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New member and question on child's Perianal abcess

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Crohn's Disease
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Posted 9/3/2011 6:35 PM (GMT 0)
Hello All

My first post on this forum and hoping you can provide some guidance.

First some background:

I live in the UK and my 10 yr old daughter was diagnosed with CD about 8 months ago. She has what our consultant refers to as "left-sided" Crohn's - last 12 inches (30cm for our metric friends.....) or so of the colon is moderately inflamed and she has perianal disease. She is currently on:

- 1.5gm Pentasa
- Prednisolone enema every other day
- Tacrolimus applied topically to the bottom
- Modulen supplement to her diet

Her bowel movements are quite well controlled - she goes once/day and doesn't normally suffer from diarrhea or blood in the stools. Her bowel movements can be painful with some fresh blood on the tissue. Her general health is pretty good.

Our consultant's biggest concern is a perianal ulcer which has not responded to any of the treatments - initially he thought it might be a fistula but a colonoscopy this week confirmed it wasn't but that it was a deep and wide ulcer. The consultant expressed some serious anxiety that we needed to use stronger treatment to get the ulcer under control - otherwise there was a risk of it damaging the rectal muscles. He wants to put her on a short-term combination of 6-MP and infliximab (remicade) and then longer term 6-MP on its own. The other option is a temporary colostomy to let the ulcer heal but this seems a last resort to me.

My questions for all you knowledgeable people are:

1. Does the suggested course of action seem appropriate? I am frightened out of my wits at the thought of the infliximab / 6-MP after reading the potential side-effects.
2. Should we try oral steriods first?
3. Is there anything non-medical we can do to help the ulcer heal?

Many thanks for your help and assistance.
Posted 9/3/2011 7:55 PM (GMT 0)
There was a paper recently published about the most effective treatments for Crohn's, and the biologics were the ones that came out as clearly superior. Especially for those of us with fistulizing disease (I don't have that, so I'm not sure if the ulcer is consistent with fistulizing Crohn's). You might also post your question on the UC forum - I think many people with perianal ulcers use antiobiotics with good results.

I'm glad you came here and I hope you stick around. There is a ton of good info on the forum. It's kind of slow on the weekend, so be patient.
Posted 9/3/2011 10:37 PM (GMT 0)
I've been on 50 mg/day of 6MP for 7 years, with no discernible side effects. It's literally been a lifesaver for me. But I don't know anything about whether it's a good idea to give to a young child. You'll have to do some research and see what the people on this forum can come up with. I wish you and your daughter much luck with this, especially with getting rid of the ulcer.
Posted 9/4/2011 3:21 PM (GMT 0)
Hi CrohniesDad and welcome!

I'm also UK-based and it's nice to see some other Brits on here. I'm sorry to hear of your daughter's diagnosis; it sounds pretty tough for her at the moment but at least you're getting some good care.

re: the medication recommended. I haven't been on infliximab myself; though I came very close last month before my prednisolone finally kicked in! I'm currently on 4.8gm of Mezavant (similar stuff to Pentasa) and 75mg of Azathioprine (type of 6MP).

Generally this has worked very well to stabilise me, Honestly I haven't had any effects at all from the 6MP. However I am 25 - I would think a concern for your daughter is all the childhood injections, as I know you need to check with a doctor before you have them. It might be worth talking this through with her gastroenterologist or a specialist nurse if she's going to be on 6MP for a while.

As for Infliximab, my doctor's view was that, whilst risks are there, generally they were low and certainly not as bad as having an active flare. There are a lot of people on here for whom biologics have done absolute wonders and really turned their life around.

Essentially, I think your doctor & gaining your own knowledge is the best guide here. It's important to know the risks, and if you are scared to make sure you discuss them. It might be worth noting your concerns next time you visit the specialist to ensure you talk through each one.

A deep perianal abscess is damaging in and of itself, and incontinence from a damaged rectum would be absolutely awful. It's up to you what happens, but it sounds like this treatment plan might help your daughter improve her control of the disease.
Posted 9/4/2011 11:19 PM (GMT 0)
Very good point about the childhood immunizations. You need to sit down with a doctor you trust and work through this, to figure out what's in your daughter's best interest. You and she will get through this. I hope it all gets better quickly. Best of luck.
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