Perianal Complications?

[Ams-Qld]

Hey everyone, I have been struck reading the threads lately by how many of us have children with perianal complications to their Crohn's disease, eg fistula, abscess, skin tags, fissure, etc...How many of us are there?? Just wondering if we can share info on date of perianal complications in relation to diagnosis of Crohn's, treatments tried, successes in healing, etc. Thanks!!
To start off my teenaged boy developed an abscess 2 years after diagnosis while on Imuran (though unbeknownst to me not fully compliant). He was on flagyl for 10 months, cipro/flagyl combo for two months; and still has a fissure, multiple skin tags, and a large ulcerated mass in his rectum covering the fistula site! We are now looking at Remi/Imuran combo, EN, and iron infusions

 

[Brian'sMom]

My son developed an abscess/fistula 4 years after diagnosis, This was his 2nd bad flare. In October (3rd bad flare) the abscess appeared again in same place. Has dealt with a fissure off and on. (It's healed at the moment). Skin tag. My son also has an ulcerated area in his rectum. This has been an ongoing area of trouble for us. (In slight flares...we don't have abscess trouble)

 

[Mom2oneboy]

My son developed a perianal abscess 2 yrs ago and that's what led us to his Crohn's diagnosis. He's been on Remicade for a little over a year now and abscess has remained quiet. For us I think it's a good indicator of controlled disease versus uncontrolled.

 

[Mehita]

My 13 year old got his first abscess and fistula last month, five years after dx. The abscess was about 1cm under the skin, the size of a prune and had a very small fistula connecting it to his rectum. I was shocked at how quickly it grew and symptoms of infection set in. Thank goodness he was already in the hospital at the time because boom, all of a sudden he had a crazy high fever. He was put on the big IV abx and started Remicade and it is almost gone now, just four weeks later.

Prior to this he was on Azathioprine for six months which did nothing for him. Essentially he was untreated since the Aza wasn't working and I think that over time his Crohn's just got out of control again. Again, ha! It's never been under control until now with Remicade.

He is finishing up a two week course of Augmentin and then he's done. Hopefully Remicade will keep things under control from here on out.

 

[polly13]

Lucy had a skintag from about 14 months - very visible fistula at 23/24 months, diagnosed at 29 months - all her symptoms are perianal - 5 fissures were visualised on the scope. She has been on some form of treatment since diagnosis, flagyll, flagyll cipro prednisone, 6 mp, 6mp flagyll cipro, infliximab 6 mp, and now humira, methotrexate and cipro and happy to say that fistula looks to be closing up after 6 months. I was able to visualise one that was roughy the size of the top part of my thumb and about as deep. It oozed and bled continuously, and she was in so much pain. But the great thing about Lucy is now that she isn't in pain all the time anymore she is enjoying herself and doing all the things that all five year olds do

 

[DanceMom]

We've had one small fissure that healed pretty quickly with Flagyl and Cortifoam. She's also had some sort of perianal rash off and on for the past year or so. Nothing we've tried seems to help the rash.

 

[Ams-Qld]

Thanks, you guys are awesome! So good to know we are not alone in this struggle, that there are other parents who understand the complexity and intensity of the issues we deal with daily, especially concerning the 'embarrassment' and delicate nature of perianal disease. I know for our son it is a fact of life that he wears sanitary pads and leaks, it is just not what he wants to share with his friends!! So sad our kids are dealing with these things and often on top of small and/or large bowel Crohn's :ghug:

 

[Ams-Qld]

DanceMom, we have not had issues with a perianal rash, but it does not sound nice :eek2: I hope you can find something that works for you soon!!! :hug:
polly13, I cannot imagine dealing with this from such a young age it seems like you have tried it all, so glad she seems to be doing so well atm, I pray it continues forever!! :kiss:
Mehita, I understand so completely as our boys are the same age. Our stories are so similar, my son's Crohn's worsened and developed into fistulising/perianal complications while on AZA. He is now probs starting aza/remicade combo next week. So happy to hear your man is beginning to finally do well on remicade, hopefully that will be us soon too!! :hug:
Mom2oneboy, did the fact your son presented with perianal complications mean that he was diagnosed very quickly? I am really glad he is also doing well with remi, onwards and upwards!!!:hug:
Brian'sMom, our boys also sound quite similar atm do you have any tips for me with the fissure healing? Does it cause your son pain when going to the toilet? I can't work out whether his pain is mainly from the fissures/skin tags/fistula or the ulceration in the rectum, either way it is making him miserable. Hoping your boy continues to trend up and up!! :hug:

 

[Sascot]

Just wanted to send hugs. Feeling very depressed myself at the moment. Was really not expecting the plug to fail after only 5 days! Now I have to worry about things not healing properly and keeping a watch out for any abscess forming. Wish I could have a more encouraging story! Good luck with the Remicade I really hope it works well!

 

[Ams-Qld]

Thanks Sascot, I can only imagine how devastated you all must be atm. So much research and worry and appointments and then the concern of surgery, to just have it fail so quickly praying something will work well for your ds really soon!!!!!! :kiss::hug:

 

[Jenn]

My son's first abscess was drained, never healed, had surgery to lay open the fistula and that led to his Crohns dx. We had overlooked his slow growth, fatigue, and anemia. The 2nd abscess was treated with IV abx. Both times they were painful red lumps under the skin. He started with skin tags about the same time, and has a partial prolapse but w/o pain now. Before the abscesses, he had a rectal strep infection, which I think triggered the Crohns.

 

[Mom2oneboy]

Mom2oneboy, did the fact your son presented with perianal complications mean that he was diagnosed very quickly? I am really glad he is also doing well with remi, onwards and upwards!!!

He had surgery on the abscess in December and the following January it came back. The doctor who performed the surgery moved to California so we had to see a different one. That surgeon immediately said he wanted him to see a GI asap and that his first thought was Crohn's. He got the official diagnosis in February. I'm SO grateful for that surgeon!! Looking back though I can see that my ds was having symptoms that prior summer.

Thanks for starting this thread!

 

[Mom2oneboy]

DanceMom,

What does the rash look like? Is it just redness or is there raised bumps? My son used to get a lot of redness that was super tender to touch and ended up being quite painful to even sit. I tried all sorts of creams on it and Desitin worked the best along with warm baths after every bowel movement.

 

[DanceMom]

The area is red and inflamed looking with small red bumps. She says it burns and itches. We've tried desitin, butt paste, hydrocortisone cream, and a few other creams as well. She would also sleep without underwear to let the area breathe. The rash just seems to come and go as it pleases but thankfully it is gone for the moment.

 

[Mom2oneboy]

The area is red and inflamed looking with small red bumps. She says it burns and itches. We've tried desitin, butt paste, hydrocortisone cream, and a few other creams as well. She would also sleep without underwear to let the area breathe. The rash just seems to come and go as it pleases but thankfully it is gone for the moment.

Bless her heart! This disease is downright brutal sometimes. Hopefully, that rash has hit the road for a lengthy period of time....forever would be nice!

 

[Gmama]

LJ developed an abscess one year ago which led to his dx in February 2013. Then in march 2013 we had a seton placement for 6 weeks. Currently, his fistula does not cause him any pain but is still open and draining. He has had a bad reaction to cipro, flagyl, imuran, and Humira simply did not work. We are now in the process of switching from Humira to remicade. He does take pentasa and entocort as well.
I hate that our kids have to deal with fistulas & abscess, such an awful part of this disease. I also hate that I'm always worried that another abscess/fistula is going to form.
I want to hear from parents that had success stories with closing up these wretched devils

 

[Ams-Qld]

Wow, so sad to read everyone's story, but so good to get us all in one place :ghug:
DanceMom and Mom2oneboy, that rash does not sound fun thankful we have not had that so far, glad they are both free of it atm!!
Gmama I know what you mean about the worry of these darn things developing, our son just had an MRE to check his small bowel (and the Dr forgot to order a pelvic set to check his fistulae :ybatty and so we now have to have a second MRE!!! The opening in his rectum is closed (though covered by a large ulcerated mass ) and so we are waiting for the pelvic mre results to see what has happened to the 4 sinus tracts. Will let you know.

 

[my little penguin]

DS develop rectal prolapse in Jan of 2011 which was supposedly due to constipation.
We were told it would heal in ten days by the pediatrician .
It didn't so I took him to a Gi right away.
Things went down hill from there FTT , abdominal pain and chronic vomiting.
He was finally scoped in Sept of 2011 and dx.
The rectal prolapse went away finally with remicade a year later but came back when we stopped remicade .
It took four months on humira ( at the right dose ) before the prolapse stopped again.
No other rectal meds helped at all.
He aslo got numerous red raised rashes in the perianal region when his prolapse was active.
Caloprotectin plus air and abx creme helped to keep it from bleeding .

 

[polly13]

Gmama Lucy's looks to be closing up, there seems to be new skin forming and the new skin looks normal, however I don't the area will ever look normal but for now it definately a lot smaller and it is not angry looking.

On the creams we used a dressing called activon for a while basically it is a gauze dressing impregnated with Manuka honey we used this in conjunction with medical grade Manuka honey - it didn't help Lucy but my GI nurse said there has been some studies and it is thought to help - might be a worth a try it certainly wouldn't do any harm. I also tried using aloe Vera gel and while Lucy found it really soothing it is quite sticky making poo adhere to it so cleaning was a nightmare- she ended up siting in the bath for two hours. Also tried the bathing after every bowel motion did not help found using the shower head much more effective. Glad to say we have now graduated to toilet paper ( it's funny how the small things make us happy!) we tried so many creams that I have lost count and the humira is the only treatment that had any impact at all

It's great to have a thread about this as it is not a conversation that you would have over lunch!!!! I remember when Lucy did her first poo in two years without crying I wanted to put it on the national news !! But nobody except those of us on here could truly understand what a big event it was in our lives!

 

[DanceMom]

The rash came back today! Maybe I need to learn to shut my mouth when things are going well.

 

[Catherine]

Any chance it a yeast infection? dd. used to get them as a baby every time I had orange juice.

 

[Ams-Qld]

Oh no DanceMom!!! I honestly had never heard of the perianal rash before! So glad now I started this thread too because I now know to look out for it!!!!
MLP that sounds like a lot to deal with!! Can you please explain more about the rectal prolapse? Cause it is also something we have not had to deal with and it would be helpful to know what actually happens, what it looks like and your advice on what to do??? Thanks!!
This morning DS woke at 6:30, placed his calmoseptine, went to the toilet (I wince every time I hear him in such pain and trying to 'breathe' through it quietly ) he then had his sitz bath and then shower and then was soo exhausted he went back to bed at 7:30am!! Will probs take him to school mid-morning like yesterday...

 

[Sascot]

So sorry to hear that. Awful to see them like that. Hoping for a speedy healing once he starts the Remicade!

 

[Brian'sMom]

Ams-Qld, We saw a dermatologist about the fissure. She prescribed Mupirocin 2%. It worked really good for us. Its an ointment.
Desitin melts too much and my son hates that wet feeling. The dermatologist recommended Triple Paste for the rash. Its thick and doesn't melt as much. I found it at Walmart