with this.

We also have a forum for abscesses and I will copy this post there as well. Hope you find the support you need and more importantly healing for your daughter.


Staff member
So sorry your daughter is dealing with this! :( I wish I cud offer you some advice but this isn't something I've dealt with. I'm going to tag in Sascot as I believe her son may have had something similar. I hope the 6mp can bring her some relief! :ghug:
I'm so sorry your daughter is dealing with this, and for such a long time. From what I gather, the treatment of fistulas and abscesses can be challenging. Sending loads of healing thoughts your daughter's way.
Hi, yes my son did really suffer from an abscess last year - it was horrible to watch. After 3 months of various antibiotics they finally did surgery. The problem with antibiotics is once an abscess is formed the antibiotics cannot reach the middle of the abscess where all the infection is.
We never had a drain put in - the surgeon went in and "scooped out" all the diseased tissue so Andrew was left with a big hole in his bottom. Then we had 2 months of silver dressing packed in (he had to use gas and air) 3 times a week then twice a week and eventually it closed up enough that we could just squirt medical manuka honey in with a tiny syringe (no needle). That way the wound healed up from the inside out and thankfully the abscess hasn't recurred.
It might be worth asking the surgeons to take out all the abscess and do the same. Silver dressings are really great - our IBD nurse used to be a tissue viability nurse, so she know how to heal wounds. They just stay inside the wound until the next dressing change and it speeds up the healing process.
Good luck getting it sorted!


From somebody who has had a lot of experience with abscesses, I truly feel your daughters pain. I've had two surgeries for the same abscess so far and now doing what I can to put off another surgery with a different abscess. Unfortunately, once you have them you're pretty much stuck with them. Your first goal will be to make sure they're draining. Antibiotics are absolutely useless if the abscess is not open and draining. Cipro and Flagyl are the two most common antibiotics used as well.

I'm going to tag Xx_LittleMissValentine_xX as well because I don't think she should be on Remicade while she has active infections. Because crohns is essentially an "overactive immune system" the medicine we are often given is used to suppress the immune system and therefore decreases our chances of fighting infections. I know Holly (LMV) wasn't allowed to use Remicade until her abscess was healed because of that reason.

Abscesses are really awful. They're practically my only symptom from crohns and personally, I think it's one of the worst symptoms you can have. I think the most useful advice I could give is to have lots of baths (in the tub, not those sitz baths you use on the toilet) with warm-hot water. You can use epsom salt as well which is supposed to help but I've just been using water. She can also sit on a heat bag. I feel like for me the heat from the bag allows the hole in the abscess to expand and therefore drain.

Lastly, for me personally I have the whole in my abscess (where it drains) at the "top". I lay on my back on the floor and put my legs up on the side of the tub so the whole is now technically at the bottom. I push on the abscess and force and pus/blood to come out and it seems to be really effective for me. Now, of course your daughters hole might be in a different spot, but for the me the pain of pushing and forcing drainage is definitely worth the relief I feel once it is drained and released of all the infection
I so appreciate the responses. So many things to consider. At first, her surgeon didn't want her to get the remicade till the abscess healed. The GI doc feels that if she doesn't get the remicade, she will get more fistulas, and her crohns will get out of control. Vicious cycle if you ask me. At least the docs are talking to each other!!

My big goal was to get her through high school graduation--grad night, the ceremony and a party for her. That was all this last weekend, so at least she "got to be normal" for a bit, even if she had to take narcotics to make it through graduation :eek:

Have a call in to her surgeon now, hoping he gets the message quickly, and sets up an MRI to see what is going on. One other thing I'm wondering about--our current surgeon is excellent, very honest with us, and I have a lot of confidence in him. However, he seems at the end of his expertise, he said he is not quite sure why it keeps coming back. Can he refer us to a university based program, or do we have to ask for that? I'm happy with all her doctors, don't want to switch, but I'm wondering if a consult from a bigger medical center might be helpful. Not even sure if insurance would cover that.
Sorry to hear this! I'm sorry it keeps coming back!
What K said is right about me not being able to start Remicade due to abscesses. But I'm not sure what the situation is when you are already on it.
I would definitely recommend an MRI scan since it could be connected to a fistula which is why it keeps reoccurring.
This was what happened with mine and since having it operated on in Jan, I have had no problems. (Fingers crossed!!).
Good luck with anything and feel free to ask more questions!! x


I don't know if anyone will be able to tell you why they keep coming back. They will say its an aggressive state of her disease. The only thing they can do is try to treat it.
It sounds like we really need to focus on getting her crohns under control, and the fistula/abscess will follow. She's had this one "cleaned out" under anesthesia twice, and both times a drain placed to help it drain and heal "from the inside out". This time she feels like the thing is forming *above* the drain, and growing upwards. So frustrating!
Sounds like an MRI is the way to go. Why don't you speak to the surgeon you like - explain that you would like to stay with him - and ask him to get a consult with another expert to decide how to proceed. When I asked our surgeon about surgery for fistulas, he said he would look into it and talk to other surgeons who had dealt with it.


Staff member
sorry I have only suffered from intestinal abscesses so can't help with perianal ones. i was taken of remicade when I had the abscesses but that was mainly because it wasn't helping anyway. If it prevents new fistulas forming them it may be worth staying on it but that is a decision for you with proper doctors advice.
My abscesses were eventually removed surgically with bowel resection and the creation of a permanent ileostomy. There were no drugs available to treat my crohn's so this was the only option for me.
The fistulas, fissures and abscesses forum and support groups should be able to give you lots more information and help. There are a lot of people there who suffer from perianal disease and abscesses.
sorry I couldn't be of more help and all the best for you and your daughter,