Newly diagnosed, and with fistula and abscess

[chc]

This is my first post. I'm the mother of an 18 year old who was just diagnosed with Crohn's. Her first symptom was an abscess with a fistula. Of course, we didn't know what it was at first. It ruptured on its own, but the abscess was packed by a PA in the surgeons office. After 4 weeks, she continued to feel terrible and began to have a fever and chills. I took her to the ER, and she was admitted to the hospital and put on intravenous antibiotics for 6 days. In the hospital they packed the wound daily. She's been home for 4 days, and I pack the wound daily. She's taking two different oral antibiotics. The doctor and the wound care nurse discouraged sitz baths. In this thread, it seems that you all use sitz baths. Has anyone been told not to use a sitz?

The doctors said they cannot begin to treat the Crohn's until the abscess is healed. How can I be sure I'm packing it right?

Also, how can I help her deal with the depression and anger of the diagnosis?

 

[Grumbletum]

chc, I hope you don't mind. I've moved your post to its own thread like the others suggested.

 

[KWalker]

I can relate and know what your daughter is going through. I am only 22 myself and have been dealing with abscesses for the last few years now. Back in November and again in December of 2011 I had two surgeries and spent 10 days in the hospital because I left an abscess untreated and ended up paying for it with a 7.5" incision because I had an abnormally large abscess that needed immediate attention.

I'm going to take an educated guess that the two oral antibiotics your daughter is on are Cipro and Flagyl. I have a bit of experience and know they helped me quite a bit..while I was on them. For me unfortunately, once my prescription was done the problems came right back..possibly because I was only on a 2 week period of them so they might not have had time to fully become effective.

Do you know which kind of packing you/the nurses have been using for her abscess? It's important to be really cautious with packing because I ended up in the hospital again because of the nurses that did my packing and they used a packing that required extra measures and they failed to do so and it caused my infection to spread and become much worse.

As far as the sitz baths, I too was told to avoid the baths at the beginning. To be honest I'm not too sure why but after the first week or two of recovering at home I was encouraged to take them. I think it could possibly be because the wound is so fresh that basically you (your daughter) would be laying in all that infection. That would be my guess.

After I was released from the hospital I was encouraged to take epsom salt baths (sitz baths) to help relieve pressure, ease pain, and promote healing. A sitz bath is actually a thing that goes in the toilet and you only sit on it so your butt goes in the little thing so soaks that way but for me and many others we take actual baths with epsom salt and I personally find it really relaxes me and helps with pain

 

[chc]

Right way to pack?

Thank you for moving my post. I'm so new at this, I don't even know the mechanics of a forum!

KWalker, we are packing the abscess with 1/2 inch plain packing strip soaked in gentamicin. We irrigate the hole and external wound with gentamicin first and then packed with soaked packing strip. We cover it with sterile gauze and a thick pad to soak up discharge. The wound is about 2 1/2, maybe 3 inches deep. I am very careful to sterilize all equipment that we use every time. Does this seem right to you?

 

[KWalker]

Yes that sounds good. My main purpose was to try and see if you were using Silvercel to pack the wound. Silvercel is a strip that contains silver which is designed to kill off the infected area to promote healing. Because the silver is known to kill off the tissue, it requires a protective gel to keep the good tissue safe. My wound care nurses did not use the gel so they basically ended up killing the good tissue and as a result the infection ended up spreading.

If you have any questions don't hesitate to post them or send me a private message

I don't know if you guys had to buy your own supplies but for me it was provided so everytime the tweezers, gauze, packing, etc touched the ground we had to throw it out. Its also important to wear gloves as well.

 

[kmole]

Hi chc. I was 19 when I was diagnosed and had a fistula and abscess as well but mine was all internal thank goodness. My mom had moved across the country a few months before my diagnosis so it's really good your daughter has you to be there. You sound like a really caring mother, helping her with her abscess. I think the best thing you can do is to be patient with her when she gets upset and go with her to doctors appointment and maybe point her to this forum, because I know I found it to be extremely helpful when I got upset. Also, if she is feeling up to it, doing things fun to take your mind off of the disease helps too. I wish you two the best

 

[Sascot]

I was also going to mention the Sivercel - my son had a bad abscess operated on and the IBD nurses said that silver has been shown to really help the healing process. It certainly seemed to work well for us. I hope your daughter manages to cope - and yourself as well. Hope everything heals well for her!

 

[sawdust]

Also, how can I help her deal with the depression and anger of the diagnosis?

Welcome, chc. I can't directly answer your question here, as I believe everyone finds what helps them deal with this in his or her own way. This disease can be without pity and quite cruel, especially for younger folks, like your daughter.

When I first got diagnosed, my GI encouraged me to learn more about IBD, to seek out a support group, maybe see with the CCFA had available that interested me. But I dismissed all this advice, until next time...

I felt better to learn a little more about my disease, and to engage in a community like this one. Like anything else, once she gets a better grasp of things, I think you'll see her viewpoint change a bit. Abscesses and fistulae can can be even more frustrating, as they tend to be quite unpredictable and the success rates for treatments vary a great deal.

I don't say that to discourage you, but to magnify the kind of community and camaraderie that exists in a forum like this one. I don't know why, but it felt so good to find people that not only could I talk to about some of the undesirable aspects to this disease, but who could understand me like no one else could. I always tell folks about the "patient's perspective" here. A doctor can tell me technical things, buy being able to read about and ask questions of other patients is especially calming and confidence-building to me as a patient.

Many people in my life know that I have had more colonoscopies than any one person should, so I am regularly someone who people feel comfortable coming to be with questions about prep or the procedure. These are usually people with several decades of life experience on me, but they're quite concerned about the unknown. Frankly, I think a colonoscopy is no big deal at all and as far as procedures go, very much preferable to alot, but it's all about perspective.

I was diagnosed in my late twenties, but there are alot of younger members here, and alot of parents with children with IBD, who can help you and your daughter do teenager things with IBD. I do believe we have a Teens Only forum here as well. David, our fair administrator, could probably tell you more about that if you think your daughter might like it.

I would also encourage you to develop a relationship with a GI with IBD experience and a colorectal surgeon your daughter likes. The do's and don'ts on IBD seem to change as new discoveries are made and it's good to have someone you trust to follow these trends. In my opinion, it's also good to have someone who really knows you when it's time to make decisions about your treatment, prescriptions, surgeries, etc.

I hope what I'm saying sounds positive to you, because I certainly mean it as a positive. None of this disease is ideal, or even desirable, but you do learn over time how to manage things in your own ways that minimize impact on your life. :hug:

 

[araceli]

Hi and welcome chc. Best wishes for both of you. I am the mother of a 16 year old girl also with fistulas. It was hard for her at first but know she is more optimistic. I told my daughter its ok to feel bad for one or two days, after that she has to take control and not let Cronh's live her life. any time she gets angry again, I just take the punches. Everything is going to be better.

 

[AlliRuns]

To put s positive spin on it, at least she got a diagnosis! My first symptom was the same and it took me over 7 years to get diagnosed. I didn't even know what a fistula was when I got my first one, I went to the ER in rural Newfoundland and the doc told me to not wear tight pants.. Yup true story.

Hope your daughter gets the treatment she needs and fast!

 

[KWalker]

I was also going to mention the Sivercel - my son had a bad abscess operated on and the IBD nurses said that silver has been shown to really help the healing process. It certainly seemed to work well for us. I hope your daughter manages to cope - and yourself as well. Hope everything heals well for her!

Yes Sascot, I can work really well if done properly

 

[David]

Greetings and welcome.

We're talking about perianal fistula and abscess, right? Them saying that they can't treat the Crohn's until the abscess is healed is concerning to me. Because it's wrong in my opinion.

1. At the very least, a very conservative approach would be to use exclusive enteral nutrition. Enteral nutrition is shown to be highly efficacious in Crohn's disease and can be utilized in perianal disease.

2. Give this article review a read. It is a review of an article from an IBD text for medical practitioners regarding perianal Crohn's disease.

3. Please give this thread a read and pay specific attention to what, "Aussie" says.

As sawdust mentioned, we do have a teen forum which is located here.

All my best to you and your daughter.

 

[chc]

Wow! I am overwhelmed by the help and support you have all given. We have our first post hospital doctors visit with a partner of the surgeon who was assigned to us in the hospital. According to our surgeon, his partner has lot of experience with Crohn's. With the information that everyone provided, I feel I can prepare a good list of questions. The GI doctor we want see requires a referral, so I hope the surgeon will give us one.

David, yes she has a perianal abscess. I was baffled by the comment that they wouldn't treat the Crohn's until the abscess healed. I"m sure they were referring solely to immunosuppressant drugs, but it seemed to my husband and I that there were many things to consider. We were sent home with the instructions to resume a regular diet and find a GI in 4 weeks. We didn't want to waste a second, and we have done what we could with the information we could find to change her diet, add vitamin supplements, and probiotics. I will carefully read all the information you provided. This is so helpful - sincere thanks.

I will also encourage my daughter to get on the Forum. My first experience here has proved so very beneficial that I'm sure hers will too.

Thanks to all.

 

[David]

Kudos to you diving in and learning. The more you can learn the better. You'll find there will be times that you will need to advocate for your daughter and it may make all the difference in the world for her. And we're here to help every step of the way

 

[Mara114828]

To put s positive spin on it, at least she got a diagnosis! My first symptom was the same and it took me over 7 years to get diagnosed. I didn't even know what a fistula was when I got my first one, I went to the ER in rural Newfoundland and the doc told me to not wear tight pants.. Yup true story.

Hope your daughter gets the treatment she needs and fast!

May God bless you! My son was diagnosed last November. I didn't even know what Crohn's is or a fistula! This summer was spent i. And out of Hospitals and emergency rooms....what a nightmare!

 

[Mara114828]

This is my first post. I'm the mother of an 18 year old who was just diagnosed with Crohn's. Her first symptom was an abscess with a fistula. Of course, we didn't know what it was at first. It ruptured on its own, but the abscess was packed by a PA in the surgeons office. After 4 weeks, she continued to feel terrible and began to have a fever and chills. I took her to the ER, and she was admitted to the hospital and put on intravenous antibiotics for 6 days. In the hospital they packed the wound daily. She's been home for 4 days, and I pack the wound daily. She's taking two different oral antibiotics. The doctor and the wound care nurse discouraged sitz baths. In this thread, it seems that you all use sitz baths. Has anyone been told not to use a sitz?

The doctors said they cannot begin to treat the Crohn's until the abscess is healed. How can I be sure I'm packing it right?

Also, how can I help her deal with the depression and anger of the diagnosis?

Hello, i just went thru the ordeal with my 20 years old son. Never heard of Crohn's disease before, nor did I now what a fistula is until early this year I would ear my son screaming in pain every time he had a bowel movement. You got to fight like a warrior with doctors, our first one finally admitted he was not capable to cure him and he gave us a referral for another doctor who turned out to be the Best! He is doing better now, i wish you and your daughter the best!