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Daughter struggling with a perianal abscess

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!
 
Location
Ontario
Have you considered birth control to limit frequency of menstral cycles? Probably not what a parent wants to hear for her 17 year old, but if her symptoms are getting worse with her period, may be something to consider, I take mine continuous packs in a row, then 1 period. Much better than having it monthly with Crohn's in the mix. I use it only for this purpose as I have been abstinent for awhile.
 
Thanks for the idea, but this is something I really don't want to have her do. Breast cancer runs strongly in my family, and artificial hormones are supposed to be a big factor in triggering it. I was treated when I was just 41, and want to stay away from anything that might put her at more risk than she already is. If the 6mp doesn't make a difference, maybe I'll reconsider.
 
Nancy,

As you know I cannot comment on the menstrual cycle having an affect on the perianal disease.;)

But, I can tell you that cleanliness is paramount. Taking warm baths with epson salts worked for me in relieving pain and keeping the area clean.

Make sure that your daughter is at least using a Sitz bath a few times a day, especially after a BM.

Antibiotics (Cipro/Flagyl) will help with the abscesses but comes with a price with long term use. Basically all of your GI tract good bacteria are destroyed. You must take a probiotic to restore the normal balance.

Have you talked to your doctor about possibly switching to Humira? I can only speak for myself. Humira closed my fistula in a few days.

Again........keep things clean!

Best of Luck
 
Hi Nancy's, so sorry about your daughters issue. I am currently dealing with 2nd abscess/fistula now and know what she is dealing with. Sounds like you guys are on right track with meds though. Everyone is different so HOPEFULLY it will work out. I would not want to alter her cycle yet either. Hang in there, and give her the emotional support she needs. She's so young to have to deal with this mess!
 
Nancy,

As you know I cannot comment on the menstrual cycle having an affect on the perianal disease.;)

But, I can tell you that cleanliness is paramount. Taking warm baths with epson salts worked for me in relieving pain and keeping the area clean.

Make sure that your daughter is at least using a Sitz bath a few times a day, especially after a BM.

Antibiotics (Cipro/Flagyl) will help with the abscesses but comes with a price with long term use. Basically all of your GI tract good bacteria are destroyed. You must take a probiotic to restore the normal balance.

Have you talked to your doctor about possibly switching to Humira? I can only speak for myself. Humira closed my fistula in a few days.

Again........keep things clean!

Best of Luck
Good suggestions, and these are all things we need to remember! Part of the issue is that she is a teenager:yrolleyes: She hates the antibiotics, because they make her nauseated, make food taste bad etc etc. She dislikes having to take a bath several times per day. We are at the point that I'm going to have to go back to supervising her meds--she isn't taking the antibiotics as prescribed, this time around. She feels like they aren't helping, even when she does take them. . . . honestly she may have a point there, who knows.

She had a horrendous exam in the office yesterday, which may be great motivation to comply with doc orders. We are on call for a "stat" MRI today, and we'll go from there. The doc thinks the drain she has in now, may have gotten plugged in some way, preventing the pus from draining, and forcing the abscess up.

We had a long talk about her options yesterday, she is just frustrated that when she tries to do everything "right", this thing keeps coming back. She wants to be like all her friends, go to the beach party today, go shopping etc, but she's stuck dealing with medical stuff.
 
Have you talked to your doctor about possibly switching to Humira? I can only speak for myself. Humira closed my fistula in a few days.

Again........keep things clean!

Best of Luck
oops, wanted to ask you about this!

She has been on remicade since just after being diagnosed, 21mos ago. They have upped her dose (a year ago), and are now in the process of adding 6mp. Her GI was saying that he doesn't think Remicade is "enough", but that the 6mp will help. As I understand it, if she comes off the Remicade, she can't go back on it, and I thought that "studies show" that Remicade is supposed to be the best for healing fistulas? The surgeon did say that he saw evidence of a healing fistula tract, so the Remicade is helping, just not enough to be rid of this. Just hate to quit on the Remicade too early. Since she is so young, I hate to use up all our ammunition too early, so to speak. If I knew Humira would fix this, we'd switch today.
 
Location
Ontario
I'm on a remicade as well, and while it's helping, my fistulas are not completely healed. My doc said due to the complexity of them, they may never heal completely.
 
Hi Nancy, I'm sorry to hear your daughter is having perianal abscessing. I have been dealing with them in my rectal vaginal septum since 2006. They are very hard to treat and keep at bay some of the time. It can be very discouraging. With me they always seem to come back. I just went through a 6 month course of IV meropenem (antibiotic only available through IV), and nurses coming to my house. They tried after a couple months to take me off but things flared up and I had to go back on. I've been off it a month now and am starting to feel the throbbing begin. I see my GI next week to see what the word is now.
We are all different tho so I'm hoping your daughter will have more luck than I. I chose to go with a temporary ileostomy to rest the area an I'm so happy I made that choice. It's great to not be in so much pain while going to the washroom. I think it has given the meds more of a chance to help things calm down. This is the best I have felt in many years.
All the best to you and your daughter.
 
So we are on for a 4th I&D of the abscess/fistula tomorrow evening--cause that's what any 17 yr old wants to do on a Friday night :/

This time the doc didn't even call me, just had the surgery scheduler call me. Daughter is very angry wanting to know why we are doing the same thing over and over, when it isn't working. I'm thinking that if she can follow all doc orders exactly (sitz baths, antibiotics etc) and it comes back a 5th time, I'm going to have to ask for a 2nd opinion on what to do, because this just isn't how she needs to spend her time.
 
Nancy,
Do you mean they keep putting in regular drains or Setons ? My daughter went through the same thing from Oct 2012-Jan 2013. Fired the pediatric surgeon and took her to Vandy where they said Setons were the only tx for fistulizing perianal disease. This was the answer along with Remicade. You have to keep the tract open and draining to allow it to heal from inside out. Remicade was working too well before we got Setons as in closing the tract before abscess was resolved. Don't give up on Remicade or some kind of biologic. You really need one for fistulizing disease. Setons are uncomfortable in the beginning,but they get used to them. Sitz baths with Epsom salts, Lidocaine jelly, Nifedipine ointment, Calmoseptine ont. are some things that help with discomfort. Don't give up. Try to find a surgeon preferably Colorectal who knows what to do.May have to go to teaching hospital for help.
 
Surgery went well Friday and we were able to go home very quickly. Spent a while talking with her CRS and am very pleased with the plan. He has been speaking to professors and other docs at the university where he did residency. He said if this returns again, he is going to refer us out to a children's hospital where she has been seen before. He also had the obgyn look at her just to see if there was something he wasn't seeing.

We had a long talk with her on the importance of devoting herself to healing right now. No "forgetting" to take the antibiotics, sitz baths often, resting, good nutrition etc.
 
I hope your daughter has a speedy recovery.

Get her to participate here on the forum. Nothing beats first person interaction. She can ask questions without embarrassment here as we all have been there.

Best of luck!
 
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