Perianal Chrohns
This week my 17 year old son was diagnosed with perianal chrohns. He started getting ill a couple of weeks before his 17th birthday. He has lost over 2 stone in weight, had a perianal abscess drained a fistula in the sphincter which is now being drained by a seton band. He has had his life turned upside down, A levels cancelled etc. He has more procedures to go endoscopy and flexible Sigmoidoscopy. His uvula is covered in ulcers and subsequently down his throat. He started steriods yesterday and other stuff later on. I have had ulcerative colitis for 34 years but am in remission. Thank goodness he has myself and my husband to move and clean the seton band. He has been bleeding a bit from the scar tissue of abscess where seton band has entered the rectum and wasn't sure last night if a bit of faeces came out also. Does anyone have one of these his exits the anus and is a loose rubber band with stitches tied on. Any advice would be appreciated. We haven't been given length of time this will be in. He's just over 2 weeks post op.
Sorry he has been going through this. I had perianal disease with Crohn's for over 30 years. Ongoing off-and-on fissures, fistulas, abscesses, multiple setons, bleeding, mucus, etc. I have had feces come through as well and it stings and hurts so bad. I feel his pain. Has he tried any biologics yet? It may not take it away completely, but it may help.
One thing I found that helped was warm sitz baths with Epsom salts. I took several of them a day. I have never had ulcers in the mouth though but I can imagine.
I wrote an article here:
https://inflammatoryboweldisease.net/living/perianal-disease-pain
Unfortunately, the only relief I've had was in 2020 when I had ostomy surgery. I haven't had perianal disease since.
I hope things get better for him and maybe ask about biologics.
Let us know how he gets on.
Vern - IBD Team MemberHi Vern thank you for replying so quickly. Oh I now see why he gets a stinging pain when going to the toilet. He hasn't started biological meds yet halfway through the steriod cycle they are doing injection or IV infusions then the biological stuff. The chrohns is in the lower section of small bowel so obviously closer to the perianal area. I'm really praying that the seton will sort this fistula out and he can live as best a normal life and not get anymore but you can never know with IBD what's next. I guess as its not in his large bowel that's why he's not bleeding. My colitis is in large bowel, luckily for quite a number of years, due to giving birth to my son, my back wall of my womb collapsed into the rectum causing me to have an overflow problem and for some reason putting a halt on the colitis. So I was on the loo up to 15 times a day and bleeding so glad that he's not that way, but I wish I could take it for him. I floss the seton band twice a day and have noticed since taking steriods, and this will be day 3 it is draining quickly. His ulcers have calmed down as well.
have u tried mesalamine enemas yet, not corticosteroid and not suppositories
Hi, he's only just at the start of treatment so we don't really know what is next. He can't have any enemas yet due to the seton band.
