Abscess drainage and loose seton

Hi Everyone,

My almost 15 year old son with ileal Crohns is in a flare. He maintained remission on Pentasa until about 2 months ago. He developed an abscess that was surgically drained but continued to drain and therefore developed a fistula. Video endoscopy revealed no strictures, bleeding or ileal fistula tracks but ulcers in the entire ileum. He only had ulcers in the terminal ileum at diagnosis 16 months ago and his only symptom was slowed growth.

He stopped being compliant with his medication which may be part of the reason for he flare. He felt fine and gained weight and was growing like a weed. He is still growing but has lost some weight and re-abscessed. They now increased his pentasa dose, added entocort and he is having another drainage with loose seton placement tomorrow. The seton will stay in until the Crohns I in remission.

We follow up with GI in 2weeks and with surgery. I know they also want me to consider he may need remicade or methotrexate if entocort doesn't work. I have several questions from those of you who have gone through this surgery regarding care. I am also struggling with the risks of meds as we all do but I guess I should take it one step at a time.

How should we care for the seton? He plays lacrosse and hockey and is a freshman in high school. He won't always be able to take a sitz bath after ever bm. I am going to look for a padded jock for lacrosse. He is better protected in hockey.

Any tips to protect the seton from sticking to things. I am concerned about his jock during contact sports. The doctor was not concerned about him returning to his sports routine. Right now he can't due to pain and it is bringing him down.

Are there any other supplements I can discuss with his doctor to assist with healing his area? I read about oil of oregano and turmeric. He already takes Carlson's fish oil for omega 3's.

We go in tomorrow morning. I gave him some miralax tonight. He tends to get too loose with it but last time he was too firm and it hurt him a ton. I hope to find a balance before he returns to school.

Last, I am a physical therapist and my dad had a severe stroke while visiting us. He was sent back to his city today and I need to get there to assist his care. How long do you think it will take my son to recover and learn to manage the seton before I can leave to care for my dad?

Thanks everyone!

Hello BoyMama2000. Did you get post-op instructions on care for the seton? I did some active things with my seton, but nothing as active as lacrosse. If the doc cleared it, it should be okay, but I would try to avoid a situation where it could be snagged or pulled on. Maybe some very tight shorts under the uniform might help this?

I wore a sanitary napkin in my underwear for drainage, and it also kept things from moving too much. I had a bathroom kit that had some tucks, round facial pads, and balneol. The balneol was recommended to me by my colorectal surgeon, which I used with the facial swabs. I believe balneol is most often used for post-pregnancy relief, but it worked well for the kind of situation you mentioned. I would still recommend that he take a bath when he's home though.

At first, my seton did do a little "settling," where it was much more sore and active for drainage at first. Once my full range of activities was met, however, the soreness and drainage became less and less for me. :hug:

Thanks for those tips! He won't wear the tighter boxer briefs I bought him. He likes them loose but I am still working on him for lacrosse but that seems to be the least of our troubles at this point.

He had the seton surgery on Tuesday morning and he seems to be deteriorating each day. His pain is unchanged, he sleeps all the time and is not eating much at all. He is totally unable to function. This is not what I expected. I am thinking of taking him to the ER. I am wondering if his iron is super low or if he is loosing blood. There was no signs of bleeding on the video capsule 2 weeks ago. Perhaps he is just depressed. Of my 3 boys, he has always had the lowest pain tolerance and unfortunately that is going to be a tough deal since he has Crohn's disease and pain seems to be a part of the game. He had no pain until this abscess developed 2 months ago. He just had growth issues prior to diagnosis.

Any general idea about healing time and function. Should I force him to move around more? I am a physical therapist so of course I tend to try to make people function. Of course, it is very hard with your own teenage kid!

Thanks.

Is this expected? The doctor thought he would be back to school today or tomorrow. I am not sure he will be back next week! His fistula is superficial and simple.

I'm sorry to hear that he's not doing as well as he was. Is he on antibiotics like ciprofloxacin or (Flagyl) metronidazole?

It's Friday today, so I would give a ring to the doctor and let him know that he's not doing as well and whether there is anything you can do? I would take his temperature too and be sure to be able to tell the doc what it is. An abscess is an infection, and the pain can be more than a localized nuisance in my experience. I would ask your son as well if he's down emotionally or run down physically.

Regarding the shorts, they may not be the "cool thing," but I think he will come around when he wants to be very active with the seton. My prediction is that he will come around to it as he gets a better idea about the things that work and don't work for him. It will take a little time to discover these things for himself.

I will share this with you because I think it might help? I got depressed like your son too, but I became very determined as well. I would recommend trying to help him see it as a temporary thing and one that needs be done in the interim. These problems, unfortunately, are difficult to treat and can sometimes be exasperating for the patient. Following instructions, keeping clean, and discovering what works and and what doesn't really helped me feel better about it and to minimize the impact of having a seton after a few weeks. I hope that helps.

The more I think about it, I was lethargic at first too. It certainly is sore for a while. This is not how it felt for me for long though. After a while, I hardly noticed it at all. :hug:

It took me about 3 weeks after surgery before I could even go for light walks, though for the first 2 weeks I was on strict no exercise (had some internal channels/sinuses that the doc stitched off), after about a month and a half I was about to go to the gym.. And three months and I was running again, though it may have been sooner, but I had broken my fibula a few weeks before the surgery and the leg took a long time to heal). Placement of gauze helps with preventing the setons from rubbing, but doesn't always work. Mine had rubbed my skin pretty raw.

i can't remember exactly how long it took mine to heal. I want to say maybe one to two weeks? Once they heal they're not bad at all...I just used wet wipes after using the rest room, made me feel more clean and they don't stick to the seton like tissue seemed to for me. I hope he finds relief soon!

Hi all, i just had two setons placed 7 days ago and just wanted to know how long they drain so much for? Does is stop draining less or does is stay the same?? Also the tiredness and aches due to the sepsis, did that improve straight away or how long did it take to improve. Sorry for all the questions!! I have a cruise in one month and im thinking i will have to give my trip to someone else as im scared i will get sick or an infection out at sea!!

@missybee, Mine drained a lot at first, and then the drainage got less, but still continued and I still had drainage 6 months later. Not sure if that is the case for everyone, but it was for me. I also had a cruise after my seton surgery and i told my doctor about it and he said i was fine to go, but he did write me a prescription for antibiotics in case it did get infected while i was at sea, I could start taking them. I never needed them, but it was good to know I had them just in case.

@justbreathe8 - Thank you so much for your reply!!!!, it helps to talk to other people who have been through the same thing. Another quick question!! Did you swim on the cruise and were you able to walk etc ok?? Its good to hear that yours is healing well.

Yah it def helps to talk to other people! I love this site! Yes, my surgeon actually said to be in the water all the time if I wanted. I was able to walk okay, and I kept gauze betweenu cheeks. When I knew I was going in the water, I would go to the bathroom and take it out and then when I was done I'd just go back to the room and put on something dry and replace the gauze. You might still have some pain and def have some drainage, but there's no reason to cancel the cruise. Just go an relax!

Oh justbreath8 thank you you have made my day! I thought swimming in the ocean would be ok but wasnt sure about the pools on the cruise due to bacteria etc. So how is yours now? Sorry for all the questions. I hope your feeling better now and so glad that i can talk to someone who understands.

I would call ur doctor and ask for sure though. Everyone is different so who knows what your doctors opinion is. No prob with the questions! Ask as many as you want! I had a million questions I asked here! And I still have questions about mine now! I had the setons removed 2 weeks ago. Right now I'm not sure how I feel. I'm not sure what is normal and what is not. I have more pain now then I did a week ago. But it's not really sharp pain, it's more like pressure. But it comes and goes. And I have a little bit of yellow drainage. I have no idea what is normal and what is not because I've never had advancement flap surgery before! I'm just super worried bc I want it to work so bad! I don't want to start over. I have. I idea what is supposed to be happening now or how I'm suppose to feel! Ugh. So I feel you pain with having all these questions! Lol